Recommended for Practice

Psychoeducation/Psychoeducational Interventions

for Caregiver Strain and Burden

Psychoeducation or psychoeducational interventions encompass a broad range of activities that combine education and other activities such as counseling and supportive interventions. Psychoeducational interventions may be delivered individually or in groups, and may be tailored or standardized. This type of intervention generally includes providing patients with information about treatments, symptoms, resources and services, training to provide care and respond to disease-related problems, and problem-solving strategies for coping with cancer. Interventions may include use of booklets, videos, audiotapes, and computers, and formats may be interactive between healthcare professionals and patients and caregivers, self-directed via use of CDs and other materials, online, or delivered telephonically. Studies using psychoeducational interventions tend to vary substantially in specific content, format, frequency, and timing of the interventions. For this reason, there is limited ability to currently examine the relative effectiveness of different formats and delivery methods. Highly specific content approaches, such as mindfulness-based stress reduction and cognitive behavioral approaches, are identified in these resources as separate interventions, rather than incorporated into overall psychoeducation.

 

Systematic Review/Meta-Analysis

Applebaum, A.J., & Breitbart, W. (2012). Care for the cancer caregiver: A systematic review. Palliative and Supportive Care, 1-22.

Purpose

A systematic review was used.

Search Strategy

  • Databases used for the literature search were PubMed, Embase, CINAHL, PsycINFO, and Cochrane Library.
  • Key words were cancer caregivers, caregiver burden, and psychosocial interventions.
  • Literature addressing the nonprofessional caregivers of people with illness/disease AND the psychosocial impact of the informal caregiver (IC) role AND interventions or coping mechanisms that ease negative impacts of the role was included in the search.
  • Noncaregiver participants, nonpatients with cancer, and foreign language articles were excluded from the study.

Literature Evaluated

  • A total of 2,199 references were retrieved.
  • Two authors performed an initial article title and abstract scan and narrowed the sample to 76 articles.
  • Both authors reviewed each of the articles for inclusion and resolved differences of opinion through discussion.

 

Sample Characteristics

  • The review included a final number of 49 studies.   
  • Sample range across studies was 8–760.
  • Of the studies reviewed, 36 described in-person interventions, 3 described phone-based interventions, and 10 described combined in-person and phone-based intervention strategies.

Phase of Care and Clinical Applications

  • Multiple phases of care    
  • Pediatrics; elder care; palliative care

Results

Eight major categories of intervention were identified: psychoeducation, problem-solving/skill-building, supportive therapy, family/couples therapy, cognitive-behavioral therapy, interpersonal therapy, complementary and alternative medicine, and existential therapy.

Psychoeducation: Six of nine studies in this category focused on the educational needs of the IC (primarily spouses) at the time of cancer diagnosis or in early-stage disease. Three of nine were targeted to IC/patient dyads with advanced cancer. The IC’s knowledge and ability to provide care was improved, and some studies illustrated positive changes in psychological correlates of caregiver burden as well as level of functional support offered to the patient and marital satisfaction.

Problem-solving/skill-building: Ten studies evaluated the impact of enhancing caregiver ability and confidence to provide care. The majority of studies focused on spouses/partners, one on mothers, and two did not specify the relationship between the IC and patient. Half of the studies provided the intervention to the IC alone, the others to an IC/patient dyad. Eight studies reported significant and positive effects on the psychological correlates of caregiver burden and problem-solving skills.

Supportive therapy: Eight studies evaluated the impact of in-person group therapy (in some studies supplemented by additional phone support), five were targeted to ICs of patients with advanced disease, and three were for ICs of all-stage patients. Five studies utilized groups comprised of ICs alone, and three included IC/patient dyads. Results were generally qualitative, but in those studies where outcomes related to psychological correlates of caregiver burden were measured, one study found improvements by ICs in perceived support and knowledge, and other studies found no significant changes.

Family/couples therapy: Eleven studies focused on interventions to improve communication and psychological functioning of the “couple/family” unit. Of the seven couples-focused studies, all noted improvements by ICs and patients in relationship quality, physical and psychological functioning, communication, and sexual satisfaction. In the four family interventions, significant improvements in psychosocial distress and coping skills were observed. One family-based study, focused on newly diagnosed patients with pediatric cancer, failed to demonstrate significant improvements in anxiety or traumatic stress levels. 

Cognitive-behavioral therapy: Three studies focused on IC interventions using structured, multimodal interventions to impact sleep-wake disturbances, psychological distress, and negative reactions by ICs to patient-reported symptoms. Each study reported significantly positive outcomes postparticipation.

Interpersonal therapy: One study used a phone-based intervention to deliver interpersonal counseling to patients with breast cancer and their spouse caregivers over a six-week period. Significant improvements in depression and anxiety in both parties were reported.

Complementary and alternative medicine interventions: Two studies examined the impact of complementary and alternative medicine therapies. One studied an eight-week, nurse-delivered program of guided imagery, reflexology, and reminiscence therapy to patients and ICs, alternately in person and by phone, but the author collected no psychosocial outcome data. A second study compared massage therapy versus Healing Touch to manage anxiety, depression, fatigue, and subjective caregiver burden on ICs of patients undergoing stem cell transplantation. Significant improvements in anxiety, depression, and physical and emotional fatigue were reported in the subjects who received massage, but neither group noted improved perception of burden.

Existential therapy: One study examined the impact of participation in a theory-based, hope-focused activity on live-in ICs. Qualitative results from the small sample (n = 10) indicated perceived benefits by the participants, such as reframing goals for hope and the value of focusing and sharing their thoughts.

Conclusions

Of the 49 studies reviewed, 65% produced positive improvements in outcomes for ICs and patients, although specific statistical results and effect sizes were not reported. The authors noted that multiple studies did not collect outcome data sufficient to support full comparisons across all studies.

Overall, the body of these studies illustrated that a significant need exists among ICs for information on how to cope with not only their patient’s physical and psychosocial needs but their own as well. The studies that provided concrete skill-building and education (psychoeducational, problem-solving/skill-building, and cognitive-behavioral therapy) met these needs and demonstrated improved outcomes most clearly. Studies with interventions intended to manage psychosocial distress (supportive therapy, family/couples therapy, interpersonal therapy, and existential therapy) generally demonstrated qualitative data indicative of improvements in the psychological correlates of caregiver burden and improved communication, but fewer measured and reported quantitative outcome data allowing larger comparisons of short- or longer-term effectiveness.

Limitations

The authors of two of the supportive therapy studies noted that during recruitment, ICs with higher baseline levels of psychosocial distress tended to decline participation; therefore, the recruited sample’s mean level of distress at study start was already low to moderate, leaving less opportunity to demonstrate statistically significant change.

Nursing Implications

A wide variety of interventions to support the educational and psychosocial needs of ICs have been explored, allowing nurses to provide or refer ICs and patients to therapies or structured programs that are best suited to their needs. Some of the interventions are within nursing scope of practice, such as massage, whereas others might require referral to a formal individual or group therapy provider. Structured intervention programs, such as those described in the cognitive-behavioral therapy studies, may be able to be replicated locally.

Print

Caress, A.L., Chalmers, K., & Luker, K. (2009). A narrative review of interventions to support family carers who provide physical care to family members with cancer. International Journal of Nursing Studies, 46, 1516–1527.

Purpose

To identify and critique studies of the development and/or evaluation of interventions to enable family carers to provide physical care to a family member with cancer

Search Strategy

  • PsycINFO, Cochrane Central Register of Controlled Trials, Embase Ovid, Embase, Ovid MEDLINE, CINAHL, DARE (Database of Abstracts of Reviews of Effectiveness), related systematic and other reviews, and reference lists from published articles were used for the search. Only English-language articles in the databases were reviewed.
  • Key words were cancer, intervention, program(me), evaluation, research, physical/practical care, needs, skills, home care, palliative care, end of life care, terminal care, cancer care, symptom management/control, skills, family (including spouse, husband, wife, partner), carers, caregivers, lay carers, and family support.
  • Inclusion criteria were studies with male or female adults (age 18 or older) who provided care to family member with cancer; literature using family, family member, or significant other; and the carer was expected to live in the home with the patient to provide care.
  • Literature on caregiver bereavement interventions was excluded.

Literature Evaluated

The number of studies initially reviewed was not reported.

After an initial search and crossing of search terms addressing physical (practical) care by carers of patients with cancer, the final tally of 19 studies met the following inclusion criteria: the study reported on an empirical study or program development; focused on carers of a family member with cancer; reported on the development and/or evaluation of an intervention to help carers provide physical care to a family member with cancer; and appeared in the literature between 1990 and June 2008. A critical consideration of article quality occurred by comparing articles to recommendations developed by three published authors, but formal quality scoring was not undertaken.

Initial search terms seemed to be too broad, overlapping, and perhaps unclear to initiate the study. The authors desired to distinguish between physical and psychosocial care of carers, but many studies blended the two types of care as interventions. Studies were not scored on quality of research design due to the authors’ desire to focus on the content of the interventions in a narrative review.

Sample Characteristics

  • The report included 19 interventional studies.
  • The total sample was 3,286 caregivers, with a sample range across studies of 34–750 caregivers.
  • The sample was comprised of older adult patients with cancer and patients with end-stage cancer and their partners (patient/caregiver dyads).

 

Results

The authors found four categories of intervention that allowed family carers to provide physical/practical care of a family member with cancer (one study): (a) interventions that included skills training for the caregiver (nine studies), (b) interventions to improve care through managing symptoms (five studies), (c) interventions with a problem-solving focus, and (d) interventions with a learning focus (four studies).

  • Some studies of interventions for managing symptoms indicated some benefits to patients and/or caregivers.
  • Interventions using problem-solving processes showed promise of benefit.
  • To what degree educational interventions addressed physical or practical care, and how this influenced outcomes, was not clear.

 

Limitations

The authors noted significant variability among included studies of terms defining the cancer experience (stage of cancer, point in cancer trajectory, type of cancer), specificity of the intervention, and measurement of distinct outcomes. This variability influenced the authors’ ability to interpret beneficial physical (practical) interventions for caregivers and patients. Furthermore, this variability, as well as limited article text that clearly specified the intervention, diminishes the ability to replicate those studies for further clarity on valuable caregiver interventions. The authors also admit to the complexity of dividing carer physical and psychosocial care for a family member with cancer, but believe such a division is important because of the limited literature on the physical role of carers.

Nursing Implications

The reality is that most carers learn “on the job” about ways to effectively care for a loved one. One might question the possible overlap of the four categories of interventions developed by the authors: they seem to address the urgent need for carer teaching and learning to meet both patient and carer needs. Realities in the United States (e.g., limited patient time with managed care, early patient discharge from acute agencies, push for more home care) may provide barriers to such teaching and assessment of carer learning. However, data from this narrative review support a mandate for nursing assessment of carer learning needs and then nursing follow-through to teach carers at each patient clinical encounter for the present cancer experience. With disease progression and even a changed carer/patient relationship, continued nursing assessment and teaching intervention can improve the quality of life for that carer/patient dyad. This review identifies a need for development and evaluation of well-defined interventions of practical skills. Given the range of needs of patients with cancer and carers, much of this work will need to address specific problems at particular points in the disease trajectory.

Print

Chambers, S.K., Pinnock, C., Lepore, S.J., Hughes, S., & O'Connell, D.L. (2011). A systematic review of psychosocial interventions for men with prostate cancer and their partners. Patient Education and Counseling, 85, e75–e88.

Purpose

To update a prior systematic review and address the following two clinical questions: (1) Do psychological and cognitive interventions improve psychological adjustment in men with prostate cancer? and (2) Do such interventions alleviate partner distress and improve quality of life in those men?
 

Search Strategy

  • Databases used were MEDLINE, Embase, CINAHL, and PsycINFO.
  • Key words were exp psychosocial support, exp affective symptoms, and words connected to identify prostate cancer–based research.
  • Studies that reported randomized clinical trials; described relevant interventions and outcomes; included at least 80% patients with prostate cancer or partners of patients with prostate cancer, or had separate analysis of prostate cancer patient data; and were published between December 31, 1999, and December 1, 2009 were included in the search.
  • Studies that were not prostate cancer–specific or did not meet the 80% guideline; had irrelevant outcomes to study; lacked a randomized control trial or clear description of the trial; and were nonresponsive to systematic review questions were excluded.

Literature Evaluated

A total of 195 references were retrieved.

Following a literature search of chosen databases, two reviewers independently reviewed studies identified as relevant to the two study questions. Reviewers used previously published PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) criteria and national (Australian) research criteria to assess studies for inclusion in the systematic review. Study quality was poor, with few studies using double blinding, adequate concealment of treatment allocation, intention-to-treat analysis, and incorporating statements on allocation sequences for study participants. A higher proportion of studies completed after 2005 had sufficient concealment of allocation sequence than those completed before 2005. However, later studies had exclusions that were more likely to cause bias than earlier studies. Some of the 21 studies used in the systematic review did not include useful data to evaluate the intervention, did not collect baseline data, nor provide evidence of significant differences between intervention and usual care groups.   
 

Sample Characteristics

  • A total of 21 studies were included in the review.
  • Sample range across studies was 32–526 participants (e.g., 263 couples).
  • Of the 21 studies, 16 reported patient data only, 4 reported patient and caregiver/spouse data, and 1 reported caregiver/spouse data only. 
  • Mean age of participants was 67 years.
  • Most patients had localized prostate disease, with 76% undergoing surgery and 48% receiving radiation therapy to treat malignancy.
  • Interventions were mostly supportive, with focus on education, cognitive reframing, or coping skills. Major focus for interventions included stress management, uncertainty, cancer/treatment information, symptom management (bowel/urinary function, sexual function), coping skills, and marital/relationship communication. Outcomes assessed included quality of life, mood, anxiety and depression, marital satisfaction, uncertainty, coping skills, symptom distress (fatigue, bowel/urinary function, sexual function), and caregiver strain.

Phase of Care and Clinical Applications

Transition phase after active treatment

Results

Fourteen studies provided relevant information to answer the patient question (1). These studies indicated that group cognitive behavioral programs, with focus on stress management and long-term, nurse-led education and support, positively influenced improved quality of life for patients with prostate cancer. Men with localized disease experienced physical quality-of-life benefits (but not mental quality-of-life, mood, or cancer worry benefits) when exposed to stress management and education at the time of surgery. Four studies provided useful information to answer the caregiver/partner question (2): patient/caregiver dyads exposed to a psychoeducation intervention with a focus on coping skills reported improved quality of life. Nonsignificant or inconsistent results on intervention effects on patient uncertainty, hopelessness, and depression were found across studies. One study improved caregiver physical quality of life, uncertainty, and symptom distress in the short term, but patients did not experience significant benefits from the intervention.

Conclusions

Group cognitive behavioral interventions focused on stress management, led by an expert in psychology, and nurse-led psycho-educational interventions seem to support better psychological adjustment and quality of life of patients with prostate cancer with localized disease. Coping skills interventions appear to help patient/partner adjustment, although evidence remains limited to guide oncology practice. Limitations in studies used for this systematic review include limited samples of diverse individuals, those with advanced disease, and gay men needed to guide effective and equitable interventions and healthcare policy. Although common in North America and Australia, more peer-led interventions, particularly with late-stage survivors of prostate cancer, need to exist based on evidence of their success in decreasing patient isolation and providing information and emotional support. Additional studies must be conducted to validate effective ways, including healthcare structural and process change, to meet the emotional and quality-of-life needs of survivors of prostate cancer at various phases of the disease process and their caregivers.

Limitations

  • The authors did not report results from several studies due to “noninterpretable” data.
  • Most studies included North American men with high school or higher education and with localized disease.
  • High attrition rates and small sample sizes limited the discovery of significant intervention effects.
  • Lack of ethnically diverse samples, limited samples with men with advanced disease, and samples that included only heterosexual men all affect generalizability of findings.
  • Key words used for the search may have limited the studies accessed.

Nursing Implications

Continued nursing research to identify successful and cost-effective programs to improve the quality of life of patients with prostate cancer and their partners must occur. This systematic review found inconsistent findings that advocate for rigorous studies that can offer guidelines for effective family-based and home programs using a variety of formats at various phases of prostate cancer.

Print

Chi, N., Demiris, G., Lewis, F.M., Walker, A.J., & Langer, S.L. (2016). Behavioral and educational interventions to support family caregivers in end-of-life care. American Journal of Hospice and Palliative Medicine, 33, 894–908. 

Purpose

STUDY PURPOSE: To collect, review, and report on the current evidence on behavioral and educational interventions used to support family caregivers of patients who are receiving end-of-life care

TYPE OF STUDY: Systematic review

Search Strategy

DATABASES USED: PubMed, CINAHL, Embase, Cochrane Library
 
INCLUSION CRITERIA: Phase II or phase III clinical trials published in English, looking at behavioral and educational interventions to support family caregivers at end-of-life care; published from 2004–2014
 
EXCLUSION CRITERIA: Peer review required, not caregiver focused, not family caregivers of adults receiving end-of-life care

Literature Evaluated

TOTAL REFERENCES RETRIEVED: 2,649, 618 were in English
 
EVALUATION METHOD AND COMMENTS ON LITERATURE USED: The Oxford Center for Evidence-Based Medicine framework was used to evaluate the findings.

Sample Characteristics

  • FINAL NUMBER STUDIES INCLUDED = 14 
  • TOTAL PATIENTS INCLUDED IN REVIEW: 1,773 total—406 in educational interventions, 1,152 in cognitive behavioral therapy interventions, and 575 in psychoeducational interventions
  • SAMPLE RANGE ACROSS STUDIES: Three studies had a sample of 10–50, two had 50–100, five had more than 100, two had more than 200, one hand more than 300, and one had more than 400.
  • KEY SAMPLE CHARACTERISTICS: All studies were phase 2 or 3 studies. Eight of 14 studies included caregivers of patients with advanced cancer; mean age of 55–61 years; high percentage of females (70% in 10 studies), Caucasians (60%–80% in seven studies), and spouses/partners (60%–70% in six studies)

Phase of Care and Clinical Applications

PHASE OF CARE: End-of-life care
 
APPLICATIONS: Palliative care

Results

Fourteen studies were identified, eight of which involved patients with cancer, supporting the use of educational, psycho-educational, and cognitive behavioral interventions to support caregivers in end-of-life care. Cognitive behavioral therapy had the strongest evidence and impact on most outcomes, with six intervention studies reported on, five studying patients with advanced cancer, and four of which were randomized, controlled trials (three with samples more than 100). Outcomes included statistically significant improvement and increased self-efficacy, quality of life, hope, psychological health, and problem solving. Four psycho-educational intervention studies existed, all involving patients with advanced cancer. Two were large randomized, controlled trials, with samples of 100. Caregivers showed increased preparedness, competence, knowledge, improved psychological health, increased positive rewards, less unmet needs, and increased social support. The four educational interventions studied included two smaller studies and, although studying care of patients at the end of life, none of them were specific to patients with cancer, although some included patients with advanced cancer. One of the larger studies (n = 110) was of caregivers of patients with dementia. The interventions in these studies showed improvement in caregiver preparedness, knowledge, support, confidence, helpful beliefs, and satisfaction with care.

Conclusions

Educational and behavioral interventions for caregivers of patients with advanced cancer at the end of life appear to be effective. They are difficult to study because of high attrition rates, in part because of the point in the illness trajectory in which one is asked to participate. However, increasing evidence supports that these types of interventions will benefit caregiver competence and well-being. Ongoing study is needed to identify more specifics about the interventions, what makes them successful, and the methods of delivery, the timing, and the dose, as well as what outcomes should be measured and with what instruments. Perhaps some consistency should be developed. The cost-effectiveness of interventions should be considered as well.

Limitations

  • High heterogeneity
  • High attrition rates
  • About half were smaller studies of quasiexperimental design, and the types of interventions studied were clearly different and should be looked at individually.

Nursing Implications

Educational and behavioral interventions for caregivers appear to be helpful in improving caregiver outcomes, with statistical improvement seen in a variety of caregiver domains. The type of intervention strategy used seems to influence the specificity and breadth of outcomes influenced, with some showing more results on competence and knowledge and others expanding beyond competence and knowledge to include an additional impact on the emotional well-being and quality of life of the caregiver. All three types of interventions appear to have positive impact. Care must be taken when choosing an intervention, considering what outcome is desire.

Print

Griffin, J.M., Meis, L., Carlyle, M., Greer, N., Jensen, A., MacDonald, R., & Rutks, I. (2013). Effectiveness of family and caregiver interventions on patient outcomes among adults with cancer or memory-related disorders: A systematic review. Retrieved from http://www.hsrd.research.va.gov/publications/esp/caregiver-intervention…

Purpose

STUDY PURPOSE: To explore whether family-involved interventions for reducing burden and improving caregiver skills improve five outcomes for adult patients diagnosed with cancer or memory-related disorders (more specifically, to explore the benefits of psychosocial interventions delivered by family or a caregiver as compared to usual care or wait-listed care for those patients), and to identify the benefits of a caregiver or family psychosocial intervention as compared to a different family-related intervention or patient-directed intervention for those patients

TYPE OF STUDY: Systematic review

Search Strategy

DATABASES USED: MEDLINE (Ovid) and PsycINFO
 
KEYWORDS: family; couples; home nursing; legal guardians; couple therapy; family therapy; or marital therapy
 
INCLUSION CRITERIA: Conducted in the United States; involved patients at least 18 years of age with a physical health condition; involved a family member or adult patient caregiver; reported patient outcomes of interest (e.g., quality of life, depression and anxiety, symptom control and management, health utilization, relationship adjustment); involved a control group; appeared in peer-reviewed publication in English after 1995
 
EXCLUSION CRITERIA: Noncancer or not a memory-related disorder

Literature Evaluated

TOTAL REFERENCES RETRIEVED = 2,771
 
EVALUATION METHOD AND COMMENTS ON LITERATURE USED: Quality ratings reported

Sample Characteristics

  • FINAL NUMBER STUDIES INCLUDED = 27 
  • SAMPLE RANGE ACROSS STUDIES: 12–476 (median of 120 dyads/sample)
  • TOTAL PATIENTS INCLUDED IN REVIEW = 3,345 patients in analysis for 26 trials
  • KEY SAMPLE CHARACTERISTICS: Patients: the average age was 60 years (range: 46–71 years); 80% were married; 51% were male, and the majority had prostate cancer; 49% were female, with most having breast cancer; 79% were white. Family members: the average age was 56 years (range: 49–62 years); 61% were female; no other family caregiver data reported

Phase of Care and Clinical Applications

PHASE OF CARE: Multiple phases of care

APPLICATIONS: Palliative care 

Results

The systematic review, focused on five interventions for cancer, indicated some support for family-involved interventions over usual care for decreasing patient anxiety and depression. Weak evidence was found for better patient outcomes with family-involved interventions as compared to patient-focused or health education/psychoeducational interventions. Family-involved interventions, directed toward specific subgroups of patients and those involving teaching of skills to meet patient needs, may be more effective for alleviating cancer symptoms and depression and anxiety than usual care. Little evidence was found that symptom management (e.g., pain, fatigue, nausea), quality of life, or relationships adjustment between the patient and family caregiver improved following interventions examined for the systematic review. Only 2 of the 27 trials received a “good” quality evaluation, mandating caution in applying findings to practice.

Conclusions

The systematic review found heterogeneous studies and evidence that family-involved interventions improved patient depression but had little effect on their anxiety and physical health.

Limitations

  • Study findings resulted from 25 of 27 trials (RCTs) deemed as “poor” or “fair” in quality without observational evidence to support other findings.
  • Some studies focused on interventions specific to improving caregiver and family health, which was not the review focus.
  • Study samples were limited to those with cancer or memory-related illness.
  • Non-inclusion of large-scale interventions similar to those used by the Department of Veterans Affairs
  • Lack of data to assess the intervention effect on healthcare utilization
  • Limited study generalizability

Nursing Implications

Current evidence indicates that targeted interventions for specific conditions, behaviors, and symptoms of the cancer experience may improve patient outcomes and minimize caregiver burden. Previous evidence has shown that psychosocial/psychoeducational interventions with caregivers reduce caregiver strain and burden. Findings from this systematic review provide some evidence that such interventions aimed at the family, rather than the individual caregiver or caregiver/patient dyad, may not substantially improve caregiver outcomes, while skill training for family members may be helpful. Additional work in this area is needed to determine the best foci and method of delivery of these types of interventions.

Print

Harding, R., List, S., Epiphaniou, E., & Jones, H. (2012). How can informal caregivers in cancer and palliative care be supported? An updated systematic literature review of interventions and their effectiveness. Palliative Medicine, 26, 7–22.

Purpose

To update and evaluate intervention studies and current state of the science regarding support for caregivers in a systematic review

Search Strategy

  • Databases used in the search were MEDLINE, CINAHL, and PsycINFO.
  • Key words were carer; caregiver; cancer; palliative; end of life; and terminal.
  • To be included in the review, studies had to involve adult caregivers/adult recipients, be English language, occur in the cancer palliative care setting, and be intervention-based (from 2001 to July 2010).
  • Articles reporting case studies, interventions without evaluation data, and interventions during the bereavement phase, as well as articles included in Harding and Higginson's 2003 systematic review paper, were excluded.

Literature Evaluated

  • The search revealed a total of 10,817 references.
  • Studies were evaluated using the Jadad Rating Scale and the Quality Rating Scale.
  • Despite the exclusion of bereavement studies, multiple studies are included in table and summarized.
  • An international sample of studies was represented.
  • Despite intent to focus on cancer populations, nine studies were in palliative care (not clearly cancer); a few studies were based on program implementation (process), so no specific caregiver outcomes were reported.

Sample Characteristics

  • A total number of 33 studies were included in the review. 
  • Sample range of subjects across studies was 2–2,000+ (less than 25 [n = 10]; 25–100 [n = 10]; more than 100 [n = 13]).
  • Interventions were dyad (n = 16) or caregiver only (n = 17).

Phase of Care and Clinical Applications

  • End-of-life phase
  • Palliative care

Results

Group interventions were studied most often, although only two of the studies included reported a statistically significant benefit compared to controls. The next largest group of studies investigated one-on-one psychological interventions. Two of these showed a positive effect for patient/carer dyads. Overall findings were equivocal, with about the same number of studies showing significant improvement with the intervention as those showing no change or difference between groups. The nature and timing of interventions varied greatly across studies included.

The authors identified seven categories of interventions: (a) one-on-one psychological, (b) dyad psychological, (c) palliative care/hospice (delivery), (d) informational/training, (e) respite, (f) group intervention, and (g) physical.

Conclusions

Given the limitations, differences in the nature of interventions reviewed, and inconsistencies of findings across studies, this review does not provide strong support for any particular type of intervention.

