Impact of severe polyhandicap cared for at home on French informal caregivers’ burden: a cross-sectional study
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...
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BMJ Publishing Group
2020-01-01
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| Online Access: | https://bmjopen.bmj.com/content/10/1/e032257.full |
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| author | Alexandra Afenjar Stéphanie Valence Pascal Auquier Marie-Christine Rousseau Karine Baumstarck Maria Valkov Agnés Felce Catherine Brisse Sherezad Khaldi-Cherif Anderson Loundou Tanguy Leroy Souhali Haddadou Cécile Freihuber Julie Bonheur Marie-Christine Nougues Laurent Luciani Jean-Pierre Nouet Catherine Coiffier Philippe Sellier Sophie Mathieu Moustafa Ardati Delphine Héron Diana Rodriguez Diana Doummar Marie-Laure Moutard Daniel Willocq Stéphane Pietra Stéphane Lenormand Elizabeth Grimont |
| author_facet | Alexandra Afenjar Stéphanie Valence Pascal Auquier Marie-Christine Rousseau Karine Baumstarck Maria Valkov Agnés Felce Catherine Brisse Sherezad Khaldi-Cherif Anderson Loundou Tanguy Leroy Souhali Haddadou Cécile Freihuber Julie Bonheur Marie-Christine Nougues Laurent Luciani Jean-Pierre Nouet Catherine Coiffier Philippe Sellier Sophie Mathieu Moustafa Ardati Delphine Héron Diana Rodriguez Diana Doummar Marie-Laure Moutard Daniel Willocq Stéphane Pietra Stéphane Lenormand Elizabeth Grimont |
| author_sort | Alexandra Afenjar |
| collection | DOAJ |
| description | 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, 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).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. |
| format | Article |
| id | doaj-art-e33e7c8ab018482e9f0c966dd64a6395 |
| institution | Kabale University |
| issn | 2044-6055 |
| language | English |
| publishDate | 2020-01-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-e33e7c8ab018482e9f0c966dd64a63952024-12-06T23:10:07ZengBMJ Publishing GroupBMJ Open2044-60552020-01-0110110.1136/bmjopen-2019-032257Impact of severe polyhandicap cared for at home on French informal caregivers’ burden: a cross-sectional studyAlexandra Afenjar0Stéphanie Valence1Pascal Auquier2Marie-Christine Rousseau3Karine Baumstarck4Maria Valkov5Agnés Felce6Catherine Brisse7Sherezad Khaldi-Cherif8Anderson Loundou9Tanguy Leroy10Souhali HaddadouCécile FreihuberJulie BonheurMarie-Christine NouguesLaurent LucianiJean-Pierre NouetCatherine CoiffierPhilippe SellierSophie MathieuMoustafa ArdatiDelphine Héron11Diana Rodriguez12Diana DoummarMarie-Laure MoutardDaniel WillocqStéphane PietraStéphane LenormandElizabeth GrimontService de Neuropédiatrie, APHP, Hôpital Trousseau, Paris, France4 Department of Neuropediatry & Referral Center for Intellectual disabilities of rare causes, AP-HP.Sorbonne Université, Hopital Armand-Trousseau, Paris, France2 EA 3279, Self-perceived Health Assessment Research Unit, Aix-Marseille Universite, Marseille, France1 Hôpital San Salvadour, Assistance Publique - Hôpitaux de Paris, Paris, Île-de-France, FranceLaboratoire de Santé Publique CERESS, Aix-Marseille Université, Marseille, France1 Hôpital San Salvadour, Assistance Publique - Hôpitaux de Paris, Paris, Île-de-France, France3 Hôpital Marin d`Hendaye, Assistance Publique Hopitaux de Paris, Paris, Île-de-France, France4 Comité d`Études, d`Éducation et de Soins Auprès des Personnes Polyhandicapées, Paris, France5 UGECAM Ile de France, Paris, Île-de-France, France2 EA 3279, Self-perceived Health Assessment Research Unit, Aix-Marseille Universite, Marseille, FranceGRePS EA4163 Institute of Psychology, Lumière University Lyon 2, Bron, France2Centre de Référence “Déficiences Intellectuelles de Causes Rares, Paris, France6 Département de Génétique, Hôpitaux Universitaires Paris Ile-de-France Ouest, Paris, FranceObjectives 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, 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).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.https://bmjopen.bmj.com/content/10/1/e032257.full |
| spellingShingle | Alexandra Afenjar Stéphanie Valence Pascal Auquier Marie-Christine Rousseau Karine Baumstarck Maria Valkov Agnés Felce Catherine Brisse Sherezad Khaldi-Cherif Anderson Loundou Tanguy Leroy Souhali Haddadou Cécile Freihuber Julie Bonheur Marie-Christine Nougues Laurent Luciani Jean-Pierre Nouet Catherine Coiffier Philippe Sellier Sophie Mathieu Moustafa Ardati Delphine Héron Diana Rodriguez Diana Doummar Marie-Laure Moutard Daniel Willocq Stéphane Pietra Stéphane Lenormand Elizabeth Grimont Impact of severe polyhandicap cared for at home on French informal caregivers’ burden: a cross-sectional study BMJ Open |
| title | Impact of severe polyhandicap cared for at home on French informal caregivers’ burden: a cross-sectional study |
| title_full | Impact of severe polyhandicap cared for at home on French informal caregivers’ burden: a cross-sectional study |
| title_fullStr | Impact of severe polyhandicap cared for at home on French informal caregivers’ burden: a cross-sectional study |
| title_full_unstemmed | Impact of severe polyhandicap cared for at home on French informal caregivers’ burden: a cross-sectional study |
| title_short | Impact of severe polyhandicap cared for at home on French informal caregivers’ burden: a cross-sectional study |
| title_sort | impact of severe polyhandicap cared for at home on french informal caregivers burden a cross sectional study |
| url | https://bmjopen.bmj.com/content/10/1/e032257.full |
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