IMPlementation of An online Relatives' Toolkit for psychosis or bipolar (IMPART study): iterative multiple case study to identify key factors impacting on staff uptake and use.

BACKGROUND: Despite the potential of digital health interventions to improve the delivery of psychoeducation to people with mental health problems and their relatives, and substantial investment in their development, there is little evidence of successful implementation into clinical practice. We report the first implementation study of a digital health intervention: Relatives Education And Coping Toolkit (REACT), into routine mental healthcare. Our main aim was to identify critical factors affecting staff uptake and use of this online self-management tool for relatives of people with psychosis or bipolar. METHODS: A mixed-methods, theory-driven (Normalisation Process Theory), iterative multiple case study approach using qualitative analysis of interviews with staff and quantitative reporting of uptake. Carer researchers were part of the research team. RESULTS: In all, 281 staff and 159 relatives from Early Intervention teams across six catchment areas (cases) in England registered on REACT; 129 staff took part in qualitative interviews. Staff were positive about REACT helping services improve support and meet clinical targets. Implementation was hindered by: high staff caseloads and difficulties prioritising carers; perception of REACT implementation as research; technical difficulties using REACT; poor interoperability with trust computer systems and care pathways; lack of access to mobile technology and training; restricted forum populations; staff fears of risk, online trolling, and replacement by technology; and uncertainty around REACT's long-term availability. CONCLUSIONS: Digital health interventions, such as REACT, should be iteratively developed, evaluated, adapted and implemented, in partnership with the services they aim to support, and as part of a long term national strategy to co-develop integrated technology-enabled mental healthcare. Implementation strategies must instil a sense of ownership for staff and ensure they have adequate IT training, appropriate governance protocols for online working, and adequate mobile technologies. Wider contextual factors including adequate funding for mental health services and prioritisation of carer support, also need to be addressed for successful implementation of carer focussed digital interventions. TRIAL REGISTRATION: Study registration: ISCTRN 16267685.

What do relatives experience when supporting someone in early psychosis?

OBJECTIVES: In the United Kingdom (UK), the government has set out priorities to support relatives and carers. Despite this, many relatives of people experiencing psychosis continue to feel unsupported by mental health services. This may be due to lack of funding, high caseloads for mental health professionals, or due to a lack of understanding of what relatives experience as a result of their family member's psychosis. This research aimed to explore relatives' experiences of supporting a relative in early psychosis. DESIGN: Thematic analysis was used to conduct an in-depth study of relatives' experiences of supporting a family member in early psychosis. METHODS: Eligible individuals were recruited via local National Health Service Early Intervention Teams and other carer support agencies. Four focus groups were conducted, each with a range of five to seven participants. RESULTS: Four key themes 'reflecting relatives' understanding and management of psychosis were identified: 'Psychosis from the relatives' perspective'; 'Relatives' fight with the mental health 'system'; 'Is anybody listening? Does anyone understand?'; and 'Relatives' coping'. Clinical implications of these themes are discussed. CONCLUSIONS: This study has clear implications for improvement in how relatives are supported in the United Kingdom, such as; clearer guidance for staff about confidentiality, treating relatives as partners in care and providing better quality information for relatives. PRACTITIONER POINTS: Continue to improve the Care Plan Approach process to include relatives as partners in care. Information available about psychosis needs to be clear and, where possible, clarify the processes and protocols by which services operate and how to access appropriate help. Move away from simplistic rules about confidentiality and formalise procedures to allow relatives and carers access to the information they need, without impeding service users' rights. For example, providing additional training for professionals such as Rethink's 'Carers and Confidentiality' online resource (http://www.carersandconfidentiality.org.uk/). Improved support, supervision and training are needed for staff to deal with relatives' distress and the impact of psychosis. Relatives' experiences of services is more positive in specialist Early Interventions Services for psychosis, than in other health service teams.

Feasibility of a supported self-management intervention for relatives of people with recent-onset psychosis: REACT study.