Limitations

This summary has limited guidance due to lack of synthesis to actually guide practice. There were also inconsistencies between the inclusion and exclusion criteria and the studies reported; not all have clear implications to cancer, affect active information caregivers, or measure caregiver outcomes.

Print

Hopkinson, J.B., Brown, J.C., Okamoto, I., & Addington-Hall, J.M. (2012). The effectiveness of patient–family carer (couple) intervention for the management of symptoms and other health-related problems in people affected by cancer: A systematic literature search and narrative review. Journal of Pain and Symptom Management, 43, 111–142.

Purpose

To review patient–family psychosocial interventions in cancer care on physical, psychological, social, and quality-of-life effects

To evaluate associated theoretical models and measured effects

Search Strategy

  • Databases used in the search were MEDLINE, EMBASE, PsycINFO, and CINAHL.
  • Keywords were cancer, systematic, review, couple, family, psychosocial intervention, symptom, and quality of life.
  • Inclusion criteria: English-language adults with cancer (18 years or older) from resource-rich countries; family/couples/partners (all gender combinations); relationship of caregiving between patient and other(s); illness-related (not long-term relationship) problems; studies with experimental design (e.g., randomized controlled trial [RCT], case control, systematic review); nonpharmacologic interventions; illness-related disruption in relationships and/or illness-related conflict; and evaluation of an outcome (e.g., satisfaction, distress, quality of life, pain)
  • Exclusion criteria: Teenagers and children; people in residential care and other institutions where primary carers are professionals; pharmacologic interventions; intervention that cannot be delivered in a community setting (i.e., patient’s home); non-Western culture; intervention that is targeted at long-standing family dysfunction; intervention that is delivered over a long period of time (more than 2.5 months); intervention where the effect is not expected for longer than 2.5 months; study of past cause of family dysfunction; study of future prevention of family dysfunction; nonillness-related family problems; care/support/intervention for carer independent of patient (e.g., management of carer problem); care/support/intervention for patient independent of carer (e.g., management of patient problem); patient–healthcare professional relationships; carer–healthcare professional relationships; education or support for healthcare professionals; and organization/delivery of a service

Literature Evaluated

  • A total of 80 references were retrieved.
  • One author performed a title and abstract scan on each retrieved study. The second author reviewed 10% of studies for reliability.
  • Disagreements were resolved through discussion.

Sample Characteristics

  • A final number of 27 studies were included in the review.
  • Sample range across studies was 14–480.
  • Of the 27 studies (published between 1999 and 2009), 22 interventions focused on patients and family caregiver (dyad focus; too few studies focused on a multi-member family unit were found to include).
  • Sample studies included patients with early-stage breast, gynecologic, and prostate cancers; all stage central nervous system tumors; and cancer-related pain; as well as patients undergoing chemotherapy.

Phase of Care and Clinical Applications

  • Active antitumor treatment phase   
  • Elder care; palliative care

Results

Dyad-focused nonpharmacologic interventions may improve coping and emotional support. High attrition related to the practical burdens associated with trial participation and care of a seriously ill patient impact the design and conduct of RCTs to test these interventions, but adverse events are few. Interventions that promote interactions within the dyad are more likely to have a measurable effect on emotional health outcomes than those targeted to a single member of the pair. Few studies are theory-based.

Conclusions

Dyadic interventions that promote interaction appear to be beneficial to impact anxiety, depression, and distress in patients with cancer and the family members who care for them.

Limitations

The review was limited to English language studies.

Nursing Implications

High attrition rates in studies imply that it is important to match the intensity/complexity of an intervention with the dyad’s ability/willingness to participate fully, or risk drop out. Further theory development and testing are needed to guide design and conduct of future studies in this area.

Print

Langford, D. J., Lee, K., & Miaskowski, C. (2012). Sleep disturbance interventions in oncology patients and family caregivers: a comprehensive review and meta-analysis. Sleep Medicine Reviews, 16, 397–414.

Purpose

To synthesize findings from intervention studies for sleep disturbance in patients with cancer and their caregivers.

Search Strategy

Databases searched were PubMed, CINAHL, and PsycINFO.

Search keywords were sleep, sleep disturbance, insomnia, intervention, cancer, oncology, and caregivers.

Studies dated through 2010 that evaluated sleep disturbance/sleep quality as the primary or secondary outcome were included.

Literature Evaluated

  • The total number of references retrieved was not stated.
  • The method of study evaluation was described for the type of intervention, mode of delivery, dose, and duration but not for study quality.
  • There were only two studies that affected caregivers.

Sample Characteristics

  • The final number of studies included was 49 (47 targeting patients and 2 targeting caregivers). 
  • Thirteen studies were included in the meta-analysis (total of 1,202 patients with cancer). 
  • The total sample across all studies was 3,205 patients.
  • The sample range across studies was 9 to 276 patients (including patients with cancer).
  • Patients had various cancer types, phases of treatment, and stages of disease. 
  • Women with breast cancer were studied most commonly.

Results

Intervention groupings analyzed via meta-analysis included cognitive-behavioral therapy (CBT), education, exercise, and complementary and alternative therapies. Effect sizes appeared to be slightly over 1.0 for CBT, close to 0 for education, slightly over 1.0 for exercise, and slightly over 0 for complementary and alternative therapies. Specific effect sizes were only shown graphically, and actual data were not presented. No separate analysis of caregiver effects could be determined. Modes of delivery of interventions varied widely across studies.

Conclusions

Findings suggest at least moderate effects of CBT and exercise for improvement in sleep disturbances for patients with cancer. No substantial effects of exercise and education were demonstrated.

Limitations

The review was limited by the lack of any data regarding heterogeneity in the meta-analysis, variability of interventions, and modes of delivery to enable any firm conclusions.

Nursing Implications

Insufficient evidence was provided to draw any conclusions regarding intervention effects for caregivers.

Print

Li, Q., & Loke, A.Y. (2014). A systematic review of spousal couple-based intervention studies for couples coping with cancer: Direction for the development of interventions. Psycho-Oncology, 23, 731–739. 

Purpose

STUDY PURPOSE: To explore the existing interventions for spousal couples coping with cancer in terms of type of intervention, contents, approach, and outcome measurements, and to identify directions for the development of interventions

TYPE OF STUDY: Systematic review

Search Strategy

DATABASES USED: Science Citation Index Expanded, PsycInfo, MEDLINE via OVIS SP, CINAHL

KEYWORDS: intervention; program; therapy; cope; coping; cancer; oncology; carcinoma; couple; partner; spouse

INCLUSION CRITERIA: Published in English or Chinese within the four databases searched; couple-based interventions; studies had to focus on couple-based interventions; outcome measures included the patients with cancer and their spousal caregivers

EXCLUSION CRITERIA: Commentaries, editorials, literature reviews, conference proceedings

Literature Evaluated

TOTAL REFERENCES RETRIEVED = 410
 
EVALUATION METHOD AND COMMENTS ON LITERATURE USED: Effective Public Health Practice Project criteria; 13 studies had moderate quality, and 4 had strong ratings; high withdrawal was the most common reason for lower study quality using this approach.

Sample Characteristics

  • FINAL NUMBER STUDIES INCLUDED = 17
  • SAMPLE RANGE ACROSS STUDIES: 9–263
  • TOTAL PATIENTS INCLUDED IN REVIEW: 1,142 couples
  • KEY SAMPLE CHARACTERISTICS: Patients were coping with prostate cancer, breast cancer, or gynecologic cancer; 70% focused on a gender-specific cancer; interventions involved an average of 6.2 sessions, with a range of 1–16 sessions; face-to-face sessions lasted an average of 79 minutes, with a range of 45–120 minutes; telephone contact time lasted an average of 32 minutes, with a range of 20–45 minutes; interventions lasted 8.3 weeks, with a range of 1–24 weeks from the first to last session; follow-up periods of the interventions were immediately post-intervention (n = 5 [29.4%]), eight weeks (n = 1 [5.9%]), 3 months (n = 4 [23.5%], 6 months (n + 1 [5.9%], and 12 months (n = 6 [35.3%]).

Phase of Care and Clinical Applications

  • APPLICATIONS: Palliative care

Results

Of the 17 articles reviewed, interventions were focused mainly on patient caregiving and caregiver self-care, usually lasted for six weeks using a face-to-face group mode., and had follow-up around three months. The outcomes measures were grouped into three main dimensions: dyadic appraisal, dyadic coping, and dyadic adjustments. Positive outcomes were reported for these interventions, including improvements in communications, dyadic coping, quality of life of the patients and their partners, psychosocial distress, sexual functioning, marital satisfaction, and caregiver self efficacy. The majority of interventions were delivered to individual couples face-to-face. Attrition rate ranged from 6%–34%, with an average of 20%. Interventions were grouped as skills training (n = 11), counseling (n = 6), and psychoeducation (n = 2). Skills training and psychoeducation were most often provided together.

Conclusions

The findings highlighted the positive outcomes of couple-based interventions that focus on couples coping with cancer. Although all studies focused on the couple's communication and relationship, only 40% focused on the subject of the caregiver's self-care. All of  the intervention studies included in the review reported positive outcomes to some extent, including quality of life, psychosocial distress, sexual functioning, and marital satisfaction of the patients and their partners.

Limitations

  • Heterogeneity of studies included, such as varied types of cancer and differences in delivery of the intervention, is a limiting factor.  
  • What phases of cancer care were involved in the studies included is not clear.  
  • Cohort studies were included and not differentiated from RCTs.

Nursing Implications

Future couple-based intervention research should focus on patients with cancer whose spouse is an active caregiver and provide intervention and assessment of both partners as a unit (dyad). Findings from this review show that couple-based interventions had multiple benefits for patients and caregivers. The high attrition rates seen suggest that the most acceptable timing, duration, and method of delivery is not clear. Although benefit was shown, what factors would indicate those couples who would be most likely to benefit from couples interventions is not clear, and findings do not clarify which approaches are most beneficial.

Print

Northouse, L.L., Katapodi, M.C., Song, L., Zhang, L., & Mood, D.W. (2010). Interventions with family caregivers of cancer patients: Meta-analysis of randomized trials. CA: A Cancer Journal for Clinicians, 60, 317–339.

Purpose

To provide a meta-analysis that examines interventions delivered to family caregivers of patients with cancer in published randomized controlled trials and their effects on multiple caregiver outcomes

Search Strategy

  • Databases used in the search were CINAHL, Google Scholar, ISI Web of Knowledge, PsycINFO, and PubMed.
  • Keywords were family caregiver, cancer patient, spouse, partner, couple, and interventions used in various combinations. In cases where the query resulted in more than 200 titles, additional refinement was done with use of “random assignment” and “randomization.”
  • Hand searches of reference lists of related literature reviews were used to complement computer searches. Limits of English language and involving human subjects were used.
  • To be included, (a) the intervention had to involve family caregivers alone or with a patient with cancer, (b) the intervention had to be psychosocially, cognitively, or behaviorally oriented, and (c) participants had to be randomly assigned to either an intervention or control arm of the study.
  • Studies involving pediatric patients with cancer and pharmacologic interventions were excluded.

Literature Evaluated

  • Initial queries provided 403 articles, in which 160 were potentially relevant. Of these, 124 were excluded as per criteria and 7 were excluded because caregiver outcome data were not reported.
  • At least two members of the research team read and analyzed each article. Data were extracted using a standard table, and disagreements were resolved through consensus. Data extracted were organized into three domains: illness appraisal factors, coping resources, and quality of life (QOL).
  • Effect sizes were calculated using outcome data from the experimental arm hypothesized by the original researchers to be most effective, in those studies that had more than one experimental arm.
  • Extracted data were organized into three time frames: baseline to three months postintervention (T1), follow-up from > three months to six months (T2), and follow-up beyond six months (T3).

Sample Characteristics

The final sample of studies used in the meta-analysis was 29, including a total of 3,495 subjects across all studies.

Results

Intervention Types

  • 57.1% of interventions were psychoeducational in which the primary focus was to provide information regarding symptom management and physical aspects of care, as well as to direct some attention to emotional and psychosocial needs of patients, caregivers, and marital and family relationship.
  • 25.7% of protocols were focused on skills training: development of coping, communication, and problem-solving skills.
  • 17.1% of interventions were therapeutic counseling, focusing primarily on development of a therapeutic relationship to address concerns.
  • The most common combination of primary and secondary interventions included both psychoeducational and skills training (68.6%).

Appraisal Domain Results

  • Eleven studies assessed caregiving burden during the first three months. Effect sizes ranged from -0.12 to 0.62, with a small but significant effect size (g = 0.22).
  • In two studies, interventions had a positive significant effect on appraisal of caregiving benefit between three and six months (g = 0.31). Beyond six months, this appraisal showed a larger effect size, but was not significant. (Caregiving benefit was seen as a rewarding experience and opportunity for personal growth.)
  • Three studies looked at whether the intervention was effective in addressing caregivers’ information needs. Overall effect size was large and significant (g = 1.36, range = 0.85–1.87).

Coping Resources Domain

  • Coping efforts were evaluated during the first three months in 10 studies. After the intervention, overall effect size was moderate but significant (g = 0.47, range = -0.47–1.46).
  • In four studies, changes in coping efforts three to six months postintervention showed a smaller but significant effect size (g = 0.20).
  • Two studies evaluated coping efforts beyond six months. There was a persistent moderate effect that was significant (g = 0.35).
  • In eight studies that evaluated self-efficacy within three months postintervention, overall effect size was small but significant (g = 0.25, range =  -0.13–0.93). This positive significant effect persisted over time.

Quality of Life Domain

  • In seven studies that evaluated physical functioning, during the first three months overall effect size was small and not significant. However, interventions were superior to usual care in improving physical functions at three to six months (g = 0.22) and beyond six months (g = 0.26).
  • Interventions were seen to be superior to usual care in reducing distress and anxiety, and the effect appeared to last for at least 12 months. Sixteen studies evaluated changes in mental distress and anxiety during the first three months, 11 evaluated these changes at three to six months, and 6 evaluated distress and anxiety beyond six months.
  • Interventions were not successful in reducing caregivers’ depression. In all of the studies that evaluated these changes at various time points, overall effects were small and not significant.
  • Among 10 studies that evaluated changes in marital and family relationships in the first three months, overall effect size was small but significant (g = 0.20, range = -0.18–0.47). Evaluation beyond three months did not show significant effects.
  • Effects on social functions in two studies that were evaluated beyond six months showed an overall positive moderate effect that was significant (g = 0.39). There were no other significant effects seen in other studies that evaluated changes in social functioning.

Effect of Intervention Characteristics

  • Coping was found to be significantly influenced by the use of face-to-face and group methods of intervention delivery than those using mixed methods to deliver the intervention.
  • Intervention hours and number of sessions were significantly positively correlated with coping outcomes.
  • More sessions were associated with more negative (worse) outcomes in the case of caregiver burden, depression, and marital-family relations.
  • Interventions that included caregivers alone reported significantly better outcomes in appraisal of caregiving benefit than interventions that also included patients.

Conclusions

Nurses participated in delivery of the intervention in about half of the studies examined. Interventions focused on three broad areas: patient caregiving, marital/family care, and caregiver care, although there was considerable variability in the emphasis of each area in all studies and many interventions focused mostly on the patient, with a peripheral addressing of caregiver needs. The meta-analysis noted there is a consensus that these are essential content for caregiver-focused intervention protocols. Many of the 29 studies used theoretical models to structure their protocols and had plans to assess integrity of the interventions. Interventions were found to not be effective in decreasing caregiver depression, perhaps a result of the type of cancer or high predominance of females in the 29 studies. On the other hand, interventions aimed at improving caregiver coping were more effective, particularly if the intervention included more sessions and lasted a longer time. Coping outcomes improved more often with face-to-face or group-delivered interventions and if the focus was on promoting active caregiver coping and reducing avoidance and denial behaviors. Although the meta-analysis showed a large intervention effect with decreasing caregivers’ need for knowledge (and most studies had a significant educational component), few studies measured caregiver change in knowledge as an outcome.

Nursing Implications

This meta-analysis of 29 studies, with variant use of theoretical models, offers insight into effective interventions that improve the life of cancer caregivers and those for whom they care for. Despite the diversity in interventions found in the studies, caregivers reported better outcomes in illness appraisal, coping resources, and quality of life following research study involvement. Positive and long-term intervention effects occurred for caregiver coping, self-efficacy, and distress/anxiety outcomes across all studies. Continued emphasis must be placed on weaving theoretical models throughout studies to generate hypotheses, select components of intervention to ensure integrity, and identify outcomes.

Print

Regan, T.W., Lambert, S.D., Girgis, A., Kelly, B., Kayser, K., & Turner, J. (2012). Do couple-based interventions make a difference for couples affected by cancer?: A systematic review. BMC Cancer, 12, 279.

Purpose

STUDY PURPOSE: To explore the efficacy of interventions provided to couples 

TYPE OF STUDY: Systematic review

Search Strategy

DATABASES USED: CINAHL, PsycINFO, MEDLINE, EMBASE, ISI Web of Science
 
KEYWORDS: couple; partner; support; caregiver; carer; family; spouse; wife; close relatives; significant other; family; relatives; cancer
 
INCLUSION CRITERIA: Evaluated a psychosocial intervention for patients with cancer and their caregivers; experimental or quasi-experimental design; included depression, anxiety, distress, or quality of life as an outcome measure
 
EXCLUSION CRITERIA: Compared similar interventions; included pharmacologic, exercise, or dietary elements in the intervention; focused on sexuality

Literature Evaluated

TOTAL REFERENCES RETRIEVED = 1,279
 
EVALUATION METHOD AND COMMENTS ON LITERATURE USED: Criteria of the Effective Public Health Practice Project and the National Health and Medical Research Council guidelines for assessing levels of evidence

Sample Characteristics

  • FINAL NUMBER STUDIES INCLUDED = 23
  • SAMPLE RANGE ACROSS STUDIES, TOTAL PATIENTS INCLUDED IN REVIEW: Not provided
  • KEY SAMPLE CHARACTERISTICS: Various tumor sites; more than 80% of patients and caregivers were Caucasian; 86% of caregivers were spouses; more than 62% of patients and caregivers had at least some college education.

Results

Six studies evaluated social adjustment for patients and partners. All showed greater improvement in adjustment for intervention partners at various study time points. Nine studies evaluated relationship functioning and the quality of the patient-partner relationship. All of these showed improvement with the intervention at various time points in the study. Five studies evaluated coping strategies, and all showed greater improvement in coping with the intervention. Of four studies that looked at self-efficacy, two showed improvement with the intervention and two showed no significant effect. Two studies assessed partner communication, and both showed improvement with the intervention. Interventions in early-stage cancer appeared to result in greater improvement compared to those targeting late- or advanced-stage cancer. No significant differences were found comparing face-to-face and telephone delivery of interventions. In eight of the studies, the interventions were provided by nurses. Other providers were social workers, psychologists and therapists, or counselors (no experience or qualifications provided).

Conclusions

Couple-based psychosocial and psychoeducational interventions are shown to be effective in improving caregiver coping and self-efficacy, as well as couple relationship and communications. Face-to-face and telephonic delivery of the interventions were effective.

Limitations

Samples were all well-educated Caucasian individuals in heterosexual relationships, so these findings may not be applicable to other groups.

Nursing Implications

Findings show clear benefits of psychoeducational types of interventions delivered to couples for caregivers and patients, and that these have been effectively provided by nurses. Findings also suggest that delivery in formats other than face-to-face situations can be beneficial. Additional research in the efficacy of various modes of delivery would be useful, so that clinicians can determine the most cost-effective and practical approaches that are helpful to patients and caregivers.

Print

Waldron, E.A., Janke, E.A., Bechtel, C.F., Ramirez, M., & Cohen, A. (2012). A systematic review of psychosocial interventions to improve cancer caregiver quality of life. Psycho-Oncology. [Epub ahead of print]

Purpose

To evaluate randomized, controlled caregiver-focused intervention studies intended to improve quality of life (QOL) in caregivers of adult patients with cancer

Search Strategy

  • Databases used for the search were MEDLINE, PsycINFO, EMBASE, CINAHL, and Cochrane Database Library.
  • Studies were included that focused on patients with cancer and had presence of a caregiver (both age 18 or older); reported on a caregiver-targeted QOL measure; used randomization for intervention group assignment; reported on an intervention targeted to meet caregiver needs; and were English language.
  • Studies were excluded if the full text of the article was unavailable; they reported on an uncontrolled, nonrandomized, patient-only targeted intervention; QOL was not measured; they included pediatric patients; and were qualitative or descriptive only.

Literature Evaluated

  • A total of 1,066 references was retrieved.
  • A pair of independent raters first reviewed all abstracts for evidence of inclusion criteria, followed by final review for inclusion by the project leader.
  • A second review again used two raters to assess each citation using an 11-item PEDro coding strategy, a Delphi method for randomized controlled trials (RCTs).

Sample Characteristics

  • Six studies were included.
  • Sample (N = 1,115) range across studies was 30–329 caregivers.
  • Study attrition rates were reported as 10.6%–54.7%.
  • Mean caregiver age was 56.5 years.
  • Approximately 82% of the caregivers were female (where reported).
  • Patient cancer types included prostate, breast, or multiple cancer diagnoses across patients in one study.

Phase of Care and Clinical Applications

Multiple phases of care

Results

A variety of measurement instruments was used across the six studies, including the Caregiver QOL Index–Cancer in three studies, Functional Assessment of Cancer Therapy (version 3) and Short Form-36 Health Survey administered together in two studies, and Profile of Mood States–Short Form and Caregiver Strain Index administered together in one study. Two of six studies showed a statistically significant improvement in caregiver QOL at the first measurement interval. Effect sizes were available in four studies, with two showing no effect and two illustrating a small effect on caregiver QOL (Cohen’s d  = 0.264 [Northouse et al., 2007] and 0.271  [Walsh et al., 2007]). The Northouse et al. (2007) study also illustrated a small effect on caregiver coping (d = 0.392), self-efficacy (0.261), and negative appraisal (-0.191). Studies with interventions to improve caregiver ability to communicate and provide education on coping and specific care skills had the most impact.

Conclusions

High attrition rates in studies of the caregiver population were again noted, as are seen in other studies and reviews. The review included an evaluation of the effect of attrition on results and noted no significant impact on results, but it should be noted that the six studies included in this review were selected for their rigor.

Limitations

The small sample was limited to RCTs of which there are few in the literature (not a fault of this study’s methodology).

Nursing Implications

More and larger controlled intervention studies are needed to clarify not only which interventions support QOL improvements, but under what circumstances and timing. The authors noted that different approaches may be needed when providing intervention to female versus male spousal caregivers to significantly improve depression. Attention to the optimal format and timing of interventions during phases when distress and need for support may be high, as well as attrition rates due to scheduling and general caregiving burden, is needed.

Print

Zheng, Y., Head, B.A., & Schapmire, T.J. (2016). A systematic review of telehealth in palliative care: Caregiver outcomes. Telemedicine Journal and e-Health, 22, 288–294. 

Purpose

STUDY PURPOSE: To evaluate caregiver outcomes related to telehealth interventions in palliative care

TYPE OF STUDY: Systematic review

Search Strategy

DATABASES USED: Academic Search Premier, AgeLine, CINAHL, MEDLINE, Psychology and Behavioral Science Collection, PsycINFO, Sociology Collection, and TOPIC
 
INCLUSION CRITERIA: Interventions focused on patients receiving palliative or end-of-life care, caregiver outcomes reported, published from January 2003–January 2015
 
EXCLUSION CRITERIA: Case studies, no report of caregiver outcomes

Literature Evaluated

TOTAL REFERENCES RETRIEVED: 221
 
EVALUATION METHOD AND COMMENTS ON LITERATURE USED: Cochrane Risk of Bias assessment. The majority were scored as moderate risk of bias.

Sample Characteristics

  • FINAL NUMBER STUDIES INCLUDED = 9 
  • TOTAL PATIENTS INCLUDED IN REVIEW = 527
  • SAMPLE RANGE ACROSS STUDIES: 8–217
  • KEY SAMPLE CHARACTERISTICS: One study included patients with cancer. Four studies were of patients in hospice.

Phase of Care and Clinical Applications

  • PHASE OF CARE: End-of-life care
  • APPLICATIONS: Palliative care

Results

Four studies used videophones for communication with medical professionals, and two used telephones for counseling. Two studies showed a reduction in caregiver anxiety with the intervention. One study showed a significant reduction in caregiver burden, and one showed no difference in caregiver burden measures. Individual studies also showed improved family function, reduction in caregiver negative mood, decreased depression over time, and reduced stress over time among caregivers. Overall, 66.7% showed positive effects of the interventions. All studies concluded that the approach was feasible, and most revealed that caregivers were satisfied with the intervention.

Conclusions

Telehealth interventions might improve the caregiving experience. Additional research in this area is needed.

Limitations

  • Mostly low quality/high risk of bias studies
  • Low sample sizes
  • The content of interventions is not well described.

Nursing Implications

Telehealth intervention approaches may be an effective way to deliver various aspects of care and caregiver interventions. This can be a practical alternative to other approaches, particularly for caregivers in rural or underserved communities. Additional research is warranted to also identify the most effective components of these types of interventions.

Print

Research Evidence Summaries

Badger, T.A., Segrin, C., Figueredo, A.J., Harrington, J., Sheppard, K., Passalacqua, S., . . . Bishop, M. (2011). Psychosocial interventions to improve quality of life in prostate cancer survivors and their intimate or family partners. Quality of Life Research, 20, 833–844.

Study Purpose

To test the effectiveness of two telephone-delivered psychosocial interventions for maintaining and improving quality of life

Intervention Characteristics/Basic Study Process

The first intervention was by-telephone interpersonal counseling (TIP-C) delivered weekly for eight weeks to prostate cancer survivors and every other week for eight weeks to partners. The second intervention involved eight weekly health education attention condition (HEAC) sessions delivered by telephone.

Sample Characteristics

  • The sample included 71 men (survivors) and 70 partners.  
  • Mean age of survivors was 66.99 years and mean age of partners was 61.13 years.
  • Of the survivors, 100% were male. Of the partners, 5.7% were male and 92.9% were female.
  • All survivors had been diagnosed with prostate cancer.

Setting

  • Single site
  • Home setting

Phase of Care and Clinical Applications

  • Phase of care: long-term follow-up
  • Clinical applications: late effects and survivorship, eldercare

Study Design

Repeated-measures experimental design

Measurement Instruments/Methods

  • Center for Epidemiological Studies Depression Scale   
  • Positive and Negative Affect Schedule
  • UCLA Prostate Cancer Index
  • Multidimensional Fatigue Inventory
  • Social Well-Being Scale
  • Perceived Social Support from Family Scale
  • Spiritual Well-Being subscale of Quality of Life Instrument–breast cancer version

Results

Improvements in depression, negative affect, stress, fatigue, and spiritual well-being were significantly greater for survivors receiving the HEAC intervention than for those receiving the TIP-C intervention.Compared to partners in the TIP-C intervention, partners in the HEAC group showed significantly greater improvements in depression, fatigue, perceived social support from family members, social well-being, and spiritual well-being.

