Transitions in the lives of adults with severe intellectual disability: an ecological life course perspective
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Date
31/07/2021Author
Jacobs, Paula Charlotta
Metadata
Abstract
Change is part of our life journey and we all experience different transitions throughout
our lives. However, people with intellectual disabilities often experience a lack of
control and involvement in transition planning and transition processes. Within the
current literature there is a focus on early transition experiences, such as people’s
school years, while adulthood remains a lesser researched chapter in the lives of
people with intellectual disabilities. Furthermore, most studies focus on those with mild
or moderate intellectual disability and people with severe or profound intellectual
disabilities are often excluded from research. In relation to those with severe or
profound intellectual disability, transition processes pose questions about decision-making capacity and how to facilitate involvement and participation.
A systematic review of the transition from school to adult services for young people
with severe intellectual disabilities highlighted the importance of a life-course
understanding to transitions, as well as highlighting gaps in relation to (1) the absence
of multiple perspectives, even though transition processes involve multiagency
decision-making, (2) a lack of involvement of young people and adults themselves
within the research process and (3) a lack of focus on transitions as processes that
operate across different ecological levels. Building on the identified gaps this thesis
presents three interlinked studies that explore transitions across people’s adult lives.
Namely, (1) the transition from school to adult services, (2) transitions within adult
services such as moving out of the family home and (3) transitions in old age.
Qualitative case study methodology was used in combination with approaches from
ethnography, life story research and framework analysis. The first two studies followed
six adults on their transition journeys and data collection involved observations,
document reviews and interviews with families and professionals involved in each
case. One of the main aims of my PhD was to involve people with severe intellectual
disabilities in the research process and it was hoped that through the use of different
data sources young people and adults would be more present in the research process
compared to previous studies. The third study explored transitions in old age through
interviews with social care professionals in two distinct social care settings, where
adults with intellectual disability and staff lived together within a life-sharing model.
The findings of my PhD confirm the value of a life course perspective and demonstrate
that transitions are complex processes that occur across, and are influenced by,
different systems. Additionally, my findings emphasise the importance to consider
relationships and support networks that are available to people with severe intellectual
disability within their adult lives when planning and supporting transitions. Questions
are raised in relation to the role of professionals and services in the lives of adults,
particularly once parents are no longer able to advocate on behalf of their children.
Furthermore, the need to reconceptualise participation from a relational and
interdependent perspective is stressed to facilitate the involvement of people with
severe intellectual disabilities within decision-making processes. Further research is
needed that explores the everyday life experiences of this particular group and that
includes people within the research process.