Journal article

Background: Fetal alcohol spectrum disorder (FASD) is a common neurodevelopmental condition. Given that individuals with FASD can experience lifelong challenges, one field of research that could be applicable is the paediatric chronic health literature.

Aims: The aim of the current study was to investigate the utility of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module, designed to measure the impact of paediatric chronic health conditions on caregivers and families.

Objectives: To estimate the direct and indirect costs in families with a child with acute lymphoblastic leukaemia (ALL) in China.

Purpose: Proxy reports of health-related quality of life (HRQoL) are commonly used in pediatric oncology. However, it is not known if caregivers' reports differ. This study therefore aims to compare paternal and maternal proxy reports, and explore determinants of couple disagreement (sociodemographic and medical characteristics, and parental QoL and distress).

Purpose: To identify common or unique family-healthcare team interactions during acute hospitalization for pediatric patients with a traumatic brain injury (TBI) using a life course trajectory (LCT) theoretical approach.

Background: The interest in outcome measurement in pediatric palliative care is rising. To date, the majority of studies investigating relevant outcomes of pediatric palliative care focus on children with cancer. Insight is lacking, however, about relevant outcome domains for children with severe neurological impairment and their families.

Aim: The aim of this study was to identify meaningful outcome domains of pediatric palliative care for children with severe neurological impairment and their families.

Objective: To check the knowledge informal caregivers of children with cleft lip and palate acquire about the postoperative care of cheiloplasty and palatoplasty through the use of an educational video.

There is a possibility that front-line services, particularly out-of-hours services, are not accessible to some parents. The aim of this service evaluation was to gain a better understanding about visits to one emergency department (ED) in the south of England by children and their parents or carers. The specific focus was to elucidate the reasons behind frequent ED attendance and indicate a potential redesign of services.Semi-structured interviews were conducted with 13 parents.

Objective: Recovery from an eating disorder (ED) may be defined differently by different stakeholders. We set out to understand the definition of ED recovery from the perspective of patients, their parents, and clinicians.

Background: Historically, research exploring the impact of having a child with an Intellectual Disability (ID), has focussed exclusively on mothers. The present study aimed to investigate fathers’ experiences of parenting a child with Down's syndrome (DS), their contributions, influences on family functioning and inclusion in their child's support provision.

Background: About my Child, 26-item version (AMC-26) was developed as a measure of child health 'complexity' and has been proposed as a tool for understanding the functional needs of children and the priorities of families.