Self-management for sickle cell disease among patients and parents: A qualitative study

Abstract

Objective This study aimed to explore self-management practices among patients and parents of children with sickle cell disease (SCD). Methods The qualitative descriptive design was employed. The study involved 19 participants comprising adult SCD patients ≥16 years, and nine parents of SCD children ≤ 15 years. Purposive sampling was conducted to select participants from a teaching hospital and SCD association. Data was collected using one-on-one interviews, transcribed verbatim, and analysed using qualitative content analysis. Results Self-management was reported through four categories including preventive health, self-monitoring, self-diagnosis, and self-treatment. Hydration, nutrition, activity limitation, avoidance of cold temperatures, and supportive medications were the most common preventive health actions. Regarding self-monitoring and self-diagnosis, the parents emphasized objective indicators such as changes in urine and eye colour compared to the adults who utilize subjective indicators such as feeling unwell and easy fatigue. Pharmacological and non-pharmacological measures were reported by both groups for treating painful episodes, fever, leg ulcers, priapism, and unspecified symptoms. Discussion The participants in this study practice several self-management actions with some differences in application between adults and children. Tailored self-management services may be helpful for adults and children when developing services for SCD patients.