A Co-Designed Online Education Resource on Gastrostomy Feeding for Parents and Caregivers to Support Clinical Care.

Objective: Children with complex needs and severe disability may undergo gastrostomy insertion to support feeding difficulties. Parent education programs are critical components of clinical care pathways but there is little information on parent-reported educational needs. This study describes the collaborative process that yielded a resource to assist parents considering gastrostomy tube placement for their children, and the evaluation of the resource.

Enabling successful life engagement in young people with ADHD: new components beyond adult models of recovery.

Purpose: To examine the lived experiences of young people successfully managing life with ADHD and investigate the applicability of adult models of Recovery to these individuals.

Methods: Twenty-seven young people aged 15-31 years participated in qualitative interviews. Participants' success was indicated by employment, school attendance, absence of acute mental health episodes, or absence of chronic alcohol or drug use.

Modifiable child and caregiver factors that influence community participation among children with Down syndrome.

Purpose: To investigate modifiable child and caregiver factors influencing community participation among children with Down syndrome.

Methods: Cross-sectional data from a study investigating quality of life of children with intellectual disability were analysed. Participants were caregivers of 89 children with Down syndrome (54 females; 83 school attenders) (mean age 11 y 1 mo; SD 4 y 1 mo).

Comorbidities and quality of life in children with intellectual disability.

Background: Many children with intellectual disability live with medical comorbidities. This study examined the impacts of comorbidities on quality of life (QOL) of children with intellectual disabilities and whether impacts varied with caregiver perceptions that medical needs had been met.

Methods: Primary caregivers of 447 children (aged 5-19 years) with an intellectual disability reported on their child's medical comorbidities and the extent to which they perceived their child's medical needs had been met in a cross-sectional observational study.

Functioning, participation, and quality of life in children with intellectual disability: an observational study.

Aims: To investigate associations between functioning, community participation, and quality of life (QoL) and identify whether participation mediates the effects of functioning on QoL.

Method: The caregivers of 435 children (211 females, 224 males; mean age 12y; SD 3y 11mo; age range 5-18y) with intellectual disability and autism spectrum disorder, cerebral palsy, Down syndrome, or Rett syndrome reported on their child's functioning (dependence for managing personal needs, mobility, communication, eye contact when speaking), frequency of participation, and QoL. Linear regression and mediation analyses were used to evaluate the relationships between child functioning, participation, and QoL.

Reliability of the Quality of Life Inventory-Disability Measure in Children with Intellectual Disability.

Objective: To assess responsiveness and reproducibility using the estimates of test-retest reliability for the Quality of Life Inventory-Disability (QI-Disability), accounting for changes in child health and parental stress.

Method: Quality of Life Inventory-Disability was administered twice over a 1-month period to a sample of 55 primary caregivers of children (aged 5-19 years) with intellectual disability. Caregivers also reported their child's physical and mental health and completed a 4-item Perceived Stress Scale to assess parental stress.

Content validation of the Quality of Life Inventory-Disability.

Background: Focus is shifting to better understand the lived experiences of children with intellectual disability in relation to their quality of life (QOL). Yet no available QOL measures are grounded in the domains important for this population. We previously conducted qualitative parent caregiver interviews identifying QOL domains in children with intellectual disability to constitute a new measure of QOL.

Powered standing wheelchairs promote independence, health and community involvement in adolescents with Duchenne muscular dystrophy.

Duchenne muscular dystrophy is a common neuromuscular disorder involving progressive muscle weakness. A powered wheelchair standing device provides capacity to stand despite increasing muscle weakness. This study used qualitative methods to explore how adolescents with Duchenne muscular dystrophy used a powered wheelchair standing device in their daily lives.

Psychometric properties of the Quality of Life Inventory-Disability (QI-Disability) measure.

Purpose: Children with intellectual disability encounter daily challenges beyond those captured in current quality of life measures. This study evaluated a new parent-report measure for children with intellectual disability, the Quality of Life Inventory-Disability (QI-Disability).

Methods: QI-Disability was administered to 253 primary caregivers of children (aged 5-18 years) with intellectual disability across four diagnostic groups: Rett syndrome, Down syndrome, cerebral palsy or autism spectrum disorder.

Parent-observed thematic data on quality of life in children with autism spectrum disorder.

Domains of quality of life in children with autism spectrum disorder have not previously been explored and there has been no quality of life measure developed for this population. Our study investigated parent observations to identify the domains important to children with autism spectrum disorder who also had an intellectual disability. In all, 21 parents (19 mothers, 2 fathers) of children with autism spectrum disorder (aged 6-17 years) participated in a qualitative study to discuss their child's quality of life.

Qualitative Analysis of Parental Observations on Quality of Life in Australian Children with Down Syndrome.

Objective: There are many challenges to health, functioning, and participation for children with Down syndrome; yet, the quality-of-life (QOL) domains important for this group have never been clearly articulated. This study investigated parental observations to identify QOL domains in children with Down syndrome and determined whether domains differed between children and adolescents.

Methods: The sample comprised 17 families whose child with Down syndrome was aged 6 to 18 years.

Determinants of sleep disturbances in Rett syndrome: Novel findings in relation to genotype.

Rett syndrome is a rare but severe neurological disorder associated with a mutation in the methyl CpG binding protein 2 (MECP2) gene. Sleep problems and epilepsy are two of many comorbidities associated with this disorder. This study investigated the prevalence and determinants of sleep problems in Rett syndrome using an international sample.

Conceptualizing a quality of life framework for girls with Rett syndrome using qualitative methods.

Rett syndrome is a neurodevelopmental disorder mainly affecting females and associated with a mutation on the MECP2 gene. There has been no systematic evaluation of the domains of quality of life (QOL) in Rett syndrome. The aims of this study were to explore QOL in school-aged children with Rett syndrome and compare domains with those identified in other available QOL scales.