Abstract

Background: The transition of adolescents and emerging adults (AEA) from pediatric to adult care is often challenging. This is especially true for those with sickle cell disease (SCD) because transition coincides with a time period of rapidly increasing mortality risk. Gaps in knowledge and lack of appropriate communication skills can contribute to this risk. Many SCD AEA do not know which variant of SCD they have, cannot explain their relevant medical history, do not understand or take ownership over requesting prescription refills, and do not have the skillset to navigate health insurance. Additionally, pain is an invisible complication that cannot be objectively measured and requires communication skills. Many patients lack the necessary communication skills to effectively articulate their pain to healthcare providers. To address the transition needs of individuals with SCD, our team adapted and developed an innovative group healthcare model based on the core components of the well-established Centering® healthcare model. We produced a group healthcare curriculum entitled Our Hands, Our Health based on these gaps in knowledge. At each session, the 8-10 patients in the group will have a one-on-one visit with their hematologist and then meet with the entire group for 60 minutes of health education through group discussions led by two facilitators using interactive activities, games, and role-plays. Patients form relationships with other members of the group and with the co-facilitators as they collaboratively discuss and generate health education strategies. Methods: Using a constant comparative technique, we reviewed the core components of the Centering® model and systematically integrated these into the Our Hands, Our Heath program. The health education content reflects the needs of all AEA as well as the unique healthcare needs of AEA with sickle cell disease as they prepare to transition to adult care. Next, we completed a 6-session feasibility and acceptability study with four participants who met monthly. Then, we expanded the program from 6 to 10 sessions and conducted a full-scale pilot meeting every other month (n=13). Direct observations of sessions, debriefings, and interviews with participants and co-facilitators were used to evaluate the model. Results: Participants and co-facilitators enthusiastically embraced the Centering-based group care model. The feasibility participants (n=4) stated that they preferred group care to individual care. From the pilot, there was only one participant who did not like meeting in a group; all others (n=9) reported that they enjoyed group meetings and preferred getting their care this way. Three participants were lost to follow-up due to moving (n=2) and full-time employment (n=1). After the 4th session, six participants reported feeling more prepared for transition. Participants described the value of shared experiences and appreciated the engaging learning environment. Participants felt group meetings offered a supportive environment allowing them to develop relationships with peers who can relate, as well as with their healthcare provider, who was a co-facilitator. They were comfortable asking questions for clarification and liked being able to have in-depth discussions. Co-facilitators reported that it was more efficient to convey health education material in groups than repeating things to each patient one by one and observed participants in group care had an increased understanding of the health education messages. Some structural changes included securing a room larger, how patients were checked in and checked out, how vital signs were taken, and the hiring of a phlebotomist. Conclusions: The Centering-based group care model was feasible and acceptable by participants and co-facilitators. In addition to patient-focused assessments, we suggest including provider satisfaction and perceived quality of care measures. Sustainability is an important consideration and a costs/benefits analysis is needed. Based on our developmental research, a Centering-based group care model appears to offer a promising strategy to increase health education and will facilitate a successful transition from pediatric to adult care. Our long-term goal is to test the efficacy of such a model.

Disclosures

No relevant conflicts of interest to declare.

Author notes

*

Asterisk with author names denotes non-ASH members.