"Being an informal caregiver - strengthening resources": mixed methods evaluation of a psychoeducational intervention supporting informal caregivers in palliative care
- PMID: 38600500
- PMCID: PMC11007958
- DOI: 10.1186/s12904-024-01428-0
"Being an informal caregiver - strengthening resources": mixed methods evaluation of a psychoeducational intervention supporting informal caregivers in palliative care
Erratum in
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Correction: "Being an informal caregiver - strengthening resources": mixed methods evaluation of a psychoeducational intervention supporting informal caregivers in palliative care.BMC Palliat Care. 2024 May 2;23(1):113. doi: 10.1186/s12904-024-01444-0. BMC Palliat Care. 2024. PMID: 38698389 Free PMC article. No abstract available.
Abstract
Background: Informal 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.
Methods: In 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.
Results: Of 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.
Conclusions: This 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.
Keywords: Empowerment; Informal caregivers; Palliative care; Pilot study; Psychoeducational intervention.
© 2024. The Author(s).
Conflict of interest statement
The authors declare no competing interests.
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Cited by
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Correction: "Being an informal caregiver - strengthening resources": mixed methods evaluation of a psychoeducational intervention supporting informal caregivers in palliative care.BMC Palliat Care. 2024 May 2;23(1):113. doi: 10.1186/s12904-024-01444-0. BMC Palliat Care. 2024. PMID: 38698389 Free PMC article. No abstract available.
References
-
- D'Alvano G, Buonanno D, Passaniti C, De Stefano M, Lavorgna L, Tedeschi G, et al. Support needs and interventions for family caregivers of patients with Amyotrophic Lateral Sclerosis (ALS): A Narrative review with report of telemedicine experiences at the time of COVID-19 pandemic. Brain Sci. 2021;12(1):49. - PMC - PubMed
-
- Ullrich A, Ascherfeld L, Marx G, Bokemeyer C, Bergelt C, Oechsle K. Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients. BMC Palliat Care. 2017;16(1):31. doi: 10.1186/s12904-017-0206-z. - DOI - PMC - PubMed
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