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

Polyhandicap (PLH) is a condition of severe and complex disabilities and is defined by a combination of profound intellectual impairment and serious motor deficits. Parents of PLH individuals are chronically confronted with stressful situations. The aims of this study are i) to assess and compare th...

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Published inPloS one Vol. 14; no. 2; p. e0211640
Main Authors Rousseau, Marie-Christine, Baumstarck, Karine, Khaldi-Cherif, Sherezad, Brisse, Catherine, Felce, Agnès, Moheng, Benjamin, Loundou, Anderson, Billette de Villemeur, Thierry, Auquier, Pascal
Format Journal Article
LanguageEnglish
Published United States Public Library of Science 04.02.2019
Public Library of Science (PLoS)
Subjects
Adaptation, Psychological - physiology
Biology and Life Sciences
Care and treatment
Caregivers
Cerebral palsy
Children & youth
Cross-Sectional Studies
Disabilities
Disability
Disabled Persons - psychology
Families & family life
Fathers - psychology
Female
France
Health
Health aspects
Health care
Health care policy
Health Personnel - psychology
Health Status
Humans
Life Sciences
Male
Medical personnel
Medicine
Medicine and Health Sciences
Middle Aged
Mothers
Mothers - psychology
Parents
Parents & parenting
Parents - psychology
Pediatrics
People and Places
Practice
Quality assessment
Quality of life
Quality of Life - psychology
Rehabilitation
Risk factors
Santé publique et épidémiologie
Social Sciences
Stress, Psychological - psychology
Surveys and Questionnaires
France
Online AccessGet full text
ISSN1932-6203
1932-6203
DOI10.1371/journal.pone.0211640

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Abstract Polyhandicap (PLH) is a condition of severe and complex disabilities and is defined by a combination of profound intellectual impairment and serious motor deficits. Parents of PLH individuals are chronically confronted with stressful situations. The aims of this study are i) to assess and compare the quality of life (QoL) of a large panel of parents of PLH individuals with age- and gender-matched controls and ii) to identify potential determinants of parents' QoL. We conducted a cross-sectional study. Parents were recruited from 4 specialized rehabilitation centres, 9 residential facilities, and a specialized paediatric/neurological department. The selection criteria were age above 18 years and being the mother/father of a PLH individual. The data collected from the parents included sociodemographic, health status, and psycho-behavioural data (including QoL); additionally, the health status of the PLH individuals was collected. The QoL scores of all dimensions were significantly lower for parents than for controls. The main factors modulating parents' QoL were financial issues, health status, and coping strategies. The PLH individuals' health status was not associated with parents' QoL. Some QoL determinants might be amenable. These findings should help health care workers and health decision makers to implement specific and appropriate interventions.
AbstractList Background Polyhandicap (PLH) is a condition of severe and complex disabilities and is defined by a combination of profound intellectual impairment and serious motor deficits. Parents of PLH individuals are chronically confronted with stressful situations. The aims of this study are i) to assess and compare the quality of life (QoL) of a large panel of parents of PLH individuals with age- and gender-matched controls and ii) to identify potential determinants of parents’ QoL. Method We conducted a cross-sectional study. Parents were recruited from 4 specialized rehabilitation centres, 9 residential facilities, and a specialized paediatric/neurological department. The selection criteria were age above 18 years and being the mother/father of a PLH individual. The data collected from the parents included sociodemographic, health status, and psycho-behavioural data (including QoL); additionally, the health status of the PLH individuals was collected. Results The QoL scores of all dimensions were significantly lower for parents than for controls. The main factors modulating parents’ QoL were financial issues, health status, and coping strategies. The PLH individuals’ health status was not associated with parents’ QoL. Conclusions Some QoL determinants might be amenable. These findings should help health care workers and health decision makers to implement specific and appropriate interventions.
