"Small small interventions, big big roles"- a qualitative study of patient, care-giver and health-care worker experiences of a palliative care programme in Kerala, India.
Identifieur interne : 000698 ( Main/Exploration ); précédent : 000697; suivant : 000699"Small small interventions, big big roles"- a qualitative study of patient, care-giver and health-care worker experiences of a palliative care programme in Kerala, India.
Auteurs : Rekha Rachel Philip [Inde] ; Emilie Venables [Luxembourg (pays), Afrique du Sud] ; Abdulla Manima [Inde] ; Jaya Prasad Tripathy [France, Inde] ; Sairu Philip [Inde]Source :
- BMC palliative care [ 1472-684X ] ; 2019.
Descripteurs français
- KwdFr :
- Adolescent (MeSH), Adulte (MeSH), Adulte d'âge moyen (MeSH), Aidants (psychologie), Attitude du personnel soignant (MeSH), Attitude envers la santé (MeSH), Femelle (MeSH), Humains (MeSH), Inde (MeSH), Jeune adulte (MeSH), Mâle (MeSH), Personnel de santé (psychologie), Prestations des soins de santé (normes), Relations entre professionnels de santé et patients (MeSH), Rôle de l'infirmier (psychologie), Rôle médical (psychologie), Rôle professionnel (MeSH), Services de soins à domicile (normes), Soins palliatifs (normes), Soins palliatifs (psychologie), Sujet âgé (MeSH).
- MESH :
- normes : Prestations des soins de santé, Services de soins à domicile, Soins palliatifs.
- psychologie : Aidants, Personnel de santé, Rôle de l'infirmier, Rôle médical, Soins palliatifs.
- Adolescent, Adulte, Adulte d'âge moyen, Attitude du personnel soignant, Attitude envers la santé, Femelle, Humains, Inde, Jeune adulte, Mâle, Relations entre professionnels de santé et patients, Rôle professionnel, Sujet âgé.
- Wicri :
- geographic : Inde.
English descriptors
- KwdEn :
- Adolescent (MeSH), Adult (MeSH), Aged (MeSH), Attitude of Health Personnel (MeSH), Attitude to Health (MeSH), Caregivers (psychology), Delivery of Health Care (standards), Female (MeSH), Health Personnel (psychology), Home Care Services (standards), Humans (MeSH), India (MeSH), Male (MeSH), Middle Aged (MeSH), Nurse's Role (psychology), Palliative Care (psychology), Palliative Care (standards), Physician's Role (psychology), Professional Role (MeSH), Professional-Patient Relations (MeSH), Young Adult (MeSH).
- MESH :
- geographic : India.
- psychology : Caregivers, Health Personnel, Nurse's Role, Palliative Care, Physician's Role.
- standards : Delivery of Health Care, Home Care Services, Palliative Care.
- Adolescent, Adult, Aged, Attitude of Health Personnel, Attitude to Health, Female, Humans, Male, Middle Aged, Professional Role, Professional-Patient Relations, Young Adult.
Abstract
BACKGROUND
Home-based palliative care is an essential resource for many communities. We conducted a qualitative study to explore perceptions of a home-based palliative care programme in Kerala, India, from the perspective of patients, their care-givers and the doctors, nurses and volunteers running the intervention.
METHODS
A descriptive qualitative study was carried out. One focus group discussion (FGD) was conducted with patients (n = 8) and two with male and female volunteers (n = 12); and interviews were conducted with doctors (n = 3), nurses (n = 3) and care-givers (n = 14). FGDs and interviews were conducted in Malayalam, audio-recorded, transcribed verbatim and translated into English. Transcripts were coded and analysed using manual content analysis.
RESULTS
Doctors, nurses and volunteers have interdependent roles in providing palliative care to patients, including mentorship, training, patient care and advocating for patient needs. Volunteers also considered themselves to be mediators between families and the programme. Care-givers were mainly female and were caring for relatives. They have physically demanding, psychologically stressful and socially restrictive experiences of care-giving. They felt that the programme facilitated their role as care-givers by giving them training and support. Patients with long standing illnesses felt that the programme enabled them to become more independent and self-reliant. The local community supports the programme through economic contributions and offering practical assistance to patients.
CONCLUSION
The salient features of this programme include the provision of regular holistic care through a team of doctors, nurses and patients. The programme was perceived to have improved the lives of patients and their care-givers. The involvement of volunteers from the local community was perceived as a strength of the programme, whilst simultaneously being a challenge.
DOI: 10.1186/s12904-019-0400-2
PubMed: 30717717
PubMed Central: PMC6362568
Affiliations:
Links toward previous steps (curation, corpus...)
