Exploring access to end of life care for ethnic minorities with end stage kidney disease through recruitment in action research

2.50
Hdl Handle:
http://hdl.handle.net/10547/621943
Title:
Exploring access to end of life care for ethnic minorities with end stage kidney disease through recruitment in action research
Authors:
Wilkinson, Emma; Randhawa, Gurch ( 0000-0002-2289-5859 ) ; Brown, Edwina; Da Silva Gane, Maria; Stoves, John; Warwick, Graham; Akhtar, Tahira; Magee, