Recommended for Practice

Supportive Care/Support Interventions

for Caregiver Strain and Burden

Supportive care involves the provision of emotional support informally or through structured interventions. Support interventions include activities such as general counseling related to emotional and other issues, active listening, and presence. Supportive interventions may be provided by healthcare professionals or may be structured as peer group support. Interventions can be one-on-one individualized sessions, support group sessions, or specific interventions with caregivers, families, etc. Support interventions may be provided via telephone, physical presence, or online groups that may be either referereed by a professional or unrefereed. Expressive writing for emotional disclosure can be seen as a specific type of supportive intervention; however, it is not grouped in the intervention of supportive care. Expressive writing, as a very specific approach, is evaluated in ONS PEP resources as its own type of intervention. Supportive care/support interventions have been evaluated in patients with cancer for anxiety, caregiver strain and burden, chemotherapy-induced nausea and vomiting, and depression

Systematic Review/Meta-Analysis

Candy, B., Jones, L., Drake, R., Leurent, B., & King, M. (2011). Interventions for supporting informal caregivers of patients in the terminal phase of a disease. Cochrane Database of Systematic Reviews, 6, CD007617. 

Purpose

STUDY PURPOSE: To assess the effects of support interventions on the psychological and physical health of informal caregivers of patients in the terminal stage of disease

TYPE OF STUDY: Meta-analysis and systematic review

Search Strategy

DATABASES USED: CENTRAL, MEDLINE, EMBASE, CINAHL, PsycINFO, National Health Service Research Register, Dissertation Abstracts; a hand search of Palliative Medicine, Journal of Pain and Symptom Management, and British Journal of Psychiatry was also conducted.
 
INCLUSION CRITERIA: Evaluation of interventions that aimed to provide caregiver support in addition to usual care, including domestic or respite services, and increase coping and problem solving; psychoeducational interventions; randomized, controlled trials; adult caregivers; care recipients in advanced, terminal, or end-of-life stages
 
EXCLUSION CRITERIA: None specified

Literature Evaluated

TOTAL REFERENCES RETRIEVED: 8,269
 
EVALUATION METHOD AND COMMENTS ON LITERATURE USED: Cochrane Consumers and Communication Review Group guidelines used to assess risk of bias. Studies were generally of low quality with uncertain risk of bias in many aspects.

Sample Characteristics

  • FINAL NUMBER STUDIES INCLUDED = 11, 8 in meta-analysis
  • TOTAL PATIENTS INCLUDED IN REVIEW = 1,836
  • SAMPLE RANGE ACROSS STUDIES: 30–363
  • KEY SAMPLE CHARACTERISTICS: In eight trials, care recipients had terminal stage cancers; varied ethnic groups

Phase of Care and Clinical Applications

PHASE OF CARE: End-of-life care

APPLICATIONS: Palliative care

Results

Nine studies used interventions aimed to directly support the caregiver, and in five of these, the intervention was also aimed at the patient. In two trials, the aim was to indirectly support the caregiver via patient support. A meta-analysis of eight studies aimed at direct caregiver support to reduce psychological distress, in favor of the intervention (SMD = –0.15, 95% confidence interval [–0.28, –0.02], p = 0.02). Studies measuring improvement in coping or quality of life did not show any significant effect of the intervention. Two trials showed improved access to health services with the intervention, and one did not show any difference between groups in physical health outcomes of the caregivers.

Conclusions

Support interventions aimed directly at the caregiver reduced short-term psychological distress, with a small effect size, and resulted in marginal and insignificant improvements in coping and quality of life.

Limitations

  • Mostly low quality/high risk of bias studies
  • High heterogeneity

Nursing Implications

Supportive interventions provided directly to informal caregivers had small but significant positive effects on caregiver psychological outcomes.

Print

Glasdam, S., Timm, H., & Vittrup, R. (2010). Support efforts for caregivers of chronically ill persons. Clinical Nursing Research, 19, 233–265.

