TY - JOUR
T1 - “Nothing is the same. We are all changed”
T2 - European families' perspectives on adaptation and the nurse's role in supporting them
AU - Ejlertsen, Camilla
AU - Seppänen, Hanna
AU - Paavilainen, Eija
AU - Svavarsdottir, Erla Kolbrun
AU - Hraunfjord, Henny
AU - Tryggvadóttir, Guðný Bergþóra
AU - Sigurdardottir, Anna Olafia
AU - Lima, Lígia
AU - Andrade, Luísa
AU - Lemos, Sara
AU - do Céu Barbieri-Figueiredo, Maria
AU - Camacho-Bejarano, Rafaela
AU - Merino-Navarro, Dolores
AU - Dominguez-Carranza, Estela
AU - Pastor-Montero, Sonia
AU - Leppäkoski, Tuija
AU - Brødsgaard, Anne
N1 - Publisher Copyright:
© 2026 The Authors.
PY - 2026/7/1
Y1 - 2026/7/1
N2 - 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.
AB - 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.
KW - Family adaptation
KW - Nursing
KW - Nursing support
KW - Pediatric nursing
KW - Qualitative study
UR - https://www.scopus.com/pages/publications/105038322311
U2 - 10.1016/j.pedn.2026.05.002
DO - 10.1016/j.pedn.2026.05.002
M3 - Journal article
C2 - 42119237
AN - SCOPUS:105038322311
SN - 0882-5963
VL - 89
SP - 404
EP - 413
JO - Journal of Pediatric Nursing
JF - Journal of Pediatric Nursing
ER -