Increasingly, cancer is recognised as a chronic condition with a growing population of informal caregivers providing care for cancer patients. Informal caregiving can negatively affect the health and well‐being of caregivers. We need a synthesised account of best evidence to aid decision‐making about effective ways to support caregivers for individuals ‘living with cancer’.
To assess the effectiveness of psychosocial interventions designed to improve the quality of life (QoL), physical health and well‐being of informal caregivers of people living with cancer compared with usual care.
We searched CENTRAL, MEDLINE, Embase, PsycINFO, ProQuest, Open SIGLE, Web of Science from inception up to January 2018, trial registries and citation lists of included studies.
We included randomised and quasi‐randomised controlled trials comparing psychosocial interventions delivered to adult informal caregivers of adults affected by cancer on a group or individual basis with usual care. Psychosocial interventions included non‐pharmacological interventions that involved an interpersonal relationship between caregivers and healthcare professionals. We included interventions delivered also to caregiver‐patient dyads. Interventions delivered to caregivers of individuals receiving palliative or inpatient care were excluded. Our primary outcome was caregiver QoL. Secondary outcomes included patient QoL, caregiver and patient depression, anxiety, psychological distress, physical health status and intervention satisfaction and adverse effects.
Data collection and analysis
Pairs of review authors independently screened studies for eligibility, extracted data and conducted ‘Risk of bias’ assessments. We synthesised findings using meta‐analysis, where possible, and reported remaining results in a narrative synthesis.
Nineteen trials (3725 participants) were included in the review. All trials were reported in English and were undertaken in high‐income countries. Trials targeted caregivers of patients affected by a number of cancers spanning newly diagnosed patients, patients awaiting treatment, patients who were being treated currently and individuals post‐treatment. Most trials delivered interventions to caregiver‐patient dyads (predominantly spousal dyads) and there was variation in intervention delivery to groups or individual participants. There was much heterogeneity across interventions though the majority were defined as psycho‐educational. All trials were rated as being at ‘high risk of bias’.
Compared to usual care, psychosocial interventions may improve slightly caregiver QoL immediately post intervention (standardised mean difference (SMD) 0.29, 95% confidence interval (CI) 0.04 to 0.53; two studies, 265 participants) and may have little to no effect on caregiver QoL at 12 months (SMD 0.14, 95% CI ‐ 0.11 to 0.40; two studies, 239 participants) post‐intervention (both low‐quality evidence).
Psychosocial interventions probably have little to no effect on caregiver depression immediately to one‐month post‐intervention (SMD 0.01, 95% CI ‐0.14 to 0.15; nine studies, 702 participants) (moderate‐quality evidence). Psychosocial interventions may have little to no effect on caregiver anxiety immediately post‐intervention (SMD ‐0.12, 95 % CI ‐0.33 to 0.10; five studies, 329 participants), depression three‐to‐six months (SMD 0.03, 95% CI ‐0.33 to 0.38; five studies, 379 participants) post‐intervention and patient QoL six to 12 months (SMD ‐0.05, 95% CI ‐0.37 to 0.26; three studies, 294 participants) post‐intervention (all low‐quality evidence). There was uncertainty whether psychosocial interventions improve patient QoL immediately (SMD ‐0.03, 95 %CI ‐0.50 to 0.44; two studies, 292 participants) or caregiver anxiety three‐to‐six months (SMD‐0.25, 95% CI ‐0.64 to 0.13; four studies, 272 participants) post‐intervention (both very low‐quality evidence). Two studies which could not be pooled in a meta‐analysis for caregiver physical health status found little to no effect immediately post‐intervention and a small intervention effect 12 months post‐intervention. Caregiver or patient satisfaction or cost‐effectiveness of interventions were not assessed in any studies. Interventions demonstrated good feasibility and acceptability.
Psychosocial interventions probably have little to no effect on patient physical health status immediately post‐intervention (SMD 0.17, 95 % CI ‐0.07 to 0.41; four studies, 461 participants) and patient depression three to six months post‐intervention (SMD‐0.11, 95% CI ‐0.33 to 0.12; six studies, 534 participants) (both moderate‐quality evidence).
