Access for Cancer Caregivers to Education and Support for Shared Decision Making (ACCESS) intervention: a cluster cross-over randomised clinical trial

Abstract

ObjectivesThe 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.MethodsThis 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.ResultsThere 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.ConclusionsWhile 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 Social Work Preferences for the Delivery of Facebook Support Groups: A Discrete Choice Experiment

“…15 The evidence has found that family caregiver depression can be lessened with participation in a Facebook support group. 9 Likewise, the overwhelming perceptions of social workers in this sample is that Facebook online support groups would be at least somewhat beneficial for hospice caregivers (96%). However, the specifics on how to offer this service are not as clear.…”

“…21 Another possibility for corporate hospices would be to offer the service from the corporate or regional office. We know that online Facebook groups reduce family caregiver depression 9 and we know from these data that 96% of social workers believe they are valuable for family members. Therefore, it is important to commit to providing this service as an option for family caregivers, even if the group is not an alternative for every caregiver.…”

“…The online Facebook intervention was feasible, caregivers were satisfied, and identified positive benefits. 9…”

“…The online Facebook intervention was feasible, caregivers were satisfied, and identified positive benefits. 9 Like many interventions sponsored by the National Institutes of Health, despite its successful outcomes, ACCESS faces barriers in practice that make its translation into local hospices challenging. Research has shown that change becomes more manageable if those subject to it have an opportunity to participate in the decision making and express their preferences and concerns.…”

Pain Management Education for Rural Hospice Family Caregivers: A Pilot Study With Embedded Implementation Evaluation

“…One recent RCT found that hospice family caregivers who participated in a private online support group on Facebook experienced statistically significant decreases in depression compared with HFCGs in the usual care control group. 21 Study participants also indicated researchers should consider adapting Ready2Care to conditions commonly encountered in hospice, such as dementia and other illnesses that may result in cognitive impairment, as pain may be undercontrolled in these populations due to caregiver difficulties assessing and managing pain among patients who are nonverbal or who experience other communication challenges, 49 highlighting the unique disease-specific contexts in which hospice caregiving takes place. Importantly, however, study findings suggest that any future changes to the Ready2Care pain education brochure should be made in such a way that its clarity and ease of understanding are retained, particularly given that the average of participants' health literacy scores fell between cut-offs for "marginal" and "adequate" levels, and numerous participants commented positively about the lower literacy level at which the Ready2Care pain education brochure is currently written.…”