Stories of ‘being’ together: Phase 2
Research type
Research Study
Full title
Stories of ‘being’ together: exploring and strengthening belonging with families with children with profound and multiple learning disabilities (PMLD) within their own communities. Phase 2
IRAS ID
347473
Contact name
Catherine de Haas
Contact email
Sponsor organisation
University of Southampton
Duration of Study in the UK
1 years, 9 months, 30 days
Research summary
This project is about how people with profound and multiple learning disabilities (PMLD) and their families experience their community including experiences of stigma, isolation, and belonging. Belonging is a human need, and the research considers how families create belonging to their communities.
The research is designed in two phases. I am seeking ethics approval for phase 2. In phase 1, I am having focus group-type conversations with a group of families of people with PMLD. Mothers, fathers, siblings, and friends are contributing data. These are all information rich people. Family members who are adults with PMLD are not involved in these conversations in phase 1.
The second phase of the research considers community from the perspective of persons with PMLD by spending participant observation time with them in their daily lives. People with PMLD are nonverbal but can communicate in idiosyncratic non-symbolic ways. I will pay attention to how the people with PMLD are experiencing their communities by being aware of their ways of being in the world in particular their mood, actions, and reactions. I will use my senses to follow what is important to them in each moment. Further conversations with families and allies about how the person with PMLD is experiencing their communities, will continue in phase 2. By allies I refer to people who will have [I mean other people who] known the people with PMLD for at least 2 years [well], and care about their welfare. Everyone’s knowledge (implicit or explicit) will be equally valued (see A62 for more explanation). I will return from the field with non-verbal and verbal data in the form of photos, and audio [and video] recordings, field notes, reflective journal entries and artifacts created with a wide variety of people. I will look for stories, which answer my research question (see A13 for a more detailed explanation of my analysis).REC name
Social Care REC
REC reference
25/IEC08/0023
Date of REC Opinion
2 Sep 2025
REC opinion
Further Information Favourable Opinion