Purpose

To conduct a thorough systematic review of interventions aimed at families with chronically ill members and to describe and critically evaluate these interventions for caregivers of chronically ill persons

Search Strategy

  • PubMed MEDLINE, CINAHL, Cochrane Library, EMBASE, and PsycINFO (English only) databases were used. After the initial search, one additional search occurred in Web of Science, SocINDEX, Sociological Abstracts, and ERIC (no citations from the additional search were included).
  • Key words were chosen based on predefined terms of each database, with main focus on the following words: intervention, caregivers, and diagnoses of diabetes, cardiovascular disease, cancer, or stroke.
  • Studies included in the search addressed the selected diagnoses (stroke, cardiovascular disease, cancer, or diabetes) and were reviews and controlled studies published in English between 1997 and 2007.
  • Studies that used patients younger than 18 years of age and dying adults were excluded.

Literature Evaluated

  • Forty-six studies were initially reviewed. Included in the report were 32 controlled studies (29 with randomization) described in 35 articles (stroke = 19, cancer = 10, cardiovascular disease = 3, and diabetes = 0). Study quality was addressed via author collaboration.
  • Of the 32 studies, 12 were from the United States, and an additional 10 were completed in Western Europe. All patient with cancer/caregiver studies supported an international perspective.

Sample Characteristics

  • The final sample of 32 studies included 4,264 patients.
  • Across studies, samples ranged from 30 to 1,040 caregiver/patient dyads.
  • Very few studies addressed dropout rates and reasons for that occurrence.
  • Participants were diagnosed mostly with stroke, then cancer, and least of all cardiovascular disease; no other information appears in the study information about samples.

Results

Experimental interventions provided support to caregivers, patients, or both. Of the 32 studies, 4 interventions addressed caregivers alone and 32 interventions addressed both patients and caregivers. All experimental interventions included health professional–led discussion and guidance to increase knowledge, comfort, or resource allocation for persons addressed in the study. Educational delivery occurred at individual, couple, and group levels, and sessions occurred in a variety of inpatient and outpatient areas, including the patient’s/caregiver’s home. Half of the interventions involved home visits by a professional who taught, counseled, or helped a participant with practical home roles.

All studies involving patients with cancer or caregivers used hospital-based interventions and centered on alleviating physical and psychosocial concerns of patients with cancer. Although the focus of interventions was the same for patients experiencing stroke and cardiovascular disease, most interventions occurred in the home with a focus on caregiver well-being.

Educational interventions incorporated cognitive-behavioral therapy to support knowledge transfer that would improve participant well-being. Some studies compared different forms of an intervention (e.g., individual versus group), and some interventions included sites and telephone contacts. No studies considered or changed an intervention based on the participant’s social background. Professional actors of studies were mostly nurses and healthcare providers prepared at the bachelor's degree. The authors noted across disease groupings that interventions fit into the following areas: caregiver experience with burden, level of knowledge, skills mastery, and satisfaction.

Of 32 studies, 22 reported effects in one or more areas that the intervention targeted. Studies that showed a positive intervention effect mostly focused on caregiver burden and mastery of skills to provide care. However, the authors noted that it is not possible to support any consistency between interventions because many different instruments used in the 32 studies measured the same variable (e.g., 26 measures for depression).

Conclusions

The authors noted that the systematic review guides the following conclusions:

  • There is a lack of knowledge supported by evidence about the effect of interventions on caregivers examined in this study; this inadequate level of evidence shows a need to challenge the quality of the studies.
  • The effect of interventions targeting caregivers of chronically ill patients is inconclusive and recommendations on the type of intervention that would be most appropriate cannot be made. Few studies exist that document the effect of interventions on caregivers of chronically ill patients because most times the ill patient is the focus of the healthcare team. The few documented studies often lack sufficient rigor to support changed clinical practice for caregivers and the patients they serve.
  • Interventions with a different, broader focus than short-term education or group dynamic process in a secondary healthcare setting should be considered.
  • Further work should build on connections between randomized control studies with reliable and valid instruments and strong definition of an intervention that  may show significant intervention effects. This evidence will provide credible data for how to change and improve clinical practice.
  • Additional qualitative work may inform understanding of ways health providers can create knowledge of caregivers through building on content and process of care already known to caregivers. This collaboration will allow tailoring of psychosocial and learning interventions for caregivers with unique histories and needs to support their health and ability to continue their caregiving role.
Print

Kaltenbaugh, D.J., Klem, M.L., Hu, L., Turi, E., Haines, A.J., & Hagerty Lingler, J. (2015). Using web-based interventions to support caregivers of patients with cancer: A systematic review. Oncology Nursing Forum, 42, 156–164. 

