An Evaluation of Care (Education) and Treatment Reviews for People With Learning Disabilities and Autistic People

Aim To undertake an evaluation of C(E)TRs using mixed methods across four stages with five work packages with children and adults with learning disabilities and autistic children and adults across a range of inpatient settings, including those in the community who receive a C(E)TR who are at risk of admission

Objectives

1. To understand the experiences of all stakeholders, including people with learning disabilities and autistic people and their families, when taking part in C(E)TRs including descriptions of the barriers and facilitators to genuine participation and the use of augmentative and alternative communication, and options for improvement. 2. To understand how C(E)TRs are being carried out in practice with a range of people with learning disabilities and autistic people across different settings, including those at risk of admission who are in the community. 3. To understand how C(E)TRs may be changing care pathways, improving outcomes, potentially preventing admission or promoting discharge, their possible cost implications, and how this is different from existing methods for reviewing care, and to make recommendations for improvement. 4. To publish good practice guidance inclusive of practical resources and tools for conducting C(E)TRs and outcome implementation, including how to promote inclusion and participation for people with learning disabilities and autistic people

Research questions

1. What are the experiences of people with learning disabilities and autistic people, families, C(E)TR panel members and a range of health and social care professionals when taking part in C(E)TRs? 2. How are experts by experience being included and supported to take part in C(E)TRs? What are the barriers and facilitators to participation and how can their participation be promoted? 3. How are C(E)TRs being carried out in practice with different groups (e.g., children, adults, autistic adults without learning disabilities) and in different settings (e.g., assessment and treatment units, secure units, acute mental health wards, inpatient units for children)? 4. What impact do C(E)TRs have upon care-pathways, and how are recommendations and outcomes implemented and monitored? 5. What barriers and facilitators to discharge are identified by C(E)TRs and how are they overcome or addressed by care teams? 6. How are C(E)TRs different, similar to, or integrated with existing methods for reviewing care (e.g., Care Programme Approach, Child Protection Conferences, Extraordinary Care Review Meetings)? 7. How are C(E)TRs structured and managed to support inclusion, and what adjustments and supports aid participation (e.g., augmentative and alternative communication) of people with learning disabilities and autistic people, and how can these be improved? 8. Is there evidence that people with learning disabilities and autistic people who are receiving a C(E)TR are being empowered as a consequence of C(E)TRs? What are the barriers and facilitators to empowerment and how can this be promoted? 9. Is there a relationship between the skill mix of a C(E)TR panel and the recommendations or outcomes made and are they implemented and how? 10. Are C(E)TRs associated with reducing inpatient numbers and what effect do they have on costs? 11. What are likely resource implications of C(E)TR and how might they differ between different types of individuals?

Study design This research has four stages comprising five work packages using mixed methods. Lived Experience Advisory Panels (LEAPs) will co-produce study materials and will be actively engaged throughout each stage and all work packages. Initially, the investigators will co-develop a logic model informed by existing guidance and other literature to describe C(E)TR key activities, mechanisms of change, and outcomes which will be used to inform the choice of survey and interview questions and analysis within Stages 1 and 2, the analytic strategy within Stage 3, and the data triangulation within Stage 4. A logic model will be developed in collaboration with Lived Experience Advisory Panels (LEAPs) and the Study Management Group inclusive of C(E)TR panel members. The investigators will also seek direct feedback from lead staff in NHS England who lead C(E)TR policy.

Within Stage 1, national surveys) will be circulated to people with learning disabilities and autistic people, including children and young people, families and carers, C(E)TR panel members, and health and social care professionals. Surveys will ask about their experiences of taking part in C(E)TRs and also gather data to inform estimates of the likely cost of undertaking C(E)TRS. The investigators will use adapted methods, led by expert partners and with LEAP input to capture the voice of younger children and those with moderate-severe learning disabilities and those with associated communication difficulties including children and young people whose views and experiences are often not collected.

Within Stage 2, the investigators will attend C(E)TRs, and CPA meetings to track individual progress over time, collect naturalistic data from the meetings, and undertake semi-structured interviews with attendees. The investigators will undertake a linguistic analysis of the data to determine the relative contributions of different individuals to the decision-making process, and the investigators will develop a descriptive temporal pathway model of C(E)TRs process over time and determine how C(E)TRs affect care pathways.

