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"What if I'm No Longer Around?": An Evaluative Description of a Structured Group Conversation about the Care for Persons with Profound Intellectual and Multiple Disabilities When They Outlive Their Parents
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Kasper Kruithof; Erik Olsman; Dick Willems; Karin Volkers; Bas Kleijwegt; Appolonia Nieuwenhuijse – Journal of Applied Research in Intellectual Disabilities, 2024
Background: Persons with profound intellectual and multiple disabilities (PIMD) increasingly outlive their parents. Therefore, we designed a structured group conversation to support family members and care professionals in exploring together how parental roles may be taken over by others when necessary. Method: We conducted a mixed methods study,…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Family Needs, Parent Role
Can the Job Demand-Control-(Support) Model Predict Disability Support Worker Burnout and Work Engagement?
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Vassos, Maria; Nankervis, Karen; Skerry, Trevor; Lante, Kerrie – Journal of Intellectual & Developmental Disability, 2019
Background: Research shows that up to 43% of disability support workers (DSWs) report poor psychosocial work outcomes (e.g., stress, job burnout, low job satisfaction). This study examined whether the job demand-control-(support) model offers a valid explanation of DSW burnout and work engagement. Method: 325 DSWs completed online measures of…
Descriptors: Disabilities, Stress Variables, Burnout, Job Satisfaction
Efforts to Increase Social Contact in Persons with Profound Intellectual and Multiple Disabilities: Analysing Individual Support Plans in the Netherlands
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Kamstra, Aafke; van der Putten, Annette A. J.; Vlaskamp, Carla – Journal of Intellectual Disabilities, 2017
Most people with profound intellectual and multiple disabilities (PIMD) have limited social contact and it is unclear what is done to maintain or increase these contacts. Individual support planning (ISP) can be used in the systematic enhancement of social contacts. This study analyses the content of ISPs with respect to the social contacts of…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Interpersonal Relationship, Individualized Programs
An Autoethnography on How a Person Developed the Skills and Attributes Necessary for Benefiting the Education of a People Who Have Been Largely Ignored in Our Society: Those Individuals with Multi Disabilities Who Are Unable to Communicate with Verbal (Spoken) Speech
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Schneck, James A. – ProQuest LLC, 2017
Using an autoethnographic approach, this dissertation explores the path taken by a person who serves a unique population of individuals--people who not only have more than one disability, but in addition, are unable to communicate using verbal (spoken) speech. Starting with a recap of the history of the use and subsequent oppression of American…
Descriptors: Autobiographies, Ethnography, Multiple Disabilities, Communication Problems
Transferring Young People with Profound Intellectual and Multiple Disabilities from Pediatric to Adult Medical Care: Parents' Experiences and Recommendations
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Bindels-de Heus, Karen G. C. B.; van Staa, AnneLoes; van Vliet, Ingeborg; Ewals, Frans V. P. M.; Hilberink, Sander R. – Intellectual and Developmental Disabilities, 2013
Many children with profound intellectual and multiple disabilities (PIMD) now reach adulthood. The aim of this study was to elicit parents' experiences with the transfer from pediatric to adult medical care. A convenience sample of 131 Dutch parents of young people with PIMD (16--26 years) completed a web-based questionnaire. Twenty-two percent of…
Descriptors: Severe Mental Retardation, Severe Disabilities, Multiple Disabilities, Transfer Policy