AutomedicationFrancoV1, Main, Exploration, bibRecord, 000538

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

Identifieur interne : 000538 ( Main/Exploration ); précédent : 000537; suivant : 000539

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

Auteurs : Marie-Christine Rousseau [France] ; Karine Baumstarck [France] ; Sherezad Khaldi-Cherif [France] ; Catherine Brisse [France] ; Agnès Felce [France] ; Benjamin Moheng [France] ; Anderson Loundou [France] ; Thierry Billette De Villemeur [France] ; Pascal Auquier [France]

Source :

PloS one [ 1932-6203 ] ; 2019.

RBID : pubmed:30716093

Descripteurs français

KwdFr :
- Adaptation psychologique (physiologie), Adulte d'âge moyen (MeSH), Enquêtes et questionnaires (MeSH), Femelle (MeSH), France (MeSH), Humains (MeSH), Mâle (MeSH), Mères (psychologie), Parents (psychologie), Personnel de santé (psychologie), Personnes handicapées (psychologie), Pères (psychologie), Qualité de vie (psychologie), Stress psychologique (psychologie), État de santé (MeSH), Études transversales (MeSH).
MESH :
- physiologie : Adaptation psychologique.
- psychologie : Mères, Parents, Personnel de santé, Personnes handicapées, Pères, Qualité de vie, Stress psychologique.
- Adulte d'âge moyen, Enquêtes et questionnaires, Femelle, France, Humains, Mâle, État de santé, Études transversales.
Wicri :
- geographic : France.

English descriptors

KwdEn :
- Adaptation, Psychological (physiology), Cross-Sectional Studies (MeSH), Disabled Persons (psychology), Fathers (psychology), Female (MeSH), France (MeSH), Health Personnel (psychology), Health Status (MeSH), Humans (MeSH), Male (MeSH), Middle Aged (MeSH), Mothers (psychology), Parents (psychology), Quality of Life (psychology), Stress, Psychological (psychology), Surveys and Questionnaires (MeSH).
MESH :
- geographic : France.
- physiology : Adaptation, Psychological.
- psychology : Disabled Persons, Fathers, Health Personnel, Mothers, Parents, Quality of Life, Stress, Psychological.
- Cross-Sectional Studies, Female, Health Status, Humans, Male, Middle Aged, Surveys and Questionnaires.

Abstract

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.

DOI: 10.1371/journal.pone.0211640
PubMed: 30716093
PubMed Central: PMC6361449

Affiliations:

Links toward previous steps (curation, corpus...)