Le document en format XML
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Rachel" uniqKey="Philip R" first="Rekha Rachel" last="Philip">Rekha Rachel Philip</name><affiliation wicri:level="1"><nlm:affiliation>Department of Community Medicine, Government T.D Medical College Alappuzha, Vandanam P.O, Alappuzha, Kerala, India. rekharachel@gmail.com.</nlm:affiliation><country xml:lang="fr">Inde</country><wicri:regionArea>Department of Community Medicine, Government T.D Medical College Alappuzha, Vandanam P.O, Alappuzha, Kerala</wicri:regionArea><wicri:noRegion>Kerala</wicri:noRegion></affiliation></author><author><name sortKey="Venables, Emilie" sort="Venables, Emilie" uniqKey="Venables E" first="Emilie" last="Venables">Emilie Venables</name><affiliation wicri:level="1"><nlm:affiliation>Médecins Sans Frontières - Operational Centre Brussels, Medical Department, Operational Research Unit (LuxOR), Luxembourg, Luxembourg.</nlm:affiliation><country xml:lang="fr">Luxembourg (pays)</country><wicri:regionArea>Médecins Sans Frontières - Operational Centre Brussels, 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of Health Personnel (MeSH)</term><term>Attitude to Health (MeSH)</term><term>Caregivers (psychology)</term><term>Delivery of Health Care (standards)</term><term>Female (MeSH)</term><term>Health Personnel (psychology)</term><term>Home Care Services (standards)</term><term>Humans (MeSH)</term><term>India (MeSH)</term><term>Male (MeSH)</term><term>Middle Aged (MeSH)</term><term>Nurse's Role (psychology)</term><term>Palliative Care (psychology)</term><term>Palliative Care (standards)</term><term>Physician's Role (psychology)</term><term>Professional Role (MeSH)</term><term>Professional-Patient Relations (MeSH)</term><term>Young Adult (MeSH)</term></keywords><keywords scheme="KwdFr" xml:lang="fr"><term>Adolescent (MeSH)</term><term>Adulte (MeSH)</term><term>Adulte d'âge moyen (MeSH)</term><term>Aidants (psychologie)</term><term>Attitude du personnel soignant (MeSH)</term><term>Attitude envers la santé (MeSH)</term><term>Femelle (MeSH)</term><term>Humains (MeSH)</term><term>Inde (MeSH)</term><term>Jeune adulte (MeSH)</term><term>Mâle (MeSH)</term><term>Personnel de santé (psychologie)</term><term>Prestations des soins de santé (normes)</term><term>Relations entre professionnels de santé et patients (MeSH)</term><term>Rôle de l'infirmier (psychologie)</term><term>Rôle médical (psychologie)</term><term>Rôle professionnel (MeSH)</term><term>Services de soins à domicile (normes)</term><term>Soins palliatifs (normes)</term><term>Soins palliatifs (psychologie)</term><term>Sujet âgé (MeSH)</term></keywords><keywords scheme="MESH" type="geographic" xml:lang="en"><term>India</term></keywords><keywords scheme="MESH" qualifier="normes" xml:lang="fr"><term>Prestations des soins de santé</term><term>Services de soins à domicile</term><term>Soins palliatifs</term></keywords><keywords scheme="MESH" qualifier="psychologie" xml:lang="fr"><term>Aidants</term><term>Personnel de santé</term><term>Rôle de l'infirmier</term><term>Rôle médical</term><term>Soins palliatifs</term></keywords><keywords scheme="MESH" qualifier="psychology" xml:lang="en"><term>Caregivers</term><term>Health Personnel</term><term>Nurse's Role</term><term>Palliative Care</term><term>Physician's Role</term></keywords><keywords scheme="MESH" qualifier="standards" xml:lang="en"><term>Delivery of Health Care</term><term>Home Care Services</term><term>Palliative Care</term></keywords><keywords scheme="MESH" xml:lang="en"><term>Adolescent</term><term>Adult</term><term>Aged</term><term>Attitude of Health Personnel</term><term>Attitude to Health</term><term>Female</term><term>Humans</term><term>Male</term><term>Middle Aged</term><term>Professional Role</term><term>Professional-Patient Relations</term><term>Young Adult</term></keywords><keywords scheme="MESH" xml:lang="fr"><term>Adolescent</term><term>Adulte</term><term>Adulte d'âge moyen</term><term>Attitude du personnel soignant</term><term>Attitude envers la santé</term><term>Femelle</term><term>Humains</term><term>Inde</term><term>Jeune adulte</term><term>Mâle</term><term>Relations entre professionnels de santé et patients</term><term>Rôle professionnel</term><term>Sujet âgé</term></keywords><keywords scheme="Wicri" type="geographic" xml:lang="fr"><term>Inde</term></keywords></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en"><p><b>BACKGROUND</b></p><p>Home-based palliative care is an essential resource for many communities. We conducted a qualitative study to explore perceptions of a home-based palliative care programme in Kerala, India, from the perspective of patients, their care-givers and the doctors, nurses and volunteers running the intervention.