A qualitative exploration of health-related quality of life and health behaviours in children with sickle cell disease and healthy siblings

Abstract

Objectives

This study explored the health-related quality of life (HRQL) and health behaviours of children with sickle cell disease (SCD) and healthy siblings, drawing on Gap theory, which suggests HRQL is the discrepancy between current and ideal selves.

Design

Thirty-two interviews, facilitated by children’s drawings of their current and ideal selves were thematically analysed.

Results

Two themes were identified. First, limitations of SCD and adjusted expectations. Children with SCD report some discrepancy in HRQL as they would like to participate in more physical activity, but overall, they appear to have normalised their condition and adjusted their expectations in the context of the limits of their condition. Healthy siblings worry about their sibling and have greater expectations about engaging in adventurous activities and for their future. Second, coping with SCD. Children have limited social support, although children with SCD seek support from their mothers. They also modify health behaviours, like reducing exercise to help prevent and cope with sickle-related pain.

Conclusion

Children have some discrepancies in their HRQL but adjusted expectations among children with SCD may reduce discrepancy. Adapting health behaviours may help to cope with SCD but it is important that reductions in physical activity do not impair HRQL.

Keywords:

• Children
• chronic illness
• health-related quality of life
• qualitative methods
• health behaviour
• physical activity

Acknowledgements

We extend our deepest gratitude to the children who participated in this study and their parents or carers for accompanying them.

Disclosure statement

The authors report no conflict of interest.

Data availability statement

Data not available due to ethical restrictions. Due to the nature of this research, participants of this study did not agree for their data to be shared publicly, so supporting data is not available.

Correction statement

This article has been republished with minor changes. These changes do not impact the academic content of the article.