Advance Statements for Black African and Caribbean people (AdStAC): protocol for an implementation study

Black service users, carers/supporters and mental health staff/professionals will be invited to participate via means of social media, the National Health Services’ (NHS) mental health service provider’s website, presentations to clinical teams and service providers, adverts, flyers and use of existing partnership agreements with local members of Black communities and organisations.

Aims

The aim of this study is to co-produce and test an advance statement’s implementation resource for Black people previously detained under the MHA, which can be applied to implement advance statements for all people with SMI in all primary and secondary care mental health services. Specific objectives are as follows, to:

1.

Ascertain barriers to and enablers of completing, accessing, honouring and reviewing advance statements by Black service users.

2.

Gather stakeholder feedback on pre-existing advance statement templates and modify them.

3.

Co-produce guidance and training on advance statement implementation.

4.

Co-produce implementation strategies to support the use of the modified advance statement template.

5.

Test the implementation of advance statements using the resource developed in Objectives 1–4 against process and service user satisfaction measures.

6.

Revise and re-test implementation of advance statements based on results of testing, using Plan-Do-Study-Act Cycles (PDSA)

7.

Disseminate the revised implementation resource for advance statements and the study results.

Design

The study comprises three phases: 1) formative work through stakeholder workshops; 2) co-production of resources and implementation strategies through a Delphi consensus development exercise and working groups; and 3) testing of the resources and implementation strategies using quality improvement (QI) methods.

Setting

The study sites will be based in four local government areas in South London served by the same National Health Service (NHS) mental health service provider. These sites were selected to build on established ACD/AS resources and because their total populations serve large numbers of Black people (Lambeth 24%, Lewisham 26.8%, Southwark 25.1%, Croydon 22.6% [33].

ProceduresParticipants

Eligible participants across all three study phases will be: service users aged 16 + who have been previously detained under the MHA who self-identify as being of Black African or Caribbean heritage, or mixed with Black ethnicity including one of these; informal supporters/carers (18 +) of eligible service users, who are likely to be named in advance statements; professionals likely to be involved in supporting completion and revision of advance statements (community mental health team [CMHT] staff, advocates, peer workers); professionals likely to be involved in referring to advance statements (inpatient and emergency department, home treatment, place of safety and street triage staff); professionals involved in detention under the Mental Health Act (approved mental health professionals (AMHPs) and Sect. 12 approved doctors) who need to access advance statements; and primary care staff including mental health leads, who care for people with SMI discharged from secondary services.

Sampling technique and sample sizes

Purposive sampling will be used for all three phases with the aim of recruiting:

All mental health staff types,

carers/supporters of any ethnicity, gender and of varying ages and

Black people of Black African and Caribbean heritage of any gender, varying ages and mental health diagnoses, and to include some with experience of forensic services.

Phase 1 stakeholder workshops will have up to 10 participants per workshop, with a total of 20 service user participants, 30 staff/professionals participants and 10 carers/supporters participants. For the Phase 2 consensus development exercise and coproduction working groups there will be up to 15 participants with a total of 60 participants for Phase 2. For Phase 3 the aim will be to recruit a target sample of 60 participants producing an ACD/AS and those involved in the completion of their advance statement.

Recruitment

Recruitment for staff, service users and carers/supporters for all phases of the study will occur through presentation to clinical teams and service providers via presentations to clinical teams and service providers, adverts, flyers to Academic Health Science Network organisations (e.g., the National Health Service (NHS), charity organisations (e.g., Recovery Colleges, Black Thrive), faith-based and community settings (e.g., carer support groups, local churches) and social media platforms.

Service users and carer/supporters will specifically be recruited through: peer support services/groups within the boroughs; flyers distributed physically at service sites and through social media, podcasts and an NHS based app for those using this service provider to potential participants and through the prior listed groups and organisations; the use of existing partnership arrangements with local leaders and members of Black communities and organisations, including voluntary sector groups and faith-based organisations that support Black people’s mental health and wellbeing such as the ON TRAC project – a collaborative project between King’s College London and Black faith community groups in South London – and the Patient and Carers Race Equalities Framework (PCREF) – a strategy that aims to improve the experience of ethnic minority communities experiences of care in mental health services; and the NHS mental health service provider’s intranet; contacting local media such as radios and newspapers; community mental health teams; using the Clinical Records Interactive Search system (CRIS) in collaboration with Maudsley Biomedical Research Centre (BRC) where study information will be sent to patients who have provided Consent for Contact (C4C).

ProceduresPhase 1: Formative work Design

To address Objective 1, six stakeholder workshops will be held for separate groups of staff (2–3 groups), service users (2 groups) and carers/supporters (1 group). Each stakeholder workshop will be lead and facilitated by members of the research team, where participants will be informed of:

The work of the Independent Review of the Mental Health Act (MHA) in England;

The government’s acceptance of, and response to, the Review’s recommendation of the introduction of advance choice documents;

Current projects within the NHS mental health service provider that use advance statements and crisis planning (Crisis Plus and Crisis PACk [10, 17]); evidence for implementation barriers and facilitators.

Questions for the workshops will be developed by the research team and project advisory groups, and will be informed by the teams’ clinical expertise, lived experience of the research team and advisory groups and previous research on the use of ACDs/AS and their use amongst Black service users.