</p></div><div type="abstract" xml:lang="en"><p><b>METHODS</b></p><p>A descriptive qualitative study was carried out. One focus group discussion (FGD) was conducted with patients (n = 8) and two with male and female volunteers (n = 12); and interviews were conducted with doctors (n = 3), nurses (n = 3) and care-givers (n = 14). FGDs and interviews were conducted in Malayalam, audio-recorded, transcribed verbatim and translated into English. Transcripts were coded and analysed using manual content analysis.</p></div><div type="abstract" xml:lang="en"><p><b>RESULTS</b></p><p>Doctors, nurses and volunteers have interdependent roles in providing palliative care to patients, including mentorship, training, patient care and advocating for patient needs. Volunteers also considered themselves to be mediators between families and the programme. Care-givers were mainly female and were caring for relatives. They have physically demanding, psychologically stressful and socially restrictive experiences of care-giving. They felt that the programme facilitated their role as care-givers by giving them training and support. Patients with long standing illnesses felt that the programme enabled them to become more independent and self-reliant. The local community supports the programme through economic contributions and offering practical assistance to patients.</p></div><div type="abstract" xml:lang="en"><p><b>CONCLUSION</b></p><p>The salient features of this programme include the provision of regular holistic care through a team of doctors, nurses and patients. The programme was perceived to have improved the lives of patients and their care-givers. The involvement of volunteers from the local community was perceived as a strength of the programme, whilst simultaneously being a challenge.</p></div></front></TEI><pubmed><MedlineCitation Status="MEDLINE" Owner="NLM"><PMID Version="1">30717717</PMID><DateCompleted><Year>2019</Year><Month>05</Month><Day>28</Day></DateCompleted><DateRevised><Year>2020</Year><Month>02</Month><Day>25</Day></DateRevised><Article PubModel="Electronic"><Journal><ISSN IssnType="Electronic">1472-684X</ISSN><JournalIssue CitedMedium="Internet"><Volume>18</Volume><Issue>1</Issue><PubDate><Year>2019</Year><Month>Feb</Month><Day>04</Day></PubDate></JournalIssue><Title>BMC palliative care</Title><ISOAbbreviation>BMC Palliat Care</ISOAbbreviation></Journal><ArticleTitle>"Small small interventions, big big roles"- a qualitative study of patient, care-giver and health-care worker experiences of a palliative care programme in Kerala, India.</ArticleTitle><Pagination><MedlinePgn>16</MedlinePgn></Pagination><ELocationID EIdType="doi" ValidYN="Y">10.1186/s12904-019-0400-2</ELocationID><Abstract><AbstractText Label="BACKGROUND" NlmCategory="BACKGROUND">Home-based palliative care is an essential resource for many communities. We conducted a qualitative study to explore perceptions of a home-based palliative care programme in Kerala, India, from the perspective of patients, their care-givers and the doctors, nurses and volunteers running the intervention.</AbstractText><AbstractText Label="METHODS" NlmCategory="METHODS">A descriptive qualitative study was carried out. One focus group discussion (FGD) was conducted with patients (n = 8) and two with male and female volunteers (n = 12); and interviews were conducted with doctors (n = 3), nurses (n = 3) and care-givers (n = 14). FGDs and interviews were conducted in Malayalam, audio-recorded, transcribed verbatim and translated into English. Transcripts were coded and analysed using manual content analysis.</AbstractText><AbstractText Label="RESULTS" NlmCategory="RESULTS">Doctors, nurses and volunteers have interdependent roles in providing palliative care to patients, including mentorship, training, patient care and advocating for patient needs. Volunteers also considered themselves to be mediators between families and the programme. Care-givers were mainly female and were caring for relatives. They have physically demanding, psychologically stressful and socially restrictive experiences of care-giving. They felt that the programme facilitated their role as care-givers by giving them training and support. Patients with long standing illnesses felt that the programme enabled them to become more independent and self-reliant. The local community supports the programme through economic contributions and offering practical assistance to patients.</AbstractText><AbstractText Label="CONCLUSION" NlmCategory="CONCLUSIONS">The salient features of this programme include the provision of regular holistic care through a team of doctors, nurses and patients. The programme was perceived to have improved the lives of patients and their care-givers. The involvement of volunteers from the local community was perceived as a strength of the programme, whilst simultaneously being a challenge.