Expectations and motives for nominating a family caregiver to partake in a web-based psychoeducational intervention: perspectives of patients with advanced illness in palliative care

PURPOSE: The field of support interventions targeting family caregivers in palliative care is growing, yet little is known about the patient's perspective when a family caregiver partakes. This study explored what patients in specialized palliative home care expected from, and what motives they had for nominating a family caregiver to partake in, a family caregiver-targeted web-based psychoeducational intervention. METHODS: This qualitative study is part of a randomized controlled trial evaluating the effects of the family caregiver-targeted web-based psychoeducational intervention "narstaende.se." Patients were recruited from specialized palliative home care services after their family caregiver had participated in the intervention arm of the trial. The present study had a qualitative approach using an interpretive descriptive design. Twenty-two interviews were conducted. RESULTS: The patients nominated family caregivers out of concern and recognition of the burden they faced and wished for the family caregivers to be offered support. The patients' choice was mindful, and they refrained from nominating persons whom they perceived as too frail or busy. They expected the intervention would encourage conversations about emotions, illness and the future. CONCLUSION: Patients with life-threatening illnesses enrolled in specialized palliative home care nominated their family caregiver for a family caregiver-targeted web-based psychoeducational intervention out of love, guilt, and responsibility. They expected to approach topics that had previously been avoided and could see potential benefits also for themselves. The study reinforces the implications for support for family caregivers when organizing and providing care for patients with life-threatening illness. TRIAL REGISTRATION: NCT05785494 at clinicaltrials.gov (registered on 2023.02.07).