Introduction: Given recent advances in medical care for children with Sickle Cell Disease (SCD), families are now seeing their children survive into adulthood. This presents new challenges around transition from pediatric to adult medical care, with responsibility for self-management shifting from parent to child. Interventions to improve self-management skills, such as problem solving education (PSE), have been used to increase self-efficacy and medication adherence in youth with other chronic diseases. The present study sought to explore common barriers and facilitators of disease management during the transition period and the acceptability of adapting PSE to improve transition readiness in adolescents with SCD.
Methods: We purposively sampled adolescents with SCD ages 13 to 18 who received care at either Boston Medical Center (BMC) or Boston Children's Hospital and their primary caregiver to participate in focus groups. Each focus group was audio recorded and transcribed. Data were analyzed through use of grounded theory and coded with NVivo, a qualitative analysis software. Transcripts were double-coded until thematic saturation was achieved.
Results: A total of 17 adolescents and 15 adult caregivers participated in five focus groups. Groups initially met together to discuss barriers and facilitators of self-management and then split into separate groups of teens and parents to discuss PSE. Teens and parents identified common methods of disease management includingtaking medication, staying warm and dressing appropriately, maintaining hydration and a healthy diet, and staying rested. Teens identified having a daily routine and sharing responsibility with a caregiver as facilitators of self-management. Caregivers commonly mentioned using a set of reminder techniques to help teens manage their health. Barriers to increasing teens' self-management included wanting to fit in with peers and lacking appropriate knowledge. Parents found it challenging to allow teens more responsibility.
Parents and teens unanimously approved the adaption of PSE to SCD management and transition. Though a small number of parents stated low interest in participating either for social reasons or lack of perceived need, many identified the potential benefits of the intervention for both parents and teens. Parents felt that educational support would be most beneficial to them, while teens prioritized the benefits of emotional support during the transition period. Most participants would prefer that parents and teens meet separately in a group setting at the hospital or a comfortable environment outside of the home, then join together for a final session. Groups would be held on a weekly basis for a minimum of two months. However, some participants felt the support was imperative and thus could be effective for a year. Participants favored a mentor-style structure where a knowledgeable, college-aged individual with sickle cell disease would serve as the interventionist. This appeared to be a common preference for both parents and teens as they felt it was important to work with an individual that excelled independently and academically, despite any challenges with SCD.
Parents and teens willingly identified specific scenarios where they felt PSE would be most valuable. Common PSE scenarios for teens were related to disclosing the diagnosis to peers, enhancing methods of management, and addressing identified barriers to transitioning. PSE scenarios for parents involved working with healthcare and school systems on select adaption issues and learning to "let go" of their teen.
Conclusion: Though parents and teens have adapted management techniques to facilitate their transition from pediatric to adult medical care, barriers still exist across medical, personal and educational environments. Applying PSE as an intervention for both parents and teens of a sickle cell population could improve self-management and transition readiness in this vulnerable population.
No relevant conflicts of interest to declare.
Asterisk with author names denotes non-ASH members.