English

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.

Individuals with neurogenetic syndromes comprise a large subset of the population of people with intellectual disability. Members of neurogenetic syndrome communities, including self-advocates, caregivers, family members, and service providers, can be valuable partners in translational research and its application to intervention and advocacy.

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.

Background: Understanding perceptions of family caregivers' roles and responsibilities regarding their child with complex cardiac needs has potential to help care teams better support parents. Paternal experience has been under-explored in pediatric cardiac cohorts.;

Autism spectrum disorders are associated with a substantial economic burden; although little is known about the relationship between state and family out-of-pocket expenditure. The objective of this study is to estimate the societal cost of childhood autism spectrum disorders and explain the variation in costs between state and family out-of-pocket expenditure.

Objective: to describe the experience of the family management of an adolescent with sickle cell disease.

Method: case study, which used the theoretical model of the Family Management Style Framework (FMSF). Data was collected through interviews with the mother and documental analysis and, previously, being submitted to hybrid thematic analysis.