Family Interventions iN Dementia Mental Health Environments

University of West London343 enrolled

Overview

Study Goal: Understand carers' needs when someone with dementia is in a mental health ward and develop strategies to support carers as partners in care. Research Questions: * What are mental health wards like in terms of staff, patients, and current carer support? * What do carers experience and need during admission, discharge, and beyond? * How do ward routines and staff practices affect carer involvement? * How can co-design turn research into practical strategies for carer support? * Can these strategies be implemented effectively? Method: The investigators will survey mental health wards nationwide, interview carers from three UK wards, observe ward practices, and talk to staff. They will use this information to create and share practical strategies to improve carer support across the UK.

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.

Eligibility

Sex: ALLHealthy volunteers:

Medical Language ↔ Plain English

Survey Inclusion Criteria: * Ward managers of mental health wards that provides care to PLWD * Ward managers from NHS wards that provides care to PLWD * Ward managers from private providers that provides care to PLWD * Ward managers that work on organic or mixed wards that provides care to PLWD Exclusion Criteria: * Functional older adult mental health wards that do not provide care to PLWD * Staff members who are not the ward manager Longitudinal interviews with current carers Inclusion criteria: * Family member (any relationship) or friend of a PLWD currently receiving care on a mental health ward * Aged 18 years old or above * Has capacity to consent to participate in an interview * Willing to take part in 3 interviews over 12 months Exclusion criteria: * The carer is actively involved in a safeguarding investigation. * The carer is under 18 years old * The carer does not have capacity to consent to participate in an interview Interviews with discharged carers Inclusion criteria: * Family member (any relationship) or friend of a PLWD discharged from the ward within the last 3 years * Aged 18 years old or above * Has capacity to consent to participate in an interview * Willing to take part in an interview Exclusion criteria: * The carer is actively involved in a safeguarding investigation * The carer is under 18 years old * The carer does not have capacity to consent to participate in an interview Interviews with People Living With Dementia (PLWD) Inclusion criteria: * PLWD currently under the care of the mental health ward * PLWD discharged from the care of a dementia mental health ward within the last 3 years * Has capacity to give informed consent to taking part in an interview * Willing to take part in an interview alongside their carer Exclusion criteria: * The PLWD is actively involved in a safeguarding investigation * The PLWD does not have capacity to consent to participate in an interview * The PLWD is not willing to take part in an interview alongside their carer * The PLWD has been discharged from the care of a dementia mental health ward for more than 3 years Co-design study - PLWD and carers Inclusion criteria: * PLWD who may, or may not, have experience of dementia mental health wards * Carers (family members or friends) of PLWD who may, or may not, have experience of dementia mental health wards * Willing to talk about mental health and dementia * Aged 18 years old or above * Have capacity to give informed consent Exclusion criteria: * Participants who do not have experience of living with, or caring for someone with, dementia * Not willing to talk about mental health and dementia * Aged under 18 years old * Does not have capacity to give informed consent Co-design study - staff Inclusion criteria: * Members of staff working within mental health wards for PLWD * Members of staff of any professional group in a role that involves contact with carers (e.g. health care assistants, nurses, occupational therapists, psychologists, physiotherapists, speech and language therapists, family therapists, psychiatrists etc) * Members of staff of any pay band or grade * Students on placement in a mental health ward * Members of staff working on NHS or private wards Exclusion criteria: * The staff member is actively involved in a safeguarding investigation * Members of staff that do not work within mental health wards for PLWD Feasibility study - PLWD and carers Inclusion criteria: * PLWD * Carer (family or friend; current or bereaved) * Willing to review outputs related to mental health wards * Aged 18 years old or above * Capacity to consent to take part Exclusion criteria: * The participant (PLWD or carer) is actively involved in a safeguarding investigation. * Is not willing to review outputs related to mental health wards * Aged under 18 years old * Does not have capacity to consent to take part Feasibility study - staff Inclusion criteria: * Members of staff working within mental health wards for PLWD * Members of staff of any professional group in a role that involves contact with carers (e.g. health care assistants, nurses, occupational therapists, psychologists, physiotherapists, speech and language therapists, family therapists, psychiatrists etc) * Members of staff of any pay band or grade * Students on placement in a mental health ward * Members of staff working on NHS or private wards Exclusion criteria: * The staff member is actively involved in a safeguarding investigation * Members of staff that do not work within mental health wards for PLWD

