Developing and applying new autistic-led standards for social care environments: a participatory action research study of Ethical Quality Autistic-Led Support (EQUALS)

Numerous reviews have highlighted that residential social care and supported living services are currently failing autistic adults. Best practice standards often remain unmet, placement breakdown is common, and abuse is unacceptably frequent.

The National Autistic Taskforce s Independent Guide to Quality Care for Autistic People (NAT Guide) is the only independent, autistic-authored resource developed for autistic people of all ages and across the autistic spectrum.

It sets out a way forward towards improved care and quality of life, by shifting the focus from behaviour management to supportive relational understanding.

The guide has been widely endorsed by key national organisations; the need now is for research evidence to inform meaningful and effective implementation in practice settings.

The EQUALS study aims to support services to put the NAT Guide into practice by developing a usable and accessible implementation framework.

The study objectives are therefore to explore in-depth the implementation of the NAT Guide in two relevant settings, to answer the research questions: Is EQUALS feasible and acceptable to implement in practice - and if not, what has to change?

What resources (staff training, induction materials, record forms, procedures) are needed to implement EQUALS in residential and supported living services?

What does the implementation of EQUALS in practice look and feel like for supported individuals, care staff and managers? What are the perceived benefits and challenges of implementation, according to each of these groups?

Could EQUALS lead to better experiences and outcomes for both supported individuals and carers – and if not, what has to change?

The 24-month study will work with two social care providers of supported living and residential care using participatory action research methods, informed by programme theory drawn from the NAT Guide, to learn about the processes and impact of implementation in services.

Applying 3-4 iterations of the participatory research cycle over 14 months, researchers, residents and service staff working in participatory action groups of 5-8 members will: (i) identify targets for local change mapped on to the NAT Guide; (ii) co-create solutions featuring new materials and procedures, and (iii) evaluate their impact.

Appropriate evaluation measures will be identified for the jointly selected targets, but are expected to include service records, quick-response surveys, observations and participant report, wellbeing measures and interview data.

Iterative reflection on the challenges and facilitators of implementation will run throughout the process, and a 10-week period of whole-service reflection at the close of the iterative cycle will enable the consolidation of co-produced learning.

Autistic expertise will be central throughout the study, within the research team, steering group, advisory panel and in the participatory action groups.

The project will generate the co-produced EQUALS implementation framework, incorporating guidelines, policy and procedural templates, training materials and service resources.

Building on the team s strong links with social care and health organisations, this will form a valuable tool for adoption of the NAT Guide among services and lay foundations for an evidence-base to inform EQUALS implementation across a range of settings.