Multicomponent interventions for caregivers include a combination of educational, supportive, psychotherapuetic, and respite care.
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Likely to Be Effective
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.doi: 10.1016/j.ijnurstu.2009.03.008
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
- PsycINFO, Cochrane Central Register of Controlled Trials, Embase Ovid, Embase, Ovid MEDLINE, CINAHL, DARE (Database of Abstracts of Reviews of Effectiveness), related systematic and other reviews, and reference lists from published articles were used for the search. Only English-language articles in the databases were reviewed.
- Key words were cancer, intervention, program(me), evaluation, research, physical/practical care, needs, skills, home care, palliative care, end of life care, terminal care, cancer care, symptom management/control, skills, family (including spouse, husband, wife, partner), carers, caregivers, lay carers, and family support.
- Inclusion criteria were studies with male or female adults (age 18 or older) who provided care to family member with cancer; literature using family, family member, or significant other; and the carer was expected to live in the home with the patient to provide care.
- Literature on caregiver bereavement interventions was excluded.
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 report included 19 interventional studies.
- The total sample was 3,286 caregivers, with a sample range across studies of 34–750 caregivers.
- The sample was comprised of older adult patients with cancer and patients with end-stage cancer and their partners (patient/caregiver dyads).
The authors found four categories of intervention that allowed family carers to provide physical/practical care of a family member with cancer (one study): (a) interventions that included skills training for the caregiver (nine studies), (b) interventions to improve care through managing symptoms (five studies), (c) interventions with a problem-solving focus, and (d) interventions with a learning focus (four studies).
- Some studies of interventions for managing symptoms indicated some benefits to patients and/or caregivers.
- Interventions using problem-solving processes showed promise of benefit.
- To what degree educational interventions addressed physical or practical care, and how this influenced outcomes, was not clear.
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.doi: 10.1191/0269216303pm667oa
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.
- Too few studies evaluated interventions for caregivers.
- Most studies were of descriptive or cross-sectional design.
- Outcome measures within studies varied widely.
- Only two studies measured caregiver burden or strain as an outcome.
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.doi: 10.1037/0278-6126.96.36.1999
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.
- Seventy randomized trials comparing interventions with usual care were used.
- The sample was a mixture of family caregivers of individuals with chronic illness (Alzheimer disease, dementia, stroke, cardiac disease, chronic pain, rheumatoid arthritis, brain injury, and cancer).
- The sample included two large studies of 2,042 (Alzheimer) and 4,408 (post-myocardial infarction) participants.
- Excluding those two large studies, the average sample size was 87 caregivers.
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.doi: 10.1111/j.1471-6712.2008.00652.x
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
- MEDLINE and CINAHL (2001–2006) databases were searched, in addition to hand searching of article references.
- Key words were nursing interventions, family, family health, family nursing, family members, caregivers, and spouse.
- Inclusion criteria included English-language studies with participants who were at least 18 years of age.
- Patients and family members, or family members only, described or tested a nursing intervention and its impact.
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.
- A final sample of 31 studies was used.
- Study sample sizes were not reported.
- Sample characteristics were not fully described, but the authors stated that the majority of interventions were aimed at patients with cancer.
- Other situations included patients with Alzheimer disease, dementia, stroke, and schizophrenia and their family members.
- Of the studies, 22 used quantitative methods, 4 used qualitative methods, and 5 used a combination of these.
- Support and counseling interventions on depressive symptoms of spouses of patients with Alzheimer disease were supported by the evidence.
- Education and support interventions were shown to help improve family members’ ability to control challenging behavior associated with Alzheimer disease and schizophrenia.
- Support and teaching interventions may enhance preparedness and social capability and alleviate depressive symptoms in family members of patients who experienced a stroke.
- Support and teaching interventions may help to improve quality of life in family members of patients with cancer.
- Interventions ranged in duration from 4 to 24 weeks and involved a variety of personal and group meetings and/or phone contact.
- The majority of studies were focused on a single family member and did not consider the wider family context.
