Parenting a child with Phenylketonuria (PKU): An exploration of the psychological impact on parents and parenting experience

Abstract

This thesis focused on the psychological impact and parental experience of caring for achild with an inherited metabolic disorder. Due to treatment advances and earlyidentification, many children diagnosed with inherited metabolic disorders have afavourable prognosis as treatment can prevent many of the most severe consequences.This outcome, however, requires significant input from parents to prevent associatedneurological and physical impairment by adhering to strict management regimes.Research has indicated that this is likely to have a psychological impact on parents, butlittle is known about the further impact on parenting.Paper 1 provides a comprehensive literature review on the available evidence regardingthe psychological impact on parents of caring for a child with an inherited metabolicdisorder. Findings indicated that the diagnosis had a lasting psychological impact onparents, although in most cases this is not clinically significant. Ongoing psychologicalimpact varied by the mode of diagnosis, severity of the disorder and perceived careburden. Included studies reported that parents who reported a more significantpsychological impact were more likely to show greater levels of concern about theirchild's disorder and use less adaptive parenting strategies. Implications for health careprofessionals working with parents are discussed.Paper 2 provides an interpretative phenomenological analysis of the experience ofparents caring for a child with a specific inherited metabolic disorder, phenylketonuria(PKU). Seven parents of children with PKU were interviewed about their experiences ofparenting their child. Three main themes emerged: control, striving for normality andacceptance as a continuum. Links between the themes were explored to outline aprocess that parents move through and key implications for clinical practice areidentified.Paper 3 provides a critical reflection of the research process and examines the strengthsand limitations of both papers.

Date of Award	31 Dec 2016
Original language	English
Awarding Institution	The University of Manchester
Supervisor	Anja Wittkowski (Supervisor) & Debbie Smith (Supervisor)