Outcomes

Primary Outcomes

A national survey to map current care provision for people living with dementia admitted to a mental health ward across the UK

National mapping survey to gather data on the number/type of wards, patient and staff demographics and existing care provision for people living with dementia who are detained under the Mental Health Act and receiving care on a mental health ward.

Time frame: 6 months

Ethnographic observations to understand how carers are supported and involved in the care of their friend/relative with dementia receiving care on a mental health ward

Ethnographic observation of staff and family carers on the ward. The focus of the observations is on the organisation of care. Observations will take place from the corridor(s) of wards, in communal areas, typically at nursing stations or ward observation points. Short, 'in-situ' conversational interviews (around 5-10 minutes) will take place on the ward with staff. These will be unstructured conversations to capture 'in-the-moment' experiences. Observations and 'in-situ' conversations will be documented using a touch screen tablet device.

Time frame: 1 year

Interviews with current carers to understand their experiences and involvement in the care of their friend/relative with dementia who is receiving care on a mental health ward

Interviews with carers across 3 NHS sites in the UK, who currently have a friend/relative with dementia receiving care on a mental health ward (8 carers per ward = 24 carers in total). Carers will be interviewed at 3 timepoints over 12 months to understand their experiences over time. Total number of interviews = 72. The sample of carers will be identified by ward managers. A semi-structured interview schedule will be used following a narrative interview approach.

Time frame: 1 year

Interviews with discharged carers to understand their experiences and involvement in the care of their friend/relative with dementia who had previously received care on a mental health ward

Interviews with 'discharged' carers across 3 NHS sites, i.e. carers whose friend/relative with dementia had previously received care on a mental health ward and have been discharged from the ward within the last 3 years. 8 carers per ward = 24 interviews in total. The sample of carers will be identified via screening of ward records completed by ward managers at each ward. A letter and Participant Information Sheet (PIS) will be sent by post to invite discharged carers to participate in an interview. A semi-structured interview schedule will be used to capture their views and experiences.

Time frame: 1 year

Interviews with ward staff to understand their experiences of supporting and involving carers in the care of their friend/relative with dementia receiving care on a mental health ward

Interviews with ward staff, such as nurses, healthcare assistants, psychiatrists across 3 NHS sites. 5 ward staff per site will be interviewed = 15 interviews. Ward staff will be identified in collaboration with ward managers. A semi-structured interview schedule will be used to capture their views and experiences.

Time frame: 1 year

Focus groups with staff to assess the feasibility (acceptability, implementation, integration, relevance) of implementing co-designed strategies in practice

Focus groups with staff to address: i) acceptability, to what extent these strategies reflect current practice, constraints, and the potential for new approaches; ii) implementation, to what extent they can be successfully delivered; iii) integration, to what extent they can be integrated into routine practice iv) relevance and acceptability of the outputs created for PLWD, carers and families. Three online focus groups of 8-10 participants (n=30) will provide opportunity for discussion to explore the structural and organisational barriers within wards that may facilitate or impede effective implementation.

Time frame: 6 months

Acceptability of co-designed strategies and resources

PLWD, carers and families will be invited to share their perspectives around acceptability of the co-designed resources in a way that suits them most. This is a person-centered, inclusive approach to gathering feedback, where different approaches are paramount to suit different needs. People with lived experience could share their feedback by annotating printed or electronic versions of documents, having a brief conversation with the researcher online, over the phone or in person via the researcher attending their PPI meetings.

Time frame: 6 months

Family Interventions iN Dementia Mental Health Environments

Overview

Conditions

Eligibility

Locations (1)

Outcomes

Primary Outcomes

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