Purpose

STUDY PURPOSE: To survey literature focused on social, psychological, financial, technology, and nursing topics for evidence supporting web-based informational and supportive interventions to improve the health of the caregivers of patients with cancer

TYPE OF STUDY: Systematic review

Search Strategy

DATABASES USED: Inspec (Engineering Village), Ovid PsycINFO, PubMed, EBSCO, and CINAHL
 
KEYWORDS: Veb-based, caregivers, and cancer (primary topics)
 
INCLUSION CRITERIA: Published in English before February 1, 2014; focused on the caregivers of adult patients with cancer aged at leat 18 years; addressed web-based quantitative or mixed-methods assessment of interventions of informational or supportive nature
 
EXCLUSION CRITERIA: Primary qualitative studies, dissertations, conference proceedings, case studies, pediatric studies, and interventions delivered by telephone or telemedicine

Literature Evaluated

TOTAL REFERENCES RETRIEVED: 795
 
EVALUATION METHOD AND COMMENTS ON LITERATURE USED: Two reviewers independently assessed article eligibility for the study (included intervention outcomes, sample, and participant description). Each reviewer then assessed each article’s quality using the McMaster Quality Assessment Tool for Quantitative Studies. Resolution of reviewer disagreements about assessment processes were reached via consensus.

Sample Characteristics

  • FINAL NUMBER STUDIES INCLUDED = 6 
  • SAMPLE RANGE ACROSS STUDIES: 13–285 patients
  • KEY SAMPLE CHARACTERISTICS: Greater than half were females caring for a family member with cancer; half of caregivers focused on family member with lung cancer; included studies that addressed diverse types of patient cancers (early stage to stage 4); the majority of caregivers attended some college and believed they possessed intermediate computer and Internet experience; unknown caregiver ethnicity in four of six studies 

Phase of Care and Clinical Applications

PHASE OF CARE: Early-stage (breast cancer) to stage 4 (lung cancer)

Results

Three of the five articles used in the systematic review showed that web-based interventions decreased caregiver negative mood. One of the three studies showed that a multifaceted CHESS intervention had a moderate effect size (d = 0.387) to decrease caregiver burden and negative mood (d = 0.436) at six months. Another study using CHESS with a clinical report showed small to moderate effect reducing caregiver negative mood at six months and at one year (d = -0.592). A third study describing an informational intervention showed a large effect size (d = 0.88) on this variable. Two multifaceted interventions and one single-faceted intervention supported lower levels of caregiver stress and perceptions of broad social support. Only two of six studies presented usability score outcomes, and only one study addressed the feasibility of the web-based intervention.

Conclusions

Although only six of 581 initial literacy citations met the systematic review study criteria, those six indicated the successful use of web-based cancer caregiver interventions to meet social and psychological needs. The effect sizes of the six studies compared favorably to traditional interventions focused on caregiver burden, self-efficacy, and quality of life. The limited numbers of articles on web-based interventions that positively affected diverse groups of caregivers’ social, financial, and psychological outcomes support future exploration of the usefulness and feasibility of such interventions for cancer caregiver health.

Limitations

Studies showing significant effects of web-based cancer caregiver interventions may appear more often in the literature to affect article capturing for this systematic review. The lack of identification of caregiver ethnicity in 80% of the cited studies leaves a gap in understanding how non-Caucasian samples or male caregivers may respond to web-based interventions. Published studies after February 1, 2014 were absent from the review. Only six studies met the criteria for the review.

Nursing Implications

Increasing the use and success of technology to deliver health-related consumer interventions currently support initial evidence for web-based programs, aligned with traditional cancer care, to improve quality of life of patients with cancer and their caregivers. Additional research identify the dosing of Internet interventions and evidence of the efficacy of various forms of interventions is needed.