to stream Main, to step Corpus: 000589
to stream Main, to step Curation: 000589

Le document en format XML

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<author><name sortKey="Felce, Agnes" sort="Felce, Agnes" uniqKey="Felce A" first="Agnès" last="Felce">Agnès Felce</name>
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<term>Cross-Sectional Studies (MeSH)</term>
<term>Disabled Persons (psychology)</term>
<term>Fathers (psychology)</term>
<term>Female (MeSH)</term>
<term>France (MeSH)</term>
<term>Health Personnel (psychology)</term>
<term>Health Status (MeSH)</term>
<term>Humans (MeSH)</term>
<term>Male (MeSH)</term>
<term>Middle Aged (MeSH)</term>
<term>Mothers (psychology)</term>
<term>Parents (psychology)</term>
<term>Quality of Life (psychology)</term>
<term>Stress, Psychological (psychology)</term>
<term>Surveys and Questionnaires (MeSH)</term>
</keywords>
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<term>Adulte d'âge moyen (MeSH)</term>
<term>Enquêtes et questionnaires (MeSH)</term>
<term>Femelle (MeSH)</term>
<term>France (MeSH)</term>
<term>Humains (MeSH)</term>
<term>Mâle (MeSH)</term>
<term>Mères (psychologie)</term>
<term>Parents (psychologie)</term>
<term>Personnel de santé (psychologie)</term>
<term>Personnes handicapées (psychologie)</term>
<term>Pères (psychologie)</term>
<term>Qualité de vie (psychologie)</term>
<term>Stress psychologique (psychologie)</term>
<term>État de santé (MeSH)</term>
<term>Études transversales (MeSH)</term>
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</keywords>
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</keywords>
<keywords scheme="MESH" qualifier="psychologie" xml:lang="fr"><term>Mères</term>
<term>Parents</term>
<term>Personnel de santé</term>
<term>Personnes handicapées</term>
<term>Pères</term>
<term>Qualité de vie</term>
<term>Stress psychologique</term>
</keywords>
<keywords scheme="MESH" qualifier="psychology" xml:lang="en"><term>Disabled Persons</term>
<term>Fathers</term>
<term>Health Personnel</term>
<term>Mothers</term>
<term>Parents</term>
<term>Quality of Life</term>
<term>Stress, Psychological</term>
</keywords>
<keywords scheme="MESH" xml:lang="en"><term>Cross-Sectional Studies</term>
<term>Female</term>
<term>Health Status</term>
<term>Humans</term>
<term>Male</term>
<term>Middle Aged</term>
<term>Surveys and Questionnaires</term>
</keywords>
<keywords scheme="MESH" xml:lang="fr"><term>Adulte d'âge moyen</term>
<term>Enquêtes et questionnaires</term>
<term>Femelle</term>
<term>France</term>
<term>Humains</term>
<term>Mâle</term>
<term>État de santé</term>
<term>Études transversales</term>
</keywords>
<keywords scheme="Wicri" type="geographic" xml:lang="fr"><term>France</term>
</keywords>
</textClass>
</profileDesc>
</teiHeader>
<front><div type="abstract" xml:lang="en"><p><b>BACKGROUND</b>
</p>
<p>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.</p>
</div>
<div type="abstract" xml:lang="en"><p><b>METHOD</b>
</p>
<p>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.</p>
</div>
<div type="abstract" xml:lang="en"><p><b>RESULTS</b>
</p>
<p>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.</p>
</div>
<div type="abstract" xml:lang="en"><p><b>CONCLUSIONS</b>
</p>
<p>Some QoL determinants might be amenable. These findings should help health care workers and health decision makers to implement specific and appropriate interventions.</p>
</div>
</front>
</TEI>
<pubmed><MedlineCitation Status="MEDLINE" Owner="NLM"><PMID Version="1">30716093</PMID>
<DateCompleted><Year>2019</Year>
<Month>11</Month>
<Day>12</Day>
</DateCompleted>
<DateRevised><Year>2020</Year>
<Month>03</Month>
<Day>09</Day>
</DateRevised>
<Article PubModel="Electronic-eCollection"><Journal><ISSN IssnType="Electronic">1932-6203</ISSN>
<JournalIssue CitedMedium="Internet"><Volume>14</Volume>
<Issue>2</Issue>
<PubDate><Year>2019</Year>
</PubDate>
</JournalIssue>
<Title>PloS one</Title>
<ISOAbbreviation>PLoS One</ISOAbbreviation>
</Journal>
<ArticleTitle>Impact of severe polyhandicap on parents' quality of life: A large French cross-sectional study.</ArticleTitle>
<Pagination><MedlinePgn>e0211640</MedlinePgn>
</Pagination>
<ELocationID EIdType="doi" ValidYN="Y">10.1371/journal.pone.0211640</ELocationID>
<Abstract><AbstractText Label="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.</AbstractText>
<AbstractText Label="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.</AbstractText>
<AbstractText Label="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.</AbstractText>
<AbstractText Label="CONCLUSIONS">Some QoL determinants might be amenable. These findings should help health care workers and health decision makers to implement specific and appropriate interventions.</AbstractText>
</Abstract>
<AuthorList CompleteYN="Y"><Author ValidYN="Y"><LastName>Rousseau</LastName>
<ForeName>Marie-Christine</ForeName>
<Initials>MC</Initials>
<Identifier Source="ORCID">0000-0002-8065-8667</Identifier>
<AffiliationInfo><Affiliation>Fédération des Hôpitaux de Polyhandicap et Multihandicap, Hôpital San Salvadour, Assistance Publique Hôpitaux de Paris, Hyères, France.</Affiliation>
</AffiliationInfo>
<AffiliationInfo><Affiliation>EA 3279, Self-perceived Health Assessment Research Unit, School of Medicine, Aix Marseille Université, Marseille, France.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Baumstarck</LastName>
<ForeName>Karine</ForeName>
<Initials>K</Initials>
<AffiliationInfo><Affiliation>EA 3279, Self-perceived Health Assessment Research Unit, School of Medicine, Aix Marseille Université, Marseille, France.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Khaldi-Cherif</LastName>