Conclusions

Both interventions in this study were effective in improving multiple dimensions of quality of life for men with prostate cancer and their partners.

Limitations

  • The study had a small sample size (fewer than 100 participants).
  • Length of time since diagnosis was highly varied in the sample and needs can be expected to differ based on this.
  • Predominantly Caucasian sample
  • Baseline QOL was high.

Nursing Implications

Both interventions were effective, but additional research is needed. Health education may be just as effective or more effective in helping patients and caregivers than individualized counseling.

Print

Badr, H., Smith, C.B., Goldstein, N.E., Gomez, J.E., & Redd, W.H. (2015). Dyadic psychosocial intervention for advanced lung cancer patients and their family caregivers: Results of a randomized pilot trial. Cancer, 121, 150–158. 

Study Purpose

To test the initial efficacy, acceptability, and feasibility of a dyadic (patient–caregiver) psychosocial, phone-delivered intervention to improve the quality of life of the families of patients with advanced lung cancer within one month of the first cancer treatment

Intervention Characteristics/Basic Study Process

The dyads were randomly assigned to a usual medical care (UMC) or a six-week intervention group. Intervention patients and caregivers received separate standardized, tailored manuals. Manuals addressed self-care, stress and coping, symptom management, effective communication, problem solving, and maintaining and enhancing relationships. Patients and caregivers shared half of the topic information, but other content was tailored to the patient or caregiver role. Patients-tailored content included ways to balance autonomy with asking for and accepting support, sharing support needs, and ways to show caregiver appreciation. Caregiver-tailored content included ways to minimize patient overprotection, show effective communication, and ways to support patient self-care goals. Intervention dyads participated in six weekly 60-minute telephone counseling sessions aimed at alleviating caregiver burden with a trained interventionist who reviewed weekly patient and caregiver homework and manual content. The interventionist mentored participants through sessions and homework assignments to reinforce session skills for patients and caregivers. Participants in UMC and intervention groups completed six paper-and-pencil surveys at baseline and eight-weeks after baseline.

Sample Characteristics

  • N = 39 patient–caregiver dyads (20 dyads in intervention group, 19 dyads in UMC group)
  • MEAN AGE = Patients; 68.17 years (SD = 10.30 years, range = 38–87 years), caregivers; 51.10 years (SD = 10.24 years, range = 35–70 years)
  • MALES: Patients (26%); caregivers (31%), FEMALES: Patients (74%); caregivers (69%)
  • KEY DISEASE CHARACTERISTICS: 84% of sample had stage 3 or 4 non-small cell lung cancer; 16% had extensive-stage small cell lung cancer
  • OTHER KEY SAMPLE CHARACTERISTICS: Patients were mostly white (85%) and educated with at least some college credits (86%); 62% was unemployed or retired; caregivers were mostly female (69%) and educated with at least some college credits (95%); most were middle-aged (mean = 51.10 years, SD = 10.24 years) and employed at least part- time (77%); 51% of caregivers were spouses or partners, and others were siblings or the adult sons and daughters of patients

Setting

  • SITE: Single site
  • SETTING TYPE: Outpatient oncology and palliative care clinic  
  • LOCATION: New York City comprehensive cancer center with range of services

Phase of Care and Clinical Applications

  • PHASE OF CARE: Advanced lung cancer within one month of treatment initiation (any form of therapy)
  • APPLICATIONS: Elder care and palliative care 

Study Design

Randomized clinical trial

Measurement Instruments/Methods

All the instruments assessed and held high reliability and validity; patients and caregivers completed these instruments independently of one another.
  • Six-item Patient Reported Outcomes Measurement Information System (PROMIS), a short-form depression measure to assess the negative moods and views of self for the past week
  • Two-item Zarit Burden Interview (ZBI) Short Form 
  • Six-item Treatment Self-Regulation Questionnaire (TSRQ) to assess patient autonomy for engaging in self-care
  • Five items developed by Pierce et al. used to assess caregivers’ autonomous motivation
  • 38-item Likert scale measure based on the work of Lorig et al. (1996) used to measure competence (self-efficacy)  
  • Four-item measure used to measure relatedness (quality of the caregiver-care recipient relationship)

Results

At baseline, 33% of patients and 60% of caregivers had PROMIS depression T-scores > 60 (SD = 11), indicative of high levels of depression. About a quarter of dyads scored higher than 60. At baseline, 46% of patients and 69% of caregivers had PROMIS anxiety T-scores > 60, reflective of high levels of anxiety. More than a third of dyads scored higher than 60.

The study's recruitment rate was 60%, which is comparable to rates reported in other telephone-based cancer dyadic interventions, supporting the feasibility of recruiting advanced LC patients on active treatment and their caregivers for this trial. Patient and caregiver telephone-session participation was 90%. Participants rated the intervention as relevant, convenient, and helpful. Retention was excellent, and dyads completed the majority (88%) of homework assignments. This suggests a highly acceptable intervention. Large effect sizes were found for the impact of the intervention on outcomes of patient and caregiver depression, anxiety, and caregiver burden as contrasted with UMC group outcomes. Large effect sizes for impact of the intervention were also found for additional patient and caregiver outcomes relevant to competence and relatedness and caregiver free choice to provide patient care. Highly depressed and anxious caregivers, identified at the baseline assessment in the intervention group, showed greater improvements in psychological functioning than did those in the UMC group.

Conclusions

This pilot study demonstrated the feasibility and acceptance of a six-session, telephone-based dyadic psychosocial intervention developed for patients with advanced lung cancer and their caregivers and its positive effects on their rates of depression, anxiety, and caregiver burden.

Limitations

  • Small sample (< 30)
  • Baseline sample/group differences of import
  • Measurement/methods not well described
  • Other limitations/explanation: Sample was primarily white and was relatively well-educated; the ability to generalize findings to other populations was limited

Nursing Implications

Telephone-based interventions addressing patients with late-stage lung cancer and their caregivers may improve overall dyadic quality of life. This study indicated support for separate patient and caregiver sessions to address private issues posing challenges in a dyadic discussion. Additional research focused on separate sessions balanced with dyadic sessions may strengthen the evidence for telephone interventions.

Print

Bahrami, M., & Farzi, S. (2014). The effect of a supportive educational program based on COPE model on caring burden and quality of life in family caregivers of women with breast cancer. Iranian Journal of Nursing and Midwifery Research, 19, 119–126.

Study Purpose

To determine the effects of a supportive educational program based on the COPE model on caring burden and quality of life in family caregivers of women with breast cancer

Intervention Characteristics/Basic Study Process

Caregivers randomly were assigned to the experimental or control group. The experimental group had two educational sessions within the first nine days of caregiving and had a follow-up phone call between these two sessions. The education included problem solving, goal setting, learning how to get help for problem solving, and review and discussion of problems faced and actions taken. Study assessments were completed at baseline and at 30 days after study entry. Instruments were completed by questioning.

Sample Characteristics

  • N = 64
  • MEAN AGE = 38 years
  • MALES: 36%, FEMALES: 64%
  • KEY DISEASE CHARACTERISTICS: All patients had breast cancer.
  • OTHER KEY SAMPLE CHARACTERISTICS: The majority of caregivers were spouses or children of the patient. None had healthcare training. Most had limited formal education and low income.

Setting

  • SITE: Single site  
  • SETTING TYPE: Multiple settings  
  • LOCATION: Iran

Study Design

  • RCT

Measurement Instruments/Methods

  • Caregiver quality-of-life questionnaire 
  • World Health Organization quality-of-life questionnaire
  • Caregiving burden questionnaire (Ziret et al.)

Results

Quality-of-life scores after the intervention were higher in the experimental group in physical (p = .001), psychological (p = .017), and environmental (p -.047) domains, and overall (p < .001). Burden was significantly lower after the intervention in the experimental group (p < .001). In the experimental group, burden declined and scores in all quality-of-life measures improved, while burden scores increased and quality-of-life scores declined in the control group.

Conclusions

Findings showed that the program implemented was associated with improved quality of life and reduced caregiver burden.

Limitations

  • Small sample (less than 100)
  • Risk of bias (no blinding)
  • Risk of bias (no appropriate attentional control condition)
  • Measurement validity/reliability questionable
  • Questionable protocol fidelity
  • Other limitations/explanation: Tools used are not well-known instruments, and as these appeared to be directly administered by researchers. If bias may have been introduced is not clear. Internal consistency of instruments ranged from 0.59–0.92. No description of approaches to ensure treatment fidelity was provided. Usual care in the control group is not described. If sessions were provided individually or in a group setting is not clear.

Nursing Implications

Findings suggest that a supportive, psychoeducational intervention was beneficial to caregivers with improvement in quality of life and reduction in caregiver burden. Nurses can assist caregivers in working with them around problem solving, goal setting, and provision of supportive interactions. The intervention consisted of two educational sessions and one phone call in a one-month period.

Print

Budin, W.C., Hoskins, C.N., Haber, J., Sherman, D.W., Maislin, G., Cater, J.R., . . . Shukla, S. (2008). Breast cancer: Education, counseling, and adjustment among patients and partners: A randomized clinical trial. Nursing Research, 57(3), 199–213.

Study Purpose

To determine the effects of care phase-specific psychoeducation and telephone counseling on emotional, physical, and social adjustment of patients and partners, compared to standard treatment of disease management

Intervention Characteristics/Basic Study Process

Patients and partners were randomly assigned to one of four groups in dyads.

  • The control group (group 1) received standard disease management (DM), which consisted of stated adherence of providers to evidence-based treatment protocols.
  • Group 2 received psychoeducation (SE) consisting of four phase-specific videos involving coping, recovering from surgery, and understanding adjuvant therapy.
  • Group 3 received DM plus telephone counseling (TC) using treatment phase-specific scripted telephone counseling interventions.
  • Group 4 consisted of combined SE and TC interventions.

The partner involved was the person the patient identified as most intimately involved in the breast cancer experience. Care phases were defined as Time 0 (T0) (upon study entry), T1 (diagnostic—when the diagnosis of breast cancer was determined), T2 (postsurgical phase—two days after surgery), T3 (adjuvant therapy phase—when making decisions about therapy), and T4 (ongoing recovery—two weeks after completion of chemotherapy or radiation, or six months after surgery if no adjuvant therapy was done).

Sample Characteristics

  • The sample consisted of 126 patients and 126 partners.
  • The average patient age was 53.8 ± 11.7. The average partner age was 51.6 ± 12.0.
  • Gender: (only reporting on partners; all patients were female.)
    • Females: 41.6%
    • Males: 58.4%
  • All patients had breast cancer.
    • Had a family history of breast cancer: 49.8%
    • Had lumpectomy or wide excision: 53.4%
    • Had radical mastectomy: 8.7%
    • Had stage 0 disease: 22.9%
    • Had stage 3 disease: 5.9%
  • Sixty percent of partners were spouses or live-in partners, 12% were daughters, 13% were sisters, 11% were friends, and 4% were mothers.
  • Seventy percent of partners were Caucasian, and 12.8% were African American.
  • Approximately 85% of partners had at least some college education.
  • Sixty percent of partners and 52.8% of patients were employed full time. 71.3% of partners reported a combined income greater than $50,000.
  • Seventy-seven percent of partners reported having children.

Setting

  • Multi-site
  • Outpatient
  • Medical centers in the New York metropolitan area

Measurement Instruments/Methods

  • Profile of adaptation to life clinical scale (PAL-C)
  • Breast cancer treatment response inventory (BCTRI)
  • Self-rated health subscale (SRHS)
  • Psychosocial adjustment to illness scale (PAIS)

Results

Patients' psychological well-being (p = 0.033) improved over time in all groups. There was also a significant difference in improvement over time depending on the study group assigned (group plus time effect) (p = 0.004). The TC group had the highest psychological well-being at the adjuvant therapy stage.

No significant effects were noted among partners. No significant effects related to distress from side effects among patients were noted in any group. For patients in the DM control group (group 1), significantly greater side-effect distress was noted compared to all treatment groups combined (p = 0.02). The side-effect severity for patients had a significant effect over time, and mean severity of side effects was significantly higher from baseline to T4 in the DM control group (p = 0.016). Partners in the SE and TC group (group 4) reported significantly fewer side effects than those in the TC-only group (group 3) (p = 0.017), and a significant overall effect of the intervention (p = 0.024) on physical symptoms was reported. Physical symptoms reported by partners did not demonstrate an effect from time. Partners' overall health scores were not affected, and patients' overall health improved over time for all groups (p < 0.0001). The intervention had no significant effect on vocational adjustment for patients, and in partners, both group assignment and time demonstrated significant main effects in analysis (p </= 0.05). Only time appeared to affect social adjustment.

Conclusions

Most outcomes for patients and partners improved over time, regardless of group assignment. The combination of standardized SE and TC as provided in the study was associated with improved psychological well-being across the timeframe of the study.

Limitations

  • No appropriate control group or attentional control was used.
  • It is not clear what patient education and counseling and amount of patient contact and attention was provided in the DM control group to differentiate fully between interventions. Standard or usual care was not clearly defined or applied.
  • Group assignment was not blinded.
  • The sample tended to be well-educated and of relatively high income levels, so findings may not be applicable to other socioeconomic and cultural groups.
  • All patients were women, and as other studies have shown, differences in variables associated with patient and caregiver gender may influence these outcomes producing findings that may not be applicable to other types of patient-partner groups.
  • Although some improvements were seen over time for both patients and partners, authors point out that higher than normal levels of adjustment problems were evident at the time of final data collection. The findings may have been biased by lack of blinding and the sample who chose to participate, as these patients may have been more motivated or more distressed than others in the total population.
  • It is not clear how outcomes actually changed over time in all groups. The authors provide graphic representation of predicted outcomes over time rather than actual mean results.
  • The time frame of interventions carried out might have influenced the findings. Specifically, the adjuvant therapy group was collected prior to adjuvant therapy, which may be misleading.

Nursing Implications

Both patient and partner reactions to breast cancer vary over time and tend to improve over time, and findings suggest that patient needs and issues vary at different phases in care, suggesting the need for different strategies and interventions according to the phase of care. SE and supportive counseling activities can be helpful to patients and caregivers in management of physical symptoms and side effects. TC intervention in combination with SE activities as provided by video, as in this study, may provide a practical alternative method to provide this type of intervention.

Print

Cameron, J.I., Shin, J.L., Williams, D., & Stewart, D.E. (2004). A brief problem-solving intervention for family caregivers to individuals with advanced cancer. Journal of Psychosomatic Research, 57, 137–143.

Study Purpose

To evaluate an intervention that was designed to improve the problem-solving abilities of family caregivers* of patients with advanced cancer**. Authors tested whether the intervention (a) enhanced positive problem-solving skills and decreased negative problem solving, (b) enhanced confidence in caregivers’ ability to perform caregiving activities, and (c) decreased caregivers’ emotional distress.

* Caregivers were defined as those unpaid family members assuming responsibility for homecare needs of an individual with advanced cancer.
** Advanced cancer was defined as patients with estimated survival prognosis of three to six months.

Intervention Characteristics/Basic Study Process

A one-hour intervention used explanations and a slide presentation or flip charts of problem solving. The intervention was given to caregivers only once, at the time of recruitment. The intervention involved:

  1. Introducing examples of problem-solving techniques from a Home Care Guide  for Advanced Cancer, which was developed by the American College of Physicians to help caregivers COPE (be Creative, Optimistic, Plan, and obtain Expert information).
  2. Encouraging the caregivers to use a five-step approach to address problems. These steps were to (a) define the problem, (b) identify when to seek professional help with the problem, (c) identify what they (caregivers) could do to help, (d) consider possible obstacles to their caregiving plan, and (e) carry out and adjust the plan.

Sample Characteristics

  • The sample included 34 family caregiver participants.
  • Mean age of caregivers was 53.6 years. No SD or range was mentioned.
  • Caregivers were 67.6% (n = 23) female and 32.4% (n = 11) male.
  • Caregivers had to be those giving care to patients diagnosed with advanced cancer, defined as having an estimated survival prognosis of three to six months.
  • To be included in the study, participants had to be 18 years or older, be able to speak and read English, be able to give written consent, and be clear of severe visual, hearing, or cognitive impairments that would interfere with their ability to participate.

Setting

  • Single site
  • Inpatient setting
  • Teaching hospital (University Health Network in Toronto, Ontario, Canada): While the patient attended a clinical visit, the research assistant met separately with the caregiver.

Phase of Care and Clinical Applications

  • End-of-life care phase
  • Elder care; palliative care

 

Study Design

A one-sample pretest/post-test design was used. There was no control group. Survey data were collected at baseline (recruitment) and then by phone four weeks after the intervention was done.

Measurement Instruments/Methods

  • Social Problem-Solving Inventory–short form (SPSI-SF): Used to assess caregivers’ ability to problem-solve. The scale has five subscales representing: (a) positive problem-solving orientation, (b) negative problem-solving orientation, (c) rational problem-solving orientation, (d) impulsivity/carelessness scale, and (e) avoidance style scale.
  • Profile of Mood States–short form: Used to assess emotional well-being. This was an established and reliable tool. The scale includes six subscales: (a) tension-anxiety, (b) depression-dejection, (c) anger-hostility, (d) fatigue-inertia, (e) vigor-activity, and (f) confusion-bewilderment.
  • Caregiver Assistance Scale (CAS): Used to assess the level of assistance provided by caregivers to patients in activities of daily living, instrumental activities of daily living, and treatment-related activities. This was an established and reliable scale.
  • Caregiver Self-Efficacy Scale: Developed by the authors to assess caregivers’ confidence in their ability to perform each of the caregiving activities. The seven-point scale has ratings ranging from one (not very confident) to seven (very confident). The authors averaged the scores, yielding an overall confidence score ranging between one and seven, with higher scores indicating greater confidence. They calculated an excellent internal consistency of this developed scale in the sample (α = 0.90).

Results

The authors provided a good description of how the original sample went from 112 to 34 caregivers, and the basis for attrition or exclusion were reviewed clearly, giving good insight into factors to consider when researching this group of caregivers of patients with advanced cancer. Reasons that led to shrinking of the sample included (a) some patients who were identified with advanced cancer did not need assistance at home, thus they did not have caregivers (n = 7), (b) some caregivers declined participation (n = 34), (c) some participating caregivers did not complete baseline survey because they changed their mind, their patient died, they were not coming back to the hospital in time to complete the intervention, or they had English language difficulty (n = 13), (d) some caregivers who completed the baseline data did not come back later to receive the intervention (n = 11), (e) some caregivers completing the baseline data and the intervention did not complete the follow-up survey (n = 6), and (f) some caregivers were wrongly identified (patients had advanced cancer but responded to curative treatments, or patients were outliers in terms of the length of time they had been diagnosed with advanced cancer) (n = 7).

Other significant findings include the following.

  • One significant difference was identified between participant and nonparticipant characteristics: Participants gave care to patients who had cancer for a shorter period of time.
  • The mean time between baseline assessment and follow-up assessment was 4.8 weeks (1.28).
  • Caregivers showed significant improvement in their positive problem-solving (mean score at baseline [pretest] was 12.3 [3.56] and at follow-up was 13.7 [3.80], p = 0.054); the authors used a p level of 0.06 to judge significance for this finding.
  • Caregivers showed significant improvement in their confidence in caregiving activities (mean at baseline [pretest] was 6.1 [0.65] and at follow-up was 6.3 [0.60], p = 0.059); the authors used a p level of 0.06 to judge significance for this finding.
  • Caregivers showed significant improvement in emotional tension (mean at baseline was 1.5 [0.97] and at follow-up was 1.2 (0.85), p = 0.024).
  • There was a significant positive correlation between caregivers’ reported levels of fatigue at baseline and their level of impulsivity/carelessness problem-solving subscale score (SPSI-SF) at follow-up (r = 0.40, p < 0.02).

Conclusions

Overall, the findings clearly show potential evidence that the intervention affected caregivers positively. Given that improvements were noted even though participants already showed that they have good levels of confidence in their abilities and problem-solving skills at baseline, the findings strongly suggest that the intervention might have even greater potential among those with lower levels of confidence in their caregiving and problem-solving abilities. The intervention influenced one aspect of emotional well-being (tension subscale) and one aspect of problem-solving (positive problem-solving subscale), suggesting that a modified or more comprehensive or frequent intervention may improve other aspects of emotional well-being or problem-solving. Researchers of caregivers of patients with advanced cancer should consider and address the serious challenges that they may encounter in recruiting this group of caregivers.

Limitations

  • The sample was small, with less than 100 participants.      
  • Baseline sample and group differences existed.  
  • Risk of bias existed due to no control group, no blinding, and no random assignment.
  • Key sample group differences existed that could influence results.*
  • Subject withdrawals were 10% or greater.
  • No information was provided about whether the research assistant who conducted the intervention with participating caregivers had received or had training or expertise in training others in problem-solving. This is an important piece of information because the value or influence of the intervention would be as good as the training that the caregivers received. 
  • The study sample was reduced by 50% of caregivers consented to the study.
  • * The findings regarding significant improvements in caregivers' confidence and positive problem-solving are borderline, and one can argue that p levels of 0.059 and 0.054 are bordering significance but not significant as the authors interpreted them. The customary p level is < 0.05; with no correlations shown, it is hard to accept the interpretation as significant as the authors relaxed the p level to 0.06.

Nursing Implications

Nursing care of patients with advanced cancer should be extended to include care of their caregivers, as they are key in providing care at home. This brief problem-solving intervention significantly improved the emotional tension in caregiver participants, suggesting the value of its use in palliative care settings. The fact that a significant difference existed between participants and nonparticipants in relation to the length of time their patients were diagnosed with cancer suggests that the longer caregivers provide care, the less likely they would be to participate in interventions. This suggests that they (a) may have figured out on their own how to manage the caregiving burden, or that they are too exhausted to participate, or (b) need different types of interventions that meet them where they are, either at home or in their locale, rather than require them to drive to where interventions would be conducted. This findings suggest that researchers may need to focus on caregivers of patients with new onset of disease or those who have had the disease for a short period. Any interventions with these caregivers should be set up in a way that decreases the demand on their time and meet them where they are. Thus, there is a need not only to develop short and effective interventions but also to find ways in which such interventions can be delivered/conducted with caregivers at home.

Print

Carter, P.A. (2006). A brief behavioral sleep intervention for family caregivers of persons with cancer. Cancer Nursing, 29, 95–103.

Study Purpose

To (a) evaluate the feasibility (recruitment and retention, instrumentation, and intervention administration) and effectiveness of a brief behavioral Caregivers Sleep Intervention (CASI) that addressed the specific needs and sleep goals of family caregivers of persons with cancer, and (b) determine the effectiveness of  CASI in improving caregivers’ sleep quality, depressive symptoms, and quality of life

Intervention Characteristics/Basic Study Process

The Caregivers Sleep Intervention (CASI) had two sessions. The initial CASI session (week 2 of the study) lasted one hour and provided knowledge, guided participants in self-assessment of maladaptive habits affecting their sleep quality, and assisted participants to develop personal sleep and relaxation goals. In study week 5, a second one-hour CASI session (booster) reviewed the information provided in the initial session and rated personal sleep and relaxation goal achievement. Topics covered were (a) the importance of sleep and sleep \"myth busting,\" (b) stimulus control: environmental affects on sleep, (c) sleep hygiene: planning for sleep, and (d) relaxation techniques to promote sleep. Attention control participants were given the “back health” control condition at study weeks 2 and 5, with data collection at baseline, three and five weeks, and two, three, and four months postbaseline.

Sample Characteristics

  • The sample included 30 participants.
  • Mean age of participants was 53 years, with a range of 21–85 years.
  • The sample was 63% female and 37% male.
  • To be included in the study, participants had to be age 21 or older, be identified as a family caregiver living with a person with advanced cancer, and have reported difficulty initiating and/or maintaining sleep or nonrestorative sleep for at least one month, with no major diagnosis of depressive disorder or preexisting sleep disorder other than insomnia.
  • The sample was 80% Caucasian, 10% African American, and 10% Hispanic.
  • The relationships of the caregiver to the patient were spouse/partner (57%), adult children (30%), and other (13%).
  • Hours of caregiving ranged from 2 to 24 hours, with an average of 17 hours.

Setting

  • Single site
  • Outpatient setting
  • Central Texas

Phase of Care and Clinical Applications

End-of-life care

Study Design

A repeated measures experimental design was used.

Measurement Instruments/Methods

  • Pittsburgh Sleep Quality Index (PSQI) was used to measure caregivers’ sleep quality.  
  • An actigraph sleep watch was used to measure sleep patterns (latency, duration, efficacy, and wake after sleep onset).
  • Sleep Center for Epidemiological Studies–Depression Scale (CES-D) was used to measure current and immediate past symptoms of depressions.CES-D has demonstrated good reliability at α 0.85 in previous studies.
  • Caregivers Quality of Life Index–Cancer (CQOLC) was used to measure caregiver quality of life. Contextual factors, including caregiver demographic characteristics, patient demographic characteristics, and sleep arrangements, were collected on a demographic sheet.
     

Results

Feasibility: In terms of recruitment, caregivers were difficult to identify and recruit from the community setting but were enthusiastic once identified. In terms of retention, 35 recruited caregivers who met the inclusion criteria were consented and remained in the study through the final data collection.

CASI effectiveness: Sleep duration and efficiency were consistently strongly negatively correlated with caregiver depressive symptoms and quality of life over time. Overall sleep quality and sleep latency were consistently strongly positively correlated with caregiver depressive symptoms over time.

Caregivers’ quality-of-life scores showed improvement across groups. No significant differences or patterns of change were seen between or within groups. All study participants showed improvement in self-reported sleep quality during the study. Caregivers in the CASI intervention group reported greater improvement in overall sleep quality than did the attention control group caregivers at each time point  (CASI group: baseline, M 7.9 [3]; week 5, M 7.2 [3]; month 2, M 6 [3]; month 3, M 5.5 [3]; and month 4, M 5.4 [3]. Control group: baseline, M 7.9 [5]; week 5, M 7.6 [5]; month 2, M 8.4 [5]; month 3, M 7 [5]; and month 4, M 10.3 [6]). Significant differences were seen in caregiver self-reported sleep latency at week 5 (t = 2.29, p = 0.02) and in overall sleep quality then did attention control caregivers at month 4 (t = 2.40, p = 0.03).  

Actigraph data comparisons between groups showed significant differences in sleep latency scores at two months (t = - 2.57, p = 0.02) and duration scores at four months (t = 2.0, p = 0.05).

