An investigation into parental well-being and child behaviour in Phenylketonuria (PKU)

This thesis comprises three papers; a systematic review, empirical study and critical review. The systematic review aimed to identify the factors that are associated with well-being in parents who care for a child with PKU. Six electronic databases were searched (Scopus, PsycINFO, Medline, Embase, EBSCO Cinahl and Web of Science) of papers published between 1965 and November 2016. The search yielded 189 articles; 15 were included in the final review. Quality ratings revealed six studies scored within the ‘moderate’ range and nine within the ‘high’ range. Demographic variables were the most widely reported factor associated with parental well-being, as identified by seven studies. Social support was the next most reproducible factor associated with well-being, as identified by six studies. The clinical implications of these findings are discussed and recommendations are made for future research. The aims of the empirical study were to identify what factors predict distress for parents who care for a child with PKU and to examine the incidence of behaviour problems in children with the condition. Thirty-eight parents of children and adolescents (up to and including 18 years old) with PKU and 32 parents in the general population participated in the study. Parents in both groups completed self-report measures of psychological resilience, child behaviour, perceived social support and psychological distress. Parents of children with PKU also completed measures of their child’s care dependency and behaviour related to developmental or intellectual disabilities. Findings from a multiple regression analysis showed that child behaviour related to anxiety and psychological resilience predicted 35% of the variance in distress scores for parents of children with PKU, whereas child behaviour and resilience predicted 19% of the variance in distress for parents in the general population. The implications of these findings are discussed with reference to further research and clinical practice