Impact of severe polyhandicap on parents’ quality of life: A large French cross-sectional study

Rousseau, Marie-Christine; Baumstarck, Karine; Khaldi-Cherif, Sherezad; Brisse, C.; Felce, A; Moheng, Benjamin; Loundou, Anderson; Villemeur, Thierry Billette de; Auquier, Pascal

doi:10.1371/journal.pone.0211640

Cited by 8 publications

(6 citation statements)

References 33 publications

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“…However, as the PLH individual aged, the burden level rose, which could be explained by the probable older age of caregivers. An interesting genre difference emerged in the lack of familial support for caregiving: parents of male individuals had less individual support than parents of female individuals confirming our previous results, which demonstrated a lower QoL for the parents of a male child than parents of a female child 27. This finding referred to the social representations that individuals develop.…”

Section: Discussionsupporting

confidence: 85%

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Impact of severe polyhandicap cared for at home on French informal caregivers’ burden: a cross-sectional study

Rousseau¹,

Baumstarck²,

Valkov³

et al. 2020

BMJ Open

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Objectives Polyhandicap (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. Design Cross-sectional study (Neuropaediatric Department, Trousseau Hospital, Paris, France). settings PLH children were recruited from a specialised paediatric/neurological department. Participants The 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, psychobehavioural 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). results Eighty-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. Conclusions Some 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.bACkgrOunD Polyhandicap (PLH) is a severe health condition with complex disabilities. This chronic disorder occurs in an immature brain,

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Section: Discussionsupporting

confidence: 85%

“…As expected,11 27 28 the caregivers’ health status (having a chronic disease, reports of a recent hospitalisation episode, deteriorated emotional status) was related to their reported burden. Preserving caregiver health is a noteworthy issue both for caregivers and, indirectly, for patient health.…”

Section: Discussionsupporting

confidence: 66%

Impact of severe polyhandicap cared for at home on French informal caregivers’ burden: a cross-sectional study

Rousseau¹,

Baumstarck²,

Valkov³

et al. 2020

BMJ Open

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“…(1) The variety of clinical statuses: for the first time, the health status of the persons with polyhandicap, aged 3-70 years, was described in terms of etiologies, comorbidities, associated handicaps, behavioral disorders, treatments and devices, severity and stability 9,18 ; (2) The evolving nature of the health status across the lifespan: for the first time, we showed the complex and specific needs of persons with polyhandicap in terms of care at every period of life, in particular the transition process from childhood to adulthood 10 ; (3) The adequacy of the care management: we showed that the adequacy of care management (in terms of care structures, nature of care provided) from objective indicators (such as the health severity and the age) seems less satisfactory than the perceived adequacy of the physicians 8 ; (4) The considerable impact on the quality of life for parents 19 and for health care workers caring for individuals with severe polyhandicap 16 . Readers may refer to the respective references for more details.…”

Section: Resultsmentioning

confidence: 95%

“…www.nature.com/scientificreports/ Third, the assessment of familial caregivers' experience is currently recognized as essential. There is a vast body of literature assessing caregiving in various chronic/severe diseases (such as cancer 23,24 , mental health diseases 25 , various neurologic diseases 26,27 , and cerebral palsy [28][29][30] ), but very few studies have assessed the impact of polyhandicap on caregivers 17,19 . Consideration of the experiences and concerns of families would strongly assist clinicians and health decision-making authorities in offering appropriate interventions.…”

Section: Discussionmentioning

confidence: 99%

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The French EVAL-PLH cohort of persons with polyhandicap

Hamouda

Anzola²,

Villemeur³

et al. 2022

Sci Rep

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Polyhandicap is characterized by a combination of profound intellectual disability and serious motor deficit, resulting in the extreme restriction of autonomy and communication. The aim of the EVAL-PLH (EVALuation PoLyHandicap) study is to identify the impact of socioeconomic, environmental, and epidemiological determinants on the health status of the persons with polyhandicap and the daily lives of their caregivers. EVAL-PLH is a prospective cohort study. The study involved persons with severe polyhandicap (who were cared for at reeducation centers, residential facilities, and one specialized pediatric/neurological department of a university hospital), their familial caregivers and the institutional caregivers. Data collection included sociodemographics, heath status, and psychocomportemental information. Data have been collected at 2 points (2015-2016 and 2020-2021). The French EVAL-PLH cohort is the first cohort study focusing on persons with polyhandicap, their families, and the health care workers caring for them. The sustainability of the device is essential to assist patients, families, clinicians, and health decision-making authorities in the optimization of care management.

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Regards croisés sur le polyhandicap : de la création du terme aux représentations actuelles

Tafforeau

Pouyfaucon²,

Tessiot

et al. 2022

Motricité Cérébrale

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Impact of severe polyhandicap on parents’ quality of life: A large French cross-sectional study

Cited by 8 publications

References 33 publications

Impact of severe polyhandicap cared for at home on French informal caregivers’ burden: a cross-sectional study

Impact of severe polyhandicap cared for at home on French informal caregivers’ burden: a cross-sectional study

The French EVAL-PLH cohort of persons with polyhandicap

Regards croisés sur le polyhandicap : de la création du terme aux représentations actuelles

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