Open Collections

Swanson, Brittany Marie

University of British Columbia

In this phenomenological study, written by a phenylketonuric Master’s of Science in Nursing student, the culture surrounding Phenylketonuria and mental health is explored. The purpose of this study is to increase understanding about how people with phenylketonuria (PKU) experience the culture surrounding their mental health. Mental health problems are common among people with PKU, and there is limited peer-reviewed information addressing patients’ experiences of that mental health and of the care surrounding those problems. The voice of the patient with phenylketonuria is nearly absent in the literature, so in this study four adult participants, all attending Adult Metabolic Clinics in Western Canada, provide narrative interviews that undergo a phenomenological analysis to discover the core themes and the essence of the patient experience. The overarching theme is that there is a general feeling of unsafety around mental health for the participants. This unsafety is infused into the culture and into some taken-for-granted practices surrounding the individuals; it has a considerable impact on their lives. The people with phenylketonuria and their lived experiences have largely been overlooked when developing care models as there is limited research that observes this perspective, and this has contributed to continued and harmful taken-for-granted practices. People with phenylketonuria have a greater chance of having their points of views considered in important life influencing care decisions when researchers push forth pieces enunciating patient voice into the literature expanse; this literature expanse, which currently lacks patient input is what informs healthcare providers’ approaches to prescribing and helping to manage this daily, way-of-life therapy.

Text

2023-01-09

Attribution-NonCommercial-NoDerivatives 4.0 International

http://hdl.handle.net/2429/83615

Nursing

University of British Columbia

UBCO

http://creativecommons.org/licenses/by-nc-nd/4.0/