What are we planning, exactly? The perspectives of people with intellectual disabilities, their carers and professionals on end-of-life care planning: A focus group study.

BACKGROUND: Deaths of people with intellectual disabilities are often unplanned for and poorly managed. Little is known about how to involve people with intellectual disabilities in end-of-life care planning. AIM: To explore the perspectives of people with intellectual disabilities, families, health and social care professionals and policy makers on end-of-life care planning within intellectual disability services. DESIGN: A total of 11 focus groups and 1 semi-structured interview were analysed using qualitative framework and matrix analysis. The analysis was conducted inclusively with co-researchers with intellectual disabilities. SETTING/PARTICIPANTS: A total of 60 participants (14 people with intellectual disabilities, 9 family carers, 21 intellectual disability professionals, 8 healthcare professionals and 8 policy makers) from the UK. RESULTS: There were differences in how end-of-life care planning was understood by stakeholder groups, covering four areas: funeral planning, illness planning, planning for living and talking about dying. This impacted when end-of-life care planning should happen and with whom. Participants agreed that end-of-life care planning was important, and most wanted to be involved, but in practice discussions were postponed. Barriers included issues with understanding, how or when to initiate the topic and a reluctance to talk about dying. CONCLUSIONS: To develop effective interventions and resources aiding end-of-life care planning with people with intellectual disabilities, clarity is needed around what is being planned for, with whom and when. Research and development are needed into supporting intellectual disability staff in end-of-life care planning conversations. Collaboration between intellectual disability staff and palliative care services may facilitate timely end-of-life care planning and thus optimal palliative end-of-life care.

Peer support for discharge from inpatient mental health care versus care as usual in England (ENRICH): a parallel, two-group, individually randomised controlled trial.

BACKGROUND: High numbers of patients discharged from psychiatric hospital care are readmitted within a year. Peer support for discharge has been suggested as an approach to reducing readmission post-discharge. Implementation has been called for in policy, however, evidence of effectiveness from large rigorous trials is missing. We aimed to establish whether peer support for discharge reduces readmissions in the year post-discharge. METHODS: We report a parallel, two-group, individually randomised, controlled superiority trial, with trial personnel masked to allocation. Patients were adult psychiatric inpatients (age ≥18 years) with at least one previous admission in the preceding 2 years, excluding those who had a diagnosis of any organic mental disorder, or a primary diagnosis of learning disability, an eating disorder, or drug or alcohol dependency, recruited from seven state-funded mental health services in England. Patients were randomly assigned (1:1) to the intervention (peer support plus care as usual) or control (care as usual) groups by an in-house, online randomisation service, stratified by site and diagnostic group (psychotic disorders, personality disorders, and other eligible non-psychotic disorders) with randomly permuted blocks of randomly varying length to conceal the allocation sequence and achieve the allocation ratio. The peer support group received manual-based, one-to-one peer support, focused on building individual strengths and engaging with activities in the community, beginning during the index admission and continuing for 4 months after discharge, plus care as usual. Care as usual consisted of follow-up by community mental health services within 7 days of discharge. The primary outcome was psychiatric readmission 12 months after discharge (number of patients readmitted at least once), analysed on an intention-to-treat basis. All patients were included in a safety analysis, excluding those who withdrew consent for use of their data. The trial is registered with the ISRCTN registry, ISRCTN10043328. The trial was complete at the time of reporting. FINDINGS: Between Dec 1, 2016, and Feb 8, 2019, 590 patients were recruited and randomly assigned, with 294 allocated to peer support (287 included in the analysis after withdrawals and loss to follow-up), and 296 to care as usual (291 in the analysis). Mean age was 39·7 years (SD 13·7; range 18-75). 306 patients were women, 267 were men, three were transgender, and two preferred not to say. 353 patients were White, 94 were Black, African, Caribbean, or Black British, 68 were Asian or Asian British, 48 were of mixed or multiple ethnic groups, and 13 were of other ethnic groups. In the peer support group, 136 (47%) of 287 patients were readmitted at least once within 12 months of discharge. 146 (50%) of 291 were readmitted in the care as usual group. The adjusted risk ratio of readmission was 0·97 (95% CI 0·82-1·14; p=0·68), and the adjusted odds ratio for readmission was 0·93 (95% CI 0·66-1·30; p=0·68). The unadjusted risk difference was 0·03 (95% CI -0·11 to 0·05; p=0·51) in favour of the peer support group. Serious adverse events were infrequent (67 events) and similar between groups (34 in the peer support group, 33 in the care as usual group). Threat to life (self-harm) was the most common serious adverse event (35 [52%] of 67 serious adverse events). 391 other adverse events were reported, with self-harm (not life threatening) the most common (189 [48%] of 391). INTERPRETATION: One-to-one peer support for discharge from inpatient psychiatric care, plus care as usual, was not superior to care as usual alone in the 12 months after discharge. This definitive, high-quality trial addresses uncertainty in the evidence base and suggests that peer support should not be implemented to reduce readmission post-discharge for patients at risk of readmission. Further research needs to be done to improve engagement with peer support in high-need groups, and to explore differential effects of peer support for people from different ethnic communities. FUNDING: UK National Institute for Health Research.

Introducing peer worker roles into UK mental health service teams: a qualitative analysis of the organisational benefits and challenges.

BACKGROUND: The provision of peer support as a component of mental health care, including the employment of Peer Workers (consumer-providers) by mental health service organisations, is increasingly common internationally. Peer support is strongly advocated as a strategy in a number of UK health and social care policies. Approaches to employing Peer Workers are proliferating. There is evidence to suggest that Peer Worker-based interventions reduce psychiatric inpatient admission and increase service user (consumer) empowerment. In this paper we seek to address a gap in the empirical literature in understanding the organisational challenges and benefits of introducing Peer Worker roles into mental health service teams. METHODS: We report the secondary analysis of qualitative interview data from service users, Peer Workers, non-peer staff and managers of three innovative interventions in a study about mental health self-care. Relevant data was extracted from interviews with 41 participants and subjected to analysis using Grounded Theory techniques. Organisational research literature on role adoption framed the analysis. RESULTS: Peer Workers were highly valued by mental health teams and service users. Non-peer team members and managers worked hard to introduce Peer Workers into teams. Our cases were projects in development and there was learning from the evolutionary process: in the absence of formal recruitment processes for Peer Workers, differences in expectations of the Peer Worker role can emerge at the selection stage; flexible working arrangements for Peer Workers can have the unintended effect of perpetuating hierarchies within teams; the maintenance of protective practice boundaries through supervision and training can militate against the emergence of a distinctive body of peer practice; lack of consensus around what constitutes peer practice can result in feelings for Peer Workers of inequality, disempowerment, uncertainty about identity and of being under-supported. CONCLUSIONS: This research is indicative of potential benefits for mental health service teams of introducing Peer Worker roles. Analysis also suggests that if the emergence of a distinctive body of peer practice is not adequately considered and supported, as integral to the development of new Peer Worker roles, there is a risk that the potential impact of any emerging role will be constrained and diluted.