Multicomponent interventions for caregivers include a combination of educational, supportive, psychotherapuetic, and respite care.
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.
Harding, R., & Higginson, I.J. (2003). What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliative Medicine, 17, 63–74.
MEDLINE, CancerLit, PsycInfo, and CINAHL databases using the search terms carer(s), caregiver(s), palliative, and cancer were used.
Twenty-two articles reported interventions for adults actively providing informal care to noninstitutionalized patients with cancer and patients receiving palliative care. Only six of the interventions had been evaluated: Two used a randomized, controlled trial design, three used single group design (two prospective, one retrospective), and one was evaluated by facilitator feedback.
The sample was comprised of caregivers from palliative or cancer care populations.
Problem-solving and education interventions led to overall improved caregiver burden, although the improvement was not significant; however, significant improvements were seen in a subsample of burdened caregivers (at baseline). Home nursing and respite care services improved caregiver satisfaction, quality of life, physical and emotional stress or distress, pain, health, and sleep in a few studies. Problem solving and education are likely to be effective in reducing caregiver burden.
Martire, L.M., Lustig, A.P., Schulz, R., Miller, G.E., & Helgeson, V.S. (2004). Is it beneficial to involve a family member? A meta-analysis of psychosocial interventions for chronic illness. Health Psychology, 23, 599–611.
MEDLINE, PsycInfo, CancerLit, CINAHL, American College of Physicians Journal Club, Cochrane Controlled Trials Register, Cochrane Database of Systematic Reviews, and Database of Abstracts of Reviews of Effectiveness were searched using key words in groups (a) patient, ill, illness or health, (b) family, caregiver, caregiving, marriage, marital, spouse, spousal, couple, or partner, and (c) treatment, intervention, or support. ERIC, Social Work Abstracts, Expanded Academic ASAP, Academic Search Elite, PubMed, ISI Web of Knowledge and Web of Science, Economic and Social Research Council, Inter-University Consortium for Political and Social Research, and Physician Data Query/National Cancer Institute, as well as tables of contents of all Elsevier Publications medical journals, were searched using the key words family, caregiving or caregiver, and intervention or treatment.
Overall, evidence suggested that interventions reduced depressive symptoms in family members when the intervention focused on illnesses other than dementia. Family interventions targeted to patients and family members (as a dyad) or to family members alone were effective in reducing caregiver burden. Interventions offered to spouses alone or to a combination of family members were effective in reducing caregiver burden. Interventions had a stronger effect in reducing burden, depression, and anxiety when relationship issues between patients and caregivers were addressed.
No evidence was found that psychosocial interventions relieved anxiety in family members (uniform across studies).
A family intervention demonstrated the strongest evidence for improving family burden and was uniform across studies for spouses and for mixed groups of family members.
Only five studies included cancer populations.
Mattila, E., Leino, K., Paavilainen, E., & AstedtKurki, P. (2009). Nursing intervention studies on patients and family members: A systematic literature review. Scandinavian Journal of Caring Sciences, 23, 611–622.
To identify the targets of intervention studies and obtain findings that will help in planning future intervention studies, support nursing, and promote the introduction of new family-centered nursing methods
The initial search yielded 323 articles. The final analysis included 31 articles that met inclusion criteria. Evidence was assessed using the Finnish Federation of Nurses’ criteria, which is described in the article. Content analysis of interventions was used. The RE-AIM model was used to examine study findings. This model includes dimensions of reach, efficacy, adaptation, implementation, and maintenance. Only six of the studies were identified as a high level of evidence using the stated criteria.
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.
Pasacreta, J.V., & McCorkle, R. (2000). Cancer care: Impact of interventions on caregiver outcomes. Annual Review of Nursing Research, 18, 127–148.
Manual search and MEDLINE, CINAHL, and PsycInfo database searches using the search terms caregiver, caregiving, family, cancer, outcomes, interventions, quality of life, coping, and psychological distress were used.
Twenty-nine articles that described interventions aimed at assisting caregivers of patients with cancer were reviewed. Quality of life, knowledge about pain, caregiver burden, depression, psychological adjustment or functioning, and anxiety were not clearly defined in many of the studies.
Psychosocial status and aspects of caregiver quality of life improved, although improvement in burden not was not described. The effectiveness of interventions to reduce caregiver burden or strain was not established.
Sörensen, S., Pinquart, M., & Duberstein, P. (2002). How effective are interventions with caregivers? An updated meta-analysis. Gerontologist, 42, 356–372.
MEDLINE, PsychINFO, and PSYNDEX electronic databases were used, as well as ancestry method using the search terms caregiver or carer or caregiving, intervention or support or training, and elderly or old age. Study statistics that could be converted to effect sizes also were used.
Seventy-eight studies of caregiver interventions in which an intervention condition was compared with a control group were evaluated.
