Balancing on life's ladder: A meta‐ethnography of the existential experiences of siblings of children with complex care needs

• Published in: Journal of advanced nursing 2024-07, Vol.80 (7), p.2629-2646
• Main Authors: Nygård, Carina, Clancy, Anne, Kitzmüller, Gabriele
• Format: Article
• Language: English
• Subjects: Children; chronic illness; Chronic illnesses; Clinical medicine; Clinical nursing; complex care needs; Ethnography; existential needs; Families & family life; Health care; homecare; lifeworld led care; Medical education; meta‐ethnography; Nurses; nursing; Primary care; Professional practice; Qualitative research; Siblings; siblings' experiences; Systematic review; Translation; well‐being
• ISSN: 0309-2402; 1365-2648; 1365-2648
• DOI: 10.1111/jan.15991

Aim To synthesize and interpret existing qualitative research on the existential experiences of siblings of children with complex care needs. Design Noblit and Hare's interpretive meta‐ethnography. Methods The study has been registered in the international prospective register for systematic reviews (PROSPERO). Noblit and Hare's 7‐step procedure was followed and reciprocal translation was performed to analyse the data and develop a line of argument synthesis. Data Sources A comprehensive systematic literature search of five databases, along with extensive manual searches, was completed in November 2022. The final sample comprised 18 studies published between 2010 and 2022. Results A line of argument, expressed through an overarching metaphor, “balancing on life's ladder”, illustrates the core findings of siblings' fluctuating experiences of existential well‐being, and encapsulates four third‐order themes: the emotional turmoil of siblings, interrupted family life, siblings strive to be themselves and siblings struggle to cope. Conclusion Growing up with a sibling with complex care needs made children feel invisible, lonely and struggling to find the courage to cope. By adopting a lifeworld approach, nurses can become aware of healthy siblings' unmet needs. Future research is needed on how nurses can contribute to siblings' existential well‐being, in primary – and secondary health care settings. Implications The study provides insight into siblings' existential experiences and factors improving their well‐being, enabling nurses to provide a more optimized lifeworld‐led clinical practice. Impact Healthcare, nursing education and practice should be informed by the knowledge of existential issues. Nurses are well‐positioned to work alongside families to provide family‐centered care. Our findings have implications for health policies tailored to the needs of children with chronically ill siblings. Reporting Method This review adheres to the Equator and improving reporting of meta‐ethnography (eMERGe) guidelines. Patient or Public Contribution No patient or public contribution, because the data comprised previously published studies.