“Being an informal caregiver – strengthening resources”: mixed methods evaluation of a psychoeducational intervention supporting informal caregivers in palliative care

Abstract

BackgroundInformal caregivers are key support for patients with progressive incurable diseases. However, their own needs often remain unmet. Therefore, we developed, manualised and implemented the intervention “Being an informal caregiver – strengthening resources” aiming to support and empower informal caregivers by addressing relevant information-related, physical, psychological and social needs.MethodsIn this pilot study, we evaluated the acceptance and experiences with this psychoeducational intervention. The study was conducted over two years (2019-2021). Informal caregivers were recruited from the University Medical Centre Hamburg-Eppendorf and the metropolitan region of Hamburg, Germany. The intervention was aimed at adult persons who identified themselves as an informal caregiver to an adult patient with a progressive incurable cancer and non-cancer disease. For the evaluation we used a mixed methods approach, combining a longitudinal questionnaire survey (pre-intervention, after each module, 3-months follow-up) and semi-structured interviews post-intervention. Quantitative data were analysed using descriptive statistics and a paired t-Test, interviews were analysed based on the qualitative content analysis according to Mayring. Results were triangulated using a convergent triangulation design.ResultsOf 31 informal caregivers who received the intervention, 25 returned the follow-up questionnaire and 20 informal caregivers were interviewed. Triangulated results showed a high satisfaction with the implementation of the intervention. Of a broad range of subjective benefits, gaining knowledge, self-awareness and self-efficacy were most apparent. Informal caregivers reported improved preparedness, awareness of own needs as well as confidence regarding handling own emotions and interacting with the ill person. However, implementing the learned skills into daily life can be challenging due to internal and external factors. Motivations and challenges for participating as well as potential for improvement were identified.ConclusionsThis pilot study showed an overall positive evaluation and several subjective benefits of the psychoeducational intervention “Being an informal caregiver – strengthening resources”. Further research is needed to measure the efficacy of this intervention on informal caregivers’ outcomes. Therefore, a multicentre randomized prospective study is planned.