ArticleJournal of intellectual disabilities : JOID2022
Mingled bodies and voices: Maternal reflections on caregiver expertise and intellectual disability.
Article in Journal of intellectual disabilities : JOID, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
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Who cites it
5 citing papers in PubMed.
- From Hidden Insights to Better Understanding: Physicians' Perspectives on Caregivers' Tacit Knowledge.Healthcare (Basel, Switzerland) · 2025Article
- Experiences of people with intellectual disabilities during the COVID-19 pandemic. A thematic synthesis.International journal of developmental disabilities · 2024Article
- Care and rehabilitation institutions for people with intellectual disabilities during the COVID-19 pandemic: Polish experiences.International social work · 2023Article
- Ethical Guidance on Family Caregiving, Support, and Visitation in Hospitals and Residential Health Care Facilities, Including During Public Health Emergencies: an American College of Physicians Position Paper.Journal of general internal medicine · 2023Article
- COVID-19 IDD: Findings from a global survey exploring family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities (IDD) and their caregivers.HRB open research · 2022Article
Corrections and comments
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Authors and funding
1 author.
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Abstract
The risk of viral infection during the COVID-19 pandemic has caused many hospitals to prohibit all patient visitors, including family caregivers for people with intellectual disabilities. Drawing on a postmodern, intersubjective view of the body, as well as my experience as the mother of a young adult with profound disabilities, I argue that caregiver knowledge while unconventional within the medical paradigm must be viewed as essential expertise. People with profound intellectual disabilities often have concurrent, complex medical issues that are complicated by their inability to self-advocate. Optimal care rests upon the ongoing presence and expertise of their primary caregiver. Medical professionals risk patient care by excluding the essential expertise of family caregivers at any time, and specifically during COVID-19.
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Registered trials
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