None listed
Conditions
Brief summary
Phenylketonuria (PKU) is a rare Inborn Error of Metabolism (IEM) with an incidence of approximately 1 in 10 - 15,000. Prior to the advent of newborn screening and effective dietary treatments, PKU caused a severe neurodevelopmental phenotype marked by global developmental delay, severe intellectual impairment, and seizures. Early diagnosis from newborn screening and introductions of dietary interventions prevent these severe neurological manifestations. Despite this, neuropsychological complications of PKU are observed when control is suboptimal, which include reduced executive function, attention deficit, decreased processing speed, cognitive impairment and disturbances in emotion and behaviour. Neuro-disabilities are thus a key phenotype amongst the PKU cohort when their metabolic control is suboptimal. This project is aimed at exploring practical tools to improve our management outcomes for children and families living with this rare chronic disease. We hypothesise that participating in a brief evidence-based parenting intervention (Triple P), when compared to baseline, will improve progress towards child behaviour/parenting goals, improve children’s quality of life, decrease parent-reported use of ineffective parenting practices, increase parent self-efficacy, reduce parent-reported child behavioural problems, reduce parenting stress, and improve children’s blood Phe levels.
Interventions
"Positive Parenting for Healthy Living Triple P" is a brief parent education and skills-training program that combines parenting information about child behaviour and illness management with the provision of illness relevant information. The intervention consists of two, 2-hour parent discussion group sessions designed to target the direct and indirect pathways in which parenting can impact on child outcomes - i.e. parenting practices, and parenting confidence and stress. Sessions are held one w
"Positive Parenting for Healthy Living Triple P" is a brief parent education and skills-training program that combines parenting information about child behaviour and illness management with the provision of illness relevant information. The intervention consists of two, 2-hour parent discussion group sessions designed to target the direct and indirect pathways in which parenting can impact on child outcomes - i.e. parenting practices, and parenting confidence and stress. Sessions are held one week apart and will be delivered either face-to-face or via telehealth. Program content draws on the theoretical principles that form the basis of the well-established Triple P program, which is a preventively orientated parenting and family support strategy derived from social-learning, functional analysis, and cognitive-behavioural principles. The intervention will be delivered by clinical psychologists and nurses who are accredited Triple P providers.
Sponsors
Ms Anita Inwood
Study design
Allocation
Non-randomised trial
Primary purpose
Educational / counselling / training
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
Parents of 2- to 12-year-old children with PKU who require a protein restricted diet and supplementation of a phenylalanine-free amino acid formula and attending outpatient clinics at the Lady Cilento Children's Hospital (Brisbane).
Exclusion criteria
The child has a disability. The child is under the care of Department of Communities (the State). The parents have difficulties in reading an English newspaper. The parents have a disability affecting cognition. The parents are currently seeing a professional for the child’s behaviour difficulties. The parents are currently receiving psychological help or counselling. The parents have previously completed Triple P.
Outcome results
None listed