BACKGROUND: Relatives of people with psychosis experience high levels of distress and require support. Family interventions have been shown to be effective in improving outcomes but are difficult to access and not suitable for all relatives. AIMS: To assess the feasibility and effectiveness of a supported self-management package for relatives of people with recent-onset psychosis. METHOD: A randomised controlled trial (n = 103) comparing treatment as usual (TAU) in early intervention services with TAU plus the Relatives' Education And Coping Toolkit (REACT) intervention (trial identifier: ISRCTN69299093). RESULTS: Compared with TAU only, those receiving the additional REACT intervention showed reduced distress and increased perceived support and perceived ability to cope at 6-month follow-up. CONCLUSIONS: The toolkit is a feasible and potentially effective intervention to improve outcomes for relatives. A larger trial is needed to reliably assess the clinical and cost-effectiveness of REACT, and its impact on longer-term outcomes.

A systematic review of randomised controlled trials of interventions reporting outcomes for relatives of people with psychosis.

Relatives play a key role in supporting people with psychosis at all stages of recovery, but this can be associated with high levels of distress. Family interventions, with an international evidence base, improve outcomes for service users but little is known about their impact on relatives' outcomes. This review of published evaluations aimed to assess whether family interventions are effective in improving outcomes for relatives of people with psychosis, to identify the key components of effective intervention packages, and to identify methodological limitations to be addressed in future research. Fifty studies were identified which evaluated an intervention to support relatives against a control group, and in which outcomes for the relatives were reported. Thirty (60%) studies showed a statistically significant positive impact of the intervention on at least one relatives' outcome category. Eleven key intervention components were identified across all 50 studies, but there was no evidence that the presence or absence of any of these key components reliably distinguished effective from ineffective interventions. Methodological quality of studies was generally poor with only 11 studies rated as adequate using the Clinical Trial Assessment Measure (CTAM). Recommendations to improve future research include larger samples; better defined interventions and controls; true randomisation and blind assessors; clearly specified primary outcomes; pre-published analysis plans that account appropriately for missing data and clustering of data; a consensus on the most relevant outcomes to assess and valid and reliable measures to do so. Alternative research designs need to be considered to evaluate more recent approaches which focus on family support, personalised to meet individual need, and offered as an integral part of complex clinical services.

Relatives Education And Coping Toolkit--REACT. Study protocol of a randomised controlled trial to assess the feasibility and effectiveness of a supported self management package for relatives of people with recent onset psychosis.

BACKGROUND: Mental health problems commonly begin in adolescence when the majority of people are living with family. This can be a frightening time for relatives who often have little knowledge of what is happening or how to manage it. The UK National Health Service has a commitment to support relatives in order to reduce their distress, but research studies have shown that this can lead to a better outcome for service users as well. Unfortunately, many relatives do not get the kind of support they need. We aim to evaluate the feasibility, acceptability and effectiveness of providing and supporting a Relatives' Education and Coping Toolkit (REACT) for relatives of people with recent onset psychosis. METHODS: The study is a randomised control trial. Trial Registration for Current Controlled Trials ISRCTN69299093. Relatives of people receiving treatment from the Early Intervention Service for psychosis are randomly allocated to receive either Treatment As Usual (TAU) or TAU plus the REACT intervention. The main aims of the study are to: (i) determine the acceptability of a supported self-management intervention; (ii) determine preference for type of support; (iii) assess the feasibility of the design; (iv) identify the barriers and solutions to offering support for self-management approaches within the NHS; (v) estimate the likely effect size of the impact of the intervention on outcome for relatives; (vi) gain detailed feedback about the barriers and solutions to using a self-management approach; (vii) describe the way in which the intervention is used. Outcomes will be assessed from baseline and at 6 month follow-up. DISCUSSION: The intervention is compared to current treatment in a sample of participants highly representative of relatives in routine early intervention services across the UK. The intervention is protocolised, offered within routine practice by existing staff and extensive process data is being collected. Randomisation is independent; all assessments are made by blind raters. The limitations of the study are the lack of control over how the intervention is delivered, the short follow-up period, and the lack of assessment of service user outcomes. Despite these, the findings will inform future effectiveness trials and contribute to the growing evidence base for supported self-mangement interventions in mental health.