A qualitative exploration of the experience of adolescents and young adults and parents in the decision-making process when seeking emergency department care for a pain episode in sickle cell disease
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Sickle cell disease affects individuals in the United States and worldwide. It is an inherited genetic disorder that is marked by recurrent pain episodes as well as organ damage. Parents/legal guardians are legally responsible for making medical decisions for adolescents under the age of 18 years. However, once an adolescent becomes an adult, they are responsible for making medical decisions. The purpose of this study was to explore the thought process of adolescents and young adults with sickle cell disease, as well as their parents/legal guardians in healthcare decision making when considering emergency department treatment for acute vaso-occlusive pain episodes. This study used qualitative descriptive methods with thematic analysis. Nine parents/legal guardians participated in the study; six adolescents under the age of 18 years and one young adult aged 19 agreed to participate for a total of 16 participants. Four themes emerged from the analysis describing the experiences of the participants healthcare decision making regarding whether to use emergency department care: (1) Knowledge acquisition through learning activities; (2) Thought process in healthcare decision making; (3) Discussion to seek vaso-occlusive episode care in the emergency room through consideration of reasons for emergency department care; and (4) Reasons it is the responsibility of parents/legal guardians of children. As adolescents and young adults transition to adult care they become the primary decision-maker for their healthcare needs. It is important that parents/legal guardians and healthcare providers ensure there is an understanding of the process of healthcare decision making prior to transition.
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Ph. D.