Conclusions

The CASI intervention group was significantly different from the control group in sleep latency at the end of four months. Sleep latency is defined as the amount of time it takes to fall asleep. Although this is only one aspect of sleep difficulties, it does show that CASI can be effective.

Limitations

  • The sample was small, with less than 100 participants.
  • Risk of bias existed because there was no random assignment.
  • The researchers had difficulty identifying subjects for recruitment from the community setting. 
  • The sample had limited ethnic diversity.

Nursing Implications

Sleeping difficulty for caregivers of patients with advanced cancer who are not currently receiving hospice care is an important focus for nursing research because the area is understudied. One-to-one attention from a nurse and goal setting are powerful strategies that healthcare providers can use with family caregivers that can impact sleep improvements and reduction of depressive symptoms. The feasibility of a CASI intervention study is promising with some needed changes to the attention control group that were outlined in this study. The steady improvement in overall sleep quality of caregivers in the CASI intervention group demonstrated the possibilities of success in a future study.

Print
Demiris, G., Oliver, D.P., Wittenberg-Lyles, E., & Washington, K. (2011). Use of videophones to deliver a cognitive-behavioural therapy to hospice caregivers. Journal of Telemedicine and Telecare, 17, 142–145.
 

Study Purpose

To test the feasibility of delivering problem-solving therapy via videophones

Intervention Characteristics/Basic Study Process

Videophones were installed for caregivers, and in an initial visit, caregivers were asked to review and prioritize common concerns. Three follow-up intervention calls were scheduled from days 5–16 of the hospice admission. Counseling via the videocalls was done to encourage caregivers to be creative and identify alternative solutions to stated problems, predicting consequences and developing an action plan, and trying out and evaluating the effect of the actions implemented. A final call was done to assess caregiver perceptions of the intervention. Calls were supervised to assure treatment fidelity.

Sample Characteristics

  • N = 42   
  • MEAN AGE = 62 years
  • MALES: 19%, FEMALES: 81%
  • CURRENT TREATMENT: Not applicable
  • KEY DISEASE CHARACTERISTICS: All were in hospice; no disease characteristics were reported.

Setting

  • SITE: Single site   
  • SETTING TYPE: Home    
  • LOCATION: Washington

Phase of Care and Clinical Applications

  • PHASE OF CARE: End-of-life care
  • APPLICATIONS: Palliative care

Study Design

Quasiexperimental

Measurement Instruments/Methods

  • Caregiver Quality of Life Index (CQLI)
  • Problem Solving Inventory (PSI)
  • State-Trait Anxiety Inventory (STAI)
  • Technical quality of video calls instrument

Results

Caregivers reported lower anxiety scores after the intervention (p = 0.04). No significant changes occurred in other measures. Eighty-nine percent of attempted calls were successful, and the average technical quality was 48 out of a possible score of 50. Average call duration was 38 minutes (range = 18–84 minutes). Average usefulness of the intervention was rated as 4.8 by caregivers out of a possible score of 5.

Conclusions

The use of video calls to deliver psychoeducational interventions was generally feasible and well received by caregivers. The intervention was associated with a reduction in anxiety levels.

Limitations

  • Small sample (< 100)
  • Risk of bias (no control group)
  • Risk of bias (no blinding)
  • Risk of bias (no random assignment)
  • Measurement/methods not well described
  • Intervention expensive, impractical, or training needs
  • Unclear how measurement instruments were completed
  • Equipment for video calls may not be readily available.
  • Type of patients and disease characteristics were not provided.

Nursing Implications

This study showed that the delivery of an intervention via video call was feasible and had benefit in terms of anxiety reduction for caregivers. Since the time of this study, technology has advanced, and it is more likely that video conferencing can be provided via the Internet. This can be a practical method for providing interventions to caregivers.

Print

Demiris, G., Parker Oliver, D., Wittenberg-Lyles, E., Washington, K., Doorenbos, A., Rue, T., & Berry, D. (2012). A noninferiority trial of a problem-solving intervention for hospice caregivers: In person versus videophone. Journal of Palliative Medicine, 15, 653–660. 

Study Purpose

To compare the effectiveness of problem-solving therapy delivered via videophone versus face-to-face sessions

Intervention Characteristics/Basic Study Process

Caregivers were randomized to the experimental or face-to-face sessions for the intervention. Three videophone calls or sessions were done during 5–18 days after hospice admission. The intervention involved addressing problems initially identified by caregivers, visualization of effective problem solving, positive self-talk, brainstorming approaches to problems, setting goals and solutions, planning action, and evaluating effectiveness of actions taken. A final exit interview was conducted to elicit caregiver perceptions of the intervention. A manual for the intervention was used, all face-to-face visits and videophone calls were audio recorded, and a 10% random sample of recording was evaluated for treatment fidelity.

Sample Characteristics

  • N = 126   
  • MEAN AGE = 59.6 years
  • MALES: 25%, FEMALES: 75%
  • OTHER KEY SAMPLE CHARACTERISTICS: Most were Caucasian and highly educated. Fifty-nine percent of caregivers were adult children of the patient and, in the majority of cases, the patient resided with the caregiver.

Setting

  • SITE: Single site   
  • SETTING TYPE: Multiple settings    
  • LOCATION: Washington

Phase of Care and Clinical Applications

  • PHASE OF CARE: End-of-life care
  • APPLICATIONS: Palliative care

Study Design

Noninferiority, randomized, two-group trial

Measurement Instruments/Methods

  • Caregiver Quality of Life Index-Revised (CQLI-R)
  • State-Trait Anxiety Inventory (STAIS); a six-point change was selected for measurement of noninferiority.
  • Problem Solving Inventory (PSI)

Results

Anxiety reduced significantly in both groups (p < 0.0001). The difference in the video group was not inferior to that in the face-to-face group, and the actual change in anxiety score was greater in the video group. No changes or differences occurred between groups in other study measures.

Conclusions

Delivery of problem-solving therapy, a cognitive behavioral therapy approach, by videophone was not inferior to delivery by face-to-face sessions.

Limitations

  • Risk of bias (no blinding)
  • Subject withdrawals ≥ 10% 
  • Participants mainly lost to follow-up because of patient death

Nursing Implications

The findings showed that a problem-solving intervention was effective to reduce stress in informal caregivers of patients in hospice, and the delivery of the intervention by videophone was not inferior to delivery by face-to-face sessions. Delivery of these types of interventions with technology can be a practical alternative to traditional methods of intervention.

Print

Dockham, B., Schafenacker, A., Yoon, H., Ronis, D.L., Kershaw, T., Titler, M., & Northouse, L. (2015). Implementation of a psychoeducational program for cancer survivors and family caregivers at a Cancer Support Community affiliate: A pilot effectiveness study. Cancer Nursing. Advance online publication.  

Study Purpose

To examine the effectiveness and feasibility of the Family involvement, Optimistic attitude, Coping effectiveness, Uncertainty reduction and Symptom management (FOCUS) program on the quality of life (QOL), benefits of illness and caregiving, communication, and support of cancer survivors and their caregivers in a cancer support community (CSC) site using a small group format

Intervention Characteristics/Basic Study Process

Researchers modified the FOCUS program (a nurse-delivered, home-based intervention for patient/caregiver dyads) for use and administration by social workers at a CSC site to cancer survivors and their caregivers. The program was administered in six sessions over six weeks to three to four dyads in a small-group format.

Sample Characteristics

  • N = 34 dyads
  • AVERAGE CAREGIVER AGE = 53.4 years (range = 31–70 years)
  • MALES: 65%, FEMALES: 35%
  • KEY DISEASE CHARACTERISTICS: Cancer survivors were defined as any person who received a diagnosis of cancer from the time of initial diagnosis until his or her death. Any type or stage of cancer was admissible in the sample as long as other eligibility criteria were met.
  • OTHER KEY SAMPLE CHARACTERISTICS: The majority of caregivers were males, spouses of survivors, married, Caucasian, highly educated, and in good to excellent health.

Setting

  • SITE: Single site    
  • SETTING TYPE: Other    
  • LOCATION: CSC in Ann Arbor, MI

Phase of Care and Clinical Applications

  • PHASE OF CARE: Multiple phases of care
  • APPLICATIONS: Elder care

Study Design

Pre- and postintervention study with no control group

Measurement Instruments/Methods

  • Functional Assessment of Cancer Therapy–General (FACT-G) to assess quality of life (primary outcome)
  • Benefits of Illness Scale (BIS) to assess perceived benefits of illness or caregiving
  • Mutuality and Interpersonal Sensitivity Scale (MISS) to assess dyadic communication
  • Cancer Self-Efficacy Scale (CASE) to assess self-efficacy
  • All measures appeared to have sufficient reliability and validity.
  • The feasibility of the modified FOCUS program was assessed by rates of enrollment, retention, intervention fidelity, and participants’ satisfaction. 
 

Results

The intervention effect was assessed by dyadic scores (survivors and caregivers were treated as a unit). Dyadic QOL (physical, emotional, and functional) was significantly improved from preintervention to postintervention, but there was no improvement in social QOL. Dyadic perception of illness and self-efficacy also were significantly improved, but dyadic communication and support were not. The dyadic main effect size ranged from small to moderate for different outcomes. Effect sizes were larger for survivors than for caregivers. For feasibility, the enrollment rate was 60%, retention was 92%, and the intervention fidelity was 94%. Caregivers and survivors were highly satisfied with the intervention.

Conclusions

The modified FOCUS program was feasible and effective when administered to small groups of survivor/caregiver dyads. However, the assessment of improvement in outcomes considering the dyad a unit may lead to confusion in interpreting the outcomes of specific participants (survivors versus caregivers). 

Limitations

  • Small sample (< 100)
  • Risk of bias (no control group)
  • Risk of bias (no random assignment)
  • Unintended interventions or applicable interventions not described that would influence results 
  • Intervention expensive, impractical, or training needs
  • Other limitations/explanation: This was a well done study despite the identified limitations.

Nursing Implications

Tailored interventions to assist caregivers are effective. Collaborations with community settings that allow for the administration of evidence-based programs assisting caregivers may make such interventions more feasible and available to larger numbers of patients and caregivers. Careful attention to intervention fidelity is essential when programs are translated on a larger scale.

Print

Dubenske, L.L., Gustafson, D.H., Namkoong, K., Hawkins, R.P., Atwood, A.K., Brown, R.L., . . . Cleary, J.F. (2014). CHESS improves cancer caregivers' burden and mood: Results of an eHealth RCT. Health Psychology, 33, 1261–1272

Study Purpose

To compare the effects of Comprehensive Health Enhancement Support System (CHESS) access intervention versus provision of internet with recommended websites for lung care cancer care on informal caregivers’ burden, disruptiveness, and mood

Intervention Characteristics/Basic Study Process

Patients and their caregivers were provided with laptops with internet that allowed access to CHESS. CHESS is a home-based e-health system that helps users to appraise the controllability of cancer-related stressors and improves their cognitive, behavioral, and supportive coping skills by providing them with a variety of information, communication, and coaching services appropriate for cancer caregivers based on their need and preference. CHESS allows sharing critical information with clinicians via Clinician Report, where caregivers are able to communicate their needs, ask questions, and rate patients’ symptoms on a scale of 0–10. A score of 7 or more triggers an email alert to the patient’s treating clinician so he or she is aware of the patient’s and caregiver’s situation on the next patient visit. Patients randomly were assigned to internet use only or CHESS plus internet use. Internet users were provided with internet access and a list of high-quality websites for information.

Sample Characteristics

  • N = 246 (122 in the control [internet] group and 124 in the intervention [CHESS] group)
  • AGE RANGE = 18–84 years
  • MEAN AGE = 55.56 years
  • MALES: 31.7%, FEMALES: 68.3%
  • KEY DISEASE CHARACTERISTICS: Patients with advanced non-small lung cancer IIIA, IIIB, and IV with a life expectancy no less than four months
  • OTHER KEY SAMPLE CHARACTERISTICS: English-speaking adults who are primary caregivers; participants were primarily females (68.3 %), spouses/partners (72%), and highly-educated (53% had an associate's degree); most patients had advanced disease (IV) (66.4%) and other major diseases (57.7%)

Setting

  • SITE: Multi-site    
  • SETTING TYPE: Outpatient    
  • LOCATION: Northeastern, Midwestern, and Southwestern United States

Phase of Care and Clinical Applications

  • PHASE OF CARE: Multiple phases of care
  • APPLICATIONS: Pediatrics, elder care, palliative care 

Study Design

  • Randomized clinical trial with a randomization ratio of 1:1
    • Participants were stratified by study site, caregiver’s race, and relationship to patient.
    • Measurements were administered at pretest and post-tests every two months up to two years, or 13 months after a patient’s death, whichever came first.
    • Analysis involved data from the first eight months only.

Measurement Instruments/Methods

  • Caregivers’ demographics
  • CHESS use (number of logins, number of pages viewed, and time spent on the CHESS system)
  • Disruptiveness was measured by the Caregiver Quality of Life-Cancer Scale (CQOLC) Disruptiveness Subscale.
  • Burden was measured by the CQOLC Burden Subscale.
  • Negative mood was measured by a 16-item subset of the Short Version Profile of Mood States (SV-POMS) focusing on measurement of Tension-Anxiety, Anger-Hostility, and Depression-Dejection.
  • Patient symptom distress was measured by the caregiver’s perception of the patient’s symptom distress using the Edmonton Symptom Assessment Scale (ESAS).

Results

Average use of CHESS among the intervention group was 14.6 logins, averaging browsing 293 pages and spending 177 minutes on the system (almost 50 minutes monthly). Statistically significant improvement was seen in the intervention group over the control group at six months follow-up in burden (p = .02) and negative mood (p = .006), but not in disruptiveness. These effects persisted even when patient symptom distress (on the ESAS) and other covariates were controlled. Analyses also show that these significant differences existed only at six-month follow-up, not at any other times. 

Conclusions

Targeted electronic systems that are designed comprehensively to help caregivers can improve their experience of caregiving by minimizing their perceived burden and improving their mood.

Limitations

  • Risk of bias (no control group)
  • Risk of bias (no blinding)
  • Risk of bias (no appropriate attentional control condition)
  • Intervention expensive, impractical, or training needs
  • Subject withdrawals/attrition 10% or greater
  • Physician consent was needed first before a candidate could be admitted into the study because the intervention required a clinician’s responsiveness to patients’ and caregivers’ needs. 
  • Although training was given to participants who needed training on accessing CHESS and the internet, the study does limit participation of those who may not be computer savvy or would prefer receiving support in means other than electronic.

Nursing Implications

Targeted e-health systems are more likely to be beneficial to caregivers of patients with cancer when they are self-directed and have a comprehensive approach to caregivers’ needs (e.g., information, communication, coaching, interaction with healthcare providers). The benefits of e-health vary among cancer caregivers and depend on how they use the tools offered by such systems. Which feature or combination of features would be most helpful to this group of caregivers remains to be determined.

Print

Farquhar, M.C., Prevost, A.T., McCrone, P., Brafman-Price, B., Bentley, A., Higginson, I.J., . . . Booth, S. (2014). Is a specialist breathlessness service more effective and cost-effective for patients with advanced cancer and their carers than standard care? Findings of a mixed-method randomised controlled trial. BMC Medicine, 12, 194-014-0194-2. 

Study Purpose

To evaluate the effects of a specialized breathlessness intervention service compared to usual care

Intervention Characteristics/Basic Study Process

The breathlessness intervention service (BIS) was a multidisciplinary complex intervention including nonpharmacologic and pharmacologic interventions to support patients with advanced disease and dyspnea. The BIS used first-stage interventions such as positioning to reduce the work of breathing, education, individualized exercise plans, relaxation techniques, sleep hygiene, cognitive behavioral therapy approaches, and other supports. Second-stage interventions applied concurrently included opioids, antidepressants, anxiolytics, etc. Patients referred to this service were randomly assigned to the intervention or to a wait-list control group. Study measures were obtained at baseline and after the intervention. Interviews were done before randomization, at two weeks, and at five weeks. The interviews were recorded and transcribed verbatim for analysis. A final qualitative analysis was done from 20 intervention transcripts that were purposefully sampled to obtain a diverse group from those who improved and did not improve.

Sample Characteristics

  • N = 54 (47 completed five-week evaluations, 39 respondents)
  • MEAN AGE = 69 years (SD = 11.5 years)
  • MALES: 59%, FEMALES: 41%
  • KEY DISEASE CHARACTERISTICS: Lung cancer was most prevalent

Setting

  • SITE: Single site  
  • SETTING TYPE: Not specified    
  • LOCATION: United Kingdom

Phase of Care and Clinical Applications

  • PHASE OF CARE: Active antitumor treatment
  • APPLICATIONS: Palliative care 

Study Design

Randomized, controlled trial

Measurement Instruments/Methods

  • Distress scores caused by breathlessness
  • Hospital Anxiety and Depression Scale (HADS)
  • Chronic Respiratory Questionnaire (CRQ)
  • Numeric Rating Scale (NRS) for distress
  • EuroQol Five Dimensions Questionnaire (EQ 5-D) for generic health status

Results

Patients in the intervention group had greater reductions in breathlessness (1.68 versus 0.23 points, p = 0.049). There were no other significant differences in outcomes for patients or caregivers between study groups. Interventions identified as helpful were providing and teaching the use of a handheld fan, encouraging exercise, coaching in breathing techniques and positioning, medication changes, and referrals to other services. Total costs were lower for the intervention group, and a cost effectiveness analysis showed a 66.4% likelihood that the intervention would result in lower cost and better outcomes in terms of reduced distress from breathlessness. Scores for mastery of symptom management did not change significantly.

Conclusions

This complex psychoeducational and pharmacologic intervention was associated with reduced distress from breathlessness. No effects on patient or caregiver distress, anxiety, or depression were found.

Limitations

  • Small sample (< 100)
  • Risk of bias (no blinding)
  • Risk of bias (no appropriate attentional control condition)
  • Other limitations/explanation: With this complex, multicomponent intervention, it was not possible to determine which aspects were most effective in achieving improved outcomes.

Nursing Implications

Individual interventions such as opioid use have been shown to reduce dyspnea, so it was not possible to determine the relative value and utility of the combined interventions examined here. These study findings suggested that multicomponent, complex interventions to improve symptoms of breathlessness can be cost effective and improve outcomes.

Print

Ferrell, B.R., Grant, M., Chan, J., Ahn, C., & Ferrell, B.A. (1995). The impact of cancer pain education on family caregivers of elderly patients. Oncology Nursing Forum, 22(8), 1211–1218.

Intervention Characteristics/Basic Study Process

Pain-related instruction was given by a nurse with 10 years’ experience in oncology and 2 years’ experience in cancer pain management.

  • Part I: general information about pain
  • Part II: pharmacologic information
  • Part III: principles and techniques of nondrug management of pain

Audiotapes of verbal content were left with patients and caregivers at the end of each of the first two sessions. Each session was approximately one hour long, with five total visits—three to provide information and two for follow-up. Cost was $50 per patient to purchase nondrug intervention equipment such as cold packs, massagers, and relaxation tapes. Caregivers and patients were present at each visit.

Sample Characteristics

  • N = 50 family caregivers of patients who were 60 years of age or older, diagnosed with cancer, had reported cancer-related pain for at least three months, and used opioid analgesics.

Setting

  • Home

Study Design

The study design was quasi-experimental with major limitations.

Measurement Instruments/Methods

  • Caregiver burden tool
  • Quality of life tool
  • Family pain questionnaire

Results

Significant improvements were found in quality of life (psychological well-being, social well-being, and total quality of life) from pre- to postintervention.

The intervention was associated with improvements in caregivers’ knowledge about pain and their experience caring for patients in pain.

Conclusions

The study had no randomization, post-test mean scores were not provided, and significance testing was not supplied. Caregiver burden scores were reported only at baseline.

Print

Harding, R., Higginson, I.J., Leam, C., Donaldson, N., Pearce, A., George, R., . . . Taylor, L. (2004). Evaluation of a short-term group intervention for informal carers of patients attending a home palliative care service. Journal of Pain and Symptom Management, 27(5), 396–408.

Study Purpose

A short-term, closed, multiprofessional group aimed to promote self-care by combining informal teaching with group support.

Intervention Characteristics/Basic Study Process

A single group facilitator introduced multiprofessional input from a changing weekly speaker during six, 90-minute weekly sessions. Groups were capped at 12 caregivers.

The group initially focused on patient issues, and transportation for caregivers and a patient-sitting service were provided when necessary.

A total of four groups were delivered with peer supervision to ensure consistency of the intervention.

Sample Characteristics

  • N = 73 adult, informal, unpaid caregivers of patients receiving palliative care (86% of patients had a diagnosis of cancer)

Setting

  • Home palliative care services in London, United Kingdom

Study Design

The study design was a prospective, observational, comparative (no randomization) between those who accepted the intervention (n = 36) and those who declined the intervention but agreed to data collection in the first wave (n = 37); limitations existed in group assignment.

Measurement Instruments/Methods

  • Zarit burden inventory
  • Palliative outcome scale
  • Eastern Cooperative Oncology Group performance scale
  • Coping responses inventory
  • General health questionnaire-12
  • State anxiety scale

Results

The intervention was not found to affect outcomes for any measures at post-intervention (eight weeks) or follow-up (five months).

Limitations

  • The study had no randomization.
  • Participants had a choice of comparison group.
  • Little information was given about the training or preparation of the group facilitator.
  • The sample was mostly Caucasian.
  • Attrition was a problem.
Print

Heinrichs, N., Zimmermann, T., Huber, B., Herschbach, P., Russell, D.W., & Baucom, D.H. (2012). Cancer distress reduction with a couple-based skills training: A randomized controlled trial. Annals of Behavioral Medicine, 43, 239–252.

Study Purpose

To investigate the short- and long-term effects of a psychosocial side-by-side couple's intervention on disease distress, post-traumatic growth, communication, and dyadic coping among women with breast and gynecologic cancers and their partners

Intervention Characteristics/Basic Study Process

The side-by-side intervention consisted of four meeting sessions between a participating couple and a therapist on a biweekly, face-to-face basis at the couple’s home. Each meeting session lasted two hours. Each of the four sessions focused on a certain theme and had specific objectives.

The Couples Control Program was the control group. Control group couples received only one two-hour session where they were given written educational materials about breast and gynecological cancers. The therapist used a structured protocol when interacting with participants.

Sample Characteristics

  • The sample included 72 participants.
  • Age range of participants was 25–80 years, with a median age of 52 for the combined sample of women and their partners.
  • Males (partners) represented 50% of the sample; mean age of partners (all men) was 52.2 years (SD = 11.3).
  • The study involved women with breast or gynecologic cancers and their partners. Patients’ treatments for their disease included surgery (90%), radiation therapy (72%), chemotherapy (69%), and hormone therapy (60%).
  • There were significant differences between groups for cancer-specific distress (F (1,71) = 6.2, p = 0.02) and fear of progression (F (1,71) = 8.6, p = 0.005) at pretesting.

Setting

  • Multisite
  • Outpatient setting
  • Couples were recruited in three regional hospitals in Germany.

Phase of Care and Clinical Applications

Active antitumor treatment phase

Study Design

 A two-site, controlled, parallel-group study with random assignment (balanced randomization [1:1]) was used.

Measurement Instruments/Methods

Psychosocial distress:

  • Questionnaire on Stress in Cancer Patients (QSC-R23) was used to assess cancer-specific distress. This questionnaire was given to the women only (patients). Internal reliability was good (alpha 0.87).
  • Fear of Progression Questionnaire (FoP-Q) was used to assess fear of cancer progression in both the women and their partners. Internal reliability was good (alpha 0.87).
  • Avoidance-Defense Scale, which is a subscale of the Dealing With Illness Inventory–Revised, assessed how much women and their partners used avoidant behaviors in dealing with the disease. Internal consistency was alpha 0.54 and 0.51 for women and men, respectively.

Benefit finding:

  • Post-Traumatic Growth Inventory was used to assess an individual finding meaning and benefit from the experience of severe life events; this inventory was done for women and their partners.  Reliability was good (alpha 0.92 and 0.91 for women and men, respectively).

Relationship satisfaction:

  • Quality of Marriage Index (QMI) was used to assess marital satisfaction for women and their partners. Reliability was good (alpha 0.95).

Communication:

  • Communication subscale of the Partnership Questionnaire was used to assess communication quality for both women and their partners. Reliability was good (alpha 0.86 and 0.82 for women and men, respectively).

Dyadic coping:

  • Dyadic Coping Inventory was used to assess how partners cope with stress in their relationship; they report on their own behavior, their perceived partner’s behaviors, and their perceived behavior on themselves as a couple. This was measured for women and their partners. Reliability was not reported.

Results

Sample description and differences:

  • Baseline data showed that women in both groups (intervention and control) were somewhat distressed and that both men and women showed high average dyadic coping at baseline in both groups. Furthermore, participants in the intervention group showed significantly higher levels of fear of disease progression than their control group counterparts (M = 39 [SD = 9.2] versus M = 32.8 [SD = 8.6], F (1, 71) = 8.6, p =0.005).
  • The only significant difference between groups was in their continuation with the long-term assessments at 12-month assessment: More couples dropped from the control group (45%) compared with the intervention group (17%) X2 (df) = 1) = 6.7, p < 0.001. In addition, women who dropped in the control group after the post-treatment had lower communication quality (M = 16 [SD = 3.6]) at baseline than those who continued in the study (M = 19.9 [SD = 4.9], F (1, 25) = 4.6, p = 0.04.  

The following changes were observed in the outcome variables:

  • Women in the intervention group showed less avoidant behavior over time compared to women in the control group who showed an increase in avoidant behavior. The interaction between intervention, time, and gender was a significant predictor t (395) = 2.56, p = 0.011 (β = 0.31 [SD=0.12]). Males in the intervention group had an increase in avoidance from pre to first follow-up (third assessment ), whereas males in the control group maintained a high level of avoidance across time.
  • Couples in the intervention group showed a higher level of dyadic coping at all assessments (pre, post, follow-up 1, and follow-up 2), whereas couples in the control group showed decline across post through follow-up 1, with an increase in dyadic coping at follow-up 2.

Conclusions

Side-by-side intervention showed clear benefit compared to the control group in fear of disease progression and avoidant behavior. This benefit was short-term and did not carry through to long-term assessments. There was also clear benefit in dyadic coping and communication, but both were also short-term. 

Side-by-side intervention has shown potential benefit in faster post-traumatic growth compared to control group.

Limitations

  • The sample was small, with less than 100 participants.
  • There were baseline sample/group differences of import.
  • The study had risk of bias due to no blinding and no random assignment, as well as the sample characteristics.*
  • The intervention was expensive, impractical, and/or required training needs.*
  • Subject withdrawals were 10% or higher.
  • Other limitations/*explanation: The study was too complex to be readily comprehensible. Based on the descriptions in the study, it is not clear when the different sessions of intervention occurred, and the timeline was confusing. The reporting was too detailed and presented in a way that loses the reader in the detail. The study design required assessments over time (about 16 months), which leads to attrition challenges. The attrition affected, and possibly contributed to, some bias in the results. The study was thorough but also a case where too much was done. In short, the study was far from parsimony.

