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dc.contributor.authorTregidgo, Catherine
dc.contributor.authorElander, James
dc.date.accessioned2019-01-30T13:01:14Z
dc.date.available2019-01-30T13:01:14Z
dc.date.issued2018-12-18
dc.identifier.citationTregidgo, C., and Elander, J. (2019) 'The invisible child: sibling experiences of growing up with a brother with severe haemophilia - an interpretative phenomenological analysis', Haemophilia, 25 (1), pp. 84-91.en_US
dc.identifier.issn1351-8216
dc.identifier.doi10.1111/hae.13659
dc.identifier.urihttp://hdl.handle.net/10545/623446
dc.description.abstractIntroduction: Haemophilia is an inherited chronic condition that causes bleeding in the joints and soft tissue. Healthy siblings growing up in the family of a person with haemophilia can be affected socially and psychologically. Aim: To explore qualitatively the experiences of healthy siblings who grew up with a brother with severe haemophilia. Methods: 11 healthy siblings (10 female, 1 male) who grew up with a brother with severe haemophilia A were recruited via the Haemophilia Society UK. The verbatim transcripts of individual semi-structured interviews were analysed using interpretative phenomenological analysis (IPA). Results: Three themes were identified: lack of parental attention, negative social emotions, and carrier anxiety. Participants described having engaged in attention seeking behaviours because they felt they lacked parental attention. They also described the resentment, anger and frustration they felt about the effect their brothers’ haemophilia had on their lives. Female participants described the impact their carrier status or lack of it had on their lives. Conclusion: These findings could be translated into better advocacy and support for siblings through haemophilia centres. More research is also needed on how healthy siblings are affected by haemophilia, including studies guided by family systems theory.en_US
dc.description.sponsorshipN/Aen_US
dc.language.isoenen_US
dc.publisherWileyen_US
dc.relation.urlhttps://onlinelibrary.wiley.com/doi/full/10.1111/hae.13659en_US
dc.rightsAttribution-NonCommercial-NoDerivs 3.0 United States*
dc.rights.urihttp://creativecommons.org/licenses/by-nc-nd/3.0/us/*
dc.subjectHaemophiliaen_US
dc.subjectSiblingsen_US
dc.titleThe invisible child: sibling experiences of growing up with a brother with severe haemophilia - an interpretative phenomenological analysis.en_US
dc.typeArticleen_US
dc.identifier.eissn1365-2516
dc.contributor.departmentUniversity of Derbyen_US
dc.identifier.journalHaemophiliaen_US
dcterms.dateAccepted2018-11-18


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