JMIR Publications

ABSTRACT

Background:

Allogeneic hematopoietic stem cell transplant (HCT) is a complex but important treatment for malignant and non-malignant conditions, requiring strict post-transplant adherence to immunosuppressant medications to prevent complications such as graft-versus-host disease (GVHD). Adolescent and young adult (AYA) HCT recipients face unique challenges, including balancing growing independence with ongoing reliance on care partners, often parents. Medication adherence in this group is often suboptimal, and few interventions address the needs of AYA–care partner dyads. To address this, we aim to develop a mobile health (mHealth) app that engages both the AYA patient and care partner to improve adherence.

Objective:

As formative research for early-stage intervention development, our aims were to: 1) explore current HCT medication adherence strategies and challenges; 2) understand attitudes toward digital technology, including dyadic perspectives on using an app together to support adherence; and 3) assess AYA–care partner relationships, including AYAs’ views on care partner involvement. This process was intended to inform the design of a relevant and user-centered mHealth app.

Methods:

Eligible participants included AYA patients aged 12–39 years and primary care partners, such as parents, involved in medication management. Participants were recruited from a large academic medical center via direct outreach and electronic health records. Data collection involved two focus groups (six dyads and two additional AYAs), four individual interviews (two patients, two care partners), and six dyadic interviews. Semi-structured sessions (in-person or virtual) gathered feedback on medication adherence practices and app design preferences. All sessions were audio-recorded with consent and professionally transcribed. Qualitative data were analyzed systematically: transcripts were de-identified, coded using both inductive and deductive strategies, and themes were refined through team consensus. Patterns were organized into major themes, and representative quotations were selected to illustrate findings. Data management was facilitated by NVivo 13 software.

Results:

Twenty-eight participants were included: 15 AYAs and 13 care partners. The median age of AYAs was 18 years (range, 13–39); 53% were female (n=8/15) and 47% male (n=7/15). AYAs were 47% White (n=7/15), 40% Black (n=6/15), and 13% Mixed Race (n=2/15). Care partners’ median age was 48 years (range, 36–72) with 92% female (n=12/13) and 77% White (n=10/13). Three principal themes emerged: 1) existing reminders and organizational tools are often insufficient for consistent adherence; 2) adherence barriers are multifaceted, often involving autonomy versus care partner support; 3) both AYAs and care partners showed strong interest in a dyadic digital health intervention to foster collaboration and support shared adherence goals.

Conclusions:

This formative study provided insights into the complex dynamics of medication adherence in AYA–care partner dyads. Findings revealed the limitations of current strategies and support the need for a dyadic app to enhance adherence, collaboration, and relationship quality.