Abstract
Background:
Day-services provide Monday-Friday support and are often accessed by autistic people with severe or profound learning disabilities or complex needs and people with severe and profound learning disabilities. Despite their significance, day-service support standards are often poor, and services struggle to include the voices of service members in support planning and service development. Our previous research highlighted views and experiences important to members in day-services, and we suggested it was important for day-services to focus on these views and experiences in decisions made about support. We co-produced a tool, The Day-Doc, to support day-services to do this. In this paper, we describe the framework we developed for The Day-Doc to help day-services focus on views and experiences important to their members.
Methods:
In this study, we sought to explore the views and experiences of service members through the perspectives of community members and day-service staff.
We undertook qualitative research involving interviews, workshops and focus groups with day-service staff, people with learning disabilities, autistic people, and family members. Data were analysed through Template Analysis.
Results:
Participants defined four strands of views and experiences:
Place and Planning: Referring to service members developing environmental customs, having a sense of ownership over areas, and developing fulfilling routines. Being Yourself: Referring to service members feeling free to act and behave in ways important to them, and for having their views and preferences valued and responded to. Rest and Stressors: Referring to situations and environments that engender experiences of stress and the practices that alleviate this. Community: Referring to having valued roles within day-service communities and having a say in their priorities and aims.
Conclusion:
The developed framework shows potential for supporting day-services to better include the views and experiences of service members. We discuss how we aim to realise this through The Day-Doc tool.
Community Brief
Why is this an important issue?
This research was part of study to co-produce The Day-Doc, a tool to help day-services respond to the views and experiences of their service members, in particular, people with a diagnosis of:
autism and severe/profound learning disability. autism and complex needs who communicate through vocalisations and body language. severe/profound learning disability (but not autism).
Across Europe and North America, day-services provide Monday-Friday support to this group (who we refer to as ‘The Day-Doc cohort’). Despite their importance, day-service standards are often poor. A key issue is that day-services struggle to include the views and experiences of the Day-Doc cohort in decisions about their support. There are no tools or approaches to support them to do this.
What was the purpose of this study?
In this paper, we report on the development of a framework for The Day-Doc which outlines views and experiences important to its cohort. The framework stems from research we did with this group in a UK-based day-service. It is based on a theory called at-homeness.
What did the researchers do?
We did interviews, focus groups and workshops with autistic people, people with learning disabilities, family members and day-service staff to develop at-homeness into a framework relevant to day-service contexts. We also explored if they thought the framework would be important to The Day-Doc cohort. Our analysis involved a Template Analysis approach.
What were the results of the study?
The co-production led to a framework containing four strands which participants thought would be important to the Day-Doc cohort:
Place and Planning, in which participants highlighted how the cohort might view environmental preferences and ownership of service spaces as significant. Being Yourself, in which participants discussed the potential importance of the cohort experiencing the freedom to act and behave in ways important to them. Rest and Stressors, in which participants highlighted how cohort would likely value practices that reduce experiences of stress or discomfort. Community, in which participants argued for the importance of the cohort having significant and valued roles in their day-services.
What do these findings add to what was already known?
These findings are the first to categorise views and experiences potentially important for service members in day-services.
What are potential weaknesses in the study?
We first identified the at-homeness framework as being important in a single UK-based day-service, so it may not be as relevant in other day-service contexts. We suggest this should be explored with further day-services and their members.
How will these findings help autistic adults now or in the future?
The framework we developed helps services focus in on what’s important to The Day-Doc cohort. The Day-Doc was co-produced to help day-services document and respond to this group’s views and experiences. This tool could benefit service members across their life-course, helping to guide key life transitions, and enabling their voices to be represented within day-service provision.
Get full access to this article
View all access options for this article.