Objectives The purpose of this study was to test an intervention named ACCESS (Access for Cancer Caregivers to Education and Support for Shared Decision Making). The intervention uses private Facebook support groups to support and educate caregivers, preparing them to participate in shared decision-making during web-based hospice care plan meetings. The overall hypothesis behind the study was that family caregivers of hospice patients with cancer would experience lower anxiety and depression as a result of participating in an online Facebook support group and shared decision-making with hospice staff in a web-based care plan meeting.
Methods This is a cluster cross-over randomised three-arm clinical trial where one group participated in both the Facebook group and the care plan team meeting. A second group participated only in the Facebook group and the third group was a control group and received usual hospice care.
Results There were 489 family caregivers who participated in the trial. There were no statistically significant differences between the ACCESS intervention group and the Facebook only or the control group on any outcome. The participants in the Facebook only group, however, experienced a statistically significant decrease in depression compared with the enhanced usual care group.
Conclusions While the ACCESS intervention group did not experience significant improvement in outcomes, caregivers assigned to the Facebook only group showed significant improvement in depression scores from baseline as compared with the enhanced usual care control group. Further research is needed to understand the mechanisms of action leading to reduced depression.
- Hospice care
- Family management
- Psychological care
- Social care
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Contributors DPO: was guarantor and principal investigator thus reponsible for overall conduct of the study, content of manuscript, integrity of all data, decision to publish, writing, oversight of all activities. KW, LP, GD: conceptual design, research design, data analysis, writing. JB: research design, data analysis, writing. RLK: research design, data management, data analysis, writing. JL: statistical analysis. JS: data collection, data management. KP: statistical analysis, writing. PW: conceptual design, research design.
Funding Research reported in this publication was supported by the National Cancer Institute under award number R01CA203999 (DPO). Partial support was also received from the Barnes Jewish Hospital Foundation, St Louis, Missouri.
Disclaimer The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Competing interests None declared.
Provenance and peer review Not commissioned; internally peer reviewed.