Print

Slev, V.N., Mistiaen, P., Pasman, H.R., Verdonck-de Leeuw, I.M., Uden-Kraan, C.F., & Francke, A.L. (2016). Effects of eHealth for patients and informal caregivers confronted with cancer: A meta-review. International Journal of Medical Informatics, 87, 54–67. 

Purpose

PURPOSE: To synthesize evidence regarding effects of eHealth in patients with cancer and informal caregivers from systematic reviews

TYPE OF STUDY: Systematic review

Search Strategy

DATABASES USED: PubMed, EMBASE, CINAHL, PsycINFO, and the Cochrane Collaboration
 
KEYWORDS: Multiple terms for eHealth, cancer, systematic review, and meta analysis
 
INCLUSION CRITERIA: Systematic reviews reporting the effects of eHealth were included. EHealth was defined as the provision of information and/or support for patients or caregivers. Only minor or minimal flaws existed in the review.
 
EXCLUSION CRITERIA: Studies including patients without cancer were only included if the results for cancer were reported separately.

Literature Evaluated

TOTAL REFERENCES RETRIEVED: 8,157
 
EVALUATION METHOD AND COMMENTS ON LITERATURE USED: Quality assessment checklist for reviews; studies were only included if scores were at least of moderate quality

Sample Characteristics

  • FINAL NUMBER STUDIES INCLUDED = 10
  • TOTAL PATIENTS INCLUDED IN REVIEW = Not reported
  • SAMPLE RANGE ACROSS STUDIES: Not reported
  • KEY SAMPLE CHARACTERISTICS: Varied tumor types; mostly breast, prostate, and head and neck cancers

Results

Evidence was found for positive effects of eHealth on knowledge and perceived support. The findings regarding effects on decision-making were inconsistent. Interventions had some positive effects on patient involvement in healthcare. The findings regarding the effects of Internet support groups on anxiety and depression were mixed. Most interventions were Internet-based and had multiple components of education, support, chat groups, and communications with providers. One study used smart phone applications.

Conclusions

EHealth applications have been shown to have a positive effect on knowledge. Its effects on other aspects of the patient experience are inconsistent.

Limitations

All but one study were of moderate quality. Studies of low quality were excluded. Types of programs and components varied greatly, making the synthesis of effects for discrete interventions difficult.

Nursing Implications

eHealth applications may be a useful and practical way to provide patient and caregiver education. Its effectiveness as an intervention for psychological well-being and other outcomes was not clear given the mixed evidence. Ongoing research is needed to determine the full range of potential effects, program components that are most helpful, and needed duration of use for positive effects.

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Research Evidence Summaries

Chih, M.Y., DuBenske, L.L., Hawkins, R.P., Brown, R.L., Dinauer, S.K., Cleary, J.F., & Gustafson, D.H. (2013). Communicating advanced cancer patients' symptoms via the Internet: A pooled analysis of two randomized trials examining caregiver preparedness, physical burden, and negative mood. Palliative Medicine, 27, 533–543. 

Study Purpose

To examine the effects of an online symptom reporting system on caregiver negative mood, preparedness, and perceptions of physical burden

Intervention Characteristics/Basic Study Process

Following recruitment, patients were randomized to either the  Comprehensive Health Enhancement Support System (CHESS) only intervention or CHESS plus clinician report (CR). The CHESS only group of patient-caregiver dyads accessed the CHESS website for coaching, information, and communication resources for advanced-stage cancer care. At baseline and weekly, dyads “checked in” to CHESS to report needs and symptoms informed by the Edmonton Symptom Assessment System (ESAS) and Eastern Cooperative Oncology Group Performance Status. “Checking in” allowed symptom tracking to evaluate patient improvement or decline. Caregivers also reported preparedness and caregiving burden and could pose questions for future clinical visits. The CHESS plus CR group would access the CHESS website as well as have access to the ePRO system (CR) that delivered dyadic tracking information and alerts to clinicians when the patient or caregiver met certain criteria of concern. The ePRO system would support clinicians’ timely response to improve caregiver management of patient symptoms and lessen burden. Intervention technical support was provided to both groups. CHESS intervention access varied from 12–24 months based on patient diagnosis, and caregivers sequentially were assessed following the intervention.

