Conceptualization of Compassion Among Youth with Childhood-Onset Disabilities, Family Caregivers and Healthcare Providers (Preprint)

BACKGROUND In the pediatric healthcare setting, compassion is an essential element of care, known to enhance both the overall healthcare experience and clinical communication, while also contributing to improved health outcomes. Despite its established benefits, the conceptualization of compassion in the context of childhood-onset disabilities remains underexplored. OBJECTIVE To explore how compassion is conceptualized from the perspective of youth aged 12 to 17 and diagnosed with an acquired brain injury, autism spectrum disorder, or cerebral palsy, family caregivers and healthcare providers. METHODS A qualitative descriptive approach was used. Twenty-six semi-structured interviews were conducted with youth with childhood-onset disabilities (n=6), parents of youth with childhood-onset disabilities (n=9), and healthcare providers (n=11). Five themes were constructed using reflexive thematic analysis. RESULTS The following five themes were constructed: Virtues and Virtues in Action, Taking Time to Connect with Patients and Personalize Care, Bridging Communication Gaps through Active Listening and Non-Verbal Expressions, Adapting Communication to Meet Individual Needs, and Providing Whole-Family Care. While youth and parents emphasized virtues such as kindness, forgiveness, understanding, and attentiveness, healthcare providers often extended this understanding to include purposeful action, recognizing that compassion, especially in clinical settings, must be operationalized. Youth and parent participants emphasized the need for healthcare providers to take the time to actively listen, connect and show genuine interest in them. Participants also emphasized the necessity for healthcare providers to adjust their communication styles to accommodate the unique needs of each individual, particularly for youth with ASD and their families. The findings also underscore the importance of whole-family care and actively considering parents’ suggestions to co-design personalized care plans that address the youth’s needs, ensuring that both youth and their families are fully engaged and supported throughout their health care journey. CONCLUSIONS Compassion in caring for youth with childhood-onset disabilities is rooted in virtues such as kindness, patience, and understanding that must be actively mobilized through individualized, family-centred practices. By taking the time to connect, listening attentively (both verbally and non-verbally), adapting communication to each youth’s developmental needs, and extending care beyond the individual to include the whole family, healthcare providers can better operationalize compassion in clinical practice to co-design care that meets the needs of youth and their families. Implications for future research include the co-design of transition-related interventions rooted in the dimensions of compassion identified in this study.