An estimated 10-60% of family caregivers of patients with advanced incurable cancer experience negative psychological and physical sequelae including anxiety, depression (1, 2), grief (3), and poor physical health problems (4). Many interventions have been developed to evaluate the negative sequelae of caregivers in palliative care and recognize them as a unit of “care recipients” in their own right. However, little is known about the effectiveness of those interventions on family caregiver focused outcomes.
2. Objective
To synthesize the extant research exploring outcomes of caregivers of palliative care patients with advanced cancer and determine the effectiveness of tested interventions.
3. Methods
We conducted a comprehensive search of English-language literature published between 2007 and 2018 using CINAHL, MEDLINE, PsycINFO, Web of Science, and the Cochrane Library. We also hand searched the reference lists of included articles. We included RCTs and quasi-experimental intervention studies with the stated aim of determining their effectiveness among family caregivers of palliative patients with an advanced cancer. In addition, we limited studies to those that measured caregiving burden, quality of life, psychological distress, competence, and self-efficacy for caregiving in the analysis.
4. Results
Our search criteria initially yielded 1,361 total studies of which we ended up including 12 studies after screening the abstract and full text of articles:10 randomized controlled trials (RCTs), 1 cluster randomized trial, and 2 quasi-experimental studies. The interventions for family caregivers were comprised of psychosocial, educational, and informational supports.
§ Effects of intervention
-Caregiving burden: Family caregivers in intervention groups reported significantly fewer problems with objective burden and perceived disruption of the tangible aspects of their life although the magnitude of effects on both was not consistent (5-7).
-Quality of life: Five of seven studies showed positive outcomes on quality of life (7-10).
-Psychological distress: Eight studies examined the effectiveness of an intervention on psychological distress by assessing some of the outcomes which are anxiety, depression, stress, negative moods, or emotional distress (5-8, 11-14). Seven studies of eight reported positive effects of interventions in decreasing psychological distress.
-Self-efficacy and Competence for caregiving: In terms of self-efficacy, all four studies showed positive effects of the support programs for family caregivers (8-10, 15). The psychoeducational intervention had benefits on competence in a study (16). However, the effect on competence did not last until 2-month follow-ups.
§ Risk of bias
The quality of included studies was assessed using two quality assessment tools, the Cochrane RoB tool for RCTs and the ROBINS-I tool for quasi-experimental studies. Of the 10 RCTs, five studies were evaluated to have good quality (6, 8, 12-14, 16). Two of quasi-experimental studies were appraised to have a moderate quality of study.
5. Conclusion
This systematic review provides useful information of trends and gaps related to family-caregiver supporting programs in the context of palliative care as follows. In spite of the various types of supports and levels of their effectiveness, supporting programs for family caregivers of palliative patients with an advanced cancer show great potential for enhancing caregivers’ psychological distress, quality of life, caregiving burden, self-efficacy, and competence for caregiving. However, more robust research is needed in order to achieve stronger evidence in terms of quality of study designs and outcome measures. Also, considering the lack of evidence on long-term effectiveness for caregivers, research that tracks the effect of supporting programs longitudinal is needed.
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