The diagnosis and treatment of a brain or spinal cord tumour can have a huge impact on the lives of patients and their families with family caregiving often resulting in considerable burden and distress. Meeting the support needs of family caregivers is critical to maintain their emotional and physical health. Although support for caregivers is becoming more widely available, large‐scale implementation is hindered by a lack of high‐quality evidence for its effectiveness in the neuro‐oncology caregiver population.
To assess the effectiveness of supportive interventions at improving the well‐being of caregivers of people with a brain or spinal cord tumour. To assess the effects of supportive interventions for caregivers in improving the physical and emotional well‐being of people with a brain or spinal cord tumour and to evaluate the health economic benefits of supportive interventions for caregivers.
We searched the Cochrane Central Register of Controlled Trials (CENTRAL; 2018, Issue 7), MEDLINE via Ovid, and Embase via Ovid. We also handsearched relevant published conference abstracts (previous five years), publications in the two main journals in the field (previous year), searched for ongoing trials via ClinicalTrials.gov, and contacted research groups in the field. The initial search was in March 2017 with an update in August 2018 (handsearches completed in January 2019).
We included all randomised controlled trials (RCTs) where caregivers of neuro‐oncology patients constituted more than 20% of the sample and which evaluated changes in caregiver well‐being following any supportive intervention.
Data collection and analysis
Two review authors independently selected studies and carried out risk of bias assessments. We aimed to extract data on the outcomes of psychological distress, burden, mastery, quality of patient–caregiver relationship, quality of life, and physical functioning.
In total, the search identified 2102 records, of which we reviewed 144 in full text. We included eight studies. Four interventions focused on patient–caregiver dyads and four were aimed specifically at the caregiver. Heterogeneity of populations and methodologies precluded meta‐analysis. Risk of bias varied, and all studies included only small numbers of neuro‐oncology caregivers (13 to 56 participants). There was some evidence for positive effects of caregiver support on psychological distress, mastery, and quality of life (low to very low certainty of evidence). No studies reported significant effects on caregiver burden or quality of patient–caregiver relationship (low to very low certainty of evidence). None of the studies assessed caregiver physical functioning. For secondary outcomes (patient emotional or physical well‐being; health economic effects), we found very little to no evidence for the effectiveness of caregiver support. We identified five ongoing trials.
The eight small‐scale studies included employed different methodologies across different populations, with low certainty of evidence overall. It is not currently possible to draw reliable conclusions regarding the effectiveness of supportive interventions aimed at improving neuro‐oncology caregiver well‐being. More high‐quality research is needed on support for family caregivers of people diagnosed, and living, with a brain or spinal cord tumour.
Plain language summary
to help support caregivers of people with a brain or spinal cord tumour
Family caregivers (e.g. spouses, family members or close friends) often provide physical and emotional support to peoples with a brain or spinal tumour (cancer). However, family caregiving is linked to considerable burden and distress. Therefore, it is important to meet the support needs of family caregivers so their emotional and physical health is maintained. This is expected to help the caregiver, the patient, and the family unit.
The aim of the review
To assess the effectiveness of supportive interventions at improving the well‐being of caregivers of people with a brain or spinal cord tumour. To assess the effects of supportive interventions for caregivers in improving the physical and emotional well‐being of patients with a brain or spinal cord tumour and to evaluate the health economic benefits of supportive interventions for caregivers.
We included eight clinical studies. Four studies reported on interventions for patient–caregiver relationship and four studies were aimed specifically at improving caregiver well‐being. We found five ongoing studies.
What were the main findings?
The interventions tested were diverse in nature (e.g. cognitive behavioural therapy (talking therapy); psychoeducation (providing education and information to people seeking or receiving mental health services); coping skills training; self‐management; social network intervention); and delivery (e.g. face‐to‐face; web‐based), and all studies were relatively small (included between 13 and 56 neuro‐oncology caregivers). We found some evidence for positive effects of caregiver support on psychological distress, feelings of mastery (i.e. the feeling of being in control of the caregiving situation), and quality of life.
Reliability of the evidence
None of the studies reported effects on caregiver burden or quality of patient–caregiver relationship. None of the studies measured caregiver physical well‐being. Overall, the certainty of the evidence was low to very low, which means the true effect of caregiver support may be substantially different.
Our findings suggest it is not currently possible to draw definitive conclusions about the effectiveness of supportive interventions to improve neuro‐oncology caregiver well‐being. More high‐quality research is needed on support for family caregivers of patients diagnosed, and living, with a brain or spinal cord tumour.