Nursing Implications

The findings indirectly indicate that the interdisciplinary team caring for women with cancer should involve the services of psychologists, family therapists, or advanced practice nurses with specialized training in mental and relationship wellness for patients and their partners.

Nursing care should include an assessment of a couple's distress level and communication patterns over the trajectory of a breast or gynecologic cancer illness.  

Attrition and recruitment in long-term studies involving caregivers remain serious threats, and future research designs and methodologies should include clear plans to manage these challenging aspects.

Print

Holm, M., Arestedt, K., Carlander, I., Furst, C.J., Wengstrom, Y., Ohlen, J., & Alvariza, A. (2015). Short-term and long-term effects of a psycho-educational group intervention for family caregivers in palliative home care: Results from a randomized control trial. Psycho-Oncology. Advance online publication. 

Study Purpose

To measure the long- and short-term effects of a group family cancer caregiver psychoeducational intervention delivered in palliative home care settings on caregiver preparedness, health perception, anxiety, reward, burden, and depression

Intervention Characteristics/Basic Study Process

Study caregivers meeting inclusion criteria received random assignments to the psychoeducational or control group, which received standard care support. The former group participated in theoretically based, weekly afternoon group sessions delivered by an interdisciplinary team in a palliative care setting to increase caregiver preparedness for family member palliative care needs. Each session lasted two hours per week over a three-week period. The use of a session manual ensured consistent structure and content presentation to all groups. Content included patient symptom management, daily nutritional care, caregiver support, and existential issues related to family member diagnoses. Both control and intervention groups received standard care from patient palliative care settings. Data collection occurred for both groups at baseline, the end of the intervention, and two months after the intervention.

Sample Characteristics

  • N = 194    
  • AVERAGE AGE = 61.5 years
  • MALES: 34%, FEMALES: 66%
  • KEY DISEASE CHARACTERISTICS: Overall, 90% of the patient sample had cancer with a life expectancy of at least five weeks to allow intervention completion.
  • OTHER KEY SAMPLE CHARACTERISTICS: In total, 90% of caregivers attended two or three sessions, 74% were married, almost half were employed or retired, and more than half lived with the patient. Spouses were the recipients of the caregiver intervention in 48% of study participants.

Setting

  • SITE: Multi-site    
  • SETTING TYPE: Home    
  • LOCATION: Ten specialized palliative home care settings in metropolitan Sweden

Phase of Care and Clinical Applications

  • PHASE OF CARE: End of life care
  • APPLICATIONS: Palliative care 

Study Design

Randomized, unblided, controlled trial consistent with the Consolidated Standards of Reporting Trials

Measurement Instruments/Methods

  • Preparedness for Caregiving Scale (PCS): Assesses degree of caregiver-perceived ability to provide family member with palliative care; good validity, reliability and internal consistency
  • Caregiver Competence Scale (CCS): Assesses caregiver-perceived degree of competency; reflects high internal consistency
  • Rewards of Caregiving Scale (RCS): Measures caregiver degree of perceived rewards of caregiving; reflects high internal consistency
  • Caregiver Burden Scale (CBS): Measures five aspects of strain, isolation, emotional response and context of care; reflects high internal consistency
  • Health Index: Measures degree of caregiver perceived health; high internal consistency
  • Hospital Anxiety and Depression Scale (HADS): Measures degree of experiencing those concepts in palliative care; high Cronbach’s alpha scores on two subscales

Results

The study had 21 intervention sessions programs with an average of four caregivers per session. The mean age of the 175 patients in the study was 72 years, and greater than half of the sample was female and enrolled in Swedish palliative homecare for a median time of four months. In the first caregiver follow-up, the intervention group had significant increases in preparedness (p = 0.041) and caregiving competency (p = 0.001) from baseline as compared to control group (p = 0.041 by simple linear regression analysis). The second follow-up showed significantly higher intervention group scores on caregiver preparedness as compared to the control group (p = 0.12). No other significant findings for caregiving competency, rewards, burden, health, anxiety, or depression were found.

Conclusions

This study’s psychoeducational intervention showed significant improvements in caregivers’ preparedness in short- and long-term measurements and in caregivers’ perceived competency in the short-term. The nature of the intervention (three weeks) may have minimized significant effects on caregiver preparedness, competence, and rewards of caregiving compared to longer, previously published, six-session interventions that found such effects. No negative intervention effects occurred although other caregiver variables did not improve under investigation. Baseline data indicated that caregivers had low to moderate levels of burden, depression, and anxiety, and they had positive health perceptions that may have indicated that a short-term intervention would have a limited effect.

Limitations

  • Risk of bias (no blinding)
  • Subject withdrawals ≥ 10% 
  • Other limitations/explanation: Possible inconsistency with standard care delivery across settings

Nursing Implications

There is a need for diverse cultural randomized, controlled studies defining successful interventions that improve caregiver quality of life during palliative care. This Swedish study reflected high rates of caregiver attrition because of patient deaths or health deterioration. This suggests a critical need for innovative, personalized, short-term interdisciplinary healthcare interventions housed within the context of healthcare systems to meet caregiver needs.

Print

Hudson, P.L., Aranda, S., & Hayman-White, K. (2005). A psycho-educational intervention for family caregivers of patients receiving palliative care: A randomized controlled trial. Journal of Pain and Symptom Management, 30, 329–341.

Study Purpose

To examine the effects of a psycho-educational intervention on the reported levels of preparedness, mastery, self-efficacy, competence, rewards, and anxiety among caregivers of patients receiving home-based palliative care for advanced cancer in comparison to caregivers receiving standard care

Intervention Characteristics/Basic Study Process

The intervention was psycho-educational in nature and was delivered by intervention nurses through two intervention home visits and one intervention follow-up phone call. In addition to the interaction with the nurse, caregivers were given a caregiving guidebook and an audiotape. The guidebook provided easy-to-access information about caring for a dying person, and the audiotape contained a structured relaxation exercise and featured reflections from other carers who also reviewed self-care strategies. The control group received the usual care (24-hour access to phone advice, emergency visits, and prescheduled home visits from nurses, physicians, and other health professionals).

Sample Characteristics

  • The sample (N = 106) included 54 intervention group participants and 52 control group participants.
  • Mean age of participants was 60.78 years (SD = 13.98), with a range of 21–84 years.
  • The sample was 34.9% male and 65.1% female (as calculated by the reviewer).
  • All patients were receiving palliative care.
  • Eligibility criteria for the caregivers included a minimum age of 18 years and be living with a patient with cancer receiving palliative care, be English speaking, and be free of psychiatric illness that could impede ability to complete the study requirements.

Caregiver profile: The majority of caregivers (74.8%) were Australian-born, and 74.3% self-identified as Christians. Thirty-one (31.7%) of participants had professional or university education, and 34.6% did not complete high school education. The caregivers were giving care to their patient for a mean length of time of 16.3 weeks (SD = 5). The majority (87.6%) of participants expressed that they were involved in the care because they wanted to, not because they had to, and 43.4% had at least three friends or family members assisting them in providing care. About half of participants had to stop or reduce their work in order to be able to provide care for their patient. Caregivers of patients who were identified as Eastern Cooperative Oncology Group level 4 (completely disabled and confined to bed at all times) were excluded from participating when identified at screening.                                                                                                                                                                    

Patient profile: Patients cared for by caregivers had advanced cancer and were admitted to home-based palliative services within a week before recruitment. The mean age of patients was 69.14 years (SD = 13.46), with a range of 31–92 years. About half (48.1%) were confined to bed almost 50% of the time, and 11.3% were completely disabled and confined to bed all the time. The majority of patients (66.7%) were spouses or partners of caregivers; the rest were either parents of caregivers (16%) or their offspring (7.6%).   

Setting

  • Multisite
  • Home setting through palliative care centers
  • Two community (home-based) palliative care services in Melbourne, Australia

Phase of Care and Clinical Applications

  • End-of-life care phase
  • Pediatrics; elder care 

 

Study Design

The study design was a controlled trial with random assignment of participants to intervention versus control group. Data were collected at multiple times using self-reported questionnaires.

Measurement Instruments/Methods

  • Preparedness for Caregiving Scale (8 items): This scale has good reliability (0.86–0.92). The reliability coefficient in the current study was checked and was above 0.70 according to the authors. The tool was used to assess the perceived level of readiness for the caregiving role among participants.
  • Caregiver Competence Scale (4 items): This scale has good reliability (0.74). The reliability coefficient in the current study was checked and was above 0.70 according to the authors. The tool was used to assess the perceived level of adequacy to give care among participants.
  • Rewards of Caregiving Scale: The authors selected 10 of the 15 original items. This scale has good reliability (0.77–0.94). The reliability coefficient in the current study was checked and was above 0.70 according to the authors. The tool was used to assess the perceived benefits of giving care among participants.
  • Hospital Anxiety and Depression Scale (14 items): Cronbach’s alpha value was above 0.70 but was not specifically stated; however, it was mentioned that this tool has been widely used to screen for depression and anxiety among the terminally ill and that it was used previously with caregivers of patients with cancer. The authors chose 11 as the cutoff score to make determination about participants’ anxiety and depression.
  • Mastery” scale: This scale has 6 items from the original Caregiver Appraisal Scale (Lawton et al., 1989), which has 12 items. The 6-item scale has a poor reliability (0.59–0.61); the reliability coefficient in the current study was not reported, but because it was low, the authors mentioned that this scale was excluded.
  • Self-efficacy instrument: This tool has two subscales: (a) caregiver self-care efficacy (Cronbach’s alpha 0.76) and (b) problem-solving self-care efficacy (Cronbach’s alpha 0.83). The tool has good reliability for the two subscales, but the reliability coefficients in the current study were above 0.70. The authors reported that they made changes in two  items to make them appropriate for the study.

Results

The intervention and control group were compared to identify any significant differences between them, but none were detected.

Only 12 participants in the intervention group and 15 in the control group filled out the data questionnaires at all three time points. However, the number of participants who completed the data at times 1 and 2 was 75 (35 in the control and 40 in the intervention group), and at times 1 and 3 was 45 (25 in the control and 20 in the intervention group).

Findings of time 1 to time 2 (n = 75):

  • No main effect for group was noticed for preparedness, and no effect for interaction between group and time was noticed either. There was a trend (not significant) for main effect within subjects over time F(1,73) = 3.36, p = 0.071 (ƞ2 = 0.044), indicating that preparedness increased over time.
  • No main effect for group was noticed for rewards. There was a significant interaction between group and time, F (1,73) = 8.44, p = 0.005 (ƞ2 = 0.10); this indicated that while the control group showed a decreased sense of rewards between time 1 and time 2, the intervention group showed an increased sense of perceived rewards between the two assessment times. There was a trend (not significant) for main effect within subjects over time, F (1, 73) =  2.84, p = 0.096 (ƞ2 = 0.37).
  • No significant effects or trends were noticed for self-efficacy, competence, and anxiety.

Findings of time 1 to time 3 (n = 45):

  • No significant main effects between groups were noticed for preparedness, rewards, anxiety, or competence between time 1 and time 3.
  • There was a significant main effect within-subjects over time, F (1, 42) = 4.94, p = 0.032 (ƞ2 = 0.11) for competence. This means that participants, irrespective of group, had increased overall sense of competence at time 3 compared to time 1.
  • There was a main effect trend (not significant) within-subjects for time noted for anxiety F (1, 43) = 2.77, p = 0.10 (ƞ2 = 0.06), indicating that there was decreased anxiety among participants, irrespective of group, between time 1 and time 3.
  • The interaction between group and time was significant in rewards F (1, 43) = 4.68, p = 0.036 (ƞ2 = 0.098). Comparing the means showed that there was decreased average rewards scores among control group participants between time 1 and time 3 and an overall increase of these scores among members of the intervention group. Furthermore, there was a main effect trend (not significant) for “time” within-subjects for rewards F (1, 43) = 3.22, p = 0.08 (ƞ2 = 0.07); this indicates that there was increased sense of reward among participants, irrespective of group, between time 1 and time 3.

Conclusions

Although the study showed that the intervention did not show much effect on most of the assessed caregiver outcomes, it did reveal an unexpected finding. That is, participants in the intervention group showed increased perceived sense of reward over time compared to participants in the control group. The findings suggest that the increased sense of perceived reward may play a role as a coping resource and could potentially have a buffering effect from caregiving burden.
 

Limitations

  • The sample was small (< 30 participants).
  • Risk of bias existed (sample characteristics).*
  • Findings were not generalizable.* 
  • The intervention was expensive, impractical, or required training.*
  • Subject withdrawals were ≥ 10%.
  • Other limitations/*explanation: The study was done in Australia, which runs a different health system than the United States, and this could have implications. It remains unclear whether the lack of evidence for intervention effectiveness is due to the small numbers of participants or due to lack of variability among participants to start with. It is possible that those enrolled in the intervention and control groups were highly functional and independent individuals who did not need help; the fact that they chose to participate could indicate that they were people who were resourceful and willing to learn more about the caregiving experience. It is possible that those who declined participation are the ones who most needed an intervention.

Nursing Implications

Attrition of participants in caregiving studies seems to be a significant factor to consider and one that is hard to control.

The sense of reward or maintaining positive emotions by caregivers of patients in palliative care could be used as a resource to help caregivers cope with caregiving burden.

Although the study did not show much impact of the intervention, it supports the notion that giving information to caregivers is important, especially when given at selected times that are based on the caregivers’ needs during the caregiving experience. The “proper” timing for interventions, as well as the “proper” intervention with caregivers, are areas open for research. The need remains to identify the nature of interventions that are needed by caregivers. These needs seem to be variable depending on the healthcare system in which they are delivered, the specific characteristics of the caregivers, and the settings in which potential interventions are delivered.

Print

Hudson, P.L., Trauer, T., Lobb, E., Zordan, R., Williams, A., Quinn, K., . . . Thomas, K. (2012). Supporting family caregivers of hospitalised palliative care patients: A psychoeducational group intervention. BMJ Supportive and Palliative Care, 2, 115–120. 

Study Purpose

To examine the effectiveness of an inpatient group psychoeducational intervention for caregivers of patients receiving inpatient palliative care

Intervention Characteristics/Basic Study Process

Five education group sessions were delivered using a standardized method, the components and conduct of which were developed by authors in the pilot study that preceded the current study. Each was 90 minutes, and they focused on five topics: what palliative care is, the typical role of family caregivers (CGs), available support services to help CGs, preparing for the future, and self-care strategies for CGs. Caregivers were also given the opportunity to arrange individual meetings with designated multidisciplinary team members based on their needs. CGs were referred formally to family meetings if needed.

Sample Characteristics

  • N = 126 in T1, 107 in T2   
  • AGE = 57 years
  • MALES: 33.3%, FEMALES: 66.7%
  • CURRENT TREATMENT: Other
  • KEY DISEASE CHARACTERISTICS: Adults receiving palliative care, patients with various advanced cancers
  • OTHER KEY SAMPLE CHARACTERISTICS: Adults aged older than 18 years, CGs of adults with cancer receiving palliative care, English speakers, adults willing to be recognized as a patient's primary CG. Those with significant emotional distress were excluded.

Setting

  • SITE: Multi-site   
  • SETTING TYPE: Inpatient    
  • LOCATION: Australia

Phase of Care and Clinical Applications

  • PHASE OF CARE: End-of-life care
  • APPLICATIONS: Palliative care

Study Design

Pre-/postdesign

Measurement Instruments/Methods

  • Family CGs’ needs measured with the Family Inventory of Needs (FIN)
  • Preparedness for CG role measured by the Preparedness for Caregiving Scale (PREP)
  • Competence for the CG role measured by the Caregiver Competence Scale (COMP)
  • General Health Questionnaire (GHQ) to determine if CGs were emotionally eligible to participate.
  • All measures had an alpha greater than 0.87.
  • Measurement occurred before the educational intervention and after three days.

Results

  • Significant (p = 0.028) but small effect (0.22) on FIN, indicating improvement in met needs
  • Significant (< 0.001), moderate effect (0.43) on preparedness
  • No significant change in general health or competence
  • A significant difference between those who declared a religious affiliation (improved GHQ scores) and those who had no religion

Conclusions

The educational intervention showed a small to moderate effect on reducing CGs' unmet needs and improved their sense of preparedness. The intervention did not affect CGs’ competence, although a trend of improvement was observed. The intervention did not improve CGs’ psychological well-being (secondary outcome—intervention was not geared to improve psychological well-being).

Limitations

  • Risk of bias (no control group)
  • Risk of bias (no blinding)
  • Risk of bias (no random assignment)
  • Unintended interventions or applicable interventions not described that would influence results
  • Questionable protocol fidelity
  • Subject withdrawals ≥ 10%
  • Thirteen of the 52 educational sessions 1:1 rather than group

Nursing Implications

Educational interventions improved CGs' sense of preparedness and decreased their sense of unmet needs. They may help improve CGs’ competence.

Print

Hudson, P., Quinn, K., Kristjanson, L., Thomas, T., Braithwaite, M., Fisher, J., & Cockayne, M. (2008). Evaluation of a psycho-educational group programme for family caregivers in home-based palliative care. Palliative Medicine, 22, 270–280.

Study Purpose

To develop, implement, and evaluate a group education program to prepare family caregivers who assume primary care for a relative/friend receiving home-based palliative care

Intervention Characteristics/Basic Study Process

Participants attended three group educational sessions (1.5 hours each) held over a three-week period in one of six palliative care service settings. Educational sessions involved education on the caregiver role, identification of palliative care services, strategies for responding to patient needs, strategies to maintain caregiver well-being, and specific content related to preparing for death and dying care. Evaluation of the intervention included participant completion of seven validated instruments (producing nine outcomes) before program commencement, following program completion, and two weeks following the program. Qualitative assessments also occurred via semistructured interviews with at least one participant per program (16) within two weeks of program completion and via facilitator journals to reflect perceptions of the program.

Sample Characteristics

  • The sample included 44 participants.   
  • Mean age was 59.8 years, with a range of 39–84 years.
  • The sample was 25% male and 75% female.
  • Of the patients, 96% had cancer and 30% had been recently hospitalized; other information about patient disease characteristics is unknown.
  • Of the caregivers, 43% had less than high school education and most worked outside the home. Most caregivers believed their health to be moderately good, had limited financial concerns, and overwhelmingly served as caregivers predominately to their spouse or child because they “wanted to be.”

Setting

  • Multisite  
  • Home setting
  • Rural and urban care services in Australia

Phase of Care and Clinical Applications

  • End-of-life care phase
  • Elder care, palliative care

Study Design

A quasi-experimental, time-series design was used.

Measurement Instruments/Methods

  • Caregiver Competence Scale
  • Preparedness for Caregiving Scale
  • Family Inventory of Need
  • Rewards for Caregiving Scale
  • Social Support Questionnaire
  • Brief Assessment Scale for Caregivers
  • Life Orientation Test

Results

A repeated measures analysis of variance on all nine variables over three testing times found multivariate effects for time (p < 0.001), including moderate associations between time and combined dependent variables (effect size by eta² = 0.36). The intervention had significant effects (p < 0.01 or better) on caregiver preparedness, perceptions of rewards, competence, and having needs met, and this effect was sustained up to two weeks post-program. Caregiver burden showed a significant (p < 0.001) increase between time 2 (post-program) and time 3 (two weeks post-program) of assessment, a finding perhaps related to poor patient prognosis. Social support and optimism levels appeared stable. Qualitative findings demonstrated overall favorable program feedback and appreciation of practical advice on available resources and symptom management provided.

Conclusions

This study found that a conceptually based psychoeducational group intervention for caregivers caring for a dying patient had some positive effects on caregiver preparedness, competence, rewards, and unmet needs. However, the program did not improve caregiver optimism, burden, or social support.

Limitations

  • The sample was small, with less than 100 participants.
  • Risk of bias existed due to no control group and sample characteristics.*
  • The study findings are not generalizable.*
  • Subject withdrawals were ≥ 10%.
  • Other limitations/*explanation: The study had substantial incomplete data, with only 59% of the sample completing all study measures.

Nursing Implications

Findings from this study continue to support the need for oncology nurses to assess and intervene with evidence-based programs focused on meeting the needs of caregivers of terminally ill patients. Results did not show an effect of the intervention to reduce caregiver burden; however, qualitative results desmonstrated caregiver appreciation of information on available resources and symptom management, pointing to the value of provision of this type of information to caregivers.

Print

Hudson, P., Trauer, T., Kelly, B., O'Connor, M., Thomas, K., Summers, M., . . . White, V. (2013). Reducing the psychological distress of family caregivers of home-based palliative care patients: Short-term effects from a randomised controlled trial. Psycho-Oncology. [Epub ahead of print]

Study Purpose

To examine the effects of a four-step, nurse-led, in-person and phone-based psychoeducational intervention on psychological distress, perceived unmet needs, preparedness, competence, and positive emotions among family caregivers of patients with advanced cancer

Intervention Characteristics/Basic Study Process

Family caregivers of patients with advanced cancer enrolled in home-based palliative care services in Australia were randomized to usual care (control) or to a four-step intervention. Caregivers received a written instruction manual on preparation for the caregiving role and a home visit from a family caregiver support nurse (FCSN), who later developed a personalized care plan for the family’s needs in conjunction with the local palliative care team and educated the caregiver on indicated topics. The FCSN followed up by phone to assess needs and to evaluate the continued appropriateness of the care plan, and reinforced relevant educational and psychosocial coping topics, including attempts to assist the caregiver to identify positive aspects of the caregiving experience. Discussion to prepare for the patient’s death and bereavement was conducted during a second home visit, and a written summary of key strategies and resources for caregiving and coping was provided at the intervention’s conclusion.

Sample Characteristics

  • The sample was comprised of 161 family caregivers (70% female, 30% male).
  • Mean age of family caregivers was 59 years (range = 22–88 years).
  • Family caregivers cared for patients with advanced cancer who were enrolled in a home-based palliative care service.
  • Family caregivers were excluded if they were younger than age 18, unable to understand English, or if the patient for whom they cared had a nonmalignant diagnosis or poor functional status. (indicative of impending death).

Setting

  • Multisite 
  • Home setting
  • Three palliative care services in Australia

Phase of Care and Clinical Applications

  • End-of-life care phase
  • Palliative care

Study Design

 A randomized, controlled, two-arm trial design was used.

Measurement Instruments/Methods

  • General Health Questionnaire (GHQ) (12 items) – to measure psychological distress
  • Caregiver Competence Scale (4 items)
  • Preparedness for Caregiving Scale (8 items)
  • Family Inventory of Need–part/scale B (20 items)
  • Rewards for Caregiving Scale (10 items)

Results

No significant improvements were noted in the primary outcome, psychological distress, as measured by GHQ. Caregivers (especially older ones) who received both home visits scored higher for preparedness for caregiving (p = 0.035) compared to the control group, although the effect size was small (0.29 for the two-visit group). Caregiver competence scores were also significantly improved in the two-visit group compared to the controls (p = 0.04), but not for decrease in unmet needs or perceived positive aspects of caregiving postintervention.

Conclusions

The primary outcome of the study, decrease in psychological distress, was not met.

Limitations

  • The intervention may be expensive, impractical, or require training needs*.
  • Subject withdrawals were 10% or greater.
  • Though improvements in caregiver preparedness and competence were noted in the subjects in the intervention group that remained in the study long enough to receive both scheduled home visits, the attrition rate over the four-week period was high, limiting the potential recipients. Whether scores were significant in the two-visit recipients because of the intervention effect alone or due to characteristics of the patients/caregivers who were able to/chose to remain throughout is unknown.
  • Other limitations/*explanation: The authors noted a suboptimal accrual rate (40% of those eligible) with many refusals, indicating a potential selection bias by the caregivers. Attrition was 42% between time 1 and time 2, without a clear etiology, although a trend for those caregivers related to a patient with declining functional status to withdraw was noted.

Nursing Implications

This intervention, although previously piloted, theoretical, and evidence-based, was relatively labor intensive, involving personalized care planning with several reassessments by a study nurse outside of the established palliative care service. The authors noted that, on occasion, recommendations made by the FCSN to address unmet needs were unable to be acted upon by local staff due to inadequate resources, and this may have impacted the lack of significant change in scores. Additionally, a high attrition rate was noted, especially among the subgroup possibly most in need of extra support: caregivers with rapidly declining patients. Future work to support this group is needed.

Print

Hudson, P., Trauer, T., Kelly, B., O'Connor, M., Thomas, K., Zordan, R., & Summers, M. (2014). Reducing the psychological distress of family caregivers of home based palliative care patients: Longer term effects from a randomised controlled trial. Psycho-Oncology, 24, 19–24. 

Study Purpose

To evaluate changes in family caregiver distress between the referral of a patient with advanced cancer to palliative care and eight weeks after patient death based on caregiver involvement in a theoretically- and home-based one-on-one psychoeducational intervention

Intervention Characteristics/Basic Study Process

Family caregivers of patients with advanced cancer enrolled in home-based palliative care services in Australia were randomized to usual care (control) or one of two experimental groups that received usual care and one of two versions of a psychoeducational intervention. One intervention included one home visit and three phone calls, and the other included two home visits and two phone calls to meet rural access issues with some caregivers. Caregivers received written information in a piloted tested guidebook to prepare for the caregiver role, and trained family caregiver support nurses (FCSNs) used intervention manuals to provide consistency in developing and implementing plans to meet family role and caregiver psychological well-being and educational needs. Caregiver distress was measured within a two-week period of patient referral to palliative care (baseline, time 1), one week after the four-week intervention (time 2), and eight-weeks after patient death (time 3).

Sample Characteristics

  • N = 298  
  • MEAN AGE = Females; 59 years, males; 61.7 years (range = 22–88 years)
  • MALES: 30%, FEMALES: 70%
  • KEY DISEASE CHARACTERISTICS: English-speaking adult primary family caregivers of patients with advanced cancer enrolled in home-based palliative care
  • OTHER KEY SAMPLE CHARACTERISTICS: Exclusion criteria included caregivers of patients with nonmalignant diagnoses or a defined poor functional status

Setting

  • SITE: Multi-site    
  • SETTING TYPE: Home    
  • LOCATION: Three states in Australia

Phase of Care and Clinical Applications

  • PHASE OF CARE: End-of-life care
  • APPLICATIONS: Palliative care 
 
 

Study Design

Randomized, controlled trial with two arms (two versions of intervention)

Measurement Instruments/Methods

  • General Health Questionnaire (GHQ): 12 items with a history of established reliability and validity

Results

The study sample included 86% urban caregivers. Diverse patient and caregiver factors caused a 42% caregiver attrition rate between time 1 and time 3 that affected the measurement of caregiver psychological well-being at eight-weeks after patient death. Almost 80% of caregivers provided care to a spouse or parent and lived with the patient an average of six years. There was a significant effect for age (p < 0.001) and gender (p < 0.04), and a close significance of time (p < 0.06), but no significant interaction of time with intervention. Younger and female caregivers had worse (higher) GHQ scores, and an overall analysis indicated that the intervention ameliorated a usual rise in caregiver distress after patient death but did not fully prevent an insult to caregivers' psychological well-being.

