You are here

  1. Home
  2. burden of care

burden of care

The relationship between barriers to care, caregiver distress, and child health-related quality of life in caregivers of children with cancer: A structural equation modeling approach

The current study examined the relationship between demographic variables, treatment factors, and perceived barriers to care to both caregiver distress and caregiver-reported child health-related quality of life in caregivers of children diagnosed with cancer utilizing path analysis. Parental distress is examined as a potential mediator between barriers to care and income, as well as child age and caregiver-reported health-related quality of life (HRQOL). The final model demonstrated close fit to the data.

Tue, 01/17/2023 - 09:21

Burden on parents of children with haemophilia: The impact of sociodemographic and child's medical condition

Aims and Objectives: To describe the perceived burden on parents of children with severe or moderate haemophilia and the impact of sociodemographic aspects and the child's medical condition on this.

Background: Parents of children with haemophilia face a multitude of demands. The child needs frequent intravenous injections, hospital visits, extra supervision and care. The child's illness and related management might have psychosocial effects on the parents.; Design: A multicentre, cross-sectional study.

Mon, 01/16/2023 - 13:51

Unsung heroes, flying blind-A metasynthesis of parents' experiences of caring for children with special health-care needs at home

Aims and Objectives: To aggregate, synthesise and interpret qualitative research studies of parents' experiences of caring for a child with special health-care needs at home.

Mon, 01/16/2023 - 12:21

The challenges of caring for children who require complex medical care at home: ‘The go between for everyone is the parent and as the parent that’s an awful lot of responsibility’

Background: Increasing numbers of children with complex health‐care needs are cared for at home by their family. The aim of this qualitative study was to explore the challenges experienced by families caring for children who need complex medical care at home.MethodsWe conducted a thematic analysis of eleven in‐depth interviews with parents who carry out specialist medical procedures (eg, enteral feeding, bowel washouts and tracheostomy care) for their children at home.

Mon, 01/16/2023 - 11:29

School satisfaction in parents of children with severe developmental disabilities

Background: Previous research suggests parents' level of satisfaction with their child's school experience is highly variable. The present author explored school satisfaction in a Canadian sample of parents of children with severe and often complex developmental disabilities.

Wed, 01/11/2023 - 16:24

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

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

Initial Challenges of Caregiving During COVID-19: Caregiver Burden, Mental Health, and the Parent-Child Relationship

Research confirms that the mental health burdens following community-wide disasters are extensive, with pervasive impacts noted in individuals and families. It is clear that child disaster outcomes are worst among children of highly distressed caregivers, or those caregivers who experience their own negative mental health outcomes from the disaster. The current study used path analysis to examine concurrent patterns of parents' (n = 420) experience from a national sample during the early months of the U.S. COVID-19 pandemic.

Fri, 01/06/2023 - 17:21

Measuring hemophilia caregiver burden: validation of the Hemophilia Caregiver Impact measure

Aims: The purpose of this article is to describe the psychometric development of the Hemophilia Caregiver Impact measure.

Methods: Qualitative interviews (n = 22) and a cross-sectional web-based study (n = 458) were implemented with caregivers of people with hemophilia. Classical test theory and item response theory analyses were implemented to evaluate the psychometric characteristics of the measure.

Thu, 01/05/2023 - 18:49

When children with profound multiple disabilities are hospitalized: A cross‐sectional survey of parental burden of care, quality of life of parents and their hospitalized children, and satisfaction with family‐centered care

Purpose: We aimed to assess parental burden of care, satisfaction with family‐centered care, and quality of life (HRQoL) of parents and their hospitalized children with profound intellectual and multiple disabilities (PIMD), and determine the relationship among these factors.

Design: A cross‐sectional study using printed questionnaires and qualitative questions was undertaken at a Swiss University Children's Hospital.

Thu, 01/05/2023 - 18:38

Page 1 of 11