- The studies included difficult categories of patients and families (e.g., cancer dementia) that have very different problems and needs, thereby decreasing the applicability of the results.
- Data from the studies was incomplete, such as dropout rates and missing data (particularly the differential dropout rate).
- Not all of the dimensions of RE-AIM were able to be assessed due to insufficient data.
- Interventions were not designed to achieve economic objectives, and consideration was not given to the costs of the intervention.
- Overall, interventions may be effective in alleviating burdens of care and depressive symptoms of family members, as well as assisting their coping.
- These nursing interventions are in development and testing stages. Long-term effects and aspects of maintenance and implementation monitoring are not clear.
- Nursing interventions involving education, counseling, and incorporation of both individual and group activities can be effective in assisting caregivers. The most effective combinations of approaches, setting for provision, and long-term maintenance are not yet clear.
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.doi:10.3322/caac.20081
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
- Databases used in the search were CINAHL, Google Scholar, ISI Web of Knowledge, PsycINFO, and PubMed.
- Keywords were family caregiver, cancer patient, spouse, partner, couple, and interventions used in various combinations. In cases where the query resulted in more than 200 titles, additional refinement was done with use of “random assignment” and “randomization.”
- Hand searches of reference lists of related literature reviews were used to complement computer searches. Limits of English language and involving human subjects were used.
- To be included, (a) the intervention had to involve family caregivers alone or with a patient with cancer, (b) the intervention had to be psychosocially, cognitively, or behaviorally oriented, and (c) participants had to be randomly assigned to either an intervention or control arm of the study.
- Studies involving pediatric patients with cancer and pharmacologic interventions were excluded.
- Initial queries provided 403 articles, in which 160 were potentially relevant. Of these, 124 were excluded as per criteria and 7 were excluded because caregiver outcome data were not reported.
- At least two members of the research team read and analyzed each article. Data were extracted using a standard table, and disagreements were resolved through consensus. Data extracted were organized into three domains: illness appraisal factors, coping resources, and quality of life (QOL).
- Effect sizes were calculated using outcome data from the experimental arm hypothesized by the original researchers to be most effective, in those studies that had more than one experimental arm.
- Extracted data were organized into three time frames: baseline to three months postintervention (T1), follow-up from > three months to six months (T2), and follow-up beyond six months (T3).
The final sample of studies used in the meta-analysis was 29, including a total of 3,495 subjects across all studies.
- 57.1% of interventions were psychoeducational in which the primary focus was to provide information regarding symptom management and physical aspects of care, as well as to direct some attention to emotional and psychosocial needs of patients, caregivers, and marital and family relationship.
- 25.7% of protocols were focused on skills training: development of coping, communication, and problem-solving skills.
- 17.1% of interventions were therapeutic counseling, focusing primarily on development of a therapeutic relationship to address concerns.
- The most common combination of primary and secondary interventions included both psychoeducational and skills training (68.6%).
Appraisal Domain Results
- Eleven studies assessed caregiving burden during the first three months. Effect sizes ranged from -0.12 to 0.62, with a small but significant effect size (g = 0.22).
- In two studies, interventions had a positive significant effect on appraisal of caregiving benefit between three and six months (g = 0.31). Beyond six months, this appraisal showed a larger effect size, but was not significant. (Caregiving benefit was seen as a rewarding experience and opportunity for personal growth.)
- Three studies looked at whether the intervention was effective in addressing caregivers’ information needs. Overall effect size was large and significant (g = 1.36, range = 0.85–1.87).
Coping Resources Domain
- Coping efforts were evaluated during the first three months in 10 studies. After the intervention, overall effect size was moderate but significant (g = 0.47, range = -0.47–1.46).
- In four studies, changes in coping efforts three to six months postintervention showed a smaller but significant effect size (g = 0.20).
- Two studies evaluated coping efforts beyond six months. There was a persistent moderate effect that was significant (g = 0.35).
- In eight studies that evaluated self-efficacy within three months postintervention, overall effect size was small but significant (g = 0.25, range = -0.13–0.93). This positive significant effect persisted over time.