Conclusions

Psychological distress decreased by eight weeks after patient death among the caregivers of patients with advanced cancer enrolled in palliative care services if caregivers received a psychoeducational intervention involving one home visit and three phone calls.

Limitations

  • Unintended interventions or applicable interventions not described that would influence results: Authors acknowledged the inconsistency of caregiver support services as part of palliative care services, which would have affected FCSN effect with identified intervention
  • Subject withdrawals ≥ 10%

Nursing Implications

Trained FCSNs exert a powerful role in assisting the caregivers of patients with advanced cancer during the dying process, preventing the complications of prolonged grief. The implementation and evaluation of theoretically-based interventions, tailored to caregiver needs and sociocultural context, can support the efficient multidisciplinary team delivery of care to promote caregiver well-being.

Print

Jepson, C., McCorkle, R., Adler, D., Nuamah, I., & Lusk, E. (1999). Effects of home care on caregivers’ psychosocial status. Journal of Nursing Scholarship, 31, 115–120.

Intervention Characteristics/Basic Study Process

The intervention was directed at patients and caregivers (primarily at patients). The standardized nursing intervention protocol included three home visits and six telephone calls over four weeks from an oncology clinical nurse specialist. Intervention activities included

  • Problem assessment and monitoring
  • Symptom management and teaching of self-care behaviors
  • Coordination of resources.

Sample Characteristics

  • The sample was comprised of 161 family caregivers of patients older than 60 years.
  • Patients
    • Were newly diagnosed (in the past two months) with solid-tumor cancers
    • Were currently hospitalized for surgical cancer treatment
    • Had a prognosis of six months or greater
    • Lived within 50 miles of the study center
    • Had a complex problem at the time of discharge.

Setting

Home setting

Study Design

A controlled trial design was used, with a major limitation.

Measurement Instruments/Methods

  • Caregiver reaction assessment
  • Center for Epidemiologic Studies–depression

Results

No significant differences existed on any outcome measure. No effect on caregiver esteem was found. Among caregivers with physical problems, those in the treatment group had an increase in lack of family support between interviews 1 and 2 followed by a decrease between interviews 2 and 3. Control group subjects displayed the opposite pattern. Caregivers with physical problems had greater decreases in difficulty with finances than those with no physical problems. Caregivers in the control group had a decrease, whereas those in treatment group did not. No significant effect on depression was found. Caregivers in the control group had a decrease in the effect of providing care on physical health between interviews 1 and 2 and then remained constant between interviews 2 and 3. Caregivers in the treatment group displayed the opposite pattern. The analyses are based on some caregivers who had received nonprotocol home care and were dropped from analyses.

Limitations

Little information is presented on the details of the intervention. The control group had some contamination (32.4% of the control group and 32.2% of the intervention group received referrals for home care that were not connected with the study). Findings were difficult to interpret.

Print

Jones, J.M., Lewis, F.M., Griffith, K., Cheng, T., Secord, S., Walton, T., . . . Catton, P. (2013). Helping Her Heal-Group: A pilot study to evaluate a group delivered educational intervention for male spouses of women with breast cancer. Psycho-Oncology, 22, 2102–2109.

Study Purpose

To determine the acceptability and feasibility of HHH-G and the study methods to evaluate its impact on participating men’s skill, self confidence, and self care and to assess the impact of intervention on the participating husbands' ratings of marital quality and depressed mood

Intervention Characteristics/Basic Study Process

HHH-G is a group intervention program with five sessions. Intervention was delivered by two trained educational counselors over five separate 1.5-hour sessions delivered at one week intervals. The five sessions included

  • Anchoring yourself to be strong for her
  • Listening and not fixing
  • Gaining a deeper understanding of her
  • Connecting with her
  • Putting the pieces together.

Each session included a short group presentation by the education counselors and skill building and efficacy enhancing group exercises. Participants were also provided with spouses' workbooks with session specific activities at home and home assignments that focused on enhancing behavioral capabilities including knowledge and skill. Data were collected at baseline, immediately after the last session, and three months later.

Sample Characteristics

  • The sample included 54 couples.
  • Couples included women undergoing breast cancer treatment at Princess Margaret Hospital at Toronto and their husbands.
  • Mean age of the women was 50.6 years.
  • Mean age of the men was 53.1 years.

Setting

  • Single site
  • Inpatient setting      
  • Princess Margaret Hospital at Toronto, Canada

Phase of Care and Clinical Applications

Phase of care: active antitumor treatment

Study Design

A mixed method (one-arm, qualitative, pre-post intervention design) was used.

Measurement Instruments/Methods

  • Demo/clinical data
  • Participation retention and treatment compliance
  • Spouse skill checklist
  • CASE-S
  • CES-D
  • Revised Didactic Adjustment Scale (RDAS)
  • Mutuality and Interpersonal Sensitivity Scale (MIS)

Results

A moderate to favorable increase in skills was noted as measured by the spouse skill checklist (p < 0.001), including the self care and support subscale (p < 0.001) and the wife support scale (p < 0.003). A significant time effect on self efficacy was measured by CASE-S. No significant changes in depressed mood or marital functioning was noted for the husbands, but a significant reduction in depressed mood (p < 0.003) was noted for the wives.

Conclusions

The feasibility and acceptability of HHH-G were supported. No significant reduction in depression scores were noted for male spouses, which might have been caused by the floor effect because baseline CES-D scores were low in male spouses. A large sample size with a control group woul dneed to be studied to truly examine the effectiveness of this intervention program.

Limitations

  • The study had a small sample size, with fewer than 100 participants.
  • There was a risk of bias because there was no control group and no random assignment.
  • Findings were not generalizable.

Nursing Implications

Study demonstrated promising findings on feasibility and reduction in depressed mood for the women with breast cancer. This sounds like a cost-effective approach that could be used by nurses and social workers to improve patient and caregiver outcomes, such as increasing self efficacy and marital functioning.

Print

Keefe, F.J., Ahles, T.A., Sutton, L., Dalton, J., Baucom, D., Pope, M.S., . . . Scipio, C. (2005). Partner-guided cancer pain management at the end of life: A preliminary study. Journal of Pain and Symptom Management, 29, 263–272.

Study Purpose

Intervention goals were to

  1. Educate patient/partner dyads about cancer pain and management.
  2. Teach dyads a variety of pain coping strategies.
  3. Teach partners how to help patients acquire and maintain coping skills.

Intervention Characteristics/Basic Study Process

Three 45- to 60-minute face-to-face sessions with an RN educator for training in pain management strategies were delivered over one to two weeks. Educators were knowledgeable about cancer pain and skilled in coping skills training interventions. Four educators were used, and quality assurance plans were described.

  • In session 1, the training program and materials were explained, a videotape was shown, and a book was given regarding barriers, treatments, side effects, and healthcare provider communication.
  • In session 2, participants received relaxation training and guided imagery.
  • In session 3, an activity pacing method was introduced.

For sessions 2 and 3, the educator guided participants through skills, partners were asked to serve as coach, and the educator provided feedback.

Following completion of the three sessions, the educator reviewed the coping skills found most useful and developed a maintenance plan.

Sample Characteristics

  • The sample (N = 78) was comprised of patient/partner dyads.
  • Participants were assigned to the intervention group (n = 41) or a control group (n = 37) receiving standard care through their medical outpatient or hospice program.
  • Patients had advanced cancer diagnoses and were experiencing disease-related pain (worst pain rating of > 3 on the Brief Pain Inventory), a life expectancy of less than six months, and no change in their disease treatment planned.
  • Patients were older than 18 years of age and met Medicare hospice benefit eligibility criteria (regardless of enrollment).

Setting

Home setting

Study Design

A properly randomized, controlled trial design was used (with small sample size). Power analysis was not reported.

Measurement Instruments/Methods

  • Caregiver Strain Index
  • Chronic Pain Self-Efficacy Scale (for caregivers)
  • Profile of Mood States–Brief

Results

A trend toward reporting lower levels of caregiver strain (p = 0.06) existed.

Partners receiving the intervention reported significantly higher levels of self-efficacy for helping patients control pain and significantly higher levels of self-efficacy for helping patients control other symptoms.

No significant difference was found in positive or negative mood.

Limitations

  • The sample size was small.
  • The study had high attrition rates (31.7% in the intervention group and 24.3% in the control group).
Print

Lapid, M.I., Atherton, P.J., Kung, S., Sloan, J.A., Shahi, V., Clark, M.M., & Rummans, T.A. (2015). Cancer caregiver quality of life: Need for targeted intervention. Psycho-Oncology. Advance online publication.

Study Purpose

To evaluate the effects of a structured, in-person, group multidisciplinary approach on several domains of quality of life (QOL) for patients with advanced cancer and their caregivers

Intervention Characteristics/Basic Study Process

The four-week intervention, tested previously in eight sessions, included six 90-minute sessions. Patients were invited to all six sessions, and caregivers were invited to four. Structured sessions targeted emotional, cognitive, physical, spiritual, and social domains of QOL. Every session opened with 15 minutes of physical therapy and closed with 15 minutes of relaxation therapy. Weekly topics included strategies to deal with health behavior and mood changes, radiation and chemotherapy effects, spirituality, social needs, record keeping, coping, exercise, quality of life, spiritual dimensions of disease, and communication with healthcare and support teams. Healthcare providers with diverse roles delivered the intervention. Ten brief telephone counseling sessions over a period of 20 weeks followed the four-week intervention. Patient/caregiver dyads were evaluated at baseline, four weeks postintervention, 27 weeks postintervention, and 52 weeks postintervention.

Sample Characteristics

  • N = 131  
  • AGE = Not stated
  • MALES: Not stated, FEMALES: Not stated
  • KEY DISEASE CHARACTERISTICS: Caregivers and patients with newly diagnosed (within past 12 months) advanced cancer receiving radiation therapy.  
  • OTHER KEY SAMPLE CHARACTERISTICS: In total, 88% of caregivers were married, 75% were spouses, 62% were employed, and 66% or more had some college education.

Setting

  • SITE: Single site    
  • SETTING TYPE: Outpatient    
  • LOCATION: Suburban cancer center in Minnesota

Phase of Care and Clinical Applications

  • PHASE OF CARE: Active antitumor treatment
  • APPLICATIONS: Palliative care 

Study Design

Randomized, controlled trial

Measurement Instruments/Methods

  • Caregiver Quality of Life Index–Cancer (CQQOL)
  • Linear Analog Self-Assessment (LASA)
  • Profile of Mood States (POMS)

Results

At four weeks postintervention, statistically significant differences in favor of the intervention arm were found for the LASA spiritual well-being domain (p = 0.0.048), the POMS vigor and activity subscale (p = 0.02), the POMS fatigue and inertia subscale (p = 0.02), the POMS total score (p = 0.02), and the CQOLC adaptation domain (p = 0.02). Durability was found at 27 weeks only for improvements in the POMS fatigue and inertia subscale (p = 0.01). At 27 weeks postintervention, the intervention group showed improvement over the standard care group in the CQOLC disruptiveness domain (p = 0.049) and the CQOLC financial concerns domain (p = 0.02). Although levels of significance did not appear, study results were similar at 52 weeks.

Conclusions

Although caregivers showed improvements in a few specific QOL domains assessed in this study, this comprehensive multidisciplinary intervention did not affect overall ​caregiver QOL. Continued study to identify and evaluate specific, tailored interventions focused on improving cancer caregiver QOL is needed.

Limitations

  • Baseline sample/group differences of import
  • Risk of bias (no blinding)
  • Risk of bias (no appropriate attentional control condition)
  • Findings not generalizable
  • Subject withdrawals ≥ 10% 
  • Other limitations/explanation: The results at 52 weeks postintervention were not provided. Limited information was listed about caregiver demographics, which may have influenced study findings.  Recruitment methods and phone call intervention specifics did not appear to interpret study findings. There was a lack of information on the usefulness of intervention for improving caregiver QOL.  

Nursing Implications

Continued research focused on dyadic (patient/caregiver) versus individualized caregiver interventions may offer insight into optimal ways to meet caregiver QOL needs. Conceptually defined and structured mixed methods approaches (qualitative and quantitative) could define components of tailored interventions to minimize caregiver burden and emotional distress that affect caregiver well-being.

Print

Laudenslager, M.L., Simoneau, T.L., Kilbourn, K., Natvig, C., Philips, S., Spradley, J., . . . Mikulich-Gilbertson, S.K. (2015). A randomized control trial of a psychosocial intervention for caregivers of allogeneic hematopoietic stem cell transplant patients: Effects on distress. Bone Marrow Transplantation, 50, 1110–1118. 

Study Purpose

To determine if a modified cognitive behavioral stress management program would have a beneficial effect for caregivers on stress reduction

Intervention Characteristics/Basic Study Process

Caregivers were randomized to either the experimental intervention or usual care groups. The experimental intervention consisted of eight one on one sessions with a social worker beginning post-transplantation and continued weekly prior to evaluation at three months. Sessions were psychoeducational in nature, including coping skills training, health behaviors, improving partner communication, and relaxation as well as other components. Caregivers in the experimental group were given a biofeedback device and asked to use it four to five times weekly to facilitate relaxation. All caregivers from both study groups were encouraged to participate in programs at the facility designed to provide support for patients, families, and caregivers. Study data were obtained at baseline, one month, and three months.

Sample Characteristics

  • N = 122 (four weeks); 101 (12 weeks)  
  • MEAN AGE = 53.5 years (range = 21–80 years)
  • MALES: 23.6%, FEMALES: 75.7%
  • KEY DISEASE CHARACTERISTICS: All patients were undergoing hematopoietic stem cell transplantation.
  • OTHER KEY SAMPLE CHARACTERISTICS: Most caregivers were spouses or partners, and 48% were employed full-time prior to caregiving.

Setting

  • SITE: Not stated
  • SETTING TYPE: Multiple settings

Phase of Care and Clinical Applications

  • PHASE OF CARE: Active antitumor treatment

Study Design

Randomized, controlled trial

Measurement Instruments/Methods

  • Perceived Stress Scale (PSS)
  • Center for Epidemiological Studies (CES) depression scale
  • State-Trait Anxiety Inventory (STAI)
  • Caregiver Reaction Assessment (CRA)
  • Profile of Mood States (POMS)
  • Pittsburgh Sleep Quality Index (PSQI)
  • Short Form 36 (SF-36)
  • A caregiver composite distress score was created from component analysis on variables in study questions for both affective and physical well-being variables.

Results

Baseline results showed higher than normal perceived stress, clinically relevant levels of depression, elevated anxiety, and poor sleep in caregivers. Caregivers in the intervention group had lower stress at three months (p = 0.039) and consistent declines in depression (p = 0.016) and anxiety scores (p = 0.0009) over time compared to controls. There were no differences between groups over time in measures of physical function and well-being. The composite score for caregiver distress was significantly lower among those in the intervention group (p = 0.019).

Conclusions

The psychoeducational intervention tested here demonstrated benefit in the reduction of caregiver psychological distress, depression, and anxiety.

Limitations

  • Risk of bias (no blinding)
  • Risk of bias (no appropriate attentional control condition)  
  • Risk of bias (sample characteristics)

 

Nursing Implications

The findings of this study demonstrated that psychoeducational interventions can be helpful to caregivers in reducing the psychological components of caregiver stress and burden. Educational and supportive interventions are low-risk and can be provided to caregivers in a variety of ways. Reducing caregiver burden can improve their well-being and permit the caregiver to be more effective in fulfilling care needs.

Print

Lee, K.C., Yiin, J.J., & Chao, Y.F. (2016). Effect of integrated caregiver support on caregiver burden for people taking care of people with cancer at the end of life: A cohort and quasi-experimental clinical trial. International Journal of Nursing Studies, 56, 17–26. 

Study Purpose

To test the effects of an integrative, supportive intervention program for caregivers on caregiver strain and burden

Intervention Characteristics/Basic Study Process

Face to face sessions were done with caregivers to assess categories of caregiver burden, and then individually tailored interventions were provided in 30–40 minute individual sessions every two weeks until the patient expired. Telephone calls were done every other week to provide support and redirection to address areas of strain and burden. The intervention involved education, counseling regarding coping strategies, assistance in findings needed resources, and the provision of respite patient care. Patients in a different ward were allocated to a control group and received usual care. Usual care did not include proactive assessment to determine interventions. Ward assignment to control and intervention groups was done randomly. Participants were recruited when hospitalized and followed longitudinally. Data were collected every two weeks. All participants had access to a 24-hour help line.

Sample Characteristics

  • N = 81
  • MEAN AGE = 50.7 years
  • MALES: 18.5%, FEMALES: 81.5%
  • KEY DISEASE CHARACTERISTICS: Various cancer types, with gastrointestinal most prevalent; all were end-stage
  • OTHER KEY SAMPLE CHARACTERISTICS: 82% of caregivers lived with the patient, and more than 50% of caregivers spent greater than 16 hours per day caregiving.

Setting

  • SITE: Single site  
  • SETTING TYPE: Multiple settings  
  • LOCATION: China

Phase of Care and Clinical Applications

  • PHASE OF CARE: End of life care
  • APPLICATIONS: Palliative care 

Study Design

Randomized, controlled, cohort, longitudinal trial

Measurement Instruments/Methods

  • Caregiver Reaction Assessment Tool (CRAT)
  • Heart rate variability via handheld device 
  • McCorkle Symptom Distress Scale (MSDS)
  • Enforced Social Dependency Scale (ESDS)
  • Caregiver Self Efficacy Scale (CSES)

Results

The analysis showed a significant group by time effect for caregiver burden scores (eta square 0.49, p < 0.001) and self-efficacy scores (eta square 0.46, p < 0.001). Those in the intervention group had higher self-efficacy and lower burden. There were no significant differences in patient symptom severity between groups.

Conclusions

The proactive assessment of caregiver stressors and individualized supportive and psychoeducational interventions reduced caregiver strain and burden and increased caregiver self-efficacy.

Limitations

  • Small sample (< 100)
  • Risk of bias (no blinding)
  • Risk of bias (no appropriate attentional control condition)
  • Measurement validity/reliability questionable 
  • Findings not generalizable
  • Subject withdrawals ≥ 10%  
  • Other limitations/explanation: Usual care was not well-defined. It was not clear how many in the control group availed themselves of similar assistance upon request. Multiple repeated measures and possible testing effects existed.
 

 

Nursing Implications

This study demonstrated that purposeful caregiver assessment and individualized planned interventions to support caregivers and work with them regarding their stressors was effective in reducing subjective caregiver strain and burden and improving self-efficacy during the last three months of the patient’s life. This study provided frequent caregiver contact with reassessment, enabling the identification of and response to changing needs.

Print

Leow, M., Chan, S., & Chan, M. (2015). A pilot randomized, controlled trial of the effectiveness of a psychoeducational intervention on family caregivers of patients with advanced cancer. Oncology Nursing Forum, 42, E63–E72. 

Study Purpose

To evaluate the efficacy of the Caring for the Caregiver Program (CCP) to enhance the quality of life of the caregivers of patients diagnosed with advanced cancer compared to caregivers who receive standard care

Intervention Characteristics/Basic Study Process

Participants were randomized to receive the intervention using CCP plus standard care or standard care from home Hospice providers. Two post-test measures were used at four and eight weeks postintervention. The CCP intervention was comprised of a one-hour, face-to-face session to develop a plan of care, a video clip, two follow-up phone calls, and an invitation to join an online social support group.

Sample Characteristics

  • N = 56
  • MALES: 26, FEMALES: 54
  • KEY DISEASE CHARACTERISTICS: Stage IV cancer prognosis of at least three months
  • OTHER KEY SAMPLE CHARACTERISTICS: Receiving Hospice care; English-speaking; greater than 21 years old; caregivers spent a minimum of 20 hours a week with patient; most participants were Chinese

Setting

  • SITE: Home  
  • SETTING TYPE: Four home Hospice and one outpatient clinic
  • LOCATION: Singapore

Phase of Care and Clinical Applications

  • PHASE OF CARE: End-of-life care (stage IV)
  • APPLICATIONS: Palliative care 

Study Design

Pilot-randomized, controlled trial with a two-group pretest and repeated post-test

Measurement Instruments/Methods

  • The Caregiver Quality of Life Index: Cancer (CQOLC)
  • Social Support Questionnaire (SSQ)
  • Depression Anxiety Stress Scale (DASS)
  • General Closeness Scale (GCS)
  • Self-Efficacy in Self-Care Scale (SESCS)
  • RC scale
  • Caregivers' perceived knowledge of advanced care planning and community resources (six-question Likert scale)

Results

Participants in the intervention group showed improvements in all of the data measured by the six scales employed.
 
The intervention group demonstrated an overall improvement in quality of life, social support, self-care, and perceived closeness with the patient. Participants who received the intervention also had lower levels of stress and anxiety. The intervention was successful through its employment of practical tips during the face-to-face visit and through watching the video. In addition, there was an overall improvement in feelings support and perceived improvement in social support. All outcomes showed a significant effect of group assignment (p < 0.05), and those in the intervention group reported high quality of life (p = 0.000) and self-efficacy (p = 0.000) scores.

Conclusions

The CCP had a positive effect on family caregivers providing care to patients with advanced cancer.

Limitations

  • Small sample (< 100)
  • Risk of bias (no random assignment): Per the author's discussion, random sampling method could lead to selection bias on participant characteristics
  • Risk of bias(sample characteristics): Only English-speaking patients were included
  • Findings not generalizable: Sample size could limit ability to generalize
  • Other limitations/explanation: RC scale was not clearly identified; authors should clearly state the source and validity of this scale

Nursing Implications

Identifying at-risk caregivers and implementing a CCP intervention can improve the experience of patients with an advanced diagnosis of cancer and their caregivers. These types of interventions have the potential to decrease caregiver strain and burden by improving access to social supports and improving knowledge and self-efficacy.

Print

Lewis, F.M., Cochrane, B.B., Fletcher, K.A., Zahlis, E.H., Shands, M.E., Gralow, J.R., . . . Schmitz, K. (2008). Helping Her Heal: A pilot study of an educational counseling intervention for spouses of women with breast cancer. Psycho-Oncology, 17, 131–137.

Study Purpose

To enhance spouses’ skills and confidence in communicating and interpersonally supporting their wives with breast cancer

To improve spouses’ self-care, depressed mood, anxiety, and marital adjustment

Intervention Characteristics/Basic Study Process

Baseline measures of the six study scales were obtained: depression, spouse skills, anxiety, self-efficacy of spouse, marital quality, and interpersonal sensitivity and mutuality. Five one-hour sessions were scheduled and delivered at two-week intervals. Details of the fully scripted educational counseling intervention session were described, and content was presented in a tabular format. Homework for each participant to complete with his wife was assigned to build skills and enhance efficacy. An exit interview with each participant and his wife was conducted. Post-test measures were taken.

Sample Characteristics

  • The sample (N = 40) was comprised of 20 wives with breast cancer and 20 male spouses. A total of 26 spouses consented and completed baseline inventories, after which 6 spouses dropped out of the study. A total of 20 spouses completed the intervention program and study post-test measures.
  • Mean age of spouses was 53 years (SD = 9.5); mean age of wives was 48 years (SD = 8.6).
  • Of the 20 wives, 19 were Caucasian and one was Black.
  • Of the 20 spouses, 18 were Caucasian, one was Asian, and one declined to specify ethnicity.
  • Wives were diagnosed with local or regional breast cancer (stages 0–III) within the past six months and had been diagnosed an average of 4.1 months at the beginning of the study (median time since diagnosis of 4.2 months).
  • Ten wives (50%) were receiving chemotherapy, radiation therapy, or both at the time the spouses were participating in the study. Types of treatment received were breast-conserving surgery (55%) and surgical (45%), such as partial, radical, or prophylactic mastectomy.
  • Of the sample, 80% of spouses and 85% of wives had college degrees or higher, and 85% of spouses and 70% of wives worked full- or part-time.
  • The average length of marriage was 17.1 years (SD = 10.7), with a median of 14.8 years.
  • Half (50%) of the couples had one child or more living at home.

Setting

  • Multisite
  • Outpatient setting
  • Pacific Northwest: One-hour counseling intervention sessions were scheduled and delivered at two-week intervals in a private clinic room.

Study Design

A pre/post-test pilot study design was used.

Measurement Instruments/Methods

  • Spouse Skills Checklist: This 11-item checklist was developed for the study and included two parts: a 5-item wife support subscale and a 6-item self-care stress management report.
  • Center for Epidemiologic Studies–Depression (CES-D) Scale: This is a 20-item self-report of symptoms, with a score of 16 or higher indicating need of referral for clinical evaluation of depression. Significant (p = 0.001) reduction in depressive symptoms was reported.
  • Spielberger State-Trait Anxiety (STAI-Y) Scale: Significant (p < 0.001) anxiety reduction was reported.
  • Cancer Self-Efficacy Scale–Spouse (CASE-S): Total scale (19-item self-report) spouse skills significantly (p < 0.001) improved. Subscale improvements were also reported.
  • Dyadic Adjustment Scale (DAS): Four subscales measured affectional expression, consensus, cohesion, and satisfaction. There was significant (p = 0.028) improvement on affectional expression, but was not significant on the remaining subscales.
  • Mutuality and Interpersonal Sensitivity Scale (MIS): There were no significant changes in this 32-item measure of cancer-specific marital quality.

Results

Depressed mood and anxiety were significantly (p = 0.001 and p < 0.001, respectively) diminished; self-efficacy was significantly improved; spousal skills were significantly (p < 0.001) improved; and marital quality was significantly (p = 0.028) improved but only on one of the affectional expression subscales. There was no significant improvement on the other subscales of marital quality. There were no significant changes in the cancer-specific measure of marital quality. Spouses verbalized that the educational counseling intervention was helpful, specifically for listening skills.

Conclusions

A brief, structured, skill-focused, efficacy-enhancing educational counseling intervention has the potential to positively affect spouses’ adjustment (mood and anxiety), skills, self-efficacy, and self-care during the diagnosis and treatment phase of their wife’s breast cancer. The program focuses the intervention on the spouse to reduce tension and improve interpersonal communication regarding the wife’s diagnosis, treatment, feelings, and associated emotions.

