Impact of a near-peer group mentorship program on improving transition skills for adolescents and young adults living with sickle cell disease Free

Introduction

People living with sickle cell disease (SCD) often have short life expectancies and are deeply affected by systemic inequities. At particularly high risk are adolescents and young adults (AYA) during their transition from pediatric to adult care as they experience increased disease-related complications and mortality. Past studies investigating mentorship programs for AYA with SCD yielded mixed results that were attributable to time constraints, lack of peer-to-peer connections, and power imbalances that impeded effective mentee-mentor relationships. Sickle cell Teens, Raising awareness, Initiating change, Voicing opinions, and Empowering themselves (STRIVE) is a near-peer group mentorship program offered by the nonprofit organization Next Step. The program pairs AYA living with SCD with student mentors across three college campuses in Boston, New York City, and Washington, D.C. STRIVE's unique approach allows AYA with SCD to regularly see peers and engage with mentors at similar developmental stages. This study aimed to examine the role of STRIVE in improving disease knowledge, connectedness, and independence among AYA with SCD.

Methods

From August to November 2024, 45-minute semi-structured interviews were conducted with former STRIVE participants selected through purposive sampling. The interview guide was developed a priori based on surveys administered at the start and end of each academic year. Open-ended questions were asked, such as how STRIVE impacted their understanding of SCD, how STRIVE activities made them feel a sense of belonging, and how STRIVE contributed to their self-sufficiency. Interviews were audio recorded, transcribed, and analyzed using NVivo software. An inductive coding approach was employed. Two researchers independently coded the transcripts, with discrepancies resolved by a third reviewer.

Results

Eleven AYA with SCD ages 18-25 who participated in STRIVE between 2011-2024 were interviewed. Through coding, six core themes emerged: community, feeling understood, knowledge and skills acquisition, transition preparation, reframing perspectives, and structural flexibility. The community theme reflected descriptions of STRIVE as a safe space, support system, and multigenerational family. The theme of feeling understood encompassed youths' experiences with the STRIVE community; their positive and neutral interactions with healthcare workers; feelings of being misunderstood by providers; and perceived lack of understanding from school peers and family. Knowledge and skills acquisition encompassed youths' learning of SCD types, symptom variability, health insurance, and emerging therapies; health-related competencies such as self-advocacy, community advocacy, and personal health management; and non-health-related skills of academic development and career-oriented self-empowerment. The theme of transition preparation was subdivided into college transition, healthcare transition, and transition to adulthood. The reframing perspectives theme arose as youth described their mental shift from feeling limited to embracing that they are more than their disease. The structural flexibility theme emerged from positive impressions of balance between structured components—such as case-based scenarios and pre-planned activities—and unstructured time, which fostered informal dialogue, storytelling, and collective healing.

Conclusions

The STRIVE near-peer group mentorship program uniquely contributes to enhancing disease-related knowledge, nurturing a sense of connectedness, and promoting independence among AYA with SCD. Our data showed that structural flexibility in near-peer mentorship is a novel approach to improving disease-specific knowledge. STRIVE enabled youth to form bonds with ambitious peers and college student role models, diminishing traditional mentee-mentor hierarchies. Many participants entered the program with limited confidence; however, STRIVE's structured programming facilitated development of public speaking skills and cultivated self-assurance, enabling the youth to engage in discussions about SCD and make informed decisions regarding their future trajectories.The transition process for these AYA extends beyond the medical setting; it requires a holistic approach. STRIVE provides a near-peer who can assist with such broad lifestyle adjustments. Future studies will investigate the role of near-peer mentorship on transition success, healthcare utilization, and quality of life.