Date Presented 03/28/20
Adults with CP are experiencing physiological changes earlier than adults without CP. This study examines how these changes impact participation in occupation. Findings indicate that adults with CP experienced significant changes in routine, social networks, and identity and received little support for managing these changes. These findings are significant for OTs, who can support these adults and promote continued participation in occupation.
Primary Author and Speaker: Nancy Bagatell
Additional Authors and Speakers: Amanda Carrol
Contributing Authors: Dara Chan
PURPOSE: While cerebral palsy (CP) is considered a “non-progressive” disorder, there is growing evidence that adults with CP are living longer and experiencing age-related physiological changes earlier than adults without CP. These changes include pain, fatigue, musculoskeletal problems, and arthritis. Little attention has been given to the impact of these changes on occupation and participation in adults with cerebral palsy, especially during middle adulthood, a period of life characterized by engagement in community activities, family commitments, work, and leisure activities. Therefore, the purpose of this study is to explore how physiological changes impact participation in and performance of occupation in adults with cerebral palsy during middle adulthood.
DESIGN: This study draws on data collected as part of a larger mixed methods project aimed at understanding community integration in adults with cerebral palsy. Data from six adults in middle adulthood (ages 40-60), all of whom lived independently, were analyzed with attention paid to the impact of physiological changes on the lived occupational experiences of participants. Participants were recruited through data bases, medical clinics, and personal contacts, all were classified as Gross Motor Function Level 1 or 2, spoke English, and did not have intellectual impairments.
METHOD: Data were collected using structured interviews. Each interview was conducted after the participant finished a week-long data collection process involving carrying a GPS tracker. The interviews focused on the activities that occurred during the week, facilitators and barriers to participation, and psychological aspects of community integration, such as belonging. All interviews were face-to-face and lasted 45 – 60 minutes. Interviews were transcribed and analyzed using a multi-step approach. The team read transcripts, coded, and noted quotes of interest. During this initial analysis process, it became apparent that the occupational experiences of participants who were in middle adulthood were very different than the younger adults. Therefore, the interviews of these adults were analyzed separately using a consensus coding process. Individual life situations were taken into account during the analysis process thus themes were identified within and across participants.
RESULTS: Consistent with the literature, all of the participants noted accelerated physiological changes as they moved into middle adulthood. For most, these changes were not anticipated and were often inadequately addressed by medical professionals. These bodily changes had a significant impact on the participants’ occupational experiences and patterns of participation. Three themes emerged from the data: 1) changing bodies, changing routines; 2) changing bodies, changing social worlds; and 3) changing bodies, changing identities. These themes describe participants’ lived experiences of aging with CP and the impact of physiological changes on their everyday occupations.
CONCLUSION: Findings from this study illuminate the relationship between accelerated aging and occupation in adults with cerebral palsy in middle adulthood. New understandings of how adults with CP are aging are significant for occupational therapists. Occupational therapists must be aware of the physiological changes that occur for adults with cerebral palsy and how this impacts their participation to ensure that their clients are prepared for and adapt well to aging related changes. Occupational therapists can coach adults in middle adulthood to develop strategies to cope with their changing bodies and adjust their routines to promote continued participation in meaningful occupations.
References
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