Limitations

  • The sample was small (< 30).
  • The stated purpose and goals of the study and intervention did not specify the impact on the wives of participants, yet the wife of each participant was included in the exit interview. Wives’ opinions and responses were not included at the beginning of the study, so there was no baseline for comparison of their responses.
  • The sample was primarily white people with relatively long marriages.
  • Whether the exit interviews were conducted before or after the post-test measurements is not entirely clear.

Nursing Implications

The Helping Her Heal program offers promise to assist with building coping skills and support strategies for couples by educational counseling intervention among spouses of people with breast cancer and other chronic conditions.

Print

Li, Q., Xu, Y., Zhou, H., & Loke, A.Y. (2015). A couple-based complex intervention for Chinese spousal caregivers and their partners with advanced cancer: An intervention study. Psycho-Oncology. Advance online publication. 

Study Purpose

To evaluate the acceptability and feasibility of a couples-based coping intervention, Caring for Couples Coping with Cancer (4Cs), and to gather preliminary data on the efficacy of the intervention

Intervention Characteristics/Basic Study Process

A convenience sample of couples received the 4Cs intervention, a couples-based intervention delivered weekly for six weeks by a researcher or therapist to small groups of couples (three to eight). The couples received semistructured instruction using information via didactic instruction, group sharing and group interaction. Sessions were supplemented using the guidebook Live With Love: Hope for the Best, Prepare for the Worst. Assessments were made at baseline and upon completing the six-week intervention.

Sample Characteristics

  • N = 117 
  • MEAN AGE = Caregivers; 56.8 years (range = 26–76 years), patients; 57.7 years (range = 26–79 years)
  • MALES: Caregivers (33%); patients (76%), FEMALES: Caregivers (67%); patients (33%)
  • KEY DISEASE CHARACTERISTICS: Gastrointestinal, lung, and urogenital cancers (55.6%, 29.9%, and 11.1%, respectively)
  • OTHER KEY SAMPLE CHARACTERISTICS: Stage III and IV cancer; Chinese adult married couples

Setting

  • SITE: Single site  
  • SETTING TYPE: Inpatient  
  • LOCATION: China

Phase of Care and Clinical Applications

  • PHASE OF CARE: Multiple phases of care

Study Design

Nonrandomized, pre- and postintervention study

Measurement Instruments/Methods

  • Cancer Behavior Inventory (CBI-B)
  • Dyadic Coping Inventory (DCI)
  • Cancer-Related Communication Problems (CRCP-SF12)
  • Hospital Anxiety and Depression Scale (HADS) 
  • Benefit Finding Scale (BFS)
  • Revised Dyadic Adjustment Scale (RDAS)

Results

The 4Cs cancer program for couples was easy to recruit for, had relatively low drop-out rate, and was well-tolerated by the participants. The couples showed significant increases in self-efficacy (p < 0.01), the DCI (p < 0.05), the PCS of SF12 (p < 0.05), and positive emotions on benefit finding (p < 0.05). Participants also experienced a significant decrease in overall CRCP (p < 0.05) and anxiety (p < 0.01).

Conclusions

The 4Cs program was feasible to administer to couples facing cancer and appeared to have preliminary data supporting its benefit for the emotional health and coping of couples dealing with cancer.

Limitations

  • Small sample (< 100)
  • Risk of bias (no control group)
  • Risk of bias (no random assignment)

 

Nursing Implications

The 4Cs couples-based intervention shows promise for improving couple efficacy, coping, physical health, and positive emotions. Larger, multisite, randomized, controlled trials of this intervention are needed.

Print

Luker, K., Cooke, M., Dunn, L., Lloyd-Williams, M., Pilling, M., & Todd, C. (2015). Development and evaluation of an intervention to support family caregivers of people with cancer to provide home-based care at the end of life: A feasibility study. European Journal of Oncology Nursing, 19, 154–161.

Study Purpose

To design and evaluate an intervention to address caregiver information and needs when providing end of life care, and to evaluate the intervention for acceptability among caregivers and healthcare professionals, assessing the feasibility of healthcare workers adopting this as daily practice, and assessing its impact on caregiver burden, satisfaction, competence, and preparedness

Intervention Characteristics/Basic Study Process

The study was divided into two interventions. Phase 1 was comprised of interviewing caregivers about the need for practical information, support skills, and their preference on the form in which information should be delivered (identified as a booklet). Phase 2 evaluated the booklet used through validated questionnaires.

Sample Characteristics

  • N = 31 (phase 2)
  • MEAN AGE = 62 years (range = 31–82 years) 
  • MALES: 26%, FEMALES: 74%
  • KEY DISEASE CHARACTERISTICS: Patients were in their last year of life.
  • OTHER KEY SAMPLE CHARACTERISTICS: All participants were aged greater than 18 years, and caregivers lived in the home with patients.

Setting

  • SITE: Community home-based palliative care
  • SETTING TYPE: Hospice and palliative care
  • LOCATION: United Kingdom

Phase of Care and Clinical Applications

  • PHASE OF CARE: End of Life
  • APPLICATIONS: Palliative care

Study Design

This was a mixed-method feasibility study with a convenience sample. Quantitative surveys were collected at recruitment and four to six weeks after initial recruitment. Qualitative data using semistructured interviews and structured personal diaries, logs, and interviews were collected.

Measurement Instruments/Methods

  • Family Appraisal of Caregiving Questionnaire (FACQ)
  • Caregiver Competence Scale (CCS)
  • Preparedness for the demands and tasks of caring (eight items)
  • Hospital Anxiety and Depression Scale (HADS)
  • Short Form 12 v2 (SF-12) Health Survey
  • A single-item Likert scale of perceptions of patient symptom management (I feel I can manage my family member’s/friend’s symptoms)

Results

This study highlighted the benefit of caregiver education and support. Caregivers found the booklet acceptable and were positive about the information provided in the booklet. Caregivers identified that receiving the booklet earlier in the disease process was beneficial. Caregivers reported feeling empowered by the information in the booklet, and identified that it did provide reassurance and improve their competency in the caregiver role. In the second phase, nurses identified that they received fewer calls from caregivers who received the intervention compared to the usual care group. In the quantitative data, the only statistically significant finding was on the positive caregiving Subscale of the FACQ. 

Conclusions

This study demonstrated benefits from the booklet intervention on caregivers’ appraisal of caregiving. In addition, the study highlighted practical issues regarding the timing of the intervention delivery. A randomized control trial would be more effective in furthering the initial positive results identified by this study.  

Limitations

  • Small sample (< 30)
  • Baseline sample/group differences of import
  • Risk of bias (no control group)
  • Risk of bias (no blinding)
  • Risk of bias (no random assignment) 
  • Risk of bias (no appropriate attentional control condition)
  • Unintended interventions or applicable interventions not described that would influence results
  • Measurement/methods not well described
  • Questionable protocol fidelity
  • Other limitations/explanation: As a feasibility study, it was not powered to detect statistic significance. A major limitation was the intervention focused on support for provision of care. There was low nursing participation .

Nursing Implications

Additional effort should be made to adopt an intervention like this into everyday practice to improve both patient and caregiver quality of life outcomes. Nurses can assist in identifying at-risk caregivers earlier in the disease trajectory so the intervention can be initiated earlier on in palliative care.

Print

Mahendran, R., Lim, H.A., Tan, J.Y.S., Hui, Y.N., Chua, J., Siew, E.L., . . . Kua, E.H. (2017). Evaluation of a brief pilot psychoeducational support group intervention for family caregivers of cancer patients: A quasi-experimental mixed-methods study. Health and Quality of Life Outcomes, 15, 1–8. 

Study Purpose

To evaluate the effects of a psychoeducational program (COPE) on caregivers of patients with cancer

Intervention Characteristics/Basic Study Process

The COPE (Caregivers of Cancer Outpatients' Psycho-Education Support Group Therapy) intervention was provided to caregivers during four weeks. The program included didactic content and supportive interventions in group sessions. Study measures were obtained before and after the intervention. A subgroup was invited to participate in semistructured interviews. Caregivers were placed in one of two groups, one of which was wait-listed and used as a control in the analysis.

Sample Characteristics

  • N = 97   
  • AGE = 21 years and older
  • MALES: 35.1%, FEMALES: 64.9%
  • CURRENT TREATMENT: Chemotherapy, radiation 
  • KEY DISEASE CHARACTERISTICS: Patients had varied tumor types, and most had advanced disease.
  • OTHER KEY SAMPLE CHARACTERISTICS: The majority had provided caregiving for 0–6 months.

Setting

  • SITE: Single site   
  • SETTING TYPE: Outpatient    
  • LOCATION: Singapore

Phase of Care and Clinical Applications

PHASE OF CARE: Multiple phases of care

Study Design

Nonrandomized, prospective, parallel group

Measurement Instruments/Methods

  • Caregiver Quality of Life scale
  • Hospital Anxiety and Depression Scale (HADS)

Results

No significant differences existed between study groups in postintervention caregiver quality of life overall or burden subscale scores. Those in the wait-list control group had much better quality of life scores at baseline.

Conclusions

The intervention studied here did not demonstrate an effect on caregiver burden or quality of life.

Limitations

  • Small sample (< 100)
  • Baseline sample/group differences of import
  • Risk of bias (no blinding)
  • Risk of bias (no random assignment) 
  • Risk of bias (no appropriate attentional control condition)
  • Risk of bias (sample characteristics)
  • Key sample group differences that could influence results
  • Substantial differences between study groups existed at baseline for quality of life and burden.

Nursing Implications

The specific psychoeducational program examined here did not demonstrate an effect on caregivers. Several limitations existed.

Print

McMillan, S.C., Small, B.J., Weitzner, M., Schonwetter, R., Tittle, M., Moody, L., & Haley, W.E. (2006). Impact of coping skills intervention with family caregivers of hospice patients with cancer: A randomized clinical trial. Cancer, 106, 214–222.

Study Purpose

To evaluate whether adding a brief problem-solving intervention (i.e., COPE) to caregivers of patients receiving hospice cancer care would be superior to either standard hospice care alone or standard hospice care with emotional support

Intervention Characteristics/Basic Study Process

Intervention group: In addition to standard hospice care, the intervention involved giving three training sessions to caregivers using the COPE problem-solving technique as a coping skill to manage caregiving stress. COPE involves training caregivers how to use Creativity, Optimism, Planning, and obtaining Expert information when needed as well as how to use a homecare guide for advanced cancer. The intervention was done during visits to the caregiver by a trained nurse while a home health aide stayed with the patient. The visits were conducted within seven to nine days of recruitment, but the schedule was not clearly reported.

Control group II: Caregivers and patients received standard hospice care and supportive visits that focused on emotional support only. These visits were scheduled at the same times and frequencies as the COPE training occurred in the intervention group.

Sample Characteristics

  • The sample started with 329 caregiver/patient dyads but decreased at different data collection points.
  • Mean caregiver age was 60 years (SD = 15.27); mean patient age was 70.12 years (SD = 12.58).
  • The caregiver sample was 14.5% male and 85.5% female (average for three groups).
  • Caregivers had to be providing care to adult patients with advanced cancer newly admitted to hospice.
  • The average educational level of participants was slightly above high school education. 
  • No systematic demographics were found among participants in the three groups. 

Setting

  • Single site
  • Inpatient setting
  • Large, nonprofit, community-based hospice in southeastern United States

Phase of Care and Clinical Applications

  • End-of-life care phase
  • Elder care, palliative care

Study Design

A three-group randomized controlled trial design was used.

Measurement Instruments/Methods

  • Caregiver quality of life (QOL) was assessed using the Caregiver Quality of Life Index–Cancer (CQOL-C).
  • To assess caregiver symptom-related burden, the authors adapted the patient Memorial Symptom Assessment Scale (MSAS) by asking caregivers to rate their distress associated with 24 patient symptoms.  
  • Caregiver general mastery was assessed using a six-item scale where caregivers reported their feelings of control and confidence in caregiving.  
  • Caregiver burden and mastery specific to caregiving tasks was assessed using the Caregiver Demands Scale (CDS) to obtain scores for caregiving task burden and caregiving task mastery.

Results

Results of random effect regression models showed significant interactions (time by group) in the intervention group for three of the caregivers’ measured outcomes.

  • Caregiver QOL (p = 0.054)
  • Caregiver symptom-related burden (burden related to patients’ symptoms) (p = 0.001)
  • Caregiving task burden (p = 0.021), with main effect for time (p = 0.014), where increases in task burden scores increased over time

There were statistically significant group by time effects, showing that caregiver QOL was higher in the COPE (p = 0.033) and support groups, and symptom burden was lower in the COPE (p < 0.001) and support groups when compared to the usual care group.

Conclusions

Overall, the study findings show strong evidence of effectiveness of the COPE treatment among caregivers of patients in hospice care. In this group of caregivers, COPE improved caregivers’ overall QOL and caregiver symptom-related burden.

Limitations

  • The intervention might be expensive, impractical, or require training needs.*
  • Subject withdrawals were ≥ 10%.
  • Other limitations/*explanation: Details about the COPE  intervention that were given in the study were insufficient, which is possibly a result of publication space limitations, but additional detail would have made it easier to fully understand the nature of this intervention (e.g., how long did the COPE training sessions last? When specifically were the sessions conducted with the caregivers? Exactly where did the sessions take place?). However, the authors mentioned that the intervention manual is available upon request to those who may wish to replicate the study or use the intervention in caring for caregivers. The differences between the usual care and support group interventions were not clear.

Nursing Implications

Nursing care of caregivers of patients in hospice should involve focused interventions that extend beyond emotional support. COPE is an intervention that can be used with caregivers of patients with cancer in general, hospice or otherwise. This intervention is very promising. The fact that it improved some caregivers’ outcomes in hospice suggests that it can also be very effective under different contexts. 

Print

Mokuau, N., Braun, K.L., Wong, L.K., Higuchi, P., & Gotay, C.C. (2008). Development of a family intervention for Native Hawaiian women with cancer: A pilot study. Social Work, 53, 9–19.

Study Purpose

To determine the feasibility and impact of providing a family-oriented intervention incorporating Hawaiian values on native Hawaiian women with cancer

Intervention Characteristics/Basic Study Process

Recruited patients were randomly assigned to an intervention or control group. The intervention group received sessions of informational and emotional support that incorporated prayer (often done by an elder), participant and staff disclosure of genealogies to affirm spiritual origins, and use of other cultural value items, such as graphics incorporating Hawaiian themes, plant fiber bags for program materials, and sharing of food. Sessions were focused on providing information on cancer basics and understanding of treatment and side effects, as well as information seeking and communication. Sessions included one or two patient-selected family members together. The intervention group had six sessions provided in a variety of locations, including homes, business offices, and libraries. Control group patients received two visits from the research team over three months and were provided with educational brochures and opportunity for having questions answered. Interventions were provided by master’s-prepared social workers.

Sample Characteristics

  • The sample included 12 participants.
  • Mean age of patients was 55 years (intervention group range was 25–76 years; control group range was 48–84 years).
  • Mean age of family members was 54 years.
  • Patients were 100% female, and family members were 50% male.
  • Patients had a variety of cancer types, including breast, ovarian, throat, uterine, lung, and lymphoma.
  • Family members were primarily spouses and adult children.

Setting

Hawaii

Study Design

A randomized prospective trial design was used.

Measurement Instruments/Methods

  • Cancer knowledge assessment (author developed)
  • 12-item self-efficacy scale (author developed) (α = 0.91)
  • Family Crisis-Oriented Personal Evaluation Scale (F-COPES)
  • Brief Symptom Inventory (BSI)

Results

In the intervention group, women showed significant improvement in F-COPES and decrease in BSI scores (p < 0.05). Family members also reported significant increase in self efficacy (p < 0.01) and F-COPES scores (p < 0.01). Women in the control group did not show change on any indicators, and their family members showed significantly poorer F-COPES total scores (p < 0.05).

Conclusions

Provision of a culturally relevant support intervention appeared to have a positive effect on Hawaiian patients and family members coping with cancer.

Limitations

  • The sample was small, with less than 30 participants.
  • No specific diagnostic or symptom information was provided. Differences in these between groups can be expected to have substantial influence on outcomes of interest in this study.
  • No demographic information was provided.
  • No information regarding the stage of disease or phase of care was provided, another set of items that can be expected to influence outcomes.
  • There was no appropriate attentional control, as control subjects received much less intervention time and content than the intervention group.

Nursing Implications

This study points to the need to consider provision of supportive interventions that are designed according to specific cultural values of participants. This particular study has a number of methodologic and reporting issues that limit the usefulness of findings.

Print

Mosher, C.E., Winger, J.G., Hanna, N., Jalal, S.I., Einhorn, L.H., Birdas, T.J., . . . Champion, V.L. (2016). Randomized pilot trial of a telephone symptom management intervention for symptomatic lung cancer patients and their family caregivers. Journal of Pain and Symptom Management, 52, 469–482. 

Study Purpose

To test a telephone-based symptom management (TSM) intervention based on social cognitive theory with patients with lung cancer and their caregivers

Intervention Characteristics/Basic Study Process

The control group received education/support. The goal was to test the effect of TSM on the following patient symptoms: anxiety, pain, breathlessness, fatigue, and depressive symptoms. In caregivers, the focus was on anxiety and depressive symptoms. The intervention group dyads received TSM sessions (each was 45 minutes) for four weeks from a licensed social worker who was trained by a psychologist. The intervention involved giving participants instructions on symptom management, problem solving, cognitive restructuring, emotion focused/self-soothing, communication skills, pleasant activity scheduling, and activity pacing. Participants received identical handouts detailing the points discussed and practice assignment and a CD with instructions for relaxation exercises. The teaching was based on various EB cognitive behavioral and emotion-focused strategies. The sessions focused on both the patient and caregiver.

Sample Characteristics

  • N = 106 patient-caregiver dyads (intervention group = 51 dyads, control group = 55 dyads)   
  • AGE RANGE = TSM group: 20–76 years, control group: 20–80 years
  • MEAN AGe = TSM group: 56.33 years (SD = 14.09), control group: 56.75 years (SD = 13.81)
  • MALES: 27%, FEMALES: 73% of caregivers
  • CURRENT TREATMENT: Other
  • KEY DISEASE CHARACTERISTICS: Caregivers of patients with small and non-small cell lung cancer
  • OTHER KEY SAMPLE CHARACTERISTICS: Dyads were fluent in English, primarily Caucasian, had 13 years of education, and had an average annual household income of $30,000. Sixty-three percent of the caregivers were spouses or partners of the patient. The only difference at baseline between the TSM group and education/support group was caregiver income.

Setting

  • SITE: Multi-site   
  • SETTING TYPE: Outpatient    
  • LOCATION: Indiana

Phase of Care and Clinical Applications

  • PHASE OF CARE: Multiple phases of care
  • APPLICATIONS: Elder care, palliative care 

Study Design

  • Randomized, controlled trial with the intervention group (TSM) compared to education/support group

Measurement Instruments/Methods

Primary outcomes for the caregivers were:

  • Generalized Anxiety Disorder 7-Item Scale (GAD-7) to assess caregiver anxiety symptoms
  • The Patient Health Questionnaire-8 (PHQ-8) to assess for depressive symptoms

Secondary outcomes: 

  • Kilbourn 8-items to assess self-efficacy in managing emotions
  • Social Constraints Scale—5 items to assess perceived social constraints on cancer-related disclosure from the other dyad member

Results

No significant main effects were found for primary outcomes for either patients or caregivers. Small effect size improvement in self-efficacy of caregivers managing their own emotions was observed in the TSM group, while it declined slightly in the education/support group. Also, caregivers in the TSM group reported less perceived social constraints compared to the education/support group. No main effects were noticed in caregivers' self-efficacy in relation to managing patients’ symptoms.

Conclusions

The intervention did not demonstrate a significant effect.

Limitations

  • Small sample (< 100)
  • Risk of bias (no appropriate attentional control condition)
  • Key sample group differences that could influence results
  • Intervention expensive, impractical, or training needs
  • Subject withdrawals ≥ 10%  
  • The intervention included multiple components, so pinpointing cause and effect was difficult.

Nursing Implications

The effect of a nonpharmacological (psychosocial) intervention on the symptoms of patients with lung cancer and their caregivers is inconclusive. Psychosocial interventions improved caregivers’ self-efficacy in managing their emotions and perception of social constraints.

Print

Nejad, Z.K., Aghdam, A.M., Hassankhani, H., & Sanaat, Z. (2016). The effects of a patient-caregiver education and follow-up program on the breast cancer caregiver strain index. Iranian Red Crescent Medical Journal, 18(3), e21627. 

Study Purpose

To assess the benefit of an intervention of two face-to-face education sessions at the bedside and four interventions for patients with breast cancer and their caregivers

Intervention Characteristics/Basic Study Process

Sixty patients with breast cancer and their caregivers (60 pairs) were randomized to either the usual care group or the intervention group. Both groups received a comprehensive medication review and education after the pretest. The intervention group received two face-to-face education sessions reviewing a booklet that discussed patient needs; informational needs, such as nutrition, medication, rest, and activity; and chemotherapy side effect management, as well as four telephone calls assessing educational needs, followed by a post-test three weeks later.

Sample Characteristics

  • N = 60 patient–caregiver pairs   
  • AGE: 30–50 years
  • MALES (%): Not described, FEMALES (%): Not described
  • CURRENT TREATMENT: Chemotherapy. Patients with breast cancer referred to the Hematology and Oncology Research Center of Tabriz University of Medical Sciences 
  • KEY DISEASE CHARACTERISTICS: Patients newly diagnosed with breast cancer and new to chemotherapy

Setting

  • SITE: Single site. Recruitment from the Hematology and Oncology Research Center of Tabriz University of Medical Sciences (patients treated at a large hematology/oncology research center in Northwest Iran)
  • SETTING TYPE: Outpatient 
  • LOCATION: Iran

Phase of Care and Clinical Applications

  • PHASE OF CARE: Active antitumor treatment
  • APPLICATIONS: Palliative care 

Study Design

  • Randomized, experimental, two-group design (blinding to the research designer)

Measurement Instruments/Methods

  • Caregiver Strain Index Questionnaire-12 items (yes/no)

Results

The mean caregiver strain score of the intervention dropped from 8.3 (SD = 2) to 2.3 after the intervention. The paired t-test results indicated that both the intervention and control groups were statistically different after the intervention in terms of caregiver strain scores (p < 0.001).

Conclusions

The caregiver group that received the intervention showed a statistical improvement in the pretest/post-test caregiver scores. The results showed an impressive improvement in the reduction of caregiver strain.

Limitations

  • Small sample (< 100)
  • Findings not generalizable
  • Small group
  • The authors mentioned that the recruitment of patients newly diagnosed with breast cancer might have swayed the results.

Nursing Implications

The authors described a benefit from an oncology nurse-focused intervention to decrease caregiver strain and burden. This intervention lacked specificity. Further areas of exploration should be depression, anxiety, and future use of additional tools to assess the effectiveness. Future studies should obtain larger sample sizes.

Print

Northouse, L., Kershaw, T., Mood, D., & Schafenacker, A. (2005). Effects of a family intervention on the quality of life of women with recurrent breast cancer and their family caregivers. Psycho-Oncology, 14, 478–491.

Study Purpose

To determine if patients with advanced breast cancer and their family caregivers involved in a family-focused intervention report better appraisal, coping, and quality of life and less uncertainty and hopelessness than do similar people involved in standard care only

Intervention Characteristics/Basic Study Process

Dyads (patient/primary family caregiver) were assessed at baseline and stratified according to type of current treatment and number of breast cancer recurrences and then randomized into a usual care group or experimental group (usual care plus FOCUS program). The FOCUS (family involvement, optimistic attitude, coping effectiveness, uncertainty reduction, and symptom management) program was a family-focused information and support intervention of about 1.5 hours on three occasions scheduled one month apart. Intervention boosters occurred via prearranged follow-up 30-minute telephone conversations with both patients and caregivers led by the same nurse. Dyads completed assessments at baseline, three months after the home visits, and six month following phone conversations.

Sample Characteristics

  • The sample included 134 patient/caregiver dyads.   
  • Mean caregiver age was 52 years (range = 18–87 years); mean patient age was 54 years.
  • The sample was 62% male and 13%+ female (some patient caregivers were daughters, siblings, or friends; later two groups were not identified by gender).
  • Patients had a confirmed diagnosis of recurrent breast cancer within the past month/had a disease-free interval at the time. More than half had history of mastectomy, family history of breast cancer, and node involvement with surgery; more than half had experienced their first recurrence of breast cancer; and more than half were receiving chemotherapy or a combination of methods to treat the cancer.
  • Of the dyads, 77% were Caucasian and had completed an average education level of 14 years, with median annual family income of $30,000–$50,000.

Setting

  • Multisite  
  • Home setting
  • Midwestern United States

Phase of Care and Clinical Applications

Active antitumor treatment phase

Study Design

A prospective, longitudinal, randomized clinical trial design was used.

Measurement Instruments/Methods

  • Omega Screening Questionnaire (OSQ) (reliability and validity established earlier)
  • Appraisal of Illness Scale
  • Appraisal of Caregiving Scale
  • Mishel Uncertainty in Illness Scale
  • Beck Hopelessness Scale
  • Brief COPE
  • Functional Assessment of Cancer Therapy (FACT) Scale (version 3, FACT-B, FACT-G)
  • Short Form–36 (citations provided affirm all instruments with adequate psychometric properties, current study validated psychometrics)
  • Karnofsky  Performance Status Scale
  • Patient medical records

Results

Patients who received the FOCUS program reported a significant decrease in negative appraisal of illness from baseline to three months (p < 0.008), while patients who received usual care did not. However, at six months, the FOCUS and usual care groups had similar scores on this dimension. FOCUS group patients significantly decreased their hopelessness score from baseline (p < 0.03), but the usual care group significantly increased their hopelessness score (p < 0.03). At six months postintervention, no significant difference in hopelessness scores existed between groups. FOCUS group caregivers showed a similar significant (p < 0.004) decrease in negative appraisal of illness while the usual care caregivers did not. However, this difference was not sustained at six months. No changes in quality-of-life measures were found over time between usual care and FOCUS group participants (patients and caregivers).

Conclusions

The FOCUS program assisted patients with recurrent breast cancer to report less hopelessness following the initial intervention, and both FOCUS patients and their caregivers reported less negative appraisal of illness; however, intervention effects were not apparent over time. The intervention did not show an effect on caregiver quality-of-life measures.

Limitations

  • The study had baseline sample/group differences of import.
  • Risk of bias existed due to no blinding, no appropriate attentional control condition, and sample characteristics.*
  • Key sample group differences could have influenced results.*
  • Subject withdrawals were ≥ 10%.
  • Other limitations/*explanation: There were significant differences between groups in measured hopelessness at baseline.

Nursing Implications

Study findings suggest that the intervention provided had a short-term effect on improving patient sense of hopelessness. Findings do not support effectiveness of this approach on caregiver quality of life.