Quality of Life Domain
- In seven studies that evaluated physical functioning, during the first three months overall effect size was small and not significant. However, interventions were superior to usual care in improving physical functions at three to six months (g = 0.22) and beyond six months (g = 0.26).
- Interventions were seen to be superior to usual care in reducing distress and anxiety, and the effect appeared to last for at least 12 months. Sixteen studies evaluated changes in mental distress and anxiety during the first three months, 11 evaluated these changes at three to six months, and 6 evaluated distress and anxiety beyond six months.
- Interventions were not successful in reducing caregivers’ depression. In all of the studies that evaluated these changes at various time points, overall effects were small and not significant.
- Among 10 studies that evaluated changes in marital and family relationships in the first three months, overall effect size was small but significant (g = 0.20, range = -0.18–0.47). Evaluation beyond three months did not show significant effects.
- Effects on social functions in two studies that were evaluated beyond six months showed an overall positive moderate effect that was significant (g = 0.39). There were no other significant effects seen in other studies that evaluated changes in social functioning.
Effect of Intervention Characteristics
- Coping was found to be significantly influenced by the use of face-to-face and group methods of intervention delivery than those using mixed methods to deliver the intervention.
- Intervention hours and number of sessions were significantly positively correlated with coping outcomes.
- More sessions were associated with more negative (worse) outcomes in the case of caregiver burden, depression, and marital-family relations.
- Interventions that included caregivers alone reported significantly better outcomes in appraisal of caregiving benefit than interventions that also included patients.
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.
- The review was not limited to studies that associated interventions with outcomes and did not critique individual studies.
- Interventions often were not clearly described, and well-delineated outcome variables were lacking.
- Small sample sizes and attrition were problems.
- Randomized trials were lacking.
- Most studies revealed selection bias, often to well-adjusted caregivers.
Sörensen, S., Pinquart, M., & Duberstein, P. (2002). How effective are interventions with caregivers? An updated meta-analysis. Gerontologist, 42, 356–372.doi: 10.1093/geront/42.3.356
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.
- The sample represented a mixed caregiver population, primarily of patients with dementia (which included older adults with physical disabilities or mental illness), patients who had experienced a stroke, and patients with cancer.
- The mean or median care recipient age was ≥ 60 years.
- Sample sizes in the intervention condition ranged from 4 to 2,268.
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.
- Multiple dimensions of burden were not disaggregated.
- Many studies had missing data.
- Delivery characteristics were sometimes confounded.
- A selection bias may have existed.
- The study controlled for only some of the possible moderators.
- Efficacy was not evaluated.
Research Evidence Summaries
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.doi: 10.1089/jpm.2012.0491
To evaluate the effectiveness of an outpatient palliative care service
Intervention Characteristics/Basic Study Process:
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
- N = 60 patients, 52 caregivers
- MEDIAN AGE = Patients: 67.5 years (range 32–97 years); caregivers: 41 years (range 29–91 years)
- FEMALES: 77% of caregivers
- KEY DISEASE CHARACTERISTICS: Not stated; all were in the end-of-life phase of care
- OTHER KEY SAMPLE CHARACTERISTICS: The majority of caregivers were women and spouses.
- SITE: Single site
- SETTING TYPE: Home
- LOCATION: Germany
Phase of Care and Clinical Applications:
- PHASE OF CARE: End-of-life care
- APPLICATIONS: Palliative care
- Caregiver and patient questionnaires developed by researchers for this study
- Hospital Anxiety and Depression Scale
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.
- Small sample (less than 100)
- Risk of bias (no control group)
- Risk of bias (no blinding)
- Risk of bias (no random assignment)
- Measurement validity/reliability questionable
- Other limitations/explanation: Questionnaires used to measure burden were not known and validated measures.
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.doi: 10.1016/j.jpainsymman.2003.09.012
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.
- N = 73 adult, informal, unpaid caregivers of patients receiving palliative care (86% of patients had a diagnosis of cancer)
- Home palliative care services in London, United Kingdom
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.
