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Evaluating Empowerment in Adolescents with a Disability and/or Chronic Condition from Neurology and Orthopedic
Kennedy Austin1,2, Kathryn Selby2,3, Alice Virani1,4
1Department of Medical Genetics, University of British Columbia, Vancouver, BC, Canada.
Objective:
To evaluate empowerment and quality of life in adolescents (10-19 years of age) with chronic conditions and/or disabilities from neurology and orthopedic clinics and identify areas to improve their care and empowerment.
Study Design:
We utilized a mixed-methods design with an explanatory sequential approach. Participants were recruited from neurology and orthopedic clinics at BC Children's Hospital and completed a demographic survey and two validated online tools: The Gothenburg Young Person's Empowerment Scale (GYPES) and Pediatric Quality of Life (PedsQL) 4.0 self-report. Semi-structured interviews were conducted to gain a deeper understanding of adolescents' feelings of empowerment. Linear regression analysis was performed to identify demographic variables associated with decreased empowerment and quality of life. Interviews were analyzed using an interpretive description framework.
Results:
Forty-eight participants completed the survey. The mean reported GYPES and PedsQL scores were 58.15 ± 8.46 and 61.57 ± 22.32, respectively. Theoretical sufficiency was reached after 14 interviews. Four environmental factors leading to feelings promoting empowerment were identified: (1) shared decision-making enabled advocacy and independence, (2) education (particularly involving genetics) increased knowledge and understanding, (3) sharing stories led to empowering others, and (4) participation in physical activities promoted a sense of belonging.
Conclusions:
This study was the first to use the GYPES in adolescents with diverse disabilities and/or chronic conditions from neurology and orthopedic clinics. Adolescent patients felt empowered when they were actively involved in their health care and informed about the genetics of their diagnosis. Participants also wanted opportunities to empower others going through similar experiences. This study emphasizes the need for access to genetic counseling and opportunities for shared expression to facilitate empowerment.
