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

OBJECTIVE: This study aimed to assess the impact of phenylketonuria (PKU) and its treatment on parent and child health-related quality of life (HRQoL) and to identify the parenting-related correlates of parent and child HRQoL, as well as metabolic control. METHODS: Eighteen mothers of 2- to 12-year-old children with PKU participated and completed a series of self-report questionnaires including the PKU Impact and Treatment Quality of Life Questionnaire (PKU-QOL). RESULTS: Mothers reported that the most significant impact of PKU on HRQoL was in relation to the impact of their child's anxiety during blood tests on their own HRQoL and guilt related to poor adherence to dietary restrictions and supplementation regimens. Higher reported intensity of child emotional and behavioural difficulties and parenting stress were associated with higher scores for PKU symptoms on the PKU-QOL, higher scores for emotional, social, and overall impact of PKU, and higher scores for the impact of dietary restriction. Where mothers reported greater use of overreactivity as a parenting strategy, children tended to have better lifetime phenylalanine levels; however, the overall impact of PKU and the impact of supplement administration on mothers' HRQoL were worse for these families. CONCLUSIONS: These findings have implications for a holistic family-centred approach to the care of children with PKU and their families.

Relationships between parenting and illness factors and child behaviour difficulties in children with asthma and/or eczema.

Chronic health conditions such as asthma and eczema are common and are associated with significant psychosocial sequelae for children and their families. A number of parenting variables have been implicated in child health outcomes; however, there are gaps in understanding of the relationships between parenting and child adjustment in the context of chronic illness. This study examined the role that modifiable parenting factors including parenting style, self-efficacy, and adjustment play in explaining general and illness-related child behaviour and emotional problems. Parents (N = 107) of children diagnosed with asthma only (n = 22), eczema only (n = 59), or both conditions (n = 26) completed a range of parenting and child adjustment measures. The majority of the modifiable parenting factors (parents' self-efficacy with managing their child's internalising, asthma-related, and eczema-related behaviours; parent adjustment; and use of ineffective parenting strategies) made significant contributions to explaining variance child behaviour. Parenting variables consistently explained greater proportions of variance in general and illness-related child behaviour difficulties compared to demographic and illness factors and represent important intervention targets.

Effects of comorbid asthma and eczema on child and family quality of life.

Paediatric chronic health conditions are associated with poorer psychological wellbeing and quality of life for children and families. This study investigated differences in child and parent/family quality of life between families of children with asthma only, eczema only, or both asthma and eczema, and tested predictors of child and parent/family quality of life. A convenience sample of 106 families completed parent-report measures of child and parent/family quality of life, child emotional and behavioural difficulties, parent adjustment and parenting practices. Between-groups ANOVAs indicated no differences for child quality of life, whereas parent/family quality of life was worse for those with eczema only compared to asthma only. Multiple linear regression revealed that child emotional difficulties predicted worse child quality of life, whereas worse parent adjustment, child emotional difficulties and eczema only (compared to both asthma and eczema) predicted worse parent quality of life. Results suggest that families of children with eczema may be at particular risk for impaired parent/family quality of life. Interventions that take a family-centred approach to improving child and parent adjustment should be investigated as an adjunct to medical treatment to reduce the impact of chronic health conditions on quality of life for children and families.

Effects of illness representation, perceived quality of information provided by the health-care professional, and perceived social support on depressive symptoms of the caregivers of children with leukemia.

The present study examined the effects of illness representation, perceived quality of information provided by the health-care professional, and perceived social support on the depressive symptoms of the caregivers of children with leukemia. The sample was composed of 71 caregivers of children with leukemia living in Turkey. The obtained data were analyzed by path analysis. The results show that caregivers of children with leukemia experience higher levels of depressive symptoms when they have negative illness representation and lower levels of depressive symptoms when they perceive higher levels of social support. Moreover, they perceive higher social support when they perceive high quality of information provided by health-care professionals. It can be suggested that intervention programs which aim to increase caregivers' social support and change their illness representation in a positive way would be helpful for the caregivers showing depressive symptoms.