Background and rationale
Mental health wards (MHW) are a significant site of care for people living with dementia (PLWD), providing care for the most unwell, vulnerable, and high-risk individuals who are detained under the Mental Health Act (1983) for their own safety and the safety of others.
The UK has around 100 MHWs (80 NHS, 20 private) for PLWD, but there's a lack of evidence on care quality and experiences. Stays average 100 days, with most PLWD moving to institutional care rather than returning home.
Admissions often follow severe psychiatric or behavioural issues, such as self-harm or assaults. This population is at high risk to themselves and others, with high acuity and comorbidity. Admissions are complex, involving frequent unscheduled transfers to general hospitals, which are associated with high rates of falls and hospital-acquired infections.
Carer involvement can significantly improve clinical and social outcomes for people in mental health wards by reducing length of stay, promoting earlier discharge, and lowering relapse and readmission rates. Carers provide essential support that staff may not, ensuring person-centred care, advocacy, decision-making support, treatment adherence, and promoting recovery. However, carers often feel marginalized and describe MHWs as a place of 'battle,' experiencing high levels of trauma and distress with unmet emotional, social, and financial needs. Reviews and inquires highlight a culture that views carers as problematic and resource-intensive, leading to their support needs being overlooked.
There is an absence of research examining carer perspectives of MHWs and no evidence-based interventions to support carers of PLWD who are admitted within MHWs. In response, this study responds to urgent calls from the Department of Health and Social Care and NHS England, for partnership working with carers and families utilising co-production to develop effective interventions and training programmes to support carers and the guidance required by services and wards to support implementation.
Research question: How can MHWs effectively work in partnership with and support family carers of PLWD?
Aim and Objectives
This study will provide detailed understandings of carers experiences and involvement when PLWD are detained within a MHW, and staff rationales and responses to carers, throughout an admission. It will deliver new knowledge and evidence-based strategies co-designed to ensure carers are appropriately supported and involved and to improve patient outcomes.
Objectives:
1. To deliver a detailed description of staffing structure, patient profiles, and current support for carers and families in MHWs for PLWD.
2. Provide detailed understandings of carers' experiences, perspectives of involvement, and their support needs throughout a PLWD MHW admission, during transition, and following discharge.
3. Understand ward organisational cultures and staff perspectives by examining (a) ward routines and practices that involve or exclude carers (b) staff understandings and recognition of carers needs, and (c) formal frameworks and informal rationales staff draw on to inform involvement or exclusion from decision making, care, and transition to discharge.
4. Translate the findings using co-design into evidence-based strategies to support best practice in the involvement and support of carers.
5. (a) Assess the feasibility of implementing these strategies in practice and (b) gather feedback from people with lived experience
Design
This mixed methods study uses a convergent parallel mixed methods design integrating a national mapping survey, interviews, ethnography and experience-based co-design and feasibility testing. This approach supports the collection of detailed data from multiple and contextualized perspectives, with the goal to improve healthcare systems.
The study uses family systems theory and the Family Adjustment and Adaptation Response Model (FARR) to understand family responses to stress, such as dementia and mental health admissions. It also incorporates anthropology and sociology theories to explore family and kinship in care contexts and how healthcare professionals and MHWs recognize and respond to families. This combined approach aims to understand carers' and families' experiences and how to best support them during MHW admissions.