Psychosocial interventions may have little to no effect on caregiver psychological distress immediately to one‐month (SMD ‐0.08, 95% CI ‐0.42 to 0.26; three studies, 134 participants), and seven to 12 months (SMD 0.08, 95% CI ‐0.42 to 0.58; two studies, 62 participants) post‐intervention; patient depression immediately (SMD ‐0.12, 95% CI ‐0.31 to 0.07; nine studies, 852 participants); anxiety immediately (SMD ‐0.13, 95% CI ‐0.41 to 0.15; four studies, 422 participants), and three to six months (SMD ‐0.22, 95% CI ‐0.45 to 0.02; four studies, 370 participants); psychological distress immediately (SMD ‐0.02, 95% CI ‐0.47 to 0.44; two studies, 74 participants) and seven to 12 months (SMD ‐0.27, 95% CI ‐0.78 to 0.24; two studies, 61 participants); and physical health status six to 12 months (SMD 0.06, 95% CI ‐0.18 to 0.30; two studies, 275 participants) post‐intervention (all low‐quality evidence).
Three trials reported adverse effects associated with the interventions, compared with usual care, including higher distress, sexual function‐related distress and lower relationship satisfaction levels for caregivers, higher distress levels for patients, and that some content was perceived as insensitive to some participants.
Trials not able to be pooled in a meta‐analysis did not tend to report effect size and it was difficult to discern intervention effectiveness. Variable intervention effects were reported for patient and caregiver outcomes.
Heterogeneity across studies makes it difficult to draw firm conclusions regarding the effectiveness of psychosocial interventions for this population. There is an immediate need for rigorous trials with process evaluations and clearer, detailed intervention descriptions. Cost‐effectiveness studies should be conducted alongside future trials.
Plain language summary
Psychosocial support for informal caregivers of people living with cancer
Increasingly, people who are not health professionals provide care for a partner, family member or friend affected by cancer, which can have negative effects on their health and well‐being. Psychosocial interventions that comprise psychological or social support and involve direct interaction between a healthcare professional and caregivers (or caregiver‐patient pairs) may help to address the negative health effects for caregivers.
What is the effectiveness of psychosocial interventions compared to usual care for informal caregivers of people living with cancer on a range of outcomes related to health and well‐being?
We found19 trials that compared psychosocial interventions with usual care, in studies that included almost four thousand participants. Studies included caregivers of people affected by different cancers across all stages of the disease. There were differences in intervention make‐up. Intervention examples include providing information and/or teaching caregivers (or caregiver‐patient pairs) coping, communication or problem‐solving skills to manage symptoms or improve relationships. Interventions were delivered by nurses, psychologists or other professionals on an outpatient basis or at home via telephone.
There may be a minimal benefit for caregiver quality‐of‐life immediately after the intervention, but this may not last. Psychosocial interventions may have little to no effect on quality of life for patients six to 12 months post‐intervention, but we are uncertain whether or not interventions improve quality of life for patients immediately post‐intervention.
Psychosocial interventions may have little to no effect on caregiver depression, anxiety, distress and physical health and patient anxiety and distress at any time after the intervention, or on patient depression immediately and patient physical health six to 12 months post‐intervention. Psychosocial interventions probably have little to no effect on patient physical health immediately post‐intervention or patient depression three to six months post‐intervention.
Three studies reported adverse effects including increased distress and sexual function‐related distress and lower relationship satisfaction levels for carers, increased distress levels for patients, and intervention content that was seen as inappropriate for some participants. No studies looked at cost‐effectiveness or intervention satisfaction for caregivers or patients. Because the quality of evidence was low generally, findings must be treated with caution.
Psychosocial interventions do not impact to a clinically meaningful degree outcomes for caregivers irrespective of patient cancer stage or type. Perhaps, other outcomes (e.g. relationship quality) or other psychosocial interventions (e.g. meditation) may be more helpful for caregivers. Interventions should be subjected to better conducted trials. Intervention development should involve caregivers and pay particular attention to individual personal needs.