Background: Mothers of young adults with profound intellectual and multiple disabilities that live at home are less likely to be on the radar of formal services. We explored the experience of these mothers over the course of the COVID-19 pandemic.
Methods: A qualitative study using three case studies. Transcripts were analysed using Interpretative Phenomenological Analysis.
Results: Two overarching themes with various subthemes emerged. The first theme focuses on the impact of being a mother of a young adult with profound intellectual and multiple disabilities who lives at home during the COVID-19 pandemic. The second theme describes both the vulnerability and resilience of the broader system, as well as its need to experience togetherness.
Conclusions: Families of a young adult with profound intellectual and multiple disabilities exhibit both resilience and vulnerability during the COVID-19 pandemic, underscoring the importance to support and promote the visibility of these families.
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http://dx.doi.org/10.3109/13668250.2022.2135174 | DOI Listing |
J Intellect Dev Disabil
September 2024
School of Nursing and Midwifery, Trinity College Dublin, Dublin, Ireland.
Constipation impacts health-related quality of life with a burden similar to other chronic conditions. This study characterises the prevalence of constipation and its associated factors in older adults with intellectual disability. Data from the Intellectual Disability Supplement of The Irish Longitudinal Study on Ageing was analysed using bivariate and multivariate approaches.
View Article and Find Full Text PDFJ Intellect Dev Disabil
December 2024
Department of Ethics, Law & Humanities, Amsterdam UMC, University of Amsterdam, Amsterdam, the Netherlands.
Background: Parents' tacit knowledge plays an important role in the care of persons with profound intellectual and multiple disabilities (PIMD). As little is known about its nature and use, we aimed to explore this parental tacit knowledge.
Method: We conducted semi-structured interviews with parents ( = 11) about their tacit knowledge of their child, based upon video recordings they made of their child's behaviour, and analysed the data thematically.
J Intellect Dev Disabil
December 2024
School of Health Sciences, Faculty of Medicine and Health, Örebro University, Örebro Sweden.
Introduction: There is little research regarding quality of health care for people with profound intellectual and multiple disabilities (PIMD), who often are represented by their relatives, because of their limited communication. The aim of this study was to explore experiences and perspectives of relatives regarding healthcare services for adults with PIMD.
Method: Twelve semi-structured telephone interviews were conducted involving close relatives of people with PIMD: mothers ( = 7), fathers ( = 2), brothers ( = 2) and a sister ( = 1).
J Intellect Dev Disabil
March 2024
Department of Community Health Sciences, University of Manitoba, Winnipeg, Canada.
Background: Deinstitutionalisation refers to the transition of individuals with intellectual and developmental disabilities from large institutions to smaller homes in the community. The purpose of this study was to explore how family members of persons with intellectual and developmental disabilities perceived their loved ones' community transition process.
Method: Eight family members of persons with severe or profound intellectual and developmental disabilities formerly residing at the complex care facility of St.
J Intellect Dev Disabil
June 2023
Bachelor of Nursing and Urban Social Development Research Group, The Hague University of Applied Sciences, The Hague, The Netherlands.
Background: Parents of children with profound intellectual and multiple disabilities (PIMD) have extensive care duties. This study describes the phenomenon "parenting a child with PIMD."
Method: We conducted in-depth interviews with 25 Dutch parents.
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