Exploring health-related quality of life, exercise and alcohol use in adolescents with sickle cell disease and healthy siblings

Abstract

Objective This study explored the health-related quality of life (HRQL) and health behaviours of adolescents with sickle cell disease (SCD) and healthy siblings, drawing on Gap theory which suggests HRQL is the discrepancy between current and ideal selves. Design Twenty-three adolescents with SCD and 21 healthy siblings aged 13 to 17 years participated in eight focus groups. Results Thematic analysis identified three themes: learning to accept SCD, coping with SCD and influences on health behaviours. Adolescents appear to have normalised and adapted to SCD. Adolescents with SCD have learnt effective coping strategies, such as moderating engagement in exercise. Unlike heathy siblings, they were not encouraged to exercise by parents but were content with their level of participation. Both groups were influenced to exercise by role models or wanting to socialise, and influenced to drink alcohol by peers, but there was limited understanding of the potential negative impacts of alcohol on SCD. Conclusion There does not appear to be a discrepancy between adolescents’ current and ideal selves, providing optimism about their HRQL. Further consideration of engaging in healthy behaviours is needed, but it is important to strike a balance so that modifications to lifestyle do not impair HRQL.