Background Polyhandicap (PLH) is a condition of severe and complex disabilities and is defined by a combination of profound intellectual impairment and serious motor deficits. Parents of PLH individuals are chronically confronted with stressful situations. The aims of this study are i) to assess and compare the quality of life (QoL) of a large panel of parents of PLH individuals with age- and gender-matched controls and ii) to identify potential determinants of parents’ QoL. Method We conducted a cross-sectional study. Parents were recruited from 4 specialized rehabilitation centres, 9 residential facilities, and a specialized paediatric/neurological department. The selection criteria were age above 18 years and being the mother/father of a PLH individual. The data collected from the parents included sociodemographic, health status, and psycho-behavioural data (including QoL); additionally, the health status of the PLH individuals was collected. Results The QoL scores of all dimensions were significantly lower for parents than for controls. The main factors modulating parents’ QoL were financial issues, health status, and coping strategies. The PLH individuals’ health status was not associated with parents’ QoL. Conclusions Some QoL determinants might be amenable. These findings should help health care workers and health decision makers to implement specific and appropriate interventions.
Polyhandicap (PLH) is a condition of severe and complex disabilities and is defined by a combination of profound intellectual impairment and serious motor deficits. Parents of PLH individuals are chronically confronted with stressful situations. The aims of this study are i) to assess and compare the quality of life (QoL) of a large panel of parents of PLH individuals with age- and gender-matched controls and ii) to identify potential determinants of parents' QoL. We conducted a cross-sectional study. Parents were recruited from 4 specialized rehabilitation centres, 9 residential facilities, and a specialized paediatric/neurological department. The selection criteria were age above 18 years and being the mother/father of a PLH individual. The data collected from the parents included sociodemographic, health status, and psycho-behavioural data (including QoL); additionally, the health status of the PLH individuals was collected. The QoL scores of all dimensions were significantly lower for parents than for controls. The main factors modulating parents' QoL were financial issues, health status, and coping strategies. The PLH individuals' health status was not associated with parents' QoL. Some QoL determinants might be amenable. These findings should help health care workers and health decision makers to implement specific and appropriate interventions.
Polyhandicap (PLH) is a condition of severe and complex disabilities and is defined by a combination of profound intellectual impairment and serious motor deficits. Parents of PLH individuals are chronically confronted with stressful situations. The aims of this study are i) to assess and compare the quality of life (QoL) of a large panel of parents of PLH individuals with age- and gender-matched controls and ii) to identify potential determinants of parents' QoL. We conducted a cross-sectional study. Parents were recruited from 4 specialized rehabilitation centres, 9 residential facilities, and a specialized paediatric/neurological department. The selection criteria were age above 18 years and being the mother/father of a PLH individual. The data collected from the parents included sociodemographic, health status, and psycho-behavioural data (including QoL); additionally, the health status of the PLH individuals was collected. The QoL scores of all dimensions were significantly lower for parents than for controls. The main factors modulating parents' QoL were financial issues, health status, and coping strategies. The PLH individuals' health status was not associated with parents' QoL. Some QoL determinants might be amenable. These findings should help health care workers and health decision makers to implement specific and appropriate interventions.
Polyhandicap (PLH) is a condition of severe and complex disabilities and is defined by a combination of profound intellectual impairment and serious motor deficits. Parents of PLH individuals are chronically confronted with stressful situations. The aims of this study are i) to assess and compare the quality of life (QoL) of a large panel of parents of PLH individuals with age- and gender-matched controls and ii) to identify potential determinants of parents' QoL.BACKGROUNDPolyhandicap (PLH) is a condition of severe and complex disabilities and is defined by a combination of profound intellectual impairment and serious motor deficits. Parents of PLH individuals are chronically confronted with stressful situations. The aims of this study are i) to assess and compare the quality of life (QoL) of a large panel of parents of PLH individuals with age- and gender-matched controls and ii) to identify potential determinants of parents' QoL.We conducted a cross-sectional study. Parents were recruited from 4 specialized rehabilitation centres, 9 residential facilities, and a specialized paediatric/neurological department. The selection criteria were age above 18 years and being the mother/father of a PLH individual. The data collected from the parents included sociodemographic, health status, and psycho-behavioural data (including QoL); additionally, the health status of the PLH individuals was collected.METHODWe conducted a cross-sectional study. Parents were recruited from 4 specialized rehabilitation centres, 9 residential facilities, and a specialized paediatric/neurological department. The selection criteria were age above 18 years and being the mother/father of a PLH individual. The data collected from the parents included sociodemographic, health status, and psycho-behavioural data (including QoL); additionally, the health status of the PLH individuals was collected.The QoL scores of all dimensions were significantly lower for parents than for controls. The main factors modulating parents' QoL were financial issues, health status, and coping strategies. The PLH individuals' health status was not associated with parents' QoL.RESULTSThe QoL scores of all dimensions were significantly lower for parents than for controls. The main factors modulating parents' QoL were financial issues, health status, and coping strategies. The PLH individuals' health status was not associated with parents' QoL.Some QoL determinants might be amenable. These findings should help health care workers and health decision makers to implement specific and appropriate interventions.CONCLUSIONSSome QoL determinants might be amenable. These findings should help health care workers and health decision makers to implement specific and appropriate interventions.
