ReviewJournal of applied research in intellectual disabilities : JARID2020
Parents' knowledge of their child with profound intellectual and multiple disabilities: An interpretative synthesis.
Review in Journal of applied research in intellectual disabilities : JARID, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 34 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
34 citing papers in PubMed, 1 synthesis or guideline pooled it.
- The needs of family members of people with severe or profound intellectual disabilities when collaborating with healthcare professionals: a systematic review.Journal of intellectual disability research : JIDR · 2025Pooled it
- Article
- When Silence Masks Autism: Delayed Autism Diagnosis in an Adolescent With Deafness.Case reports in psychiatry · 2026Article
- Exploring the lived experiences of mothers of disabled children with profound and multiple intellectual disabilities in Saudi Arabia: understanding caregiver empowerment.Frontiers in psychology · 2026Article
- From Hidden Insights to Better Understanding: Physicians' Perspectives on Caregivers' Tacit Knowledge.Healthcare (Basel, Switzerland) · 2025Article
- Parental intuition: a phenomenological structure of intuitive knowing in the context of child illness and shared decision-making in healthcare.International journal of qualitative studies on health and well-being · 2025Article
- Innovative Web-Based Future Planning and Well-Being for Caregivers of Individuals With Intellectual and Developmental Disabilities: Protocol of a Pragmatic Randomized Controlled Trial.JMIR research protocols · 2025Article
- Involving Adult Siblings in the Lives of Individuals With Pervasive Support Needs: Attitudes of Healthcare Professionals.Journal of applied research in intellectual disabilities : JARID · 2025Article
- Family Self-Care in the Context of Intellectual Disabilities: Insights from a Qualitative Study in Portugal.Healthcare (Basel, Switzerland) · 2025Article
- An Ongoing Process: The Implementation of an Intervention for People With Profound Intellectual and Multiple Disabilities Over Time.Journal of applied research in intellectual disabilities : JARID · 2025Article
- Family Self-Care Pattern in Families with Children with Intellectual Disabilities: A Pilot Study.Healthcare (Basel, Switzerland) · 2025Article
- Development of an Online Training Course for Government Employees to Support Families With a Child With Profound Intellectual and Multiple Disabilities.Journal of applied research in intellectual disabilities : JARID · 2025Article
- What I Wish I Had Known: Examining Parent Accounts of Managing the Health of Their Child With Intellectual Disability.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Pain, dietary habits and physical activity of children with developmental disabilities in Croatia, North Macedonia and Serbia: a cross-sectional study.BMC pediatrics · 2024Article
- Parents' tacit knowledge of their child with profound intellectual and multiple disabilities: A qualitative study.Journal of intellectual & developmental disability · 2024Article
- The effectiveness of the use of a technology toolkit on activities and mother-child interactions: children with complex care needs.Disability and rehabilitation. Assistive technology · 2024Article
- Parents' and carers' attitudes to the use of digital technology and its role in the care of children with complex needs.The British journal of occupational therapy · 2024Article
- A new intervention to prevent social isolation in people with complex communication needs.Scientific reports · 2024Article
- 'It wasn't the strategies on their own': Exploring caregivers' experiences of accessing services in the development of interventions for autistic people with intellectual disability.Autism : the international journal of research and practice · 2024Article
- Impact of family-centered care in families with children with intellectual disability: A systematic review.Heliyon · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
Abstract
backgroundParents' knowledge of their child with profound intellectual and multiple disabilities (PIMD) is seen as crucial in the support and care for their child. The aim of this study was to explore the nature and transferability of this knowledge.
methodWe conducted an interpretative synthesis, searched PubMed, CINAHL, Philosopher's Index and PsycINFO and included fourteen studies.
resultsParents' knowledge was based on their long-lasting and special bond with their child and described as an intuition, a gut feeling, a sixth sense and a sense of knowing. Parents applied their knowledge as experts in interpreting their child's intended communication, well-being and pain, and as advocates opposing the more objectivist approach of medical professionals. Showing by example and passing on narratives were seen as important ways of transferring this knowledge.
conclusionsSuggestions are made on how to apply and retain parents' knowledge to improve care and support for people with PIMD.
Indexed as
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.