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Pediatric Hematopoietic Stem Cell Transplant Medication Adherence Facilitators and Strategies: A Qualitative Study
Marie L Chardon1, Kimberly L Klages1, Naomi E Joffe1,2,3
1Division of Behavioral Medicine & Clinical Psychology, Cincinnati Children's Hospital Medical Center, USA.
Insights
Caregivers of children undergoing hematopoietic stem cell transplant (HCT) develop many strategies for medication adherence. However, caregiver burden remains high, indicating a need for tailored multidisciplinary support post-HCT.
Area of Science:
- Pediatric Hematology/Oncology
- Transplantation Medicine
- Adolescent and Young Adult Medicine
Background:
- Medication adherence is critical for pediatric survival post-hematopoietic stem cell transplant (HCT).
- Suboptimal adherence is a common challenge in this vulnerable population.
- Understanding facilitators and strategies is essential for developing effective interventions.
Purpose of the Study:
- To examine caregiver-perceived medication adherence facilitators and strategies after pediatric HCT.
- To identify factors that promote or hinder medication management in children post-transplant.
- To inform the development of targeted adherence interventions.
Main Methods:
- Qualitative study employing semi-structured interviews with 29 caregivers of children (≤12 years) within 2 years of HCT.
- Demographic questionnaires collected alongside interviews.
- Thematic analysis guided by grounded theory to identify key themes.
Main Results:
- Four main categories of facilitators and strategies emerged: family, medication, caregiver, and multidisciplinary treatment team.
- Caregivers demonstrated resourcefulness, independently developing numerous adherence strategies.
- Identified facilitators and strategies varied among caregivers and evolved over time.
Conclusions:
- Caregivers are resourceful but experience significant burden managing medications post-HCT.
- Individualized, multicomponent support from the multidisciplinary team is crucial, especially after hospital discharge.
- Further research should focus on developing and evaluating interventions to alleviate caregiver burden and improve adherence.
Objective:
Taking medications as prescribed after hematopoietic stem cell transplant (HCT) is key for ensuring children's survival; however, suboptimal medication adherence is common. Development of evidence-based interventions to improve medication adherence post-HCT is contingent upon understanding what adherence facilitators (i.e., unique traits, characteristics, or resources inherent to the individual, medical treatment, or healthcare team) and strategies (i.e., tools caregivers or medical providers intentionally use) promote medication adherence in this population. Therefore, this study examined caregiver-perceived medication facilitators post-HCT.
Methods:
Semi-structured qualitative interviews and demographic questionnaires were completed by 29 caregivers of children (≤12 years) who had received an HCT within the past 2 years.
Results:
Thematic analysis guided by grounded theory revealed 14 saturated themes that were grouped into 4 categories: family facilitators, medication facilitators, caregiver strategies, and multidisciplinary treatment team strategies.
Conclusions:
Overall, findings suggest that caregivers of children who received an HCT are highly resourceful and independently develop many strategies to assist them with medication management after their child's HCT. These facilitators and strategies varied between caregivers and over time. Despite prevalent facilitators and strategies, caregiver burden associated with medication adherence remains high. Caregivers may benefit from the multidisciplinary treatment team providing individualized and multicomponent (educational and behavioral) medication adherence supports to ease this burden particularly shortly after hospital discharge.
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