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dc.contributor.authorWilkinson, Emma
dc.contributor.authorRandhawa, Gurch
dc.contributor.authorBrown, Edwina
dc.contributor.authorDa Silva Gane, Maria
dc.contributor.authorStoves, John
dc.contributor.authorWarwick, Graham
dc.contributor.authorAkhtar, Tahira
dc.contributor.authorMagee, Regina
dc.contributor.authorSharman, Sue
dc.contributor.authorFarrington, Ken
dc.date.accessioned2019-11-08T01:15:20Z
dc.date.available2019-11-08T01:15:20Z
dc.date.issued2016-07-11
dc.identifier.citationWilkinson , E , Randhawa , G , Brown , E , Da Silva Gane , M , Stoves , J , Warwick , G , Akhtar , T , Magee , R , Sharman , S & Farrington , K 2016 , ' Exploring access to end of life care for ethnic minorities with end stage kidney disease through recruitment in action research ' , BMC Palliative Care , vol. 15 , pp. 57 . https://doi.org/10.1186/s12904-016-0128-1
dc.identifier.issn1472-684X
dc.identifier.otherPURE: 13324126
dc.identifier.otherPURE UUID: ce692e0c-eab6-4414-82de-22849d5f4f07
dc.identifier.otherPubMed: 27401732
dc.identifier.otherPubMedCentral: PMC4940835
dc.identifier.otherScopus: 84978972785
dc.identifier.urihttp://hdl.handle.net/2299/21858
dc.description.abstractBACKGROUND: Variation in provision of palliative care in kidney services and practitioner concerns to provide equitable access led to the development of this study which focussed on the perspectives of South Asian patients and their care providers. As people with a South Asian background experience a higher risk of Type 2 Diabetes (T2DM) and end stage kidney failure (ESKF) compared to the majority population but wait longer for a transplant, there is a need for end of life care to be accessible for this group of patients. Furthermore because non English speakers and people at end of life are often excluded from research there is a dearth of research evidence with which to inform service improvement. This paper aims to explore issues relating to the process of recruitment of patients for a research project which contribute to our understanding of access to end of life care for ethnic minority patients in the kidney setting. METHODS: The study employed an action research methodology with interviews and focus groups to capture and reflect on the process of engaging with South Asian patients about end of life care. Researchers and kidney care clinicians on four NHS sites in the UK recruited South Asian patients with ESKF who were requiring end of life care to take part in individual interviews; and other clinicians who provided care to South Asian kidney patients at end of life to take part in focus groups exploring end of life care issues. In action research planning, action and evaluation are interlinked and data were analysed with emergent themes fed back to care providers through the research cycle. Reflections on the process of patient recruitment generated focus group discussions about access which were analysed thematically and reported here. RESULTS: Sixteen patients were recruited to interview and 45 different care providers took part in 14 focus groups across the sites. The process of recruiting patients to interview and subsequent focus group data highlighted some of the key issues concerning access to end of life care. These were: the identification of patients approaching end of life; and their awareness of end of life care; language barriers and informal carers' roles in mediating communication; and contrasting cultures in end of life kidney care. CONCLUSIONS: Reflection on the process of recruitment in this action research study provided insight into the complex scenario of end of life in kidney care. Some of the emerging issues such as the difficulty identifying patients are likely to be common across all patient groups, whilst others concerning language barriers and third party communication are more specific to ethnic minorities. A focus on South Asian ethnicity contributes to better understanding of patient perspectives and generic concepts as well as access to end of life kidney care for this group of patients in the UK. Action research was a useful methodology for achieving this and for informing future research to include informal carers and other ethnic groups.en
dc.language.isoeng
dc.relation.ispartofBMC Palliative Care
dc.rightsOpen
dc.subjectAged, 80 and over
dc.subjectAsia, Western
dc.subjectAwareness
dc.subjectEthnic Groups
dc.subjectFemale
dc.subjectFocus Groups
dc.subjectHealth Services Accessibility
dc.subjectHumans
dc.subjectKidney Failure, Chronic
dc.subjectMale
dc.subjectNeeds Assessment
dc.subjectPatient Selection
dc.subjectTerminal Care
dc.subjectUnited Kingdom
dc.subjectJournal Article
dc.titleExploring access to end of life care for ethnic minorities with end stage kidney disease through recruitment in action researchen
dc.contributor.institutionBasic and Clinical Science Unit
dc.contributor.institutionCentre for Health Services and Clinical Research
dc.contributor.institutionDepartment of Pharmacy, Pharmacology and Postgraduate Medicine
dc.contributor.institutionSchool of Life and Medical Sciences
dc.description.statusPeer reviewed
dc.relation.schoolSchool of Life and Medical Sciences
dc.description.versiontypeFinal Published version
dcterms.dateAccepted2016-07-11
rioxxterms.versionVoR
rioxxterms.versionofrecordhttps://doi.org/10.1186/s12904-016-0128-1
rioxxterms.licenseref.urihttp://creativecommons.org/licenses/by/4.0/
rioxxterms.typeJournal Article/Review
herts.preservation.rarelyaccessedtrue
herts.rights.accesstypeOpen


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