ArticleHealth expectations : an international journal of public participation in health care and health policy2024
Parents' experiences of parenting a child with profound intellectual and multiple disabilities in France: A qualitative study.
Article in Health expectations : an international journal of public participation in health care and health policy, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers, 1 of them a synthesis that pooled it.
What it found
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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.
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Who cites it
8 citing papers in PubMed, 1 synthesis or guideline pooled it, 8 citations in OpenAlex.
- 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
- Quality of life among individuals with profound intellectual and multiple disabilities: crossed perspectives of institutional caregivers and parents.Health and quality of life outcomes · 2025Trial
- Continued Involvement: A Scoping Review on Family Members' Needs and Experiences Collaborating With Support Staff for Relatives With Intellectual Disabilities Living Outside the Family Home.Journal of intellectual disability research : JIDR · 2026Article
- Care trajectories in children with profound intellectual and multiple disabilities/polyhandicap: a cross-sectional study of the French National Cohort.Frontiers in public health · 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
- Identifying the Impacts, Obstacles and Information Barriers for Parents of Children Living With Genetic Neurodevelopmental Disorders: A Qualitative Study.Health expectations : an international journal of public participation in health care and health policy · 2025Observational
- 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
- Parents' experiences of parenting a child with profound intellectual and multiple disabilities in France: A qualitative study.Health expectations : an international journal of public participation in health care and health policy · 2024Article
Corrections and comments
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Authors and funding
11 authors at 2 institutions in 1 country.
Funding
Abstract
introductionParents of persons with profound intellectual and multiple disabilities (PIMD) play a major and often lifelong role in the care and support of their child. A better understanding of parents' perspectives regarding their experiences of parenting their child with PIMD is essential to support them more effectively. Although this topic has been explored extensively in Anglo-Saxon and Northern European countries, little is known about the experience of these parents in a highly institutionalized context such as that in France.
objectiveWe explored parents' experiences of the activities they performed to care for their child with PIMD (namely, the 'parenting work') in the French context.
methodQualitative semistructured interviews were conducted by telephone with 34 parents of persons with PIMD aged 8-35. The resulting data were analyzed using thematic analysis.
resultsThe analysis highlighted the diversity of activities performed by parents as well as the influence of context on the forms of this parenting work. Five themes were developed: (1) navigating the challenges of obtaining medical recognition; (2) negotiating a concealed domain and becoming an expert; (3) unfolding medical and medicosocial care management; (4) navigating the challenges of daily living and (5) shaping one's child's possibilities.
conclusionThis study offers a better understanding of the challenges, levers and expectations of parents of children with PIMD in France. Contextual factors such as the lack of knowledge of PIMD among health professionals, access to knowledge and know-how associated with care management, the administrative complexity of access to care and equipment, institutional issues (e.g., professional turnover) and societal ableism (e.g., access to infrastructures, interpersonal discrimination) shape the work parents perform to support their child's needs. It is necessary to consider contextual aspects to better support these parents and their children. Suggestions for applications are provided in the discussion. PATIENT OR PUBLIC CONTRIBUTION: One of the researchers, a parent of a child with PIMD, supported the research design and provided feedback on the study's procedures and manuscript.
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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.