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Increased Life Expectancy of People with Profound Intellectual and Multiple Disabilities: What Does It Change for Parents?
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Karine Baumstarck; Sibylle Del Duca; Houria El Ouazzani; Ilyes Hamouda; Any Beltran Anzola; Marie-Anastasie Aim; Marie-Christine Rousseau – Journal of Applied Research in Intellectual Disabilities, 2025
Background: Advancements in medicine have increased the life expectancy of the people with profound intellectual and multiple disabilities. The hypothesis is that as parents get older, they worry about no longer being there for their child. This paper explores the extent to which the experiences of older parents may differ from that of younger…
Descriptors: Quality of Life, Severe Disabilities, Multiple Disabilities, Intellectual Disability
'Different Things at Different Times': Wellbeing Strategies and Processes Identified by Parents of Children Who Have an Intellectual Disability or Who Are Autistic, or Both
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Griffin, Joanna; Gore, Nick – Journal of Applied Research in Intellectual Disabilities, 2023
Background: Most parents of children with an intellectual disability or who are autistic identify positives in their family life and their own wellbeing, in addition to reported mental health challenges. Several models and interventions have been developed in relation to parent carer wellbeing. Few studies have asked parent carers how they support…
Descriptors: Parents, Children, Intellectual Disability, Autism Spectrum Disorders
Survey of Parents of Children with Intellectual Disabilities and/or Autism Who Experience Chronic Constipation
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Rooney, James; Hodge, Rebecca; Smith, Jade; Vanstone, Kelly; Laugharne, Richard; Shankar, Rohit – Journal of Applied Research in Intellectual Disabilities, 2023
Background: Constipation is common in children with intellectual disabilities and/or autism, but poorly researched. This study looks to understand parental knowledge, attitudes and management practices towards constipation in children with intellectual disabilities and/or autism. Methods: A cross-sectional online survey developed with patient…
Descriptors: Parents, Children, Intellectual Disability, Autism Spectrum Disorders
The Structure of Informal Social Networks of Persons with Profound Intellectual and Multiple Disabilities
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Kamstra, A.; van der Putten, A. A. J.; Vlaskamp, C. – Journal of Applied Research in Intellectual Disabilities, 2015
Background: Persons with less severe disabilities are able to express their needs and show initiatives in social contacts, persons with profound intellectual and multiple disabilities (PIMD), however, depend on others for this. This study analysed the structure of informal networks of persons with PIMD. Materials and Methods: Data concerning the…
Descriptors: Mental Retardation, Multiple Disabilities, Severe Mental Retardation, Severity (of Disability)
The Role of the External Personal Assistants for Children with Profound Intellectual and Multiple Disabilities Working in the Children's Home
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Axelsson, Anna Karin – Journal of Applied Research in Intellectual Disabilities, 2015
Background: Children with profound intellectual and multiple disabilities need support to function in an optimal way. However, there is a limited knowledge about the role of external personal assistants working in the children's home. Materials and Methods: A mixed method study was performed including qualitative data from interviews with 11…
Descriptors: Severe Mental Retardation, Severe Disabilities, Multiple Disabilities, Mixed Methods Research
Family Structure in Norwegian Families of Children with Disabilities
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Lundeby, Hege; Tossebro, Jan – Journal of Applied Research in Intellectual Disabilities, 2008
Background: The idea that raising a child with disabilities has a negative impact on the parents' relationship is still widely accepted despite contradictory research findings. This article addresses the impact of raising a child with disabilities on family structure in the present Norwegian context. Method: Family demographics were collected at…
Descriptors: Siblings, Multiple Disabilities, Family Structure, Parents
Domains of Quality of Life of People with Profound Multiple Disabilities: The Perspective of Parents and Direct Support Staff
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Petry, Katja; Maes, Bea; Vlaskamp, Carla – Journal of Applied Research in Intellectual Disabilities, 2005
Background: This study considered the general validity of the basic domains of quality of life that appear in theoretical models, in relation to people with profound multiple disabilities. The authors examined how parents and direct support staff operationalized these basic domains for people with profound multiple disabilities. They investigated…
Descriptors: Health Promotion, Multiple Disabilities, Severe Disabilities, Severe Mental Retardation