|dc.description.abstract||Background: This thesis contains two elements: the first is a systematic review
examining some of the determinants of quality of life for people with intellectual
disability. Understanding these determinants can drive improvement at both
individual and societal level. Yet there are a number of quality of life measures which
might confound findings between studies. This systematic review sought to identify
factors that influence quality of life using self-report on one measure developed for
use with people with intellectual disability, the ‘Quality of Life Questionnaire’
(Schalock & Keith 1993).
The second element is an empirical study that aims to explore the lived experience of
aging for older adults with intellectual disability. There are noted differences between
people with and without disability as they grow older, for example in terms of health
and social opportunity. Previous studies have not consistently sought the experience
of the people with intellectual disability themselves, or have used participants not
traditionally considered older adults. This study aims to address gaps and further our
knowledge in the lived experience of getting older for older adults with intellectual
Method: Within the systematic review a systematic search of relevant studies to 20th
January 2015 was completed using a specified inclusion criteria, yielding 13 peerreviewed
journal articles. These were scored on 11-point purpose-designed quality
For the empirical study semi-structured interviews were completed with ten
participants with intellectual disability (age range 60 – 74 years, five female) regarding
their understanding of getting older and their experience of ageing. Nine transcribed
interviews were analysed using interpretative phenomenological analysis.
Results: The systematic review found that living in a semi-independent environment
or an urban setting, being employed, being involved in domestic and community
activities, receiving social support and possessing social skills and self-determination
were factors that improved quality of life for people with intellectual disability.
Three major themes emerged from the empirical study data when participants
discussed getting older: ‘Not changed by ageing’, ‘Thinking about the ageing process’
and ‘What happens when getting older’. Participants tended to feel that they were still
the same due to continuation of the same activities and social support. They
demonstrated confusion in the ageing process, considering the process ‘inevitable’ but
insignificant, although also recognising some changes associated with the process.
They discussed their views about what they considered happens when people get older,
which tended to be stereotypical and often negative. However they also reflected on
their own experiences and how they had changed.
Discussion: The methodological quality of the studies reviewed was found to be
generally low due to a range of factors including study design, measurement of
intellectual disability and reporting of sample demographics and results and therefore
conclusions should be treated with caution. This highlights a need for further research
with people with intellectual disability of a higher methodological quality.
The empirical study is discussed in reference to previous research and gerontological
theories of ageing. The study highlighted that staff or family did not broadly discuss
ageing with participants and their views often changed over the course of the
interviews from more physical and negative aspects to how ageing impacted them.
This research demonstrated older adults with intellectual disability do have opinions
on ageing. Further exploration with people with intellectual disability on this topic is
to be encouraged in the future to develop a more balanced view.||en
|dc.publisher||The University of Edinburgh||en
|dc.rights||Attribution-NonCommercial-ShareAlike 4.0 International||en
|dc.subject||Interpretative Phenomenological Analysis||en
|dc.title||Understanding and experiencing ageing: the perspectives of older people with intellectual disabilities||en
|dc.type||Thesis or Dissertation||en
|dc.type.qualificationname||DClinPsychol Doctor of Clinical Psychology||en