The Lived Experience of People With Intellectual Disability in Community Settings: A Comparison of Self-Reports and Staff Reports

Abstract

Background

There is a need for more qualitative research focusing on the lived experiences of people with an intellectual disability and a better understanding of how these experiences align with other voices in their lives, such as family and support staff.

Methods

In this qualitative study, we asked people with an intellectual disability (N = 87) and their support workers (N = 120) similar questions about factors contributing positively and negatively to the lives of those with an intellectual disability. We conducted a thematic analysis combining data across respondents, while also identifying areas of similarities and divergence between self-reports and staff reports. The setting was community-supported living schemes and group homes in the UK.

Findings

Qualitative themes, representing key positive and negative factors in the lives of people with an intellectual disability, were (1) Positive impact of social relationships on well-being, (2) positive impact of participation and roles on self-determination and well-being and (3) negative impacts of difficulties affecting day-to-day life. These three themes are all linked to a broader sense of identity, purpose and self-determination. These were broadly consistent across self-reports and staff reports, although there were some points of divergence, particularly in Theme 3.

Conclusions

These findings reveal areas that are key to maximising the quality of life of people with an intellectual disability and suggest that self-reports and proxy reports can sometimes offer unique perspectives. Our findings can be used to ensure that the priorities of people with an intellectual disability are considered in their care.