Sample Characteristics

  • N = 235 caregiver-patient dyads
  • MEAN AGE = 56 years for caregivers
  • MALES: 35.8%, FEMALES: 64.2%
  • KEY DISEASE CHARACTERISTICS: Recruited patients with advanced-stage prostate, breast, or lung cancer who received usual care, including palliative or curative treatment
  • OTHER KEY SAMPLE CHARACTERISTICS: The majority of caregivers were white, spousal caregivers, educated beyond high school, and had moderate comfort with Internet use

Setting

  • SITE: Multi-site  
  • SETTING TYPE: Home  
  • LOCATION: Northeast, Midwest, and Southwest U.S. cancer centers

Phase of Care and Clinical Applications

  • PHASE OF CARE: Late effects/survivorship
  • APPLICATIONS: Palliative care

Study Design

  • Pooling of two randomized trials of unblinded patient-caregiver dyads
    • Data analyzed by general linear mixed modeling

Measurement Instruments/Methods

  • ESAS—modified for study; measured dyadic symptom distress; no reliability or validity reported but used in previous studies
  • Preparedness Scale (subscale of Family Care Inventory)—used to examine caregiver task preparedness; had sustained high internal consistency (Cronbach’s alpha = 0.79–0.85)
  • Physical Burden Scale (subscale of Caregiver Burden Inventory)—used to examine effect of caregiving on caregiver health; high sustained internal consistency (alpha = 0.78–0.85)
  • Shortened Version of the Profile of Mood States (SV-POMS)—used to measure caregiver negative mood and depression; sustained high internal consistency (alpha = 0.92–0.96)

Results

Caregivers in the CHESS plus CR group reported more positive moods than those in the CHESS alone group at 6 months (p = 0.009) and 12 months (p = 0.004). However, the two groups did not differ significantly on caregiver preparedness or physical burden at 6- and 12-month assessment.

Conclusions

Online delivery of information, communication, and coaching resources, combined with a format that supports patient and caregiver reporting of symptoms to facilitate clinician-caregiver timely communication, has the potential to improve caregiver mood and minimize distress of patients with advanced-stage cancer.

Limitations

  • Key sample group differences that could influence results—authors report that results may underestimate the potential impact of CHESS plus CR for those who benefit the most
  • Findings not generalizable—authors report that the majority of patients in the sample are well-educated Caucasians. This may limit the ability to generalize the results to other ethnic populations. As a result of CR being integrated in CHESS, the study could not assess how CR alone would influence caregiver outcomes.
  • Subject withdrawals 10% or greater
  • Other limitations/explanation: Lack of blinding for caregivers, patients, and clinicians

Nursing Implications

Advances in technology offer opportunities for oncology clinicians to partner with patients and their caregivers to promote patient and caregiver health during the cancer trajectory. Issues such as clinician heavy workload and continued clinical focus on patient needs challenge oncology clinicians in redefining workplace approaches to improve outcomes for patients and their caregivers.

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

Study Purpose

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

Intervention Characteristics/Basic Study Process

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

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

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

Sample Characteristics

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

Setting

  • Home palliative care services in London, United Kingdom

Study Design

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

Measurement Instruments/Methods

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

Results

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

Limitations

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

McCorkle, R., Siefert, M.L., Dowd, M.F., Robinson, J.P., & Pickett, M. (2007). Effects of advanced practice nursing on patient and spouse depressive symptoms, sexual function, and marital interaction after radical prostatectomy. Urologic Nursing, 27, 65–77; discussion 78–80.

Study Purpose

To determine the effect of a standardized nursing intervention on protocol (SNIP) on newly diagnosed men and their female spouses on marital interaction, sexual function, and depressive symptoms following radical prostatectomy over a six-month period

Intervention Characteristics/Basic Study Process

Couples were randomly assigned to an intervention (SNIP) or a usual care group. The usual care group received care according to standards identified by the urology clinic group, and the SNIP group dyads received 16 contacts (twice per week: home visit and telephone call) from an advanced practice nurse (APN) specially trained for the study to deliver an evidence-based protocol. Dyad conversations with APNs evolved from reading of a common public education booklet given to couples during the SNIP intervention. Measurement of outcome variables (depression, marital interaction, and sexual function) occurred in both the usual and intervention groups at baseline and one, three, and six months following radical prostatectomy.

