Evolution of a Complex and Home Care Program for Children with Chronic Diseases

Lam, Clara Li Ying; Zeng, Yanyin; Tan, Bettina Li Hoon; Chow, Cristelle; Chan, Yoke Hwee

doi:10.1007/978-3-031-22152-1_6

Cited by 1 publication

(1 citation statement)

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“…The recent transitions to a care at home context require a shift in care provision (LeGrow et al., 2022). Families face increased caregiver demands, resulting in strained relationships between parents and healthy siblings, reduced communication and a lack of awareness regarding the healthy siblings' needs (Lam et al., 2023). Although many siblings cope well, recent research indicates that they feel invisible and would benefit from the support and engagement of healthcare professionals (Lummer‐Aikey & Goldstein, 2021).…”

Section: Introductionmentioning

confidence: 99%

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

Nygård,

Clancy,

Kitzmüller

2023

Journal of Advanced Nursing

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AimTo synthesize and interpret existing qualitative research on the existential experiences of siblings of children with complex care needs.DesignNoblit and Hare's interpretive meta‐ethnography.MethodsThe 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 SourcesA 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.ResultsA 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.ConclusionGrowing 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.ImplicationsThe study provides insight into siblings' existential experiences and factors improving their well‐being, enabling nurses to provide a more optimized lifeworld‐led clinical practice.ImpactHealthcare, 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 MethodThis review adheres to the Equator and improving reporting of meta‐ethnography (eMERGe) guidelines.Patient or Public ContributionNo patient or public contribution, because the data comprised previously published studies.

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Section: Introductionmentioning

confidence: 99%