A076 The Lived Experience in Germany

1. The lived experience during transition
from adolescence to adulthood for young
people with cerebral palsy
Paul Boyle
Senior Lecturer

2. What I will cover:
•Background
•What am I trying to find out
•Research design

3. Background
111,000 adults with cerebral palsy in the United Kingdom
Expectations increasing regarding social inclusion and quality of life
‘Growing up’ - completing education, starting employment, relationships,
becoming increasingly independent (Reddihough et al, 2013)
Disabled young people experience a difficult transition into adulthood
(Scope, 2014)

4. Living with cerebral palsy
Achieve less in education, more likely to be single, unemployed, live with
parents, have limited finances (Reddihough et al, 2013)
Experience fear, sadness, abandonment (Larivière-Bastien et al, 2013)
Not ready for transition at 17-18 years (Björquist et al, 2014)
Accepting less than expected (McLaughlin Carroll, 2015)

5. What am I trying to find out?
Ambition, aspiration, social inclusion and low expectations
What does this mean – now and in the future?
Growing up, and ‘becoming’ an adult
Daily reality of living with cerebral palsy

6. Research aim
Understand what life is like for young people living with cerebral
palsy during the transition from adolescence to adulthood so as to
find out about how to promote positive life opportunities
Research question
What is the experience of transitioning from adolescence to
adulthood for young people with cerebral palsy?
What do you think?

7. Research design
Phenomenon of living with disability ever-more apparent
Making sense of the world - crucial that experience is accounted for
Qualitative methodology - phenomenology and the lived experience

8. Descriptive phenomenology (Edmund Husserl)
Experience can be studied scientifically as the mind directs itself
towards objects - intentionality
Attitudes and beliefs suspended - epoché or bracketing
Phenomenological reduction will mitigate against preconceptions
aiding the illumination of the essence of the experience
(Moran, 2000)

9. Interpretive hermeneutic phenomenology (Martin Heidegger)
‘Dasein’ - ‘being-in-the-world’
Interpretivist stance to throw light onto something
Focus on practical activities / relationships
Worldly perspective - thrown into a world of objects and relationships
Interpretation of people’s meaning-making (Moran, 2000)

10. What do you think?
p.boyle@brighton.ac.uk
Research question
What is the experience of transitioning from adolescence to
adulthood for young people with cerebral palsy?

11. References
Björquist E, Nordmark E, Hallström I (2014) Living in transition – the experiences of health and well-being and the needs of adolescents with
cerebral palsy. Child: Care, Health and Development 41(2): 258-265.
Larivière-Bastien D, Bell E, Majnemer A, Shevell M, Racine E (2013) Perspectives of young adults with cerebral palsy on transitioning from
pediatric to adult healthcare systems. Seminars in Pediatric Neurology 20: 154-159.
McLaughlin Carroll E (2015) Health care transition experiences of young adults with cerebral palsy. Journal of Pediatric Nursing 30: 157-164.
Moran D (2000) Introduction to Phenomenology. London: Routledge.
Reddihough DS, Jiang B, Lanigan A, Reid SM, Walstab JE, Davis E (2013) Social outcomes of young adults with cerebral palsy. Journal of
Intellectual & Developmental Disability 38(3): 215-222.
Scope (2014) Fulfilling Family Lives. Available at http://www.scope.org.uk/Scope/media/Documents/About%20us/10107-statistics-
infographics-v2.pdf (accessed 31/05/16)