Sample Characteristics

  • The sample was comprised of 107 patient–spouse pairs (54 in the SNIP group; 53 in the usual care group).
  • Of the sample spouses, 82.3% were age 45–64 years; of the patients, 77.6% were age 45–64 years.
  • Spouses were female (100%).
  • Patients all had a radical prostatectomy due to cancer; spouses had one to three comorbidities, although further specifics about the type of morbidities do not appear in the article.
  • Spouses were predominantly white (85.1%), married to the patient (93.5%), had some college education (63.6%), and were employed (57%).
  • Patient and spousal income placed couples in middle to upper socioeconomic class (annual income greater than $50,000).
  • Couples lived within 50 miles of the study centers.

Setting

  • Two academic medical centers
  • Northeastern United States

Study Design

The study design was secondary data analysis of a prospective, randomized clinical trial with repeated measures.

Measurement Instruments/Methods

  • Center for Epidemiological Studies–Depression Scale (CES-D)
  • Center Rehabilitation Evaluation System (CARES): 26 items are representative of two of five subscales that assessed sexual interest/dysfunction and marital interaction. Reliability of the two subscales ranged from 0.66 to 0.85 across measurements collected at one, three, and six months of the study.

Results

Analysis of variance procedures indicated that among patients, outcome measures showed no indication of main effects due to group assignment. However, spouses had significant differences for some of the measures at six months, with the SNIP group spouses having higher depression scores that approached significance. The SNIP spouses also had a higher average sexual function distress score and a significantly higher marital interaction distress score than did the control group spouses. Spouses reported significantly higher levels of depressive symptoms and more marital interaction distress as compared to patients. However, patients reported significantly more sexual function distress than did their spouses. The SNIP intervention had no group effect on depressive symptoms, but such symptoms improved over time in both patients and spouses. The SNIP intervention showed a modest effect on patients’ sexual function and marital interaction over time, with SNIP patients and spouses reporting increased distress. However, control group women reported significantly lower rates of sexual functioning distress over time compared to the SNIP group. Pearson correlations showed patient depressive symptoms related to patient marital interaction, spousal depressive symptoms, and spousal marital interactions.

Conclusions

An intervention such as SNIP can effectively address depressive symptoms of newly diagnosed patients with prostatectomy and their spouses, as well as relevant issues such as patient sexual function and marital interaction that change with radical prostatectomy. A trained nurse, delivering an evidence-based intervention focused on the needs of these dyads, can assist them in understanding expected postsurgical changes and implementing actions to foster hope and recovery within the dyad.

Limitations

  • The study had a limited non-white sample.
  • The study had a small sample size to exert sufficient power to identity significant changes between the SNIP group and the usual care group.

Nursing Implications

Nurses should routinely assess depressive symptoms of patients and their primary support system to define needed interventions during cancer treatment. Patient and spouse (caregiver) teaching about common side effects of cancer treatment, ways of responding to those side effects, and the potential for recovery of earlier functions should be included at each patient encounter. Support groups for both patients and caregivers may further bolster networking with others who have “moved beyond” the early consequences of prostate surgery and offer hope to recent surgical patients and their spouses. An evidence-based intervention delivered by APNs, such as the one used in this study, offers structure and process of care to promote quality care of those individuals.

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Shaw, J.M., Young, J.M., Butow, P.N., Badgery-Parker, T., Durcinoska, I., Harrison, J.D., . . . Solomon, M.J. (2015). Improving psychosocial outcomes for caregivers of people with poor prognosis gastrointestinal cancers: A randomized controlled trial (Family Connect). Supportive Care in Cancer, 24, 585–595. 

Study Purpose

To assess the effectiveness of an intervention using structured telephone interventions for the caregivers of patients diagnosed with gastrointestinal cancer that had a poor prognosis to improve psychosocial outcomes of the patient and caregiver

Intervention Characteristics/Basic Study Process

This intervention was a randomized, controlled trial in which caregivers were assigned to either the family connect (FC) telephone intervention or usual care. The FC group received four standardized telephone calls in the 10 weeks after patient hospital discharge. The caregivers’ quality of life, caregiver burden, unmet supportive needs, and distress were assessed at three and six months.

