https://ogma.newcastle.edu.au/vital/access/ /manager/Index ${session.getAttribute("locale")} 5 Gene deletion and sleep depletion: exploring the relationship between sleep and affect in 22q11.2 deletion syndrome https://ogma.newcastle.edu.au/vital/access/ /manager/Repository/uon:36483 Wed 20 May 2020 16:16:09 AEST ]]> 'At the end of the day, it is more important that he stays happy': an interpretative phenomenological analysis of people who have a sibling with 22q11.2 deletion syndrome https://ogma.newcastle.edu.au/vital/access/ /manager/Repository/uon:33796 'They are the priority' overarched two subordinate themes that emerged from participants' descriptions of the struggle with acceptance and finding positive meaning. Participants oscillated between conflicting feelings about their sibling with 22q11.2DS always taking centre stage. For example, they felt anger, guilt and resentment; yet, they also embraced patience, empathy and gratitude. Conclusions: This phenomenological study provides a foundation for future research relating to 22q11.2DS and fostering family wellbeing, particularly around acceptance and psychological growth. The siblings in this study actively withdrew from their family to allow prioritisation of their affected sibling. However, this does not mean that their needs should be overlooked. There are easily accessible resources to support siblings of individuals with disabilities, and it is important for health professionals and parents to consider these options.]]> Tue 15 Jan 2019 15:31:49 AEDT ]]>