What are the perceived needs and challenges of informal caregivers in home cancer palliative care? Qualitative data to construct a feasible psycho-educational intervention.

PURPOSE: Tailored and specific interventions for informal caregivers in palliative care are rare. We aimed to generate evidence to inform a subsequent appropriate intervention based on caregivers' experiences. METHOD: Single, semi-structured qualitative interviews were undertaken with 20 informal cancer caregivers of home cancer palliative care. RESULTS: Carers reported the need to be prepared for their caring role, to be visible to professionals, to receive clear and specific information about the patient's condition, and to be emotionally supported. They described challenges as uncertainty, distress at witnessing disease progression and the daily struggle with financial issues, personal time, own health and sleep problems. CONCLUSIONS: Considering the time pressures and restricted caregiver time, the intervention should be brief and should aim to enhance their visibility as service recipients, patient-specific information giving, preparation for their role, and emotional support.