Occupational Therapy Empowering Support Workers to Change How They Support People with Profound Intellectual and Multiple Disabilities to Engage in Activity

Abstract

AbstractPeople with profound intellectual and multiple disabilities may not always be well supported to engage meaningfully in activity at home, an injustice impacting on well‐being and quality of life. Research sought better understanding of how occupational therapists work to improve the quality of this support, in particular, how they encourage support workers and managers to adopt recommendations. A single, purposively selected, case of supporting engagement in activity at home was investigated using a critical ethnographic case study methodology from an interpretivist and social constructionist stance. An occupational therapist worked with five people with severe and profound learning disabilities and their support workers over one year. Data were collected using ethnographic methods (participant observation, interviews and document analysis) and analyzed using an emergent systematic strategy (formal coding and categorization, alongside intuitive and affective analysis) and NVivo qualitative data analysis software. The case's story (illustrated by an ethnographic vignette constructed from the data) highlights challenges encouraging others to follow recommendations as intended. It has two overarching themes: the impact of shifting support and leadership cultures; and characteristics of occupational therapy, seeking in particular to create and sustain cultural change by working with support workers in a collaborative and empowering way. To overcome the impacts of organizational culture on how support is given (thereby improving the quality of lives of people with profound intellectual disabilities) professionals need to collaborate with support workers. Occupational injustices they arguably may face, in particular risk of burnout where their roles are conflicting or ambiguous, may also need to be addressed. Implications are suggested for health and social care professionals working indirectly through support workers of people with profound intellectual disabilities (and others with high support needs) and for the education and training of these professionals.