The invisible child: sibling experiences of growing up with a brother with severe haemophilia - an interpretative phenomenological analysis.

Journal article

Tregidgo, Catherine and Elander, James 2018. The invisible child: sibling experiences of growing up with a brother with severe haemophilia - an interpretative phenomenological analysis. Haemophilia. https://doi.org/10.1111/hae.13659
AuthorsTregidgo, Catherine and Elander, James
Abstract

Introduction: 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.

KeywordsHaemophilia; Siblings
Year2018
JournalHaemophilia
PublisherWiley
ISSN1351-8216
1365-2516
Digital Object Identifier (DOI)https://doi.org/10.1111/hae.13659
Web address (URL)http://hdl.handle.net/10545/623446
http://creativecommons.org/licenses/by-nc-nd/3.0/us/
hdl:10545/623446
Publication dates18 Dec 2018
Publication process dates
Deposited30 Jan 2019, 13:01
Accepted18 Nov 2018
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Attribution-NonCommercial-NoDerivs 3.0 United States

ContributorsUniversity of Derby
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