Emerging adults with cerebral palsy : their stories from their perspective

![CDATA[Background: Emerging adulthood has been identified as a unique developmental stage within developed countries. Generally associated with ages 18–25, emerging adulthood is seen as a time of identity exploration, instability, self focus, a sense of feeling in-between, and possibilities. To date there has been little research investigating the experience of emerging adulthood for people with cerebral palsy (CP). It is suggested they may experience challenges in accessing education and employment, social activities, relationships, healthcare and other services. Objectives: This study aimed to investigate the experience of emerging adulthood for young people with CP from their own perspective. Design: A qualitative, narrative inquiry. Participants/Setting: The participants were 18 volunteers with CP aged 18–25 years who lived in New SouthWales, Australia (mean age 21 years; 11 male, seven female; 11 metropolitan, five regional, two rural). Severity (GMFCS: I = 2; II = 5; III = 7; IV = 1; V = 3) and type of cerebral palsy varied. Materials/Methods: Multiple in-depth unstructured interviews were conducted with each participant using face-to-face (n = 43) and/or email (n = 42) interviews to explore their experience of emerging adulthood. Interviews continued until each participant felt they had ‘told their story’. The narrative data was analysed using paradigmatic analysis. Results: A number of archetypal narratives were revealed. Each reflected the five features of the theory of emerging adulthood. Identity exploration, instability, self focus, feeling in-between and possibilities were apparent in all narratives, but to varying extents. The stories of emerging adults with CP were moderated by factors best described through the International Classification of Functioning, Disability and Health (ICF). Narratives were dominated by the environmental domains of the ICF, in particular societal attitudes, access, support, services and systems. Activity and participation domains and personal factors also featured in their stories. Body functions and structures were rarely mentioned. Conclusions/Clinical Implications: Archetypal narratives of young people with cerebral palsy feature the five attributes of emerging adulthood, as experienced by their peers without disabilities. However their experience is affected by factors that can be described through the lens of the ICF, most notably environmental factors. The theories of emerging adulthood and the ICF can thus provide a framework for considering issues that may be experienced by young people with CP. This study reinforces the influence of environmental factors on experience and emphasises that emerging adults with CP continue to face many societal barriers to full participation and inclusion.]]