Quality of life from the perspective of adolescents with cerebral palsy: “I just think I’m a normal kid, I just happen to have a disability”
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- Shikako-Thomas, K., Lach, L., Majnemer, A. et al. Qual Life Res (2009) 18: 825. doi:10.1007/s11136-009-9501-3
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The aim of this qualitative study was to obtain the perspectives of adolescents with cerebral palsy (CP) on factors that positively or negatively influence their quality of life (QoL).
Using constructivist grounded theory, adolescents (12–16 years) were interviewed to obtain their accounts of intrinsic and extrinsic attributes that made a difference in their satisfaction with life. A purposive and theoretical sample of 12 adolescents was obtained. Narratives were coded into categories and themes, which were initially broadly defined as intrinsic (child-related) and extrinsic (environmental) factors, and then were further differentiated as analysis progressed.
Participants reflected on their quality of life as an interaction between intrinsic and extrinsic factors. The predominant theme that emerged involved a relationship between personal interests and preferences (intrinsic) and opportunities to participate in age-appropriate activities and leisure activities (extrinsic). Opportunities to participate in activities that the adolescents value affect their perceived quality of life and this perception was consistent regardless of the objective level of motor impairment.
Health care providers should take into consideration what adolescents with CP value the most. The identification of attributes that can be modified such as accessibility to and competence in, and preference for different activities may help professionals to advocate for greater participation in these activities and tailor individual therapeutic strategies accordingly, increasing the likelihood of enhancing the quality of life of this population.