Experiences of participation in an education and support group for carers of people with longer-term psychosis: a qualitative study.

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Tác giả: Jackie Bailey, Jo Billings, Dave Fearon, Philippa Greenfield, Helen Killaspy, Isabel Millard, Henry J Whittle

Ngôn ngữ: eng

Ký hiệu phân loại: 001.434 Experimental method

Thông tin xuất bản: England : BMC psychology , 2025

Mô tả vật lý:

Bộ sưu tập: NCBI

ID: 495431

 BACKGROUND: It is well-established that carers of people with psychosis require support given the stress, social isolation and health problems commonly associated with their caring role. However, interventions for carers are under-researched and underprovided. Psychoeducation and support groups can improve carers' experiences of caregiving, but there is insufficient evidence to inform an optimal intervention. Furthermore, the limited existing literature tends to focus on carer groups provided within early intervention services. We designed and implemented an education and support group programme for carers of people with longer term psychosis. The group ran twice, online in 2021 and face-to-face in 2023. We conducted a qualitative service evaluation to explore participants' experiences of participation in the group and inform its further refinement. METHODS: We conducted in-depth, semi-structured interviews before and after each group programme which explored carers' experiences of caring and of group participation, in order to understand its impact, potential mechanisms of effect, and any helpful or challenging aspects. Facilitators also provided written reflective notes. Data were analysed using reflexive thematic analysis. RESULTS: Seventeen carers and four facilitators participated. The group programme received highly positive feedback. Four main themes were identified regarding its impact on the experience of caring: 1) isolated versus connected and supported
  2) disempowered versus empowered
  3) grief, guilt, worry versus acceptance
  4) unmet needs: the challenges associated with participants' caring roles which were not addressed by group participation. The group's mechanisms of effect included: building connections between carers, building carers' connections with services, and providing psychoeducation that improved carers' confidence and increased their empathy for their relative. Key components of the group's design were: attendees having similar experiences of caring attendees receiving clear information about the group's purpose and format, and facilitation by senior mental professionals who enabled discussion. The main area for improvement was to increase accessibility to carers from minority groups. CONCLUSIONS: This study explored participants' experiences of a psychoeducation and support group for carers of people with longer-term psychosis and showed that it was largely acceptable and received positively by participants. The results may explain why recent trials of carer focussed interventions that have relied on digital contact were not effective. Further research is needed, including clinical trials, to investigate the clinical and cost effectiveness of face-to-face carer groups.
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