</AbstractText></Abstract><AuthorList CompleteYN="Y"><Author ValidYN="Y"><LastName>Philip</LastName><ForeName>Rekha Rachel</ForeName><Initials>RR</Initials><Identifier Source="ORCID">http://orcid.org/0000-0002-3285-6124</Identifier><AffiliationInfo><Affiliation>Department of Community Medicine, Government T.D Medical College Alappuzha, Vandanam P.O, Alappuzha, Kerala, India. rekharachel@gmail.com.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Venables</LastName><ForeName>Emilie</ForeName><Initials>E</Initials><AffiliationInfo><Affiliation>Médecins Sans Frontières - Operational Centre Brussels, Medical Department, Operational Research Unit (LuxOR), Luxembourg, Luxembourg.</Affiliation></AffiliationInfo><AffiliationInfo><Affiliation>Division of Social and Behavioural Sciences, School of Public Health and Family Medicine, University of Cape Town, Cape Town, South Africa.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Manima</LastName><ForeName>Abdulla</ForeName><Initials>A</Initials><AffiliationInfo><Affiliation>Malappuram Initiative in Palliative care, Malappuram, Kerala, India.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Tripathy</LastName><ForeName>Jaya Prasad</ForeName><Initials>JP</Initials><AffiliationInfo><Affiliation>International Union Against Tuberculosis and Lung Disease, Paris, France.</Affiliation></AffiliationInfo><AffiliationInfo><Affiliation>Department of Community Medicine, All India Institute of Medical Sciences, Nagpur, India.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Philip</LastName><ForeName>Sairu</ForeName><Initials>S</Initials><AffiliationInfo><Affiliation>Department of Community Medicine, Government T.D Medical College Alappuzha, Vandanam P.O, Alappuzha, Kerala, India.</Affiliation></AffiliationInfo></Author></AuthorList><Language>eng</Language><PublicationTypeList><PublicationType UI="D016428">Journal Article</PublicationType></PublicationTypeList><ArticleDate DateType="Electronic"><Year>2019</Year><Month>02</Month><Day>04</Day></ArticleDate></Article><MedlineJournalInfo><Country>England</Country><MedlineTA>BMC Palliat Care</MedlineTA><NlmUniqueID>101088685</NlmUniqueID><ISSNLinking>1472-684X</ISSNLinking></MedlineJournalInfo><CitationSubset>IM</CitationSubset><MeshHeadingList><MeshHeading><DescriptorName UI="D000293" MajorTopicYN="N">Adolescent</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D000328" MajorTopicYN="N">Adult</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D000368" MajorTopicYN="N">Aged</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D001291" MajorTopicYN="Y">Attitude of Health Personnel</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D001294" MajorTopicYN="Y">Attitude to Health</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D017028" MajorTopicYN="N">Caregivers</DescriptorName><QualifierName UI="Q000523" MajorTopicYN="N">psychology</QualifierName></MeshHeading><MeshHeading><DescriptorName UI="D003695" MajorTopicYN="N">Delivery of Health Care</DescriptorName><QualifierName UI="Q000592" MajorTopicYN="N">standards</QualifierName></MeshHeading><MeshHeading><DescriptorName UI="D005260" MajorTopicYN="N">Female</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D006282" MajorTopicYN="N">Health Personnel</DescriptorName><QualifierName UI="Q000523" MajorTopicYN="N">psychology</QualifierName></MeshHeading><MeshHeading><DescriptorName UI="D006699" MajorTopicYN="N">Home Care Services</DescriptorName><QualifierName UI="Q000592" MajorTopicYN="N">standards</QualifierName></MeshHeading><MeshHeading><DescriptorName UI="D006801" MajorTopicYN="N">Humans</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D007194" MajorTopicYN="N" Type="Geographic">India</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D008297" MajorTopicYN="N">Male</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D008875" MajorTopicYN="N">Middle Aged</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D024802" MajorTopicYN="N">Nurse's Role</DescriptorName><QualifierName UI="Q000523" MajorTopicYN="N">psychology</QualifierName></MeshHeading><MeshHeading><DescriptorName UI="D010166" MajorTopicYN="N">Palliative Care</DescriptorName><QualifierName UI="Q000523" MajorTopicYN="Y">psychology</QualifierName><QualifierName UI="Q000592" MajorTopicYN="N">standards</QualifierName></MeshHeading><MeshHeading><DescriptorName UI="D010819" MajorTopicYN="N">Physician's Role</DescriptorName><QualifierName UI="Q000523" MajorTopicYN="N">psychology</QualifierName></MeshHeading><MeshHeading><DescriptorName UI="D024382" MajorTopicYN="Y">Professional Role</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D011369" 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