Print

Northouse, L.L., Mood, D.W., Schafenacker, A., Kalemkerian, G., Zalupski, M., Lorusso, P., . . . Kershaw, T. (2013). Randomized clinical trial of a brief and extensive dyadic intervention for advanced cancer patients and their family caregivers. Psycho-Oncology, 22, 555–563.

Study Purpose

To determine (a) whether patient/caregiver dyads randomly assigned to either an extensive or brief dyadic intervention (i.e., FOCUS program) would have better intermediary outcomes (i.e., less negative appraisals and increased resources) and primary outcomes (i.e., improved quality of life) than control patient/caregiver dyads receiving usual care, and (b) whether risk for distress and other antecedent factors (e.g., gender, type of dyadic relationship, cancer type) would moderate the effect of either the brief or extensive program on intermediary and primary outcomes

Intervention Characteristics/Basic Study Process

A stratified randomization process placed participants into groups according to risk status, cancer type, and research site. Participants were then randomly assigned to one of three study arms: control group (usual care), brief FOCUS group, or extensive FOCUS program. The FOCUS intervention was a home-based dyadic intervention used by the authors in previous randomized controlled trial studies and focused on providing support to the patient/caregiver unit. The FOCUS program addressed five content areas: family involvement, optimistic attitude, coping effectiveness, uncertainty reduction, and symptom management. The brief FOCUS program intervention consisted of three contacts (two 90-minute home visits and one 30-minute phone encounter), while the extensive FOCUS program intervention included six contacts (four 90-minute home visits and two 30-minute phone discussions). Both interventions lasted 10 weeks. Trained intervention nurses delivered the home interventions, and attention occurred throughout the study to ensure treatment fidelity (protocol checklist, length of session, randomly tape-recorded sessions). Data were collected by research nurses blinded to dyads’ group assignment at baseline and at three and six months postbaseline for the three groups in the study.    

Sample Characteristics

  • The sample was comprised of 484 patient/caregiver dyads.  
  • Mean patient age was 60.5 years (SD = 10.9); mean caregiver age was 56.7 years (SD = 12.6).
  • Males represented 38.6% of patients and 44.2% of caregivers; females represented 61.4% of patients and 55.8% of caregivers.
  • At enrollment, most patients had breast cancer (32%), followed by lung (29%), colorectal (25%), or prostate (13%) cancer.
  • Mean years of education for participants was 14.8 years (SD = 2.7).
  • The sample was 85.5% Caucasian, and 74% of caregivers were spouses.
  • Patients (72%) and caregivers (66%) had comorbid conditions, including hypertension or heart problems; patients’ average length of time since diagnosis was 47 months, and 66%  were receiving chemotherapy; no significant differences existed between the three groups (usual care, brief intervention, and extended intervention) on changes in treatment, progression of disease, demographic or medical variables, or study attrition.
  • The study had 62.4% retention.

Setting

  • Multisite
  • Home setting
  • Four cancer centers in metropolitan areas of Michigan, Nevada, and Connecticut

Phase of Care and Clinical Applications

  • Active treatment phase for advanced cancer
  • Late effects and survivorship

Study Design

A longitudinal, repeated measures randomized controlled trial design was used. 

Measurement Instruments/Methods

  • Risk for Distress Scale (RDS): To measure demographics, health history, current concerns, and symptom distress; appropriate internal consistency values were collected at three assessment times.   
  • Appraisal of Illness Scale (patients) and Appraisal of Caregiving (caregivers): To assess perceptions and appraisal  of cancer experience; appropriate internal consistency values were collected at three data collection times; averaged internal consistency range was 0.89–0.91 over three assessment periods.
  • Mishel’s Uncertainty in Illness Scale: To measure the degree of uncertainty experienced during an illness    
  • Beck Hopelessness Scale: To measure level of  hopelessness; averaged internal consistency range was 0.84–0.88 over three assessment periods.  
  • Brief Cope: To measure active and avoidant coping behaviors; averaged internal consistency range was 0.78–0.88 over three assessment periods. 
  • Healthy Behaviors: To assess activities encouraged in the intervention (i.e., healthy diet, exercise); averaged internal consistency range was 0.61–0.67 over three assessment periods.
  • Lewis Mutuality and Sensitivity Scale: To assess communication within dyad; averaged internal consistency range was 0.93–0.94 over three assessment periods.
  • Lewis Cancer Self-Efficacy Scale: To measure the level of self-efficacy; averaged internal consistency was 0.98 over three assessment periods.
  • Social Support Questionnaire: To measure the level of dyadic support; averaged internal consistency range was 0.84–0.87 over three assessment periods.
  • Functional Assessment of Cancer Therapy: To assess overall quality of life and four domains: social, emotional, functional, and physical well-being; averaged internal consistency range was 0.75–0.86 over three assessment periods.

Results

Data collection occurred over four years with 62.4% retention for all data assessment points. Significant group by time interactions occurred and showed that the dyads in the FOCUS program (brief and extensive) had significant improvement in coping (p <0.05), self-efficacy(p < 0.05), social quality of life (p < 0.01),  and  caregivers’ emotional quality of life (p < 0.05). Extensive FOCUS program (p = 0.001) and brief FOCUS program (p = 0.033) dyads had decreased avoidant coping at three months, but this only remained in the brief group at six months. Extensive FOCUS program and brief program dyads maintained social quality of life at three and six months. Only brief FOCUS group couples significantly increased their use of healthy behaviors at three months (p = 0.001), but this was not sustained at the six-month assessment. Overall effects varied by intervention dose (extensive versus brief FOCUS program), and most were found only at three months. Risk for distress supported very few moderation effects.

Conclusions

Both brief and extensive FOCUS interventions supported positive dyadic outcomes, but few sustained outcomes were identified at six-month assessment. This study showed a six-week intervention significantly improved dyads’ self-efficacy, but a shorter three-week intervention significantly improved their use of healthy behaviors. Level of risk for distress did not significantly affect or moderate the outcomes of the intervention.

Limitations

  • Only patients’ risk status (high versus low [categorical variable]) was used to stratify patients into groups, thus limiting the sample found for study; using a continuous variable or a dyadic risk score might have produced different findings.
  • The study needed to collect information on patients’ functional status over time for more complete interpretation of findings.
  • The study had no attentional control.

Nursing Implications

This study offered insight into a theory-based intervention for advanced and diverse diagnosis of patients with cancer and their caregivers to improve their coping ability, self-efficacy, and quality of life as individuals and as dyads. Too often caregivers are ignored in patient oncology care, yet evidence indicates that the interdependency of patient and caregiver demands nursing interventions that respond to patient and caregiver cancer challenges. With a move toward more interdisciplinary oncology care and measurement of cost-effective and quality interventions, nurses will play an important role in supporting inpatient and outpatient practice environments that implement and evaluate multifaceted interventions known to improve dyadic response to cancer.

Print

Northouse, L., Schafenacker, A., Barr, K.L., Katapodi, M., Yoon, H., Brittain, K., . . . An, L. (2014). A tailored web-based psychoeducational intervention for cancer patients and their family caregivers. Cancer Nursing, 37, 321–330

Study Purpose

To test the effects and feasibility of a tailored web-based, nurse-delivered psychoeducational intervention on patient and caregiver outcomes

Intervention Characteristics/Basic Study Process

Patients and caregivers were given unique access to web-based questionnaires and completed these separately. The web-based program consisted of three sessions two weeks apart to provide education sequentially, including cancer effects on family, family strength and value of teamwork, family concerns, addressing problems, communication tips, types of support, finding meaning in illness, and looking to the future. Dyads completed sessions together and were offered choices of tailored activities to promote interaction between web sessions. Dyads also received tailored messages according to baseline score in areas such as communication, support, and self-efficacy. Follow-up email session reviews were done after each web session. The study was conducted over eight weeks. Study measures were obtained at baseline and week 8.

Sample Characteristics

  • N = 38 dyads  
  • MEAN AGE = 54.8 years for patients, 50.6 years for partners
  • MALES: 39.5% of caregivers, FEMALES: 60.5% of caregivers
  • KEY DISEASE CHARACTERISTICS: Breast, colorectal, lung, and prostate cancers; 47.4% had stage I or II disease, and the rest had stage II or IV.  
  • OTHER KEY SAMPLE CHARACTERISTICS: 5.3% were African American, and 2.6% were Asian—the rest were Caucasian. More than 80% had at least some college education, and  more than 60% had annual incomes of $50,000 or more.

Setting

  • SITE: Single site  
  • SETTING TYPE: Home  
  • LOCATION: United States

Study Design

  • Quasi-experimental

Measurement Instruments/Methods

  • FACT- G version 4 for quality of life
  • Satisfaction with the program 
  • Benefits of illness scale
  • Lewis Mutuality and Interpersonal Sensitivity Scale 
  • Social Support Scale 
  • Lewis Cancer Self-Efficacy Scale

Results

Dyads had decreased overall emotional distress (p < .05), anger-hostility (p < .01), and fatigue-inertia (p < .05), and improvement in overall quality of life (p < .05), physical quality of life (p < .05), functional quality of life (p < .01), and perceived benefits of illness or caregiving (p < .01). Effect sizes for caregivers were medium for self-efficacy (d = .40) and social support (d = .33), although changes from baseline were not statistically significant. Small effect sizes were seen for emotional and fatigue outcomes. Significant change over time was seen for total emotional distress, anger-hostility, fatigue inertia, and total quality of life for dyads together. Patients improved in the areas of physical quality of life, and caregivers improved in the area of self-efficacy. The web-based program had an 86% retention rate.

Conclusions

Findings show that this type of web-based program is feasible and may benefit patients and caregivers.

Limitations

  • Small sample (less than 100)
  • Risk of bias (no control group)
  • Risk of bias (no blinding)
  • Risk of bias (no random assignment)
  • Risk of bias(sample characteristics)
  • Findings not generalizable
  • Intervention expensive, impractical, or training needs
  • Other limitations/explanation: The sample was generally well educated and had a higher-level income, so findings may not be generalizable to other groups. The intervention would only apply to those with internet access and some level of comfort with computer use. What phase of care all patients were in, or if any were receiving treatment, is not clear. If participants had any other supportive services involved in their care is not clear.

Nursing Implications

Findings suggest that provision of a tailored, web-based psychoeducational and messaging intervention is feasible and may improve some patient and caregiver outcomes. A web-based approach for this type of intervention can provide a practical alternative for patients with ability to use the internet. Additional well-designed studies in more diverse patient groups will be helpful to further demonstrate efficacy and usability.

Print

Pasacreta, J.V., Barg, F., Nuamah, I., & McCorkle, R. (2000). Participant characteristics before and 4 months after attendance at a family caregiver cancer education program. Cancer Nursing, 23, 295–303.

Intervention Characteristics/Basic Study Process

The Family Caregiver Cancer Education Program consisted of three group sessions in two-hour blocks as a psychoeducational program for caregivers led by nurse–social worker teams. A panel of 20 multidisciplinary experts in oncology designed the program content.

Topic areas in the program included

  • Talking to a loved one’s physician and managing in the healthcare system
  • Handling role and family relationship changes
  • Care of medical equipment
  • Managing symptoms
  • Talking to children
  • Managing other jobs and responsibilities
  • Handling insurance and financial issues
  • Dealing with emotional reactions
  • Finding and asking for help
  • Self-care maintenance.

Sample Characteristics

  • The sample (N = 187) included English- or Spanish-speaking caregivers who attended the program and completed baseline and four-month follow-up measures.
  • Caregivers provided care to patients with a variety of cancer diagnoses during or after transition points of illness.

Setting

Caregivers of patients with cancer from 18 healthcare agencies in a large northeastern city (results from one site of a larger multisite study)

Study Design

A nonrandomized, well-designed trial design was used, with pretest, post-test, baseline, and four-month postintervention scores completed.

Measurement Instruments/Methods

  • Caregiver Reaction Assessment
  • Caregiver Demands Scale

Results

  • Only the impact of caregiving on household finances (dimension of burden) showed significant improvement from baseline to four months postintervention.
  • Significant improvement was found in knowledge and assessment of the caregiver role at four months postintervention.
  • A significant gender difference existed: More men withdrew and did not complete the second interview. However, no statistical differences in measured burden were found by gender.

Limitations

  • Selection and self-selection bias is a potential limitation in the study.
  • Generalizing is difficult because the burden of caregivers who were unable to attend the program may differ from those who did.
Print

Sherwood, P.R., Given, B.A., Given, C.W., Sikorskii, A., You, M., & Prince, J. (2012). The impact of a problem-solving intervention on increasing caregiver assistance and improving caregiver health. Supportive Care in Cancer, 20, 1937–1947.

Study Purpose

To evaluate whether participation in a problem-solving intervention influences level of caregiver assistance with patient symptoms, caregivers’ depressive symptoms, burden mastery, and caregiver/patient communication at 10 and 16 weeks postparticipation

Intervention Characteristics/Basic Study Process

Caregivers in the dyads assigned to the intervention group received three telephone calls from a master’s-prepared nurse to assist them in assessing and managing patient symptoms. Both the intervention and control groups received written materials on these topics, and control group caregivers received calls from a non-nurse coach who reminded them of applicable content sections of the written materials. Measures were obtained at baseline, 10, and 16 weeks. Both groups received a symptom management toolkit containing written materials on symptom assessment, communication, and symptom management. Intervention group caregivers received three phone calls from a nurse to assist in identifying and managing symptoms; control group caregivers received calls from a non-nurse coach who reinforced the material in the toolkit.
 

Sample Characteristics

  • The sample was comprised of 225 caregiver/patient dyads.
  • Mean caregiver age was 53.8 years (SD = 12.7) in the intervention arm and 56.1 years (SD = 13.1) in the control arm. Ranges were not reported.
  • The intervention arm had 47 males (SD = 41.96) and 65 females (SD = 58.04); the control arm had 43 males (SD = 38.05) and 47 females (SD = 41.96).
  • Patients were 40 years or older, without cognitive impairments; were English-language users; had touch-tone telephone service; had stage III or IV solid tumors; were not on hospice; and had a family caregiver.
  • Patients had to be actively receiving chemotherapy during the study and report both pain and fatigue within seven days prior to recruitment.
  • Patients under the care of a psychiatrist or psychologist were excluded.

Setting

  • Multisite 
  • Home setting
  • Telephone intervention

Phase of Care and Clinical Applications

Active antitumor treatment phase

Study Design

A randomized controlled trial design was used.

Measurement Instruments/Methods

  • Cancer Symptom Inventory
  • Caregiver Symptom Involvement (developed for study)
  • Center for Epidemiologic Studies–Depression Scale (CES-D)
  • Caregiver Reaction Scale (caregiver burden)
  • ENRICH Marital Inventory–Family Communication Subscale
  • Pearlin Mastery Scale

Results

The statistically significant effect observed in the study related to a differential effect of depression in the intervention arm at the 10-week time point, where caregivers with lower levels (less than 16 on the CES-D) were twice as likely to provide an intervention for patient symptoms than those with a higher depression score (OR = 1.99, 95% CI = 1.45–2.76). Caregiver self-esteem was also statistically significantly different in the intervention arm (p = 0.04), but the authors noted that in the clinical context, this finding was likely due to chance.

Conclusions

Although no significant differences were noted overall between the nurse-led intervention and the control group, knowledge was gained regarding the impact of caregiver depressive symptoms on the degree of interventions offered to the patient with cancer experiencing symptoms. Future research may focus on tailoring interventions based on dynamic characteristics such as degree of caregiver distress concurrent to increasing patient symptom needs.

Limitations

The study had risk of bias because the sample was described as primarily Caucasian: The authors cited literature noting variances in caregiver emotional responses by race, which might have implications given the findings associating depressive symptoms and caregiver responsiveness.

Nursing Implications

The authors speculated that caregivers with higher levels of depressive symptoms may be less able to act on behalf of their family members who are patients. In practice, nurses should assess whether caregiver distress may impact outcomes such as medication adherence and effective symptom reporting and management to avoid impending crises.

Print

Shum, N.F., Lui, Y.L., Law, W.L., & Fong, Y.T.D. (2014). A nurse-led psycho-education programme for Chinese carers of patients with colorectal cancer: Nga Fan Shum and colleagues report on a randomised controlled trial of the effectiveness of telephone support in Hong Kong. Cancer Nursing Practice, 13, 31–39. 

Study Purpose

To evaluate the effectiveness of a nurse-led telephonic psychoeducational intervention on caregiver strain and burden

Intervention Characteristics/Basic Study Process

Patients were randomized to receive the study intervention or usual care. In the intervention group, caregivers received structured telephone calls at two, four, and eight weeks after hospital discharge from colorectal nurse specialists. Calls were used to identify caring problems or psychological issues, provide related information, educate caregivers according to patient needs at different stages of recovery, and provide support. A checklist for the telephone call was used, and nurses compiled field notes during the calls. These were reviewed to ensure intervention accuracy and consistency. Usual care patients received an information sheet for home care education on discharge and were provided with a telephone hotline number. Study data were collected via phone interview.

Sample Characteristics

  • N = 135  
  • MEAN AGE = 54 (range = 19–86 years)
  • MALES: 25.7%, FEMALES: 74.3%
  • KEY DISEASE CHARACTERISTICS: All had colorectal cancer; 31% had colostomy; about half of the sample were to receive adjuvant chemotherapy
  • OTHER KEY SAMPLE CHARACTERISTICS: The largest proportion of caregivers were wives, and the next most frequent caregivers were daughters; 13.6% had education beyond secondary school level; most had low incomes

Setting

  • SITE: Single site    
  • SETTING TYPE: Home  
  • LOCATION: Hong Kong

Phase of Care and Clinical Applications

  • PHASE OF CARE: Multiple phases of care

Study Design

Single, blinded, randomized, controlled trial

Measurement Instruments/Methods

  • Depression, Anxiety, and Stress (DASS) scale 
  • Zarit Burden Interview (ZBI)
  • World Health Organization Quality of Life (WHOQOL-BREF) measure 

Results

Main concerns of the caregivers were dietary advice, chemotherapy advice, and the management of wounds, bowel function, and pain. Depression and anxiety declined over time in all subjects. At two and four weeks, the reduction in depression scores was greater for those in the intervention group (p = 0.013 and p < 0.001, respectively). The mean decline in anxiety scores was greater in the intervention group at two and four weeks as well (p < 0.004). Psychological health scores improved more for those in the intervention group (p < 0.007). Scores for care burden declined more for the intervention group at all follow-up periods (p < 0.001). Baseline depression and anxiety scores were mild. There were significant group-by-time effects for depression, care burden, psychological health, and social relationships.

Conclusions

The findings of this study demonstrated the effectiveness of this nurse-led telephonic psychoeducational intervention to reduce caregiver burden.

Limitations

  • Risk of bias (no appropriate attentional control condition)  
  • Risk of bias (sample characteristics)
  • Other limitations/explanation: Possible testing effect with repeated measures using the same study instruments; the sample was all patients with colorectal cancer, and issues and findings may not apply to other groups; initial calls were mainly focused on issues such as wound care; it is not clear what the timing of chemotherapy was in relation to the intervention

Nursing Implications

This study showed that the provision of telephonic psychoeducation for caregivers was effective in reducing caregiver burden. The intervention also may benefit in terms of symptoms of depression and anxiety. However, the initial levels of these symptoms were not indicative of a clinically significant problem, and results declined in all caregivers over time. The provision of a telephonic intervention by nurses can be an effective and practical method of providing education and support to caregivers.

Print

Steel, J.L., Geller, D.A., Kim, K.H., Butterfield, L.H., Spring, M., Grady, J., . . . Tsung, A. (2016). Web-based collaborative care intervention to manage cancer-related symptoms in the palliative care setting. Cancer, 122, 1270–1282. 

Study Purpose

To examine the effects of a collaborative care intervention for reducing depression, pain, and fatigue in patients and stress and depression in caregivers

Intervention Characteristics/Basic Study Process

Patients and their caregivers were randomized to receive a web-based stepped intervention or enhanced usual care. The web-based intervention included access to a psychoeducational web site and a care coordinator who contacted participants by telephone every two weeks and in-person during clinic or hospital visits about every two months. The care coordinator communicated with the medical team or primary care physician for recommended interventions. In addition to the psychoeducation, the website provided an area where patients could record and monitor their own symptoms, a library of relaxation and educational videos, a participant chat room, and a general resource library. Care coordinators were trained in cognitive behavioral therapy and used an intervention manual. Weekly supervision of care coordinator adherence to the study protocol was provided. In the enhanced usual care group, if a patient had high depression or pain scores, he or she was contacted by a care coordinator and was provided with education and referrals for symptom management interventions as needed.

Sample Characteristics

  • N = 188   
  • MEAN AGE = 61 years (SD = 11)
  • MALES: 73%, FEMALES: 27%
  • KEY DISEASE CHARACTERISTICS: Hepatic cancer or cancers with liver metastases

Setting

  • SITE: Single site   
  • SETTING TYPE: Home    
  • LOCATION: Pittsburgh

Phase of Care and Clinical Applications

PHASE OF CARE: Late effects and survivorship

Study Design

Randomized, controlled trial

Measurement Instruments/Methods

  • Caregivers: Center for Epidemiological Studies Depression Scale (CES-D), Caregiver Quality of Life Index-Cancer (CQLI-C) scale
  • Patients: CES-D, Brief Pain Inventory (BPI), Functional Assessment of Cancer Therapy-Fatigue (FACT-F), FACT-General (FACT-G), FACT-Hepatobiliary (FACT-Hep)

Results

There were 84 page views by caregivers. Most frequently viewed areas were living with cancer, diagnosis and treatment, and managing symptoms. For patients, no differences existed between groups in fatigue or pain. An effect size of 0.748 for caregiver stress was seen at the six-month follow-up. An effect size of 0.372 was seen for caregiver depression.

Conclusions

The web-based psychoeducational intervention did not show significant benefit for patient symptoms compared to enhanced usual care. This intervention aimed at patients but may have had some benefit for caregivers of those patients with significant symptoms.

Limitations

  • Risk of bias (no control group)
  • Risk of bias (no blinding)
  • Unintended interventions or applicable interventions not described that would influence results
  • The number of caregivers involved in the analysis of impact on stress, etc., was not stated, and no statistical analysis of differences between caregiver groups was provided.  
  • The enhanced usual care group had many of the same features as the experimental group—the main difference was the website use.  
  • There may not have been enough difference between interventions to show significant effects.

Nursing Implications

This study looked at the effects of a web-based system for psychoeducation and support of patients on patient symptoms and associated caregiver stress and depression scores. No significant difference in patient symptoms compared to the usual care study group was seen. This intervention, aimed at management of patient symptoms, may have had some positive benefit for caregivers.

Print

Tsianakas, V., Robert, G., Richardson, A., Verity, R., Oakley, C., Murrells, T., . . . Ream, E. (2015). Enhancing the experience of carers in the chemotherapy outpatient setting: An exploratory randomised controlled trial to test impact, acceptability and feasibility of a complex intervention co-designed by carers and staff. Supportive Care in Cancer, 23, 3069–3080. 

Study Purpose

To test the feasibility and acceptability of a codesigned (caregiver and healthcare provider) Take Care intervention, and to measure caregiver knowledge, information needs, confidence, and emotional well-being related to intervention efficacy

Intervention Characteristics/Basic Study Process

The Take Care intervention included a 19-minute DVD designed to offer education, information, and support to the caregivers of patients starting chemotherapy. It also included a booklet and a one-hour protocol-guided group (≤ 5) consultation offered prior to the delivery of the first cycle of IV chemotherapy.

Sample Characteristics

  • N = 47  
  • MEAN AGE = 52.77 years (range = 24–76 years)
  • MALES: 35%, FEMALES: 65%
  • KEY DISEASE CHARACTERISTICS: Caregivers of chemotherapy-naïve patients with breast, colon, or lung cancer scheduled to begin IV chemotherapy; all patients aged 18 years or older
  • OTHER KEY SAMPLE CHARACTERISTICS: Caregivers were nominated by patients as providing most support; aged greater than 18 years; married; spouse; and half were employed

Setting

  • SITE: Single site    
  • SETTING TYPE: Outpatient    
  • LOCATION: London teaching hospital

Phase of Care and Clinical Applications

  • PHASE OF CARE: Active antitumor treatment

Study Design

Two-phase, mixed-method, pilot randomized, controlled trial with a later purposive subsample of the Take Care group gaining variation in caregiver characteristics and data on intervention feasibility and acceptability (focus groups of six healthcare providers also served later purpose)

Measurement Instruments/Methods

  • Visual Analog Scale (VAS) for knowledge of chemotherapy and side effects 
  • Supportive Care Needs Survey for Partners' and Caregivers' unmet needs (SCNS-P)
  • Experience of care (investigator-designed 11-item Likert scale)
  • Perceived confidence in supporting friend/relative (investigator-designed six-item numerical rating)
  • General Health Questionnaire 12 (GHQ-12) for emotional well being

Results

There were statistically significant improvements in intervention group caregiver knowledge of chemotherapy and side effects (all nine areas ≤ 0.012), their satisfaction with care in (five of seven items), and in the number of caregivers who felt they had the information they needed or that their informational needs had been met (p < 0.001). No difference between the intervention and control groups was demonstrated in emotional well-being or in caregivers' experience of care except for one item involving the time that staff members spent with care, which was higher for the intervention group (p = 0.014). Confidence in coping showed a trend towards significance after the intervention. In addition, focus group data showed that the intervention was feasible, acceptable, and useful.

Conclusions

The Take Care intervention for the caregivers of patients starting IV chemotherapy showed promise as an acceptable and feasible approach to support and educate caregivers.

Limitations

  • Small sample (< 100)
  • Risk of bias (no appropriate attentional control condition)
  • Unintended interventions or applicable interventions not described that would influence results
  • Measurement/methods not well described
  • Measurement validity/reliability questionable
  • Findings not generalizable
  • Other limitations/explanation: The five instruments used in study lacked reliability and validity information (three were developed by an investigator, not clear which author). The definition of feasibility and acceptability was not clear enough to aptly interpret findings. Some concern about intervention acceptability existed with the 41% participation refusal rate. Only 33% of caregivers who were invited to focus groups participated (four of 12). The caregiver convenience sample was 70% Caucasian British. Only one author analyzed the qualitative data, and it was unclear who moderated the group to avoid bias. It was unclear how the NHS in the United Kingtom may have influenced findings.

Nursing Implications

The Take Care intervention may provide an acceptable, useful, and feasible approach to meet the educational and support needs of the caregivers of patients receiving chemotherapy the first time. Additional studies reflecting methodologic rigor with United States population groups are warranted to determine if the intervention may be effective in improving caregiver knowledge of chemotherapy and side effects, meeting educational and support needs, and improving caregiver emotional well-being and role satisfaction.

Print