What is it about?

This study asked 29 caregivers' of children who had a stem cell transplant in the past 24 months about their experience with their child taking medication and any issues they had. Authors analyzed the data and found 21 themes grouped into 6 categories regarding what made taking medication difficult for families. The six themes were anticipated barriers (e.g., what caregiver's believed might happen after transplant), child factors (e.g., medication refusal, side effects, child emotions, problems swallowing pills, and sleep), caregiver factors (e.g., caregiver emotions, forgetting, lack of knowledge or experience with medication, and challenges coordinating across caregivers), family factors (e.g., daily life, responsibilities and stressors), medication factors (e.g., medication quantity or schedule, difficulty with medication names and information, refill issues, medications frequently changing, delivery modality, and safety), and medical team factors (e.g., communication challenges and power dynamics). Each theme was also categorized based on the time the barrier was present and the largest number of barriers were present after hospital discharge. These themes provided insight into some areas that could be addressed at various stages of the transplant process including prior to admission, during hospital admission and after hospital discharge.

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Why is it important?

Taking medication as prescribed is necessary for positive outcomes after a child receives a stem cell transplant and children are usually not taking medication as prescribed due to various factors including the quantity of medications and complexity of care after transplant. There have not been many studies looking at this issue in this specific population and this article provides some potential ideas of ways to start improving adherence for this population.

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This page is a summary of: Caregivers’ Experience of Medication Adherence Barriers during Pediatric Hematopoietic Stem Cell Transplant: A Qualitative Study, Journal of Pediatric Psychology, January 2022, Oxford University Press (OUP),
DOI: 10.1093/jpepsy/jsab138.
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