Phenylketonuria--the lived experience

Abstract

Aim: This study explored the lived experience of phenylketonuria (PKU) for the New Zealand adult and its relevance for issues of treatment adherence.

Method: In-depth qualitative interviews were conducted with eight New Zealand adults with early-treated PKU regarding their experiences of living with PKU. The interviews were transcribed, and then analysed using grounded theory. A review of relevant medical, scientific and social science literature placed this analysis in a broader context.

Results: A number of consistent themes emerged as characteristic of the participants' life experiences, including a chronic uncertainty existing on several levels, the challenges posed by the maintenance of interpersonal relationships with respect to the PKU diet, and a basic incompatibility between the PKU diet and many lifestyle demands. Social science commentary on the topics of risk management, stigma, and other types of "dieting" experiences further elucidates these themes.

Conclusion: Based on the findings of this research, medical practitioners may be able to better tailor their services for, and interactions with, the adult PKU community, for example, by facilitating self-management, conveying realistic expectations of metabolic control, and increasing the volume of information directed to PKU adults.