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The coping strategies of adults aging with cerebral palsy Horsman, Marylyn

Abstract

Purpose: To investigate the coping strategies of adults with cerebral palsy (CP) who were growing older and experiencing changes in their functional abilities. Methods: Qualitative descriptive phenomenology was used. Antonovsky’s concepts of sense of coherence (SOC) were applied to examine the coping approaches of adults growing older with CP. Data from 12 participants were gathered through in-depth, semi-structured interviews. Results: Three themes emerged from the analysis: Awareness, Acceptance and Action reflects strategies of how participants gain awareness, become better able to accept what they are experiencing and then position themselves to take appropriate actions; Negotiating One’s World depicts experiences of empowerment, disempowerment and self-responsibility; and Independence is Everything portrays what being autonomous means to participants. Despite the fact that their physical abilities seemed to deteriorate as they grew older, most participants described improvements in psychosocial aspects of their lives and were able to maintain SOC while growing older with CP. Discussion: Based on the interview findings, participants had not been adequately informed of the possibility of experiencing secondary conditions, e.g., pain and fatigue, as they grew older. Pediatric therapy programs have not adequately anticipated challenges that may occur in adulthood. Greater preventive healthcare is called for. All healthcare providers need to be aware of the unique needs of adults with CP. These adults themselves need to be informed what to expect as they grow older and shown ways to take responsibility for their personal health. Programs should be designed to promote lifetime fitness and prevention where exercise, good nutrition, weight control, stress management and energy conservation are stressed as well as ways to alleviate or manage chronic pain. Adults with CP need to advocate for their health, education, careers, and care, and to better understand an “inter-reliant” sense of independence. Participants want programs that provide options in managing their own care workers. Family support needs to foster independence and inter-reliance. Transition and implementation plans should begin in mid-adolescence and include care coordination of finances and the services of capable adult-centered healthcare providers. Future research could include studies exploring preventive health measures to minimize secondary disabilities and enhanced community accessibility.

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Attribution-NonCommercial-NoDerivatives 4.0 International

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