Abstract
Compassion stands as a fundamental element in pediatric healthcare. Compassionate care is critical in delivering treatments and also in shaping the holistic experience of patients and their families. Yet, a unified understanding of what constitutes compassion from the perspectives and preferences of pediatric patients and their families is unknown. In particular, the significance of compassionate care during transitions from pediatric to adult healthcare cannot be overstated, especially for youth with disabilities. Numerous challenges exist during care transitions from pediatric to adult healthcare including navigating fragmented systems, unfamiliar healthcare environments, and a lack of tailored support systems. Addressing these challenges necessitates an evolution of existing conceptual models of compassion, tailored to meet the unique needs and experiences of the transition-age population. This qualitative study employed framework analysis, informed by the Compassion in Health Care Empirical Model by Sinclair et al. (2015) aiming to refine a conceptual model of compassionate care during the transition from pediatric to adult healthcare. The research involved a multidisciplinary team comprising researchers, healthcare professionals, youth participants, and family caregivers who collaborated in the design, implementation, and monitoring of the study. Interviews and focus groups were conducted with 15 youth and 8 caregivers, followed by theoretical sampling to achieve diversity. Data collection occurred via telephone interviews and MS Teams focus groups, exploring experiences and perspectives on compassionate care in healthcare transitions. Analysis involved staged coding, framework analysis, and constant comparative analysis. Preliminary analysis has resulted in a model of compassion in health care transitions. This model may include elements such as empathetic communication, personalized support networks, proactive guidance through healthcare system shifts, inclusive and accessible healthcare environments, empowerment in decision-making processes, and ongoing holistic support beyond medical interventions, all fostering a compassionate continuum of care. Unlike existing compassionate care models, our findings highlight the evolving medical needs necessitating educational transitions, social adjustments, and a greater reliance on family support structures. Additionally, compassionate care in the context of youth with disability require consideration of the emotional aspects of transitioning from pediatric to adult care, making the need for tailored compassionate care more pronounced. The impact of our study lies in illuminating the nuanced needs during healthcare transitions in the context of youth with disabilities and their caregivers, offering insights that can inform tailored compassionate care strategies. Moving forward, our next steps entail refining the model of compassion in health care transitions, potentially implementing and testing these strategies in real-world healthcare settings to improve transitional care practices globally.