"Nothing is the same. We are all changed": European families' perspectives on adaptation and the nurse's role in supporting them

Abstract

Background: Caring for a child with a chronic condition places enduring emotional, relational, and practical demands on families. A deeper understanding of how families adapt, and how nursing care supports this process, is essential to strengthen family-centered pediatric nursing practice. Purpose: This study explored parents' perceptions of their family's adaptation to a child's chronic condition and examined how they viewed the role of nurses in this process across diverse European healthcare contexts. Methods: This qualitative sub-study was part of a multinational comparative project. Data comprised responses to three open-ended survey questions from parents of children (0–18 years) living with chronic conditions. Thematic analysis was conducted following Braun and Clarke's six-phase framework. Findings: Two overarching themes were identified. Meaning-Making in the Context of Family Vulnerability and Growth described families' experiences of psychological and relational burden, unmet support needs, and gradual adaptive growth. Relational Care and Strengthening Family Agency captured how trust in professional competence, nurses' empathetic presence, and tailored guidance empowered families to manage care at home. Parents reported ongoing strain and uncertainty but also described resilience and a sense of shared purpose when supported by relational and continuous nursing care. Conclusion: Family adaptation to a child's chronic condition is a dynamic relational process shaped by both vulnerability and opportunities for growth. Nurses play a pivotal role in fostering trust, strengthening family agency, and alleviating emotional and practical burdens. Healthcare systems should prioritize continuity, relational depth, and accessible psychosocial and educational resources for families.