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Journal of Genetic Counseling

, Volume 25, Issue 5, pp 1002–1009 | Cite as

“I Feel Lucky” – Gratitude Among Young Adults with Phenylketonuria (PKU)

  • Plata Sofie Diesen
Original Research

Abstract

If persons with phenylketonuria (PKU) do not start a protein restricted diet in early infancy, they will suffer severe brain damage. Previous qualitative research on adults and adolescents with PKU has identified stigmatization, uncertain risk perceptions, considerable time spent on preparing food, and incongruence between the PKU diet and certain lifestyle demands. The aim of this study was to explore young and early treated Norwegian adults’ experiences, by conducting in-depth interviews in 2011 with 11 adults with PKU, aged 20–30. Being the first qualitative study on people with PKU in Norway, the process was inspired by grounded theory. All participants reflected on their own health and existence by expressing positive counterfactual thoughts. They considered themselves lucky to have had parents who had managed the diet, they were grateful for the time and place they were born, and for information and treatment availability, although the results also show some ambiguous attitudes towards the hospital which provided the treatment. The expression of gratitude in association with having PKU suggests a major positive coping strategy. It contributes to a more holistic understanding of the experiences and attitudes of young, Norwegian adults with PKU, as it provides a counterweight to the negative experiences.

Keywords

Phenylketonuria PKU Rare disorders Lived experience Gratitude Coping mechanism Qualitative research 

Notes

Acknowledgments

I would like to express my gratitude to the participants in this study, who shared their personal thoughts and experiences and made the project possible. I thank my colleagues Charlotte von der Lippe, Ingrid Wiig and Susan Jane Sødal, who have been very helpful in the process, and a special thanks to Lena Fauske for her useful comments.

Compliance with Ethical Standards

Conflict of Interest

The author declares that she has no conflict of interest.

Human Studies and Informed Consent

All procedures performed in the study were in accordance with the ethical standards of the institutional and national research committee, and with the 1964 Helsinki declaration and its later amendments. Informed consent was obtained from all individual participants included in the study.

Animal Studies

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

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Copyright information

© National Society of Genetic Counselors, Inc. 2016

Authors and Affiliations

  1. 1.Center for Rare DisordersOslo University HospitalOsloNorway
  2. 2.Center for Rare DisordersOslo Universitetssykehus HF, RikshospitaletOsloNorway

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