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Parenting a child with haemophilia while living in a non-metropolitan area

Parenting a child with haemophilia while living in a non-metropolitan area AbstractThe experience of living in a non-metropolitan area and parenting a child with haemophilia is relatively unknown. Using Interpretive Phenomenological Analysis (IPA), the following study explored the experiences of seven parents, from which four themes emerged: ‘bearing the brunt of diagnosis’ captures the impact of the diagnosis; ‘if you can’t help me, who can?’ reveals experiences with the health system; ‘tackling the challenge of treatment’ encompasses difficulties in adhering to the treatment regime; ‘I need you to understand’ reflects desires for others support and understanding. These themes should be considered when developing support systems and interventions for parents living in non-metropolitan areas. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png The Journal of Haemophilia Practice de Gruyter

Parenting a child with haemophilia while living in a non-metropolitan area

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Publisher
de Gruyter
Copyright
© 2015 Trudi Little, Esben Strodl, Simon Brown, Tara Mooney, published by Sciendo
eISSN
2055-3390
DOI
10.17225/jhp00066
Publisher site
See Article on Publisher Site

Abstract

AbstractThe experience of living in a non-metropolitan area and parenting a child with haemophilia is relatively unknown. Using Interpretive Phenomenological Analysis (IPA), the following study explored the experiences of seven parents, from which four themes emerged: ‘bearing the brunt of diagnosis’ captures the impact of the diagnosis; ‘if you can’t help me, who can?’ reveals experiences with the health system; ‘tackling the challenge of treatment’ encompasses difficulties in adhering to the treatment regime; ‘I need you to understand’ reflects desires for others support and understanding. These themes should be considered when developing support systems and interventions for parents living in non-metropolitan areas.

Journal

The Journal of Haemophilia Practice – de Gruyter

Published: Jan 1, 2016

References

  • Child-rearing practices toward children with hemophilia: The relative importance of clinical characteristics and parental emotional reactions
  • Prophylactic factor infusions for patients with hemophilia: Challenges with treatment adherence
  • Confronting the psychological burden of haemophilia
  • Reflecting on the development of interpretative phenomenological analysis and its contribution to qualitative research in psychology
  • The impact on parents of developments in the care of children with bleeding disorders
  • Parents of children with haemophilia – a transforming experience
  • Attitudes towards and beliefs about genetic testing in the haemophilia community: a qualitative study