Data analysis

The workshops will recorded and transcribed verbatim. The transcripts will be analysed using the framework method [34] to identify common themes from each individual workshop, which will provide provisional recommendations for the implementation resource and issues requiring further discussion during Phase 2. In order to appropriately analyse and understand the current ACD/AS issues all stakeholders experience, so that an informed and systematic approach is taken for Phase 2 in developing the implementation resource [35, 36]. Results of the workshop will be discussed with the Staff Advisory Group and the Lived Experience Advisory Group to inform the design of Phase 2 workshops, and to develop a set of provisional recommendations on the procedures and materials for Phase 3 where the ACD/AS resource will be implemented.

Phase 2: Consensus development exercise and coproduction of implementation resource Design

Phase 2 address objectives 2–4 and comprises a consensus development exercise and three co-production workshops for service users, carers and staff meeting the same inclusion criteria as Phase 1 to attend jointly. Participants who contribute to Phase 1 will be asked for their consent to partake in Phase 2.

Consensus development exercise

A modified nominal group technique will be used with the results and recommendations from Phase 1 used as the basis for the exercise. This approach will give flexibility for the participants to discuss the complexity of the issues surrounding the recommendations from Phase 1, whilst ensuring critical reflection and the refining of other recommendations [3, 37].

The results from Phase 1 will be presented to expert panellists (target n = 12–15) who took part in Phase 1, alongside additionally recruited participants, with the aim of ensuring that 50% of panellists are service users. One round of voting will take place, with facilitated discussion.

Analysis

Analysis from the consensus exercise will be carried out and reported, with a descriptive summary of the recommendations that apply to service users, staff/professionals and carers, in addition to site-specific recommendations (strongly supported recommendations =  ≥ 80% Yes and < 20% No votes; fairly supported recommendations =  ≥ 70% Yes and < 20% No votes).

Coproduction of implementation resource

The results from the consensus development exercise will be discussed with the two advisory groups. Participants of the stakeholder workshops (Phase 1) and the consensus development exercise, and members of both advisory groups, will then be invited to a series of three workshops to co-produce the implementation resource. The implementation resource will compromise of documentation and trainings for service users, staff/professionals and carers/supporters on completion and use of ACDs/AS.

Between each of the three meetings, the research team will work with the advisory groups, the co-applicants and provider organisation colleagues: a videographer, a graphic designer, trainers, and informatics experts to create: training for mental health staff/professionals; material and a course for service users, carers/supporters and mental health staff/professionals and clinical records access in retrieving and viewing an ACD/AS during crisis. Documents and training materials will be edited following advice from the legal consultant.

Data analysis

Data from the consensus development exercise will be recorded, transcribed and analysed by the research team. The transcribed data will be analysed using framework analysis to identify the provisional results and recommendations for the implementation resource; using a framework will ensure that the most dominant recommendations are used for the creation of the implementation resource [36]. The data from the coproduction working groups will not be recorded but notes will be taken by a member of the research team based on the information gained from the working groups, and the feedback will be used to inform the following coproduction meetings and the PDSA Cycles (Phase 3).

Phase 3: Implementation – PDSA cycles Design

Phase 3 of the study will use Plan Do Study Act cycles (PDSA), a form of Quality Improvement (QI) methods to test and improve the implementation resource developed in Phase 2 with the aim of learning what further modifications will be needed, addressing objectives 5–7 [35, 38]. The cycles will be conducted monthly over a 6-month period and will comprise a review of data collected: before completing an ACD/AS; after completing an ACD/AS and monthly feedback from staff on the process of helping a service user make an ACD/AS (see Table 1). The training designed through Phases 1 and 2 will be delivered and ACDs/AS will be completed with participating service users using the process and documentation designed.

Table 1 Quantitative and qualitative data collection: measures, time points and sources Data collection

To maximise data collection, access to, honouring and review of ACD/AS there will be a variable follow-up period extending beyond the PDSA cycles, this will be dependent on when each participant is recruited. The follow up data will be collected over 2 months, leaving 2 months for analysis. Table 1 details the measures, time points and the sources for the data collection over the study period.

Analysis

Descriptive statistics on implementation outcomes and barriers will be reviewed at monthly staff meetings during the Phase 3 PDSA cycles, together with incidences for individual participants of use of acute services, incidents of violence or self-harm and detention under the Mental Health Act. At the end of the project implementation data will be used to estimate the costs of ACD production and to inform the implementation of the ACD/AS process across the National Health Service (NHS) mental health providers across boroughs in London, UK.

Descriptive statistics on questionnaires, fidelity tools and the rates of completing, accessing, honouring and reviewing AS/ACDs will be collected, with pre and post comparisons of the trust item being undertaken.

Project management

A core research team comprising the co-leads and contract research staff will meet weekly to progress study procedures. The whole research team will meet monthly to discuss updates from the core research team and input into study management. The project steering committee will help us engage policy audiences nationally, who will meet every 6 months to advise on the study processes with a view to future scale up and knowledge mobilisation.

Patient and public involvement

The staff advisory group will include staff who work across acute and community services in the study setting and will meet quarterly to advise on engagement at all stages of the study to help optimise the participation of staff and service users, this will be chaired by Professor Alan Simpson, a professor in Mental Health Nursing. The lived experience advisory group will comprise Black service users and carers of Black service users, and will be chaired by Steve Gilbert OBE, who has lived experience and will also meet quarterly to advise on recruitment and participation of service users at each study phase.

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