Parenting a Child with Phenylketonuria: An Investigation into the Factors That Contribute to Parental Distress

Abstract

Phenylketonuria (PKU) is an inherited metabolic condition that can lead to the onset of intellectual disabilities if not strictly managed through a low-protein diet. Parents are responsible for supervising their child's treatment for PKU, which may impact on their experience of distress. This cross-sectional study aimed to identify the factors that contribute to distress in parents who care for a child with PKU, distinct from parents in the general population. Thirty-eight parents of children and adolescents with PKU and 32 parents in the general population completed the questionnaires measuring parental psychological resilience, child behaviour problems, perceived social support and distress. Parents of children with PKU also completed measures of their child's care dependency and behaviour related to developmental and intellectual disabilities. The findings revealed no statistically significant differences in distress between the groups, but parents of children with PKU reported more child behaviour problems. Multiple regression analysis identified that parental psychological resilience and child anxious behaviour explained 35% of the variance in distress for parents of children with PKU. By comparison, parental psychological resilience and generic child behaviour only accounted for 19% of the variance in distress for parents in the general population. This has implications for developing interventions in clinical settings that aim to reduce parents' distress by enhancing their psychological resilience and supporting them to manage child behaviour difficulties, particularly anxious behaviour. Future research should include larger, more diverse samples and use longitudinal study designs.

Psychosocial functioning in children with phenylketonuria: Relationships between quality of life and parenting indicators

“…Notably, parents report higher intensity of childhood behaviour problems compared to healthy controls (Jusiene andKučinskas, 2004, Ambler et al, 2018). Parents of children with chronic health conditions also tend to experience more psychosocial problems and poorer health themselves compared to parents of healthy children (Pinquart, 2018), and some have identified elevated levels of parental distress for parents of children with PKU (Vetrone et al, 1989, Kazak et al, 1988, Gunduz et al, 2015, Medford et al, 2017, Ionio et al, 2018 although others report minimal differences (Kazak et al, 1988, Ambler et al, 2018.…”

Mealtime Anxiety and Coping Behaviour in Parents and Children during Weaning in PKU: A Case-Control Study

“…In theory, the more coping behaviours used by parents, the less stress they will experience, so higher CHIP scores reflect more adaptive styles of coping [11]. Therefore, in line with previous research into parental anxiety in PKU [17], mothers of children with PKU seem to adapt to the additional stresses that they experience during the weaning period. They are most likely to cope by relying on family (including grandparents) [4], being optimistic [3] and gaining understanding of PKU through communication with their specialist dietitians.…”

“…In PKU, there is an association between parent stress, anxiety and depression [3]. Some studies report a higher incidence in parents (particularly mothers) of children with PKU compared with parents of healthy controls, negatively impacting on quality of life and psychosocial wellbeing [15], others report no significant difference [16,17]. Whilst this study found no overall differences in anxiety, there was a suggestion that mothers of children with PKU experienced more emotive or subjective symptoms (as opposed to physiological symptoms), specifically at 15 months of age, compared to controls.…”

Fenilketonüri Kampının Fenilketonürili Adölesanların Bilgi ve Davranışları Üzerindeki Etkileri

“…It has been stated that, in the treatment of phenylketonuria, going beyond focusing on metabolic control, adopting a holistic approach that supports the psychosocial wellbeing and quality of life of the child and family can help achieve more productive and successful results (14). Healthcare camps, which can be considered as part of the holistic approach, are thought to be beneficial because PKU reduces the quality of life of the patient and his/her family (15).…”