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Abstract

Adolescents (10 – 19 years) with chronic health conditions/disabilities are faced with emotional and social challenges during a critical period of identity development. An important health outcome in this population is empowerment; feeling confident and in control when managing one’s health. We evaluated empowerment and quality of life (QOL) in adolescents with chronic conditions/disabilities and identified areas to improve their care and empowerment. 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 used to measure empowerment (GYPES) and QOL (PedsQ™ 4.0). Linear regression analysis was performed to identify demographic variables associated with decreased empowerment and QOL. For the qualitative phase, we conducted semi-structured interviews to gain a deeper understanding of adolescents’ feelings of empowerment using an interpretive description framework and phronetic iterative analysis. Forty-eight participants completed the survey, representing a diverse range of age, gender, ethnicity, and disorders. The mean reported GYPES and PedsQ™ scores were 58.15 ± 8.46 and 61.57 ± 22.32 respectively. Individuals from orthopedics reported significantly higher scores in the ‘personal control’ GYPES domain as well as higher QOL scores across all dimensions compared to those from neurology. Participants who chose to be contacted about future research studies and informed about study results had significantly higher empowerment scores in the ‘enabling others’ GYPES domain and in total. Theoretical sufficiency was reached after 14 interviews. Four external (environmental) factors leading to internal factors (feelings) promoting empowerment were identified: 1) shared decision-making enabled advocacy and independence, 2) education (particularly involving genetics) increased knowledge, 3) sharing stories led to empowering others and forming connections, 4) participation in physical activities promoted a sense of belonging. Our study was the first to use GYPES in adolescents with diverse disabilities. Adolescents felt empowered when they were involved in their health care and informed about the genetics of their diagnosis. Participants wanted to speak about their disability and empower others going through similar experiences. This emphasizes the need for access to genetic counselling and opportunities for shared expression to facilitate empowerment.