Immediate pre- and post-tests on burden were significant. The effect of multicomponent interventions was significantly larger than those of psychoeducation, respite or day care, training of the care recipient, and miscellaneous interventions. The larger the proportion of adult children participating in the intervention, the greater the improvements in burden. Interventions with older caregivers and caregivers with older care recipients yielded larger improvements of burden. Psychotherapy and psychoeducational interventions also were effective in reducing burden. Interventions delivered to individuals were more effective than interventions offered in group sessions. In studies where caregivers provided support for more hours, less improvement in burden was found.
Groh, G., Vyhnalek, B., Feddersen, B., Führer, M., & Borasio, G.D. (2013). Effectiveness of a specialized outpatient palliative care service as experienced by patients and caregivers. Journal of Palliative Medicine, 16(8), 848–856.
To evaluate the effectiveness of an outpatient palliative care service
The specialized palliative care service included two physicians, two nurses, and a social worker specialized in palliative care providing home-based symptom management, 24-hour on-call services, psychological support, and coordination of care with local healthcare providers. Patients and caregivers completed study questionnaires at baseline and follow-up. Follow-up time frames ranged from a few days to seven weeks, with an average of 2.5 weeks. Questionnaires were completed in dialog with a trained psychologist
Patient and caregiver burden was significantly improved over the course of follow-up (p < .001). Caregivers and patients reported significant improvement in psychological support, support for activities of daily living, and communication between the patient and caregiver (p < .001). At baseline, 57% of caregivers showed clinically relevant anxiety scores (greater than 11), which decreased to 28% at follow-up (p < .001).
Palliative care services were associated with reduced caregiver perception of burden and reduced prevalence of clinically relevant anxiety among caregivers.
Findings suggest that palliative care services significantly can reduce caregiver sense of burden. This is in concert with previous findings that multicomponent interventions are effective in reducing caregiver strain and burden.
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).
Hutchison, S.D., Sargeant, H., Morris, B.A., Hawkes, A.L., Clutton, S., & Chambers, S.K. (2011). A community-based approach to cancer counselling for patients and carers: A preliminary study. Psycho-Oncology, 20, 897–901.
To provide guidance for cancer services by describing intervention strategies, characteristics, psychological concerns, and distress outcomes for patients and their carers that use a community-based cancer counseling service
Clients who accessed a statewide cancer telephone helpline received referral to a free community-based and evidence-based multicomponent cancer counseling service (CCS) that provided brief telephone-delivered psychosocial interventions for individuals struggling to cope with cancer. CCS clients were referred from a statewide cancer helpline that provides individual support and information about cancer. Over a three-year period, 86% of the 1,201 people who received CCS services met the inclusion criteria for the institutional review board–approved study. Qualified psychologists spoke to patients and carers on the phone. Outcomes measures included the Stress Distress Thermometer and a session satisfaction questionnaire. Collection of measures occurred via each telephone interaction between the psychologist and patient or carer upon client referral to CCS and at each counseling session.
Criteria for referral to the CCS included high levels of self-reported cancer-related distress and/or request for counseling. The CCS interventions are multicomponent and include psychoeducational, emotional support, coping skills, cognitive behavior therapy, and other psychological interventions such as mindfulness, acceptance and commitment therapy, communication skills, and partner support. Interventions are short-term, with clients generally receiving five sessions.
A repeated measures design was used.
There were significant differences (p < 0.001) between patients and carers who identified concerns before the telephone intervention. However, both groups identified adjusting to cancer as the most common presenting problem. Other predominant problems for patients were anxiety, depression, and family relationships. Predominant problems for carers were bereavement, anticipatory grief, and family/intimate relationships. There was no significant difference in the number of telephone sessions for patients and carers. Eighty-six percent completed therapy in five sessions. A t test indicated that the average length of sessions significantly differed for patients and carers (t [4193] = 2.43, p < 0.05). Carers had significantly (p < 0.001) more distress before the telephone intervention and postintervention than patients, although both groups showed a significant decrease in distress by the final intervention (p < 0.001). Almost 70% of patients and carers met “improvement” or “recovery” on the Distress Thermometer assessment postintervention. No significant distress differences were noted between patients and carers referred to further counseling postintervention than those who did not complete therapy. Mean satisfaction ratings for sessions were 9.35 based on a possible 10-point (“just right”) scale.
This study demonstrated the effectiveness of a CCS telephone-delivered intervention to patients with cancer and many of their carers for a wide range of identified problems over the cancer trajectory. The delivery format allows provision of educational and emotional support to both groups despite place of residence, ability to leave the home, and other factors affecting access to the intervention.
Nurses providing oncology care must carefully screen both patients and carers for concerns during the cancer treatment cycle. This screening may need to occur with each individual patient and carer alone to gain accurate information that is useful for individualized teaching and support. Nurse–patient/carer telephone dialogues between clinic or hospital visits may also be valuable in preventing and treating concerns before they become urgent issues needing attention. Healthcare team referral to social workers, spiritual leaders, and others specific to patient or carer concerns may also prove valuable to prevent or treat carer or patient depression or anxiety that affects the ability of the dyad to effectively cope with the cancer experience. Future research also is needed to investigate the effect of the intervention on low literacy and ethnically diverse people with cancer who value a face-to-face encounter as essential to their perception of health provider support during cancer care.
Lim, H.A., Griva, K., Yoong, R.K., Chua, J., Leow, M.Q., Chan, M.F., . . . Mahendran, R. (2015). Do caregivers of cancer patients receiving care in home hospice services have better quality of life? An exploratory investigation in Singapore. Psycho-Oncology, 25, 471–474.
To examine the differences between caregiver quality of life when caring for a patient in a home hospice program and an ambulatory patient receiving formal palliative care program services
Governmentally supported home hospice services provided to patients with advanced cancer by a multidisciplinary team
Cross-sectional study with combined data from two studies
Significant Pearson intercorrelations (rs = 0.18-0.84, ps < 0.05) for CQOLC total scores and subscales excluding positive adaptation and disruptiveness subscales were found. Males had significantly lower total CQOLC scores (p = 0.012) and disruptiveness scores (p = 0.003). Significantly lower CQOLC scores also resulted in caregivers caring for parents (and tertiary education [all values = p < 0.05]). Chinese ethnic caregivers had better QOL related to burden (p = 0.031) and financial concerns (p = 0.024), but less successful positive adaptation resulted in lower QOL (p = 0.024). Although data analysis controlled for significant differences in age and spousal caregiving, ambulatory patient caregivers were older and more likely to be spousal caregivers. Analysis of covariance (ANCOVA) supported home hospice caregivers experiencing better QOL than ambulatory patient caregivers but only in total CQOLC scores (p = 0.008) and subscales of financial worries and burden (p = 0.004).
Home hospice care programs for patients with palliative cancer care needs appear to benefit caregiver QOL, particularly in minimizing perceptions of burden and financial concerns. Those programs, composed of multidisciplinary teams focused on responding to patient end-of-life needs, seem to improve caregiver confidence in care and satisfy caregivers’ desire for personalized support by healthcare providers.
Models of home hospice services to mutually benefit caregivers and those they care for need further testing in a variety of cultures with variant healthcare systems to more clearly validate the efficiency of and benefits of those models in meeting caregiver improved QOL.
Titler, M.G., Visovatti, M.A., Shuman, C., Ellis, K.R., Banerjee, T., Dockham, B., . . . Northouse, L. (2017). Effectiveness of implementing a dyadic psychoeducational intervention for cancer patients and family caregivers. Supportive Care in Cancer, 25, 3395–3406.
To test FOCUS, which is an evidence-based psychoeducational intervention, in terms of its feasibility, cost, and program satisfaction and assess its impact on patients' and caregivers' emotional distress and QOL as primary outcomes and benefits of illness, self-efficacy, and dyadic communication as secondary outcomes in two community service centers.
FOCUS is a psychoeducational intervention that is delivered to dyads of patients and their caregivers and addresses the following components: family involvement, optimistic attitude, coping effectiveness, uncertainty reduction, and symptom management. The components cover 104 activities relevant to the components in five sessions. The FOCUS program was administered by a trained social worker in one site and a family therapist in the second site. FOCUS was administered in a group format (3 to 4 dyads) and involved five weekly face-to-face sessions; each was two hours. 11 five-session programs were given over 12 months. The program implementation was guided by the Translating Research into Practice model; a one-day training program was held for the site directors and facilitators and they were given training manuals that were developed based on their role. Pre-packaged material to implement the five-week sessions were provided, weekly calls between program facilitators took place, and monthly meetings occurred between investigators.
PHASE OF CARE: Multiple phases of care
Pre-/postintervention design. Outcomes were assessed prior to the first intervention session and after the last session at week 5 postintervention. Translating research into practice model was used to implement the intervention in the two sites.
Primary outcomes:
Secondary outcomes:
Feasibility, satisfaction with program, and cost were also assessed. Feasibility was assessed by enrollment, retention, and intervention fidelity rates. Satisfaction was assessed by the FOCUS satisfaction instrument. Cost was assessed by multiplying hourly time estimates and median hourly wages for healthcare social workers in California and Ohio based on the U.S. Bureau of Labor statistics.
In CSC, FOCUS intervention five-session, social-worker driven program is effective in improving caregivers’ (and patients’) outcomes. FOCUS appears to be feasible and acceptable with reasonable costs.
FOCUS is an effective psychoeducational intervention that can be administered by someone trained on the intervention and can be administered successfully in CSC.