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Caring for a cerebral palsy child: a caregivers perspective at the University Teaching Hospital, Zambia

Background: Cerebral palsy is a major cause of disability and most survivors are left with residual disability and are dependent on parents/caregivers for essential care. This study aimed to determine the experiences of parents/caregivers of cerebral palsy children receiving out-patient physiotherapy. Methods: A concurrent mixed methods was used to collect data in the present study.

Wed, 02/01/2023 - 17:15

Psychosocial recommendations for the care of children and adults with epidermolysis bullosa and their family: evidence based guidelines

Epidermolysis Bullosa (EB) is a group of rare genetic disorders resulting in skin fragility and other symptoms. Commissioned by DEBRA International and funded by DEBRA Norway, this evidence-bases guideline provides recommendations to optimise psychosocial wellbeing in EB.An international multidisciplinary panel of social and health care professionals (HCP) and people living with EB was formed. A systematic international literature review was conducted by the panel following the Scottish Intercollegiate Guidelines Network (SIGN) methodology.

Tue, 01/17/2023 - 16:32

Parenting in Serious Pediatric Illness: A Mixed Methods Study (GP768)

Objectives: Describe how parents prioritize parenting tasks and goals for their seriously ill and healthy children Illustrate how the process of trading-off one child's needs to meet those of another can contribute to parents' distress in serious pediatric illness.

Tue, 01/17/2023 - 09:06

Supporting the family of a child with a genetic condition

The health visitor has a fundamental role in supporting families with a child who has a genetic condition to encourage physical and emotional wellbeing, says Amy Noakes.

Mon, 01/16/2023 - 12:26

Family support and family and child-related outcomes among families impacted by disability in low- and middle-income countries: A scoping review

There is a growing interest in understanding the relationship between family support and family or child-related outcomes in high-income countries. However, this has received little attention in low- and middle-income countries. The purpose of this review was to explore the relationship between family support and family and child-related outcomes among families affected by disability in low- and middle-income countries. We conducted a scoping review of five databases using search terms related to 'family', 'support', 'child', and 'disability'.

Mon, 01/16/2023 - 12:23

Challenges, priorities, barriers to care, and stigma in families of people with autism: Similarities and differences among six Latin American countries

Lack of access to services and support is an important issue for people with autism, but in low- and middle-income countries there is a lack of data on this problem. The aims of this study were to describe the challenges and priorities, identify barriers to care, and map stigma among families of individuals with autism in Latin America.

Wed, 01/11/2023 - 16:45

Caring for the Caregiver: Supporting Families of Youth With Special Health Care Needs

Caregivers of youth with special health care needs (YSHCN) are a critical part of the health care team. It is important for pediatric providers to be cognizant of the burden and strain caregiving can create. This article will discuss the health, psychological, social, and financial effects of caregiving, as well as strategies to screen for caregiver strain among families of YSHCN. Caregivers of YSHCN, for example, are more likely to report poor health status and demonstrate higher rates of depression and anxiety.

Wed, 01/11/2023 - 13:48

Core outcome domains of pediatric palliative care for children with severe neurological impairment and their families: A qualitative interview study

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.

Tue, 01/10/2023 - 16:38

Communication Challenges in Korean Families Coping With Adolescent Cancer

PURPOSE: To examine the family communication experience of Korean adolescents with cancer and their parents, including how adolescents and their parents verbally share feelings and concerns related to the adolescent's cancer diagnosis with one another, and how emotional communication affects parent-adolescent relationships and the family's coping abilities.

Thu, 01/05/2023 - 15:09

Alone in a Crowd? Parents of Children with Rare Diseases' Experiences of Navigating the Healthcare System

A disorder is considered a rare disease if it affects 1 in 2000, hence, while independently unique, collectively, these conditions are quite common. Many rare diseases are diagnosed during childhood, and therefore parents become primary caregivers in addition to their parental role. Despite the prevalence of rare diseases among children, there has been little research focused on parents' experiences of navigating the healthcare system, a gap we begin to address in this study.

Sun, 01/01/2023 - 14:58

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