Sample Characteristics

  • N = 128 pairs  
  • AVERAGE AGE = 55.7 years (intervention); 52.7 years (control)
  • MALES: 61%, FEMALES: 39%
  • KEY DISEASE CHARACTERISTICS: Patients with all cancers found within area of the gastrointestinal system and their caregivers were included.
  • OTHER KEY SAMPLE CHARACTERISTICS: Most were English-speaking, and all received some prior form of cancer treatment.

Setting

  • SITE: Four metropolitan hospitals in Sydney, Australia
  • SETTING TYPE: Initial, hospital, follow up, telephone
  • LOCATION: Sydney, Australia

Phase of Care and Clinical Applications

  • PHASE OF CARE: Newly diagnosed or recurrent primary upper gastrointestinal cancer, metastatic liver disease, or stage 4 colorectal cancer
  • APPLICATIONS: Palliative care 

Study Design

This study was a parallel-randomized trial with a 1:1 group allocation.

Measurement Instruments/Methods

  • Quality of Life (QOL) scale Short Form 12 (SF-12) v2
  • Caregiver Reaction Assessment (CRA)
  • Functional Assessment of Cancer Therapy–General (FACT-G)
  • Supportive Care Needs Survey (SCNS-34) patient version
  • Single-item distress thermometer

Results

Caregiver QOL scores were similar in both groups. The group that was randomized to receive the intervention reported a greater sense of social support and reduced worry about finances, and they also had fewer rehospitalization and emergency department visits.

Conclusions

This intervention did not demonstrate significant improvements in quality of life or sense of well-being for the caregivers. There were some trends observed through data analysis, which warranted the continued development of meaningful, telephone-based, caregiver-focused supportive care interventions.

Limitations

  • Risk of bias (no blinding)
  • Intervention expensive, impractical, or training needs
  • Subject withdrawals ≥ 10%
  • Other limitations/explanation: The high level of withdrawals prior to randomization (20% of caregivers and 32% of patients) may have resulted from need for both patients and caregivers to agree to participate in the study.

Nursing Implications

This study did demonstrate the potential to improve patient and caregiver QOL. Future nursing research should focus on continuing to educate caregivers with strategies to identify and address patient care needs, which can ultimately reduce the overall cost to healthcare systems.

Print

Toseland, R.W., Blanchard, C.G., & McCallion, P. (1995). A problem solving intervention for caregivers of cancer patients. Social Science and Medicine, 40, 517–528.

Intervention Characteristics/Basic Study Process

An experienced oncology social worker with a master’s degree in social work led six individual, one-hour counseling sessions. All participants attended at least four sessions. The sessions included three components: support, problem solving, and coping skills.

Sample Characteristics

  • The sample (N = 78) was comprised of caregivers of patients who had received a cancer diagnosis at least three months prior.
  • Patients scored a 1–3 on the Eastern Cooperative Oncology Group Global Performance Scale.

Setting

Regional medical oncology center

Study Design

The study was a properly designed randomized controlled trial: intervention (n = 38) versus standard available care (n = 40).

Measurement Instruments/Methods

  • Zarit Burden Inventory
  • Caregiving Mastery and Caregiving Satisfaction subscales of the Lawton Caregiving Appraisal Composite Scale
  • Montgomery and Borgatta Burden Scale
  • Center for Epidemiologic Studies–Depression Scale
  • State-Trait Anxiety Inventory
  • Dyadic Adjustment Scale (used to measure marital satisfaction)
  • Social Functioning Subscale of the Health and Daily Living Form (adapted; used to measure social support)
  • Medical Outcomes Study Short Form–20
  • Help Seeking Coping Index
  • Index of Coping Responses

Results

For caregivers who reported high levels of burden, the intervention led to a significant improvement in their ability to cope with pressing problems. No main effects of the intervention were found on any outcome variable. For caregivers who reported low marital satisfaction, the intervention led to improvement in physical, role, and social functioning.

Limitations

  • The study had a small sample, with only 27% of those eligible agreeing to participate.
  • The sample was primarily Caucasian.
  • Contamination of the control group was reported.
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