<ForeName>Sherezad</ForeName>
<Initials>S</Initials>
<AffiliationInfo><Affiliation>Union Générale Caisse Assurance Maladie (UGECAM), Paris, France.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Brisse</LastName>
<ForeName>Catherine</ForeName>
<Initials>C</Initials>
<AffiliationInfo><Affiliation>Comité d'Études, d'Éducation et de Soins Auprès des Personnes Polyhandicapées, Paris, France.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Felce</LastName>
<ForeName>Agnès</ForeName>
<Initials>A</Initials>
<AffiliationInfo><Affiliation>Hôpital d'Hendaye, Assistance Publique Hôpitaux de Paris, Hendaye, France.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Moheng</LastName>
<ForeName>Benjamin</ForeName>
<Initials>B</Initials>
<AffiliationInfo><Affiliation>EA 3279, Self-perceived Health Assessment Research Unit, School of Medicine, Aix Marseille Université, Marseille, France.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Loundou</LastName>
<ForeName>Anderson</ForeName>
<Initials>A</Initials>
<AffiliationInfo><Affiliation>EA 3279, Self-perceived Health Assessment Research Unit, School of Medicine, Aix Marseille Université, Marseille, France.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Billette de Villemeur</LastName>
<ForeName>Thierry</ForeName>
<Initials>T</Initials>
<AffiliationInfo><Affiliation>Sorbonne Université, UPMC, GRC ConCer-LD, Paris, France.</Affiliation>
</AffiliationInfo>
<AffiliationInfo><Affiliation>Service de Neuropédiatrie-Pathologie du développement, Centre de référence des déficits intellectuels de causes rares, Hôpital Trousseau, Assistance Publique Hôpitaux de Paris, Paris, France.</Affiliation>
</AffiliationInfo>
<AffiliationInfo><Affiliation>Service de Polyhandicap Pédiatrique, Assistance Publique Hôpitaux de Paris, Hôpital de La Roche Guyon, La Roche Guyon, France.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Auquier</LastName>
<ForeName>Pascal</ForeName>
<Initials>P</Initials>
<AffiliationInfo><Affiliation>EA 3279, Self-perceived Health Assessment Research Unit, School of Medicine, Aix Marseille Université, Marseille, France.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><CollectiveName>French Polyhandicap Group</CollectiveName>
</Author>
</AuthorList>
<Language>eng</Language>
<PublicationTypeList><PublicationType UI="D016428">Journal Article</PublicationType>
<PublicationType UI="D013485">Research Support, Non-U.S. Gov't</PublicationType>
</PublicationTypeList>
<ArticleDate DateType="Electronic"><Year>2019</Year>
<Month>02</Month>
<Day>04</Day>
</ArticleDate>
</Article>
<MedlineJournalInfo><Country>United States</Country>
<MedlineTA>PLoS One</MedlineTA>
<NlmUniqueID>101285081</NlmUniqueID>
<ISSNLinking>1932-6203</ISSNLinking>
</MedlineJournalInfo>
<CitationSubset>IM</CitationSubset>
<MeshHeadingList><MeshHeading><DescriptorName UI="D000223" MajorTopicYN="N">Adaptation, Psychological</DescriptorName>
<QualifierName UI="Q000502" MajorTopicYN="N">physiology</QualifierName>
</MeshHeading>
<MeshHeading><DescriptorName UI="D003430" MajorTopicYN="N">Cross-Sectional Studies</DescriptorName>
</MeshHeading>
<MeshHeading><DescriptorName UI="D006233" MajorTopicYN="N">Disabled Persons</DescriptorName>
<QualifierName UI="Q000523" MajorTopicYN="Y">psychology</QualifierName>
</MeshHeading>
<MeshHeading><DescriptorName UI="D005220" MajorTopicYN="N">Fathers</DescriptorName>
<QualifierName UI="Q000523" MajorTopicYN="N">psychology</QualifierName>
</MeshHeading>
<MeshHeading><DescriptorName UI="D005260" MajorTopicYN="N">Female</DescriptorName>
</MeshHeading>
<MeshHeading><DescriptorName UI="D005602" MajorTopicYN="N" Type="Geographic">France</DescriptorName>
</MeshHeading>
<MeshHeading><DescriptorName UI="D006282" MajorTopicYN="N">Health Personnel</DescriptorName>
<QualifierName UI="Q000523" MajorTopicYN="N">psychology</QualifierName>
</MeshHeading>
<MeshHeading><DescriptorName UI="D006304" MajorTopicYN="N">Health Status</DescriptorName>
</MeshHeading>
<MeshHeading><DescriptorName UI="D006801" MajorTopicYN="N">Humans</DescriptorName>
</MeshHeading>
<MeshHeading><DescriptorName UI="D008297" MajorTopicYN="N">Male</DescriptorName>
</MeshHeading>
<MeshHeading><DescriptorName UI="D008875" MajorTopicYN="N">Middle Aged</DescriptorName>
</MeshHeading>
<MeshHeading><DescriptorName UI="D009035" MajorTopicYN="N">Mothers</DescriptorName>
<QualifierName UI="Q000523" MajorTopicYN="N">psychology</QualifierName>
</MeshHeading>
<MeshHeading><DescriptorName UI="D010290" MajorTopicYN="N">Parents</DescriptorName>
<QualifierName UI="Q000523" MajorTopicYN="Y">psychology</QualifierName>
</MeshHeading>
<MeshHeading><DescriptorName UI="D011788" MajorTopicYN="N">Quality of Life</DescriptorName>
<QualifierName UI="Q000523" MajorTopicYN="Y">psychology</QualifierName>
</MeshHeading>
<MeshHeading><DescriptorName UI="D013315" MajorTopicYN="N">Stress, Psychological</DescriptorName>
<QualifierName UI="Q000523" MajorTopicYN="N">psychology</QualifierName>
</MeshHeading>
<MeshHeading><DescriptorName UI="D011795" MajorTopicYN="N">Surveys and Questionnaires</DescriptorName>
</MeshHeading>
</MeshHeadingList>
<CoiStatement>The authors have declared that no competing interests exist.</CoiStatement>
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Impact of severe polyhandicap on parents' quality of life: A large French cross-sectional study.

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

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