Family and Caregiver Schizophrenia Discussion Forum

Carers' experiences of involvement in care planning


#1

Abstract
Background

Formal recognition and involvement of carers in mental health services has been the focus of recent policy and practice initiatives as well as being supported by carers themselves. However, carers still report feeling marginalised and distanced from services. A prominent theme is that that they are not listened to and their concerns are not taken seriously. Compared to service user views, the reasons underpinning carers’ dissatisfaction with care-planning procedures have been relatively neglected in the research literature, despite the substantial and significant contribution that they make to mental health services. The aim of the study was to explore carers’ experiences of the care planning process for people with severe mental illness.
Methods

Qualitative interviews and focus groups were undertaken with carers. Data were combined and analysed using framework analysis.
Results

Whilst identifying a shared desire for involvement and confirming a potential role for carers within services, our data highlighted that many carers perceive a lack of involvement in care planning and a lack of recognition and appreciation of their role from health professionals. Barriers to involvement included structural barriers, such as the timing and location of meetings, cultural barriers relating to power imbalances within the system and specific barriers relating to confidentiality.
Conclusions

This qualitative study led by a researcher who was a carer herself has developed the understanding of the potential role of carers within the care planning process within mental health services, along with the facilitators and barriers to achieving optimal involvement.


#2

I’ve seen how docs have treated my family… which considering they were the one’s paying the bills… I was surprised how tossed aside they were by some docs.