Spiritual care for Latinx youth with type 1 diabetes (T1D) and their caregivers: qualitative analysis of focus groups

BACKGROUND: Latinx youth with T1D experience systemic disparities in glycemic management and access to psychosocial support. Spiritual resources and needs may also impact diabetes distress and T1D management for youth and their caregivers. Professional chaplains are uniquely qualified to support patients and families with serious medical conditions; however, their services are not well understood and are underutilized in diabetes care. Our objectives included: (1) Identify spiritual experiences and needs of youth with T1D and their caregivers; and (2) Highlight opportunities for chaplains to provide spiritual care support to improve diabetes care. METHODS: Qualitative analysis of spiritual care resources and needs reported in focus group sessions with Latinx youth (ages 13-17) with T1D and their caregivers. The framework method guided coding of transcripts and refinement of themes, which were interpreted based on professional spiritual care activities. Through constant comparison, a theory was developed to illustrate potential benefits of professional chaplain support in T1D. RESULTS: With 13 youth and 13 caregivers, we identified themes that bear relevance for spiritual care support in diabetes, which included: loss of hope; negative self-image and shame; difficulty accepting reality of condition or wearing a diabetes device; grief; disconnection from community support; diabetes technology enhancing one's life; and coping resources for spiritual well-being. These themes translate to practical benefits of a professional chaplain's clinical activities. Spiritual care pathways for T1D care illustrate the intended effects, methods, and interventions of professional chaplains for improving resilience, quality of life, and support for self-management practices. CONCLUSION: Latinx youth and caregivers described deep emotional experiences related to living with T1D and self-management practices, which can be viewed and addressed through the lens of spiritual care. Our research is the first-of-its-kind to identify specific unmet needs in T1D care that could benefit from chaplaincy as part of the multidisciplinary team. Spiritual struggle related to managing T1D (e.g., isolation from others with T1D, negative self-image, grief) warrants specialized support. Further investigation should examine preferences of youth with T1D and their caregivers, specifically for spiritual care services as part of their T1D care, and integration of professional chaplain support in T1D care.