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Intellectual disability

Using Discrete-Choice Experiment Methods to Estimate the Value of Informal Care: The Case of Children with Intellectual Disability

Objectives: This research produces a preference-based monetary valuation of informal care provided to children with intellectual disability (ID) that can be directly applied in economic evaluations. Methods: A discrete-choice experiment (DCE) was designed to elicit an individual's willingness to accept compensation for different care tasks.

Thu, 12/29/2022 - 14:31

"Over time it just becomes easier…": parents of people with Angelman syndrome and Prader-Willi syndrome speak about their carer role

Purpose: This study investigated two of the stresses experienced by parents caring for offspring with Angelman syndrome (AS) and Prader-Willi syndrome (PWS) in Western Australia, and identified their coping strategies.

Tue, 12/20/2022 - 14:03

Stigma, explanatory models and unmet needs of caregivers of children with developmental disorders in a low-income African country: a cross-sectional facility-based survey

Background: Understanding the perspectives of caregivers of children with developmental disorders living in low-income countries is important to inform intervention programmes. The purpose of this study was to examine the stigma experiences, explanatory models, unmet needs, preferred interventions and coping mechanisms of caregivers of children with developmental disorders in Ethiopia.

Tue, 12/20/2022 - 13:57

Trends in the provision of residential educational placements available for young people with learning disabilities/autism in England

Purpose: Little is known about the characteristics of residential educational settings for young people with intellectual or developmental disabilities (IDD) in England. Previous research has focussed on the characteristics and experiences of the young people attending such settings rather than the setting itself; therefore, an overview of national provision is needed. The paper aims to discuss these issues.

Tue, 12/20/2022 - 13:06

Quality of life and associated factors in siblings of children with severe motor and intellectual disabilities: A cross‐sectional study

This study examined quality of life and its associated factors in siblings of children with severe motor and intellectual disabilities in Japan. The participants were 789 siblings of children with a disability and their primary caregivers. We used the Kinder Lebensqualität Fragebogen questionnaire to assess the quality of life of siblings. The mean age of the siblings was 12.21 ± 3.07 years, and the mean quality of life score was 69.63 ± 12.55 points, which is higher than that of the general population of children of the same age.

Tue, 12/20/2022 - 09:09

Early Positive Approaches to Support (E-PAtS) for Families of Young Children With Intellectual Disability: A Feasibility Randomised Controlled Trial

Background: Parents of children with intellectual disabilities are likely to experience poorer mental well-being and face challenges accessing support. Early Positive Approaches to Support (E-PAtS) is a group-based programme, co-produced with parents and professionals, based on existing research evidence and a developmental systems approach to support parental mental well-being.

Thu, 08/25/2022 - 17:11

‘How to cope with stress?’ Determinants of coping strategies used by parents raising children with intellectual disabilities, other developmental disorders and typically developing children. A cross-sectional study from Poland

Introduction: Constructive coping strategies play an important role during childcare processes. We examined the determinants of coping strategies used by parents raising children with intellectual disabilities or other developmental disorders and by parents with typically developing children. Methods: The cross-sectional study was carried out in Cracow. The participants in the survey were 507 caregivers. The research used the Mini-COPE Inventory for Measurement-Coping with Stress and the General Self-Efficacy Scale.

Wed, 08/03/2022 - 15:54

Staff and family views of alternative respite services for adults with intellectual disabilities – aims, outcomes and experiences

Background: Respite care has traditionally been conceptualised as a short residential break which allows families a break from caring responsibilities. In recent years, alternative respite services have been developed which promote greater social integration and normalisation for people with intellectual and other disabilities.

Wed, 06/22/2022 - 13:44

The reported effects of the COVID-19 pandemic on people with intellectual disability and their carers: a scoping review

Background: People with an intellectual disability are a vulnerable group during COVID-19 due to multi-morbidity, frailty, underlying conditions/health problems, social circumstances and limitations in understanding. This place them at greater risk of more severe outcomes from COVID-19. Objective: To chart the evidence of the effects of the COVID-19 pandemic on people with intellectual disability and their carers reported in the research.

Thu, 06/09/2022 - 19:14

Mediating effects of family functioning on the relationship between care burden and family quality of life of caregivers of children with intellectual disabilities in Mongolia

Background: Intellectual disabilities are characterized by constant and complex needs for care that place a heavy burden on the families of affected individuals and affect their overall quality of life. We evaluated the mediating effects of family functioning on the relationship between care burden and the family quality of life of caregivers of children with intellectual disabilities in Mongolia. Methods: Data were collected from a sample of 150 caregivers of children with intellectual disabilities from October 2017 to November 2017.

Wed, 06/08/2022 - 14:38