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Transition experiences between hospital‐ and home‐care for parents of children with hypoplastic left heart syndrome

Purpose: Children with hypoplastic left heart syndrome (HLHS) experience numerous vulnerabilities during transitions from hospital to home during their first year of life. This paper examines the parents’ responses to the situations they experience during the initial interstage transition as described through illness blogs.

Tue, 01/17/2023 - 16:44

Factors Affecting the Health of Caregivers of Children Who Have an Intellectual/Developmental Disability

There are a growing number of children with an ID/developmental disability. As well, there is evidence of poor health in the caregivers of these children. This article describes a narrative review of the literature regarding the mental and physical health of caregivers of children with ID/developmental disability. The review examined 162 papers. Twenty‐three different factors were identified that may have an effect on the health of these caregivers.

Tue, 01/17/2023 - 16:34

Concerns and Needs of Support Among Guardians of Children on Cancer Treatment in Dar es Salaam: A Qualitative Study

Background: Cancer in children in Tanzania is a concerning health issue, yet there is a shortage of information about the experiences of the guardians of children who receive cancer treatment. Objective: To explore concerns and needs of support among guardians of children on cancer treatment in Dar es Salaam, Tanzania.

Tue, 01/17/2023 - 16:19

An intensive family-based treatment guided intervention for medically hospitalized youth with anorexia nervosa: Parental self-efficacy and weight-related outcomes

Recent studies suggest the efficacy of family-based treatment (FBT) among youth with anorexia nervosa (AN) in intensive treatment settings. This study aimed to assess weight outcomes in youth who received an FBT intervention while hospitalized for medical complications of AN. Parental self-efficacy among participating caregivers was also measured. Post-discharge weights of 49 participants were compared with weights of 44 youth who were hospitalized prior to the provision of the FBT intervention.

Tue, 01/17/2023 - 16:11

Exploring neurodevelopmental outcome measures used in children with cerebral malaria: the perspectives of caregivers and health workers in Malawi

Background: Progress has been made in tackling malaria however there are still over 207 million cases worldwide, the majority in children. As survival rates improve, numbers of children with long-term neurodisabling sequelae are likely to increase. Most outcome studies in cerebral malaria (CM) have focused only on body function and structure and less on outcomes within the broader framework of the International Classification of Functioning and Disability (ICF).

Tue, 01/17/2023 - 16:03

Administration of Home Intravenous Chemotherapy to Children by their Parents. Parents' Evaluation of a Nationwide Program

Objectives: Caring for a child with cancer can disrupt family life and financial stability, in addition to affecting the child's social, emotional, and educational development. Health care providers must consider ways to minimize the negative impact of illness and hospitalization on the child and family. This study evaluates a nationwide initiative to educate and support parents to administer chemotherapy to their child in their home.

Tue, 01/17/2023 - 15:54

Community participation of families of children with profound intellectual and multiple disabilities in South Africa

Background: Families struggle to support family members with profound intellectual and multiple disabilities (PIMD), especially in low resourced settings where formal services may not be available.

Method: The adapted Family Community Participation survey, measuring perceptions of community participation, was administered to 67 primary caregivers of children with PIMD in Cape Town by community-based rehabilitation workers.

Tue, 01/17/2023 - 15:41

SAFE, a new therapeutic intervention for families of children with autism: a randomised controlled feasibility trial

Objectives: To establish the feasibility of a definitive randomised controlled trial of Systemic Autism-related Family Enabling (SAFE), an intervention for families of children with autism. 

Design: A randomised, controlled, multicentred feasibility study.; Setting: Participants were identified from three National Health Service (NHS) diagnosing centres in Plymouth and Cornwall and a community pathway.

Tue, 01/17/2023 - 15:37

Overcoming the challenges of caring for a child with foetal alcohol spectrum disorder: a Pilbara community perspective

Introduction: Foetal alcohol spectrum disorder (FASD) is a neurodevelopmental impairment that may result in individuals experiencing poor development, cognitive issues and disruptive behaviours. In Australia, the prevalence of FASD is unknown; however, two studies have revealed the prevalence of FASD in high risk populations in Western Australia.

Tue, 01/17/2023 - 15:31

The Cascading Coaching Model for Supporting Service Providers, Caregivers, and Children

Teaching caregivers to support their young children's language development is recommended as an effective early language intervention, and caregiver-implemented interventions are recognized as evidence-based. However, as the natural change agents for training and coaching caregivers, early intervention (EI) service providers are in need of professional development to effectively coach caregivers to use interventions with their child.

Tue, 01/17/2023 - 15:26

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