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Perceptions of ageing and future aspirations by people with intellectual disability: a grounded theory study using photo-elicitation
- Authors:
- TRIP Henrietta, WHITEHEAD Lisa, CROWE Marie
- Journal article citation:
- Ageing and Society, 40(5), 2020, pp.966-983.
- Publisher:
- Cambridge University Press
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. (Edited publisher abstract)
"I'm still here": exploring what matters to people with intellectual disability during advance care planning
- Authors:
- McKENZIE Nicola, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 30(6), 2017, pp.1089-1098.
- Publisher:
- Wiley
Background: This study sought to identify, from the perspective of people with intellectual disabilities and life limiting conditions, the factors that strengthened and inhibited their Advance Care Planning. Methods: This in depth qualitative study explored the experiences of four people with intellectual disability and life limiting conditions, through interviews and documentation reviews. Results: There was strong agreement across all participants about what positively influenced Advance Care Planning, namely; going at my pace; supporting me to make my own choices; adapting the process to suit me, and, most importantly; continuing to support and plan the life I'm still living. With the exception of being comfortable/skilled in end-of-life support, the skills required of facilitators were similar to those required for all forms of person-centred planning. Conclusion: The findings are encouraging and demonstrate that Advance Care Planning is a useful tool in ensuring that people with intellectual disability have control and choice over their lives, right to the end. (Publisher abstract)
Women with intellectual disabilities: finding a place in the world
- Editors:
- TRAUSTADOTTIR Rannveig, JOHNSON Kelley
- Publisher:
- Jessica Kingsley
- Publication year:
- 2000
- Pagination:
- 303p.,bibliog.
- Place of publication:
- London
Explores issues affecting the lives of women with learning difficulties around the world, looking at different aspects of life, including work, family, relationships and community involvement. Based on the experiences of women with and without learning difficulties.
Perceptions of change advantage and quality of life for people with intellectual disability who left a long stay institution to live in the community
- Authors:
- O'BRIEN Patricia, et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 26(1), March 2001, pp.67-82.
- Publisher:
- Taylor and Francis
In 1988 the New Zealand government contracted a community-based not for profit agency to provide residential, employment and family support services for 61 people with intellectual disability living in a psychiatric hospital. These people, on average, had been living within the hospital for 22 years. Nine years following the move, 54 of the original 61 people were located in community residential homes. Interviews were conducted with staff and family members to ascertain their perceptions of the effect of the move. Nine of the 54 people who moved had sufficient language to provide information on the outcomes of the transition for them personally. Overall, all informants regarded the move as positive. They reported improvements in daily living skills, social skills and quality of life. Implications of the findings for future research and further understanding of the effects of deinstitutionalisation are identified.