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

Abstract

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.