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. 2018 Sep;27(5):1074-1086.
doi: 10.1007/s10897-018-0227-7. Epub 2018 Feb 21.

Parenting a Child with Phenylketonuria (PKU): an Interpretative Phenomenological Analysis (IPA) of the Experience of Parents

Katie Carpenter  1 , Anja Wittkowski  2   3   4 , Dougal J Hare  5 , Emma Medford  1 , Stewart Rust  6 , Simon A Jones  6 , Debbie M Smith  1
Affiliations

Parenting a Child with Phenylketonuria (PKU): an Interpretative Phenomenological Analysis (IPA) of the Experience of Parents

Katie Carpenter et al. J Genet Couns. 2018 Sep.

Abstract

Phenylketonuria (PKU) is a rare inherited metabolic disorder which can cause neurological damage if left untreated. PKU is identified through newborn screening in developed countries, and treatment begins immediately to prevent these severe consequences. When a child is diagnosed, parents must assume immediate responsibility for the management of PKU and prevention of neurological damage. Quantitative studies have identified significant psychosocial stressors for parents, but little is known about how the parents experience this process. This study aimed to explore the experiences of parents of children with PKU under the age of two. It is the first study to examine these experiences in this way. Seven parents were interviewed about their experiences, and interpretative phenomenological analysis was used to analyse the data. Three main themes were identified: control, striving for normality and acceptance of PKU as a continuum. Links between the themes and processes underpinning the results were explored with relation to existing literature and theories from a clinical psychology perspective. The role of acceptance of PKU was central to the parent's experiences. Clinical implications and suggestions for further research are discussed.

Keywords: Experience; Interpretative phenomenological analysis; Parents; Phenylketonuria; Qualitative.

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Conflict of interest statement

Conflict of Interest

Katie Carpenter, Anja Wittkowski, Dougal Hare, Emma Medford, Stewart Rust, Simon Jones and Debbie Smith declare that they have no conflict of interest.

Human Studies and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all participants for their involvement in the study.

Animal Studies

No animal studies were carried out by the authors for this article.

Figures

Fig. 1
Fig. 1
Diagrammatic representation of superordinate themes
See this image and copyright information in PMC

References

    1. Abidin RR. Introduction to the special issue: the stresses of parenting. Journal of Clinical Child Psychology. 1990;19(4):298–301. doi: 10.1207/s15374424jccp1904_1. - DOI
    1. Al Hafid N, Christodoulou J. Phenylketonuria: a review of current and future treatments. Translational Pediatrics. 2015;4(4):304. - PMC - PubMed
    1. Awiszus D, Unger I. Coping with PKU: results of narrative interviews with parents. European Journal of Pediatrics. 1990;149(1):45–51. doi: 10.1007/BF02126299. - DOI - PubMed
    1. Bilginsoy C, Waitzman N, Leonard CO, Ernst SL. Living with phenylketonuria: perspectives of patients and their families. Journal of Inherited Metabolic Disease. 2005;28(5):639–649. doi: 10.1007/s10545-005-4478-8. - DOI - PubMed
    1. Blackledge JT, Hayes SC. Using acceptance and commitment training in the support of parents of children diagnosed with autism. Child & Family Behavior Therapy. 2006;28(1):1–18. doi: 10.1300/J019v28n01_01. - DOI