- Zarit burden inventory
- Palliative outcome scale
- Eastern Cooperative Oncology Group performance scale
- Coping responses inventory
- General health questionnaire-12
- State anxiety scale
The intervention was not found to affect outcomes for any measures at post-intervention (eight weeks) or follow-up (five months).
- 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.
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.doi: 10.1002/pon.1786
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
Intervention Characteristics/Basic Study Process:
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.
- The sample was comprised of 681 patients with cancer and 520 carers.
- Patient mean age was 52.8 years (SD = 11.8; range = 18–84 years); carer mean age was 49.7 years (SD = 13.5; range = 18–86 years).
- The male sample was 23.3% patient and 12.5% carer; the female sample was 76.7% patient and 87.5% carer.
- Patients had breast cancer (35.8%), lung cancer (12.5%), bowel cancer (11.3%), prostate cancer (8.5%), hematologic cancer (6.7%), brain cancer (5.6%), melanoma (5.6%), and other cancers (32.9%).
- Of the carers, 94% were patient partners or immediate family members.
- The majority (88%) of patients and carers had an English-speaking background and did not represent ethnically diverse population groups.
- Approximately 75% of patients and carers had finished secondary or tertiary schooling.
- More than half of patients were not working, whereas 25.4% of carers worked full-time.
- More than half (56.7%) of patients had a diagnosis of cancer for six months or less.
- The number of rural and urban patients and carers was approximately equal.
- Home setting
- Queensland, Australia
Phase of Care and Clinical Applications:
- Active treatment
- First diagnosis; cancer diagnosis and treatment continuum; telephone intervention
A repeated measures design was used.
- Distress Thermometer: This instrument measured patient and carer distress during the past week. Data were collected at referral and at the beginning of each telephone session. No identified reliability or validity indices were provided.
- Session satisfaction: Patients and carers provided a single rating of their overall satisfaction with the telephone session. Data were collected at referral and at each counseling session. No identified reliability or validity indices were provided.
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  = 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.
- The study did not have a comparison or control group.
- The study had no randomization to intervention data collection by individuals providing the support sessions immediately before and after each session.
- The study used brief assessment measures with lack of psychometric data: The study did not isolate whether the CCS telephone intervention is more effective at certain times of the cancer trajectory or ways standardization of the intervention occurred that would better support outcomes measures. It appears that the patient and carer separately received the intervention, a process that might prevent needed dialogue between the patient and carer on an urgent issue needing their collaboration. It is not clear how psychologists who provided the intervention were trained or how monitoring occurred to ensure intervention integrity. One may question the freedom of the patient or carer to deliver a true oral evaluation of a counseling session over the phone when that psychologist may render future services.
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.doi: 10.1002/pon.3876
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
Intervention Characteristics/Basic Study Process:
Governmentally supported home hospice services provided to patients with advanced cancer by a multidisciplinary team
- N = 258
- MEDIAN AGE = 41–50 years
- MALES: 33%, FEMALES: 67%
- CURRENT TREATMENT: Other
- KEY DISEASE CHARACTERISTICS: Patients with advanced (stage III/IV) mixed cancer diagnoses and expected to live at least three months
- OTHER KEY SAMPLE CHARACTERISTICS: Caregivers had to be aged at least 21 years and able to communicate in either Mandarin or English
- SITE: Multi-site
- SETTING TYPE: Multiple settings
- LOCATION: Singapore
Phase of Care and Clinical Applications:
- PHASE OF CARE: End-of-life care
- APPLICATIONS: Palliative care
Cross-sectional study with combined data from two studies
- Caregiver Quality of Life Index-Cancer (CQOLC)
- Domain-specific and validated in both ambulatory and hospice care settings
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.
- Risk of bias (no random assignment)
- Unintended interventions or applicable interventions not described that would influence results
- Lack of control on potential study confounding variables; study focus on Chinese caregivers only, so data findings cannot be generalizable.
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.