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Concept analysis studies play major role in clarifying and operationalizing concepts. This approach has been used to clarify and advance knowledge about the concept of Family Centred Care (FCC). The concept of FCC has been studied by many nursing scholars using different methods. This review aimed to combine outcomes of concept analysis studies to assess the level of maturity of the concept of Family Centred Care. Formal electronic databases (MEDLINE and CINAHL) and informal (Google Scholar) were searched using the terms "Family Centred Care" and "concept analysis". The Morse concept maturity evaluation approach was used to appraise the retrieved studies. 35studies were identified of which12 met the inclusion criteria and were included in the analysis. Three studies used Walker and Avant concept analysis methodology, three applied the Rodgers evolutionary model while six applied modified mixed/hybrid approaches. While a few provided a definition of FCC, none have been able to confirm the maturity of the concept. This review summarized the different trials to analyze the concept of FCC supporting the rethinking of the model and emergence of new models such as Child and Family Centred Care (CFCC). Concept analyses should be done periodically to assess the maturity of emerging concepts. Previously published FCC concept analyses manuscripts show the concept has evolved and gained significant recognition and acceptance over time. A clearer definition of FCC supports its positive impact on patient outcomes. A comprehensive FCC tool that can evaluate the effective delivery of FCC is needed. • Concept analysis studies help clarifying and operationalizing concepts in nursing. • Concept analyses should be done periodically to assess the maturity of emerging concepts. • Overtime, the concept has evolved and gained significant recognition and acceptance. [ABSTRACT FROM AUTHOR]

The lives of healthy siblings living with a sibling with a long- term condition are often shaped by the family, type of illness, length of illness, age of the child, caregiver demands, and support provided to the family, ill sibling, and healthy sibling. While the experiences of healthy siblings are documented in the literature by parent proxy, literature on healthy siblings self-reported experiences of living with a sibling who has a long-term condition remains scarce. This umbrella review aims to synthesize reviews on the self-reported experiences of healthy siblings of children living with a sibling who has a long-term condition. Published peer-reviewed reviews in English language exploring the self-reported experiences of healthy siblings under 24 years old, whose siblings are diagnosed with a long-term condition. Using a developed search strategy, seven electronic databases (CINAHLPlus, Scopus, PubMed, PsycINFO, Cochrane Database of Systematic Reviews, Clinical Key, and Google Scholar) were searched from 2018 till December 2023. Eleven reviews met the inclusion criteria and were subjected to narrative synthesis. Four themes (adjusting to changes, wanting to help, living the ups and downs, living the changes), and eight subthemes were generated from the syntheses. This is the first umbrella review undertaken on healthy siblings self-reported experiences of living with a sibling who has a long-term condition. The impact of a long-term condition on healthy siblings of children with a long-term condition suggests a need for healthcare providers and organisations to provide better emotional, psychological, and informational support to healthy siblings and their families. Findings from this review will inform healthcare providers, organisations, researchers, and policymakers on the development of future clinical practices and research for healthy siblings. • Healthcare providers must enhance support for healthy siblings and families, addressing emotional, psychological, and informational needs. • The complexity and often overlooked lives of siblings of children with long term conditions continues. • Age-appropriate resources for siblings (peer support, info packages, guidelines) are essential for their needs. • Development of sibling specific screening tools is needed. [ABSTRACT FROM AUTHOR]

To explore the perceptions of parents who had a child or adolescent (6-18 years) diagnosed with a rare disease who attended a mainstream school in Western Australia. A cross-sectional online survey was conducted with 41 parents of children with a rare disease. Here we report the findings of 14 open-ended questions on their experience of illness-related factors and impact on school-related social activities, such as sports, school camps and leadership roles whilst their child with a rare disease attended a mainstream school in Australia. Responses were analysed using an inductive thematic content approach. We identified three themes (resources, experiences and needs), seven categories (illness, support, knowledge, acceptance, isolation, activities of daily living and adjunctive therapy) and 24 codes from the parents' responses describing the experiences of their child at school. Parents want the government and educational systems to provide the necessary funding and resources to reflect an inclusive curricula and supportive environment that can meet the learning needs of children with a rare disease at a mainstream school. Further research, policy development and interventions are needed to explore how schools can meet the diverse psychosocial physical and emotional needs of children diagnosed with a rare disease who attend a mainstream school in Australia. A child needs to be viewed from a holistic ecological viewpoint; future research with larger representative samples to explore rare disease experiences and a critical review of existing legislation, interventions and initiatives is required. • A child with a rare condition needs to be viewed through a holistic ecological viewpoint. • The needs of many children with a rare disease are not being met at school. • An inclusive school environment requires input through a multi-disciplinary lens. • Future rare disease research with larger representative samples are required. • Educational providers need to be aware of the latest legislation on rare diseases. [ABSTRACT FROM AUTHOR]