Drawing on the author's experience carrying out qualitative research in the field of occupational therapy with people with intellectual disabilities, this article explores ethical issues inherent in ethnographic and case study research, where study designs can evolve over time. Such qualitative methodologies can enable deep understanding of research topics, but detailed description of methods and of the range of potential experiences participants may have is necessary to ensure that they are fully informed and ethics committees satisfied. Thorough consideration is required of ethical issues related to topic relevance and design, recruitment, collection of data and portrayal of participants in the eventual case report. The article illustrates a way in which research of this type can be explained and justified, including how recruitment can be achieved of participants likely to lack capacity to consent to participation themselves
People 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.
Introduction:
Health and social care agencies are encouraged to provide child-centred services that respond to needs that change over time. There is evidence that occupational therapists are concerned about how to respond to issues of harmful behaviour in the home environment whilst promoting child development. This study explored occupational therapists' experiences regarding harmful behaviour and the safety of children with Autistic Spectrum Disorder.
Method:
Seven community occupational therapists, employed by a local authority and working in social care, participated in two focus groups.
Findings:
An inductive thematic analysis identified five broad themes. These were: ‘assessment is complex’, ‘child development and the home environment’, ‘importance of family-centred services’, ‘the need for additional services’, and ‘management of the disabled facilities grant’.
Conclusion:
Local authority occupational therapists prioritize supporting families to keep children safe. It is necessary to adapt the home to reduce hazards and for alternative interventions to be made available to address behavioural and sensory needs. Services such as sensory integration are lacking, and where they are available access is difficult. It is common for disabled facilities grants to fund adaptations; however, management of grants could be improved to meet the needs of these children and their families.
ADL tasks in the NUW were completed more efficiently with no loss in quality of motor and process skills performance. This suggests that the NUW is a viable alternative to current one arm drive provision.
As these constructs seem reflective of important components of teamwork, a "line-of-argument" is proposed that it could be helpful for professionals to view themselves as part of a "team" with support workers.
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