Perceptions of ageing and future aspirations by people with intellectual disability: a grounded theory study using photo-elicitation

Abstract

Internationally, 1 per cent of the general population are living with an intellectual disability and life expectancy is increasing in line with global trends. The majority of people with an intellectual disability live with family. This represents a growing and largely 'hidden' population who have, or will have, additional needs as they and their family age. There is limited research about what is important for people with intellectual disability when thinking about getting older. This article reports on a study which explored the concept of ageing and future aspirations with 19 people living with an intellectual disability, aged 37-58 years of age (mean 48 years) and living with someone they identify as family. Using Charmaz's constructivist grounded theory approach and photo-elicitation, constant comparative analysis generated four themes: reciprocating relationships, emerging (in)dependence, configuring ageing and entertaining possibilities. As part of the interview process, photo-elicitation facilitated the expression of associations and perspectives about ageing and conceptualising the future for participants. The findings demonstrate the engagement of people with intellectual disabilities in research and provided unique insights into both their experiences and perspectives on ageing in the context of family. The need for greater flexibility in service planning and delivery are identified, alongside ensuring the meaningful inclusion of people with intellectual disability in decision-making about their own lives as they age.