Audience Academic
Author Billette de Villemeur, Thierry
Baumstarck, Karine
Rousseau, Marie-Christine
Brisse, Catherine
Felce, Agnès
Auquier, Pascal
Moheng, Benjamin
Loundou, Anderson
Khaldi-Cherif, Sherezad
AuthorAffiliation 4 Comité d'Études, d'Éducation et de Soins Auprès des Personnes Polyhandicapées, Paris, France
2 EA 3279, Self-perceived Health Assessment Research Unit, School of Medicine, Aix Marseille Université, Marseille, France
7 Service de Neuropédiatrie—Pathologie du développement, Centre de référence des déficits intellectuels de causes rares, Hôpital Trousseau, Assistance Publique Hôpitaux de Paris, Paris, France
1 Fédération des Hôpitaux de Polyhandicap et Multihandicap, Hôpital San Salvadour, Assistance Publique Hôpitaux de Paris, Hyères, France
5 Hôpital d’Hendaye, Assistance Publique Hôpitaux de Paris, Hendaye, France
6 Sorbonne Université, UPMC, GRC ConCer-LD, Paris, France
8 Service de Polyhandicap Pédiatrique, Assistance Publique Hôpitaux de Paris, Hôpital de La Roche Guyon, La Roche Guyon, France
Iranian Institute for Health Sciences Research, ISLAMIC REPUBLIC OF IRAN
3 Union Générale Caisse Assurance Maladie (UGECAM), Paris, France
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BackLink https://www.ncbi.nlm.nih.gov/pubmed/30716093$$D View this record in MEDLINE/PubMed
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2019 Rousseau et al. This is an open access article distributed under the terms of the Creative Commons Attribution License: http://creativecommons.org/licenses/by/4.0/ (the “License”), which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.
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– notice: 2019 Rousseau et al. This is an open access article distributed under the terms of the Creative Commons Attribution License: http://creativecommons.org/licenses/by/4.0/ (the “License”), which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.
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CorporateAuthor the French Polyhandicap Group
French Polyhandicap Group
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License Distributed under a Creative Commons Attribution 4.0 International License: http://creativecommons.org/licenses/by/4.0
This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
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PMCID: PMC6361449
Membership of the French Polyhandicap Group is provided in the Acknowledgments.
Competing Interests: The authors have declared that no competing interests exist.
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Snippet Polyhandicap (PLH) is a condition of severe and complex disabilities and is defined by a combination of profound intellectual impairment and serious motor...
Background Polyhandicap (PLH) is a condition of severe and complex disabilities and is defined by a combination of profound intellectual impairment and serious...
BACKGROUND:Polyhandicap (PLH) is a condition of severe and complex disabilities and is defined by a combination of profound intellectual impairment and serious...
Background Polyhandicap (PLH) is a condition of severe and complex disabilities and is defined by a combination of profound intellectual impairment and serious...
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SubjectTerms Adaptation, Psychological - physiology
Biology and Life Sciences
Care and treatment
Caregivers
Cerebral palsy
Children & youth
Cross-Sectional Studies
Disabilities
Disability
Disabled Persons - psychology
Families & family life
Fathers - psychology
Female
France
Health
Health aspects
Health care
Health care policy
Health Personnel - psychology
Health Status
Humans
Life Sciences
Male
Medical personnel
Medicine
Medicine and Health Sciences
Middle Aged
Mothers
Mothers - psychology
Parents
Parents & parenting
Parents - psychology
Pediatrics
People and Places
Practice
Quality assessment
Quality of life
Quality of Life - psychology
Rehabilitation
Risk factors
Santé publique et épidémiologie
Social Sciences
Stress, Psychological - psychology
Surveys and Questionnaires
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Title Impact of severe polyhandicap on parents’ quality of life: A large French cross-sectional study
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