Quality of life, psychological wellbeing and distress in those with an intellectual disability

Literature review: The present study is a systematic literature review of findings from 16 studies investigating the quality of life of adults with an intellectual disability. It was concluded that those with intellectual disability experience a lower quality of life than other groups. The interrater reliability between self-reports and proxy reports were found to be fair. However, proxies were found to consistently underestimate quality of life for individuals with intellectual disability, and physical wellbeing was identified as a problematic domain for agreement between self-report and proxy reports. Employment and good social or family supports emerged as factors most important to good quality of life. Those with severe or profound intellectual disability were under represented in the literature. Clinical implications and recommendations for future research are discussed.
Empirical report: There is limited research into how psychological wellbeing and distress are identified in those with a severe or profound intellectual disability. Therefore, the present study aimed to explore carer’s view on how these inner emotional states are identified in those they care for. A qualitative exploratory design was used and 18 paid carers and family members participated in semi-structured interviews. Analysis of transcripts yielded eight superordinate themes relating to: relationship; physical contact; body; vocalisation, things that affect their emotions; facial expression; unknown and telling their story. Agreement between the dyads was fair. Clinical implications and recommendations for future research are outlined.