In Stage 3, the investigators will model relationships between C(E)TRs and numbers of admissions, discharges, total number of inpatients, types of inpatient service, consider cost-implications and length of stay over time using anonymised data available from NHS Digital for children and adults.

Within the final stage, Stage 4, the investigators will combine their quantitative and qualitative data to generate conclusions and develop and publish good practice guidance and practical resources and tools (e.g., videos, easy to read checklists, guides to promote good communication) for C(E)TRs including outlining best practice for maximising participation and engagement

Participant selection Stage 1 (Work Package 1) The survey sample will include key sub-groups of the population of autistic people, people with learning disabilities, and their carers and family members. The investigators will ensure this by explicitly sampling younger and older autistic people and younger and older people with learning disabilities nationally who are receiving a service from a variety of services including inpatient and community services, forensic services, services for children and adolescents, acute and non-specialist services, and community learning disabilities teams. The investigators will capture data about protected characteristics including the nature and degree of disability, ethnicity, age, and sex, and if needed, revise the recruitment strategy to help ensure that the final sample includes participants from key sub-groups.

Children aged 5 and above (eligible for entry to school Key Stage 1) will be included because evidence suggests rarely very young autistic children or children with learning disabilities are at risk of admission or are admitted to a specialist psychiatric hospital. The investigators anticipate that younger children will be unable to complete the survey and will make use of a highly structured approach to capture their voice when possible. The study needs to include the full range of individuals that may have experience of a C(E)TR, and will intentionally sample from ethnically diverse regions (e.g., urban areas with large diverse communities) to help ensure that the sample is suitable to examine associations with ethnicity. Study materials will be available in different languages and interviews can be completed with a translator.

The investigators will make appropriate adaptations to meet the communication needs of people with learning disabilities or autistic people (e.g., easier-to-read text, pictorial prompts, having a supporter present, embedded text to speech reader, manual signing) including offering people the option of completing the survey together with a researcher either online or in person. The investigators will include a version for older children and young people which can be completed with additional support. It is likely the case that some older children and teenagers with mild learning disabilities will be able to complete an online version of the survey with limited support. However, this will likely not be the case for some, including younger children. For this group, who are not able to complete a survey, the option of completing a Talking Mats® interview will be offered instead. For those with no or limited vision, further adaptations will be made (e.g., visually enhanced rating scale with optional tactile markers for completion in person, and/or embedded text-to-speech functions for online completion).

Running in parallel with the surveys, the investigators will complete structured interviews with a minimum of 25 people with learning disabilities and autistic people who have moderate to severe learning disabilities including children and adolescents with moderate to severe learning disabilities. These participants will be in addition to the minimum of 150 people with learning disabilities or autistic people who will complete the survey. Those with moderate to severe learning disabilities are likely unable to take part in the survey except through the participation of their carers. To capture their voice directly, the investigators will make use of augmentative and alternative communication methods to support the communication of participants as appropriate to their needs, such as Talking Mats® (www.talkingmats.com) and manual sign support (https://makaton.org). These participants are likely to lack capacity to make a decision about whether they wish to take part in the survey.

Stage 1 (Work Package 2) The sample will include key sub-groups of the C(E)TR workforce and health and social care professionals. The study will recruit participants from both urban and rural areas within England across the full range of professionals who are involved in C(E)TRs. This includes paid and unpaid care staff along with professional staff and Experts by Experience (EbEs). Data about protected characteristics including disability, ethnicity, age, and sex will be captured. If needed, the recruitment strategy will be revised to ensure that the final sample contains sufficient data from key sub-groups. If required, materials will be translated and associated costs have been included. The investigators will provide participants with the option to complete the survey with a researcher, which may be helpful for EbEs, and will help ensure full participation.

Stage 2 (Work Package 3) The study will recruit potential participants from across England within three broad regions: (a) eastern, (b) southeastern and southwestern, and (c) midlands and northern incorporating urban and rural locations across a range of inpatient services to ensure that the sample includes key sub-groups of the wider population of autistic people and people with learning disabilities.

Cases will be purposively chosen to include key sub-groups of the wider population of autistic people and people with learning disabilities. The sample will be inclusive of (1) children and adults, (2) autistic children and adults, and children and adults with learning disabilities including those with mild, moderate and severe learning disabilities, and (3) those from specialist assessment and treatment inpatient services, forensic services, and generic inpatient mental health services for both children and adults. Data on protected characteristics including disability, sex, and ethnicity will be collected. The investigators will make use of translators and t