ArticleBMJ open2020
Impact of severe polyhandicap cared for at home on French informal caregivers' burden: a cross-sectional study.
Article in BMJ open, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT02400528 (Prospective Cohort Follow-up of French Patients With Profound and Multiple Disabilities), which is not on this map. Cited by 5 papers.
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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.
Prospective Cohort Follow-up of French Patients With Profound and Multiple Disabilities: Healthcare Pathways and Quality of Life Among Patients and Their Families
Who cites it
5 citing papers in PubMed.
- Burden of informal caregivers of people without natural speech: a mixed-methods intervention study.BMC health services research · 2022Trial
- Experiences of children and adults having a sibling with profound intellectual and multiple disabilities: a qualitative systematic review.International journal of nursing studies advances · 2026Review
- Article
- The French EVAL-PLH cohort of persons with polyhandicap.Scientific reports · 2022Article
- Virtual Reality as a Technological-Aided Solution to Support Communication in Persons With Neurodegenerative Diseases and Acquired Brain Injury During COVID-19 Pandemic.Frontiers in public health · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesPolyhandicap (PLH), defined by a combination of profound intellectual impairment and serious motor deficits, is a severe condition with complex disabilities. In France, care of the large majority of PLH individuals is managed in specialised rehabilitation centres or residential facilities, but some of PLH individuals are cared for at home. The aims of this study were to assess the self-perceived burden among informal caregivers of PLH individuals and to identify potential determinants of this burden.
designCross-sectional study (Neuropaediatric Department, Trousseau Hospital, Paris, France). SETTINGS: PLH children were recruited from a specialised paediatric/neurological department.
participantsThe selection criteria of caregivers were age above 18 years and being the PLH individual's next of kin. OUTCOMES MEASURES: From March 2015 to December 2016, data were collected from the caregivers, including sociodemographical data, health status, psycho-behavioural data (quality of life, mood disorders and coping) and self-perceived burden. In addition, the health status of the PLH individual was collected. Relationships between the burden scores and potential determinants were tested (correlations coefficients, Mann-Whitney tests, generalised estimating equations models).
resultsEighty-four children were eligible; 77 families returned their questionnaire. The informal caregivers of PLH children experienced a high level of perceived burden (scores ranged from 55±20 to 81±12). Eighty per cent of them had more than 5 hours of daily caregiving and 51% of them had to get up more than twice during the night. The main factors associated with caregiver burden were age, financial issues, health status, daily care and coping strategies. The patients' health status was not associated with caregiver burden.
conclusionsSome of the caregiver burden determinants might be modifiable. These findings should help healthcare workers and health-decision makers implement specific and appropriate interventions. TRIAL REGISTRATION NUMBER: NCT02400528.
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