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Determinants of care efficiency in a group of Polish parents raising children with different developmental disorders: a cross-sectional study

Objectives: Care efficiency of family can be determined by many factors such as mental and physical health status of family members and their socioeconomic situation. Raising children with disabilities is a burdening and stressful situation for their caregivers. This article examines determinants of care efficiency in a group of Polish parents raising children with developmental disorders.

Mon, 01/16/2023 - 13:24

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

Children with medical complexity: Neglect, abuse, and challenges

This review on recognizing and responding to suspected maltreatment of children with medical complexity is organized around several questions: 1) What is meant by the term, "children with medical complexity?" Does this term represent something distinct from "children with special health care needs," or "children who are medically fragile?" 2) What constitutes medical neglect of children with medical complexity? How can it be distinguished from expected and reasonable shortcomings in the care that can realistically be provided to a child?

Mon, 01/16/2023 - 11:59

How Poverty Shapes Caring for a Disabled Child: A Narrative Literature Review

Despite ample research on the relationship between disability and poverty, the experiences of parents of disabled children are herein generally overlooked. We argue that an understanding of how poverty shapes caring for a disabled child is crucial for disability inclusive development. Therefore, this paper narratively reviews literature on carers of disabled children from various contexts published between 1995 and 2015.

Tue, 12/20/2022 - 11:43

Dads care too! Participation in paid employment and experiences of workplace flexibility for Australian fathers caring for children and young adults with disabilities

This study uses Australian survey data to explore whether caring for children and young people with disabilities affects paid employment participation of fathers who identify as the secondary caregiver. More fathers in the study were in full-time employment than those in the general Australian population, but they worked fewer hours, often in jobs they did not enjoy or roles with less responsibility. Over one third of fathers reported that caring had impacted on their job opportunities or career progression, particularly those whose children had more severe disabilities.

Tue, 12/13/2022 - 13:20

Investigation of the relationship between disease severity, caregiver burden and emotional expression in caregivers of children with cerebral palsy

Purpose: The aim of this study was to investigate the relation between the physical problems of children with CP and caregiving burden and the emotional expression characteristics of caregivers.

Tue, 12/13/2022 - 12:20

A support programme for caregivers of children with disabilities in Ghana: Understanding the impact on the wellbeing of caregivers

Background: Four fifths of the estimated 150 million children with disability in the world live in resource poor settings where the role of the family is crucial in ensuring that these children survive and thrive. Despite their critical role, evidence is lacking on how to provide optimal support to these families. This study explores the impact of a participatory training programme for caregivers delivered through a local support group, with a focus on understanding caregiver wellbeing.

Tue, 12/13/2022 - 10:08

Labor market participation and productivity costs for female caregivers of minor male children with Duchenne and Becker muscular dystrophies

Introduction/Aims: Duchenne and Becker muscular dystrophies (DBMD) are X-linked neuromuscular disorders characterized by progressive muscle weakness, leading to decreased mobility and multisystem complications. We estimate productivity costs attributable to time spent by a parent caring for a male child under the age of 18 y with DBMD, with particular focus on female caregivers of boys with Duchenne muscular dystrophy (DMD) who have already lost ambulation.

Wed, 08/31/2022 - 14:42

Rehabilitation services lockdown during the COVID-19 emergency: the mental health response of caregivers of children with neurodevelopmental disabilities

Background: The present study investigated the impact of the COVID-19-related rehabilitation services lockdown on the mental health of caregivers of children with neurodevelopmental disabilities. Methods: Between 26 March and 11 May 2020, 84 caregivers filled out ad-hoc and standardized questionnaires through an online survey in order to measure their psychological response to the emergency and lockdown as well as their levels of parenting stress, anxiety and depression.

Wed, 08/10/2022 - 19:23

Suicidality in family caregivers of people with long-term illnesses and disabilities: A scoping review

Background: An emerging body of international research suggests family caregivers may be a high-risk group for suicide, but the evidence has not been synthesised. Methods: Forty-eight peer-reviewed journal articles were included in this review, spanning low-, middle-, and high-income countries and a variety of illnesses and disabilities. Findings: The proportion of caregivers experiencing suicidal ideation ranged from 2.7% to 71%, with evidence of suicide attempts, deaths by suicide, and deaths by homicide-suicide also reported.

Tue, 06/28/2022 - 13:39

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