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How do you define recovery? A qualitative study of patients with eating disorders, their parents, and clinicians

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.

Tue, 01/10/2023 - 16:24

Being a dad to a child with Down’s syndrome: Overcoming the challenges to adjustment

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.

Tue, 01/10/2023 - 16:21

About my Child: measuring 'Complexity' in neurodisability. Evidence of reliability and validity

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.

Tue, 01/10/2023 - 16:12

Discovering dad: paternal roles, responsibilities, and support needs as defined by fathers of children with complex cardiac conditions perioperatively

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.;

Tue, 01/10/2023 - 16:10

The economic costs and its predictors for childhood autism spectrum disorders in Ireland: How is the burden distributed?

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.

Tue, 01/10/2023 - 16:06

Evaluation of family management of an adolescent with sickle cell disease

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.

Tue, 01/10/2023 - 16:03

Improving remote lifestyle intervention studies in children: Participant and caregiver feedback of the smart heart study

Objectives: We sought to describe and analyze the quantitative and qualitative feedback obtained from participants and their caregivers of the Smart Heart study, a successful 12-month lifestyle intervention for children with overweight or obesity and congenital heart disease that provided remote lifestyle counseling, to improve future lifestyle interventions in children.

Tue, 01/10/2023 - 16:00

Family-Provided Health Care for Children With Special Health Care Needs

Background and Objectives: Many children with special health care needs (CSHCN) receive health care at home from family members, but the extent of this care is poorly quantified. This study's goals were to create a profile of CSHCN who receive family-provided health care and to quantify the extent of such care.

Tue, 01/10/2023 - 15:57

The Effectiveness of a Brief Sexuality Education Intervention for Parents of Children with Intellectual and Developmental Disabilities

Parents are often responsible for educating their child about sexuality and relationships, yet many parents may not be aware of the sexuality-related topics to teach. Sexuality education is critical for children with autism and intellectual disabilities, who are often vulnerable to sexual abuse and other sexual behavior outcomes. Families teaching sexuality can help their child learn about healthy hygiene, interactions, and relationships.

Tue, 01/10/2023 - 15:54

Parent Perceptions of How Nurse Encounters Can Provide Caring Support for the Family in Early Acute Care After Children's Severe Traumatic Brain Injury

Objective: A child's severe traumatic brain injury (TBI) creates a family crisis requiring extensive cultural, informational, psychological, and environmental support. Nurses need to understand parents' expectations of caring in early acute care so they can tailor their attitudes, beliefs, and behaviors appropriately to accommodate the family's needs.

Tue, 01/10/2023 - 15:51

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