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.
Applebaum, A.J., & Breitbart, W. (2012). Care for the cancer caregiver: A systematic review. Palliative and Supportive Care, 1-22.
A systematic review was used.
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.
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.
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.
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.
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.
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
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.
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).
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.
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.
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.
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?
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.
Transition phase after active treatment
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.
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.
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.
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.
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
PHASE OF CARE: End-of-life care
APPLICATIONS: Palliative care
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.
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.
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…
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
PHASE OF CARE: Multiple phases of care
APPLICATIONS: Palliative care
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.
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.
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.
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.
To update and evaluate intervention studies and current state of the science regarding support for caregivers in a systematic review
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.
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.
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.
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.
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
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.
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.
The review was limited to English language studies.
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.
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.
To synthesize findings from intervention studies for sleep disturbance in patients with cancer and their caregivers.
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.
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.
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.
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.
Insufficient evidence was provided to draw any conclusions regarding intervention effects for caregivers.
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.
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
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
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.
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.
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.
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.
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
The final sample of studies used in the meta-analysis was 29, including a total of 3,495 subjects across all studies.
Intervention Types
Appraisal Domain Results
Coping Resources Domain
Quality of Life Domain
Effect of Intervention Characteristics
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.
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.
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.
STUDY PURPOSE: To explore the efficacy of interventions provided to couples
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).
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.
Samples were all well-educated Caucasian individuals in heterosexual relationships, so these findings may not be applicable to other groups.
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.
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]
To evaluate randomized, controlled caregiver-focused intervention studies intended to improve quality of life (QOL) in caregivers of adult patients with cancer
Multiple phases of care
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.
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.
The small sample was limited to RCTs of which there are few in the literature (not a fault of this study’s methodology).
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.
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.
STUDY PURPOSE: To evaluate caregiver outcomes related to telehealth interventions in palliative care
TYPE OF STUDY: Systematic review
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.
Telehealth interventions might improve the caregiving experience. Additional research in this area is needed.
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.
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.
To test the effectiveness of two telephone-delivered psychosocial interventions for maintaining and improving quality of life
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.
Repeated-measures experimental design
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.
Both interventions in this study were effective in improving multiple dimensions of quality of life for men with prostate cancer and their partners.
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.
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.
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
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.
Randomized clinical trial
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.
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.
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.
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.
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
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.
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.
Findings showed that the program implemented was associated with improved quality of life and reduced caregiver burden.
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.
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.
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
Patients and partners were randomly assigned to one of four groups in dyads.
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).
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.
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.
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.
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.
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.
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:
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.
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.
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.
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.
Carter, P.A. (2006). A brief behavioral sleep intervention for family caregivers of persons with cancer. Cancer Nursing, 29, 95–103.
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
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.
End-of-life care
A repeated measures experimental design was used.
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).
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.
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.
To test the feasibility of delivering problem-solving therapy via videophones
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.
Quasiexperimental
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.
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.
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.
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.
To compare the effectiveness of problem-solving therapy delivered via videophone versus face-to-face sessions
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.
Noninferiority, randomized, two-group trial
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.
Delivery of problem-solving therapy, a cognitive behavioral therapy approach, by videophone was not inferior to delivery by face-to-face sessions.
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.
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.
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
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.
Pre- and postintervention study with no control group
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.
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).
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.
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
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
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.
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.
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.
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.
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.
To evaluate the effects of a specialized breathlessness intervention service compared to usual care
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.
Randomized, controlled trial
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.
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.
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.
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.
Pain-related instruction was given by a nurse with 10 years’ experience in oncology and 2 years’ experience in cancer pain management.
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.
The study design was quasi-experimental with major limitations.
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.
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.
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.
A short-term, closed, multiprofessional group aimed to promote self-care by combining informal teaching with group support.
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.
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.
The intervention was not found to affect outcomes for any measures at post-intervention (eight weeks) or follow-up (five months).
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.
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
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.
Active antitumor treatment phase
A two-site, controlled, parallel-group study with random assignment (balanced randomization [1:1]) was used.
Psychosocial distress:
Benefit finding:
Relationship satisfaction:
Communication:
Dyadic coping:
Sample description and differences:
The following changes were observed in the outcome variables:
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.
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.
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.
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
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.
Randomized, unblided, controlled trial consistent with the Consolidated Standards of Reporting Trials
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.
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.
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.
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.
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
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).
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%).
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.
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):
Findings of time 1 to time 3 (n = 45):
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.
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.
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.
To examine the effectiveness of an inpatient group psychoeducational intervention for caregivers of patients receiving inpatient palliative care
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.
Pre-/postdesign
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).
Educational interventions improved CGs' sense of preparedness and decreased their sense of unmet needs. They may help improve CGs’ competence.
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.
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
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.
A quasi-experimental, time-series design was used.
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.
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.
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.
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]
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
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.
A randomized, controlled, two-arm trial design was used.
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.
The primary outcome of the study, decrease in psychological distress, was not met.
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.
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.
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
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).
Randomized, controlled trial with two arms (two versions of intervention)
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.
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.
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.
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.
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
Home setting
A controlled trial design was used, with a major limitation.
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.
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.
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.
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
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
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.
Phase of care: active antitumor treatment
A mixed method (one-arm, qualitative, pre-post intervention design) was used.
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.
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.
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.
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.
Intervention goals were to
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.
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.
Home setting
A properly randomized, controlled trial design was used (with small sample size). Power analysis was not reported.
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.
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.
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
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.
Randomized, controlled trial
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.
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.
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.
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.
To determine if a modified cognitive behavioral stress management program would have a beneficial effect for caregivers on stress reduction
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.
Randomized, controlled trial
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).
The psychoeducational intervention tested here demonstrated benefit in the reduction of caregiver psychological distress, depression, and anxiety.
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.
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.
To test the effects of an integrative, supportive intervention program for caregivers on caregiver strain and burden
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.
Randomized, controlled, cohort, longitudinal trial
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.
The proactive assessment of caregiver stressors and individualized supportive and psychoeducational interventions reduced caregiver strain and burden and increased caregiver self-efficacy.
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.
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.
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
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.
Pilot-randomized, controlled trial with a two-group pretest and repeated post-test
The CCP had a positive effect on family caregivers providing care to patients with advanced cancer.
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.
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.
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
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.
A pre/post-test pilot study design was used.
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.
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.
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.
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.
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
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.
Nonrandomized, pre- and postintervention study
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).
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.
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.
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.
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
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.
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.
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.
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.
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.
To evaluate the effects of a psychoeducational program (COPE) on caregivers of patients with cancer
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.
PHASE OF CARE: Multiple phases of care
Nonrandomized, prospective, parallel group
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.
The intervention studied here did not demonstrate an effect on caregiver burden or quality of life.
The specific psychoeducational program examined here did not demonstrate an effect on caregivers. Several limitations existed.
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.
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 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.
A three-group randomized controlled trial design was used.
Results of random effect regression models showed significant interactions (time by group) in the intervention group for three of the caregivers’ measured outcomes.
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.
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.
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.
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.
To determine the feasibility and impact of providing a family-oriented intervention incorporating Hawaiian values on native Hawaiian women with cancer
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.
Hawaii
A randomized prospective trial design was used.
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).
Provision of a culturally relevant support intervention appeared to have a positive effect on Hawaiian patients and family members coping with cancer.
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.
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.
To test a telephone-based symptom management (TSM) intervention based on social cognitive theory with patients with lung cancer and their caregivers
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.
Primary outcomes for the caregivers were:
Secondary outcomes:
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.
The intervention did not demonstrate a significant effect.
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.
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.
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
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.
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).
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.
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.
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.
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
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.
Active antitumor treatment phase
A prospective, longitudinal, randomized clinical trial design was used.
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).
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.
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.
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.
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
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.
A longitudinal, repeated measures randomized controlled trial design was used.
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.
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.
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.
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
To test the effects and feasibility of a tailored web-based, nurse-delivered psychoeducational intervention on patient and caregiver outcomes
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.
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.
Findings show that this type of web-based program is feasible and may benefit patients and caregivers.
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.
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.
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
Caregivers of patients with cancer from 18 healthcare agencies in a large northeastern city (results from one site of a larger multisite study)
A nonrandomized, well-designed trial design was used, with pretest, post-test, baseline, and four-month postintervention scores completed.
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.
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
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.
Active antitumor treatment phase
A randomized controlled trial design was used.
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.
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.
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.
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.
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.
To evaluate the effectiveness of a nurse-led telephonic psychoeducational intervention on caregiver strain and burden
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.
Single, blinded, randomized, controlled trial
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.
The findings of this study demonstrated the effectiveness of this nurse-led telephonic psychoeducational intervention to reduce caregiver burden.
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.
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.
To examine the effects of a collaborative care intervention for reducing depression, pain, and fatigue in patients and stress and depression in caregivers
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.
PHASE OF CARE: Late effects and survivorship
Randomized, controlled trial
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.
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.
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.
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.
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
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.
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)
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.
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.
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.