Psycho-social challenges faced by caretakers of children and adolescents aged 0-19 years with sickle cell disease admitted in a tertiary hospital in Eastern Uganda

Abstract

Background: Families of children and adolescents living with sickle cell disease face several challenges ranging from psycho-social to social-economic challenges. This study aimed to explore psycho-social challenges experienced by caretakers of children and adolescents aged 0-19 years with SCD and the various coping mechanisms.

Methods: A mixed-methods cross-sectional study was carried out among caregivers of children with SCD who were admitted to the pediatric wards of the Mbale Regional Referral Hospital from September 2019 to November 2019. A total of 333 participants were interviewed using a pretested questionnaire and 11 in-depth interviews were conducted.

Results: Most participants 285(85.59%) reported that they experienced psychological challenges and almost all the participants in this study 297(89.19%) experienced social challenges during the care of their patients. Only 36(10.81%) reported not experiencing any social challenges. Almost all the participants reported coping with the situation in various ways of which, 296(88.89%) used acceptance, 9(2.7%) still lived in denial, while 9(2.7%) used talking with others and getting counseled to reduce the intensity of the feelings experienced. Three themes were generated from the in-depth interviews; knowledge of the child's health condition; common symptoms and care, the experience of psycho-social challenges, and coping strategies.

Conclusion: Sickle cell disease has affected two sets of people; the people living with the disease and those who are caring for their loved ones. Being conscious of this will help health practitioners to be more empathetic to patients and caregivers when treating people living with sickle cell disease. The biggest proportion of caretakers of children and adolescents 0-19 years experienced psycho-social challenges. The main coping strategy used by the caretakers was acceptance.

Keywords: Caretakers; Children and adolescents 0–19 years; Coping mechanisms; Psycho-social challenges; Sickle cell disease.