Expectations and experiences of informal caregivers of stroke patients in Portugal
Identifieur interne : 000364 ( Pmc/Checkpoint ); précédent : 000363; suivant : 000365Expectations and experiences of informal caregivers of stroke patients in Portugal
Auteurs : Silvina Santana ; Mariana Ribeiro ; Patrícia Redondo ; Marta VianaSource :
- International Journal of Integrated Care [ 1568-4156 ] ; 2011.
Abstract
We discuss knowledge and expectations of services and other help available in the community to informal caregivers of stroke patients in Portugal, and their perceptions on actual experience within the next six months after patient discharge from the acute care hospital.
Most stroke patients are supported by close kin members, the informal caregivers, who play an important role in their daily care and rehabilitation. Therefore, it is important to understand how these carers cope with the stroke and identify needs and expectations that might help design and implement support measures. The discharge from the hospital is a moment of truth between informal caregiver’s expectations and the system’s performance that deserves to be investigated. Identified informal caregivers of patients diagnosed with stroke, admitted to the stroke unit of a hospital in Centre Region, Portugal and included in an RCT were followed within the next six months after patients’ discharge. Their initial expectations towards the health and social system and their ability to cope with change brought by the disease and associated costs and further experiences with entities involved in health and social care delivery are evaluated.
We discuss explanations for preliminary findings. We conclude stressing the contribution of the society awareness and participation in the development and integration of health and social care services.
Awareness on services and help available for stroke patients together with entities which provide them is limited among informal caregivers of stroke patients.
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PubMed Central: 3184802
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<front><journal-meta><journal-id journal-id-type="nlm-ta">Int J Integr Care</journal-id><journal-id journal-id-type="publisher-id">IJIC</journal-id><journal-title-group><journal-title>International Journal of Integrated Care</journal-title></journal-title-group><issn pub-type="epub">1568-4156</issn><publisher><publisher-name>Igitur Publishing</publisher-name><publisher-loc>Utrecht, The Netherlands</publisher-loc></publisher></journal-meta><article-meta><article-id pub-id-type="pmc">3184802</article-id><article-id pub-id-type="publisher-id">ijic2011107</article-id><article-categories><subj-group subj-group-type="heading"><subject>Conference Abstract</subject></subj-group></article-categories><title-group><article-title>Expectations and experiences of informal caregivers of stroke patients in Portugal</article-title></title-group><contrib-group><contrib contrib-type="author"><name><surname>Santana</surname><given-names>Silvina</given-names></name><degrees>PhD</degrees><role>Associate Professor with Agregação</role><aff>Institute of Electronics Engineering and Telematics of Aveiro, Department of Economics, Management and Industrial Engineering, University of Aveiro, Portugal</aff></contrib><contrib contrib-type="author"><name><surname>Ribeiro</surname><given-names>Mariana</given-names></name><degrees>MSc</degrees><aff>Institute of Electronics Engineering and Telematics of Aveiro, Department of Economics, Management and Industrial Engineering, University of Aveiro, Portugal</aff></contrib><contrib contrib-type="author"><name><surname>Redondo</surname><given-names>Patrícia</given-names></name><degrees>MSc, PhD Candidate</degrees><aff>Institute of Electronics Engineering and Telematics of Aveiro, Department of Economics, Management and Industrial Engineering, University of Aveiro, Portugal</aff></contrib><contrib contrib-type="author"><name><surname>Viana</surname><given-names>Marta</given-names></name><degrees>MSc</degrees><aff>Institute of Electronics Engineering and Telematics of Aveiro, Department of Economics, Management and Industrial Engineering, University of Aveiro, Portugal</aff></contrib></contrib-group><author-notes><corresp id="cor1">Correspondence to: Silvina Santana, E-mail: <email>silvina.santana@ua.pt</email></corresp></author-notes><pub-date pub-type="collection"><season>Jul-Sep</season><year>2011</year></pub-date><pub-date pub-type="epub"><day>1</day><month>8</month><year>2011</year></pub-date><volume>11</volume><issue>Suppl</issue><elocation-id>e107</elocation-id><ext-link ext-link-type="uri" xlink:href="http://persistent-identifier.nl/?identifier=URN:NBN:NL:UI:10-1-101544/ijic2011-107">URN:NBN:NL:UI:10-1-101544 / ijic2011-107</ext-link><ext-link ext-link-type="uri" xlink:href="http://www.ijic.org">http://www.ijic.org</ext-link><permissions><copyright-statement>Copyright 2011, International Journal of Integrated Care (IJIC)</copyright-statement><copyright-year>2011</copyright-year><license license-type="creative-commons" xlink:href="http://creativecommons.org/licenses/by-nc/3.0"><license-p><pmc-comment>CREATIVE COMMONS</pmc-comment>This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (<ext-link ext-link-type="uri" xlink:href="http://creativecommons.org/licenses/by-nc/3.0">http://creativecommons.org/licenses/by-nc/3.0</ext-link>), which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.</license-p></license></permissions><abstract><sec id="st1"><title>Introduction</title><p>We discuss knowledge and expectations of services and other help available in the community to informal caregivers of stroke patients in Portugal, and their perceptions on actual experience within the next six months after patient discharge from the acute care hospital.</p></sec><sec id="st2"><title>Theory and methods</title><p>Most stroke patients are supported by close kin members, the informal caregivers, who play an important role in their daily care and rehabilitation. Therefore, it is important to understand how these carers cope with the stroke and identify needs and expectations that might help design and implement support measures. The discharge from the hospital is a moment of truth between informal caregiver’s expectations and the system’s performance that deserves to be investigated. Identified informal caregivers of patients diagnosed with stroke, admitted to the stroke unit of a hospital in Centre Region, Portugal and included in an RCT were followed within the next six months after patients’ discharge. Their initial expectations towards the health and social system and their ability to cope with change brought by the disease and associated costs and further experiences with entities involved in health and social care delivery are evaluated.</p></sec><sec id="st3"><title>Results</title><p>We discuss explanations for preliminary findings. We conclude stressing the contribution of the society awareness and participation in the development and integration of health and social care services.</p></sec><sec id="st4"><title>Conclusions and discussion</title><p>Awareness on services and help available for stroke patients together with entities which provide them is limited among informal caregivers of stroke patients.</p></sec></abstract><kwd-group><title>Keywords</title><kwd>informal caregiver</kwd><kwd>informal caregiver expectations</kwd><kwd>informal caregiver experiences</kwd><kwd>health and social services</kwd><kwd>stroke</kwd><kwd>RCT</kwd><kwd>Portugal</kwd></kwd-group></article-meta></front></pmc><affiliations><list></list><tree><noCountry><name sortKey="Redondo, Patricia" sort="Redondo, Patricia" uniqKey="Redondo P" first="Patrícia" last="Redondo">Patrícia Redondo</name><name sortKey="Ribeiro, Mariana" sort="Ribeiro, Mariana" uniqKey="Ribeiro M" first="Mariana" last="Ribeiro">Mariana Ribeiro</name><name sortKey="Santana, Silvina" sort="Santana, Silvina" uniqKey="Santana S" first="Silvina" last="Santana">Silvina Santana</name><name sortKey="Viana, Marta" sort="Viana, Marta" uniqKey="Viana M" first="Marta" last="Viana">Marta Viana</name></noCountry></tree></affiliations></record>Pour manipuler ce document sous Unix (Dilib)
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