Occupational therapy supporting people with profound intellectual disabilities to engage in occupation at home

This research explored the nature of engagement in occupation (meaningful activity) and the different levels at which people with profound intellectual and multiple disabilities may engage. Research suggests that many are poorly supported to do this meaningfully at home. When through circumstances beyond their control, people do very little, occupational injustice arguably results, impacting on physical and mental wellbeing and quality of life.

Research evidence and theory from occupational therapy, occupational science and active support underpins support for people to engage in occupations at home. Occupational therapists claim to support people to do this in complex situations, but exactly how they do it and whether it differs from other methods evidenced in the literature remains unclear. Better understanding is needed of how to support people to engage in ways that are authentic and meaningful.

Using a qualitative case study methodology from an interpretivist and social constructionist stance and multiple ethnographic methods (participant observation, interviews and document analysis), a single purposively selected case was explored over the course of one year. In this Esther, an occupational therapist, worked with Matt, Steve, Becky, Jane and Harold (all names are pseudonyms), five people with severe and profound intellectual disabilities and their support workers to increase their engagement in Cavendish House (the residential home where they lived).

Data were analysed systematically using an emergent coding strategy, with NVivo qualitative data analysis software to manage the process. Various formal first and second cycle coding and categorising procedures were used, alongside more intuitive and affective analysis (e.g. concept mapping).

Project aims

The project aims were

  • To investigate and provide a rich description and analysis of the practice of an occupational therapist interacting with and supporting people with profound intellectual disabilities to engage in their occupations.
  • To establish similarities and differences between her approaches to supporting engagement and others described in the literature.
  • To generate professional knowledge, understanding and theory which could inform practice, including occupational therapists’ consultancy role with those who support people with intellectual disabilities on a day to day basis.

Project findings and impact

The case’s story has two overarching themes: the impact of shifting support and leadership cultures on engagement and characteristics of occupational therapy, which: aimed to create and sustain cultural change; had a particular understanding of authentic occupational engagement; and sought to work with the staff team in a collaborative and empowering way. The case is brought to life using three vignettes, constructed from field notes and interview transcripts.

The findings develop understanding in the following areas:

  • how creating stories using narrative reasoning can propel occupational therapy towards a hoped for ending;
  • that authentic engagement in occupation is possible for those with profound intellectual disabilities and essentially means engaging in co-occupations at a sensory level, without them necessarily physically doing anything;
  • how occupational therapy sought to address occupational injustices not only for those with profound intellectual disabilities, but also for those supporting them, for whom role ambiguity risked burnout; and
  • how occupational therapy sought to sustain a different way of supporting engagement by collaborating with and empowering the staff team.

In conclusion, five “petite generalisations” (credibly transferable when contextualised to the case) are suggested:

  1. organisational culture may impact on whether people are supported effectively to engage in occupation;
  2. recognising the level at which people can engage in occupation seems necessary for support to engage authentically;
  3.  independence”, “choice” and “personalisation” are everyday words, but how they are meaningfully relevant to people may not be fully understood;
  4. occupational therapists should focus on facilitating sustained cultural change in support of occupational engagement at home;
  5. narrative reasoning seems to help propel occupational therapy interventions towards hoped for endings and may be facilitated by opportunities for reflection. 

Implications are suggested for occupational therapists and others working with people with profound intellectual disabilities and others with high support needs and for occupational therapy education. 

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Research team

(supervised by Dr Jon Wright and Dr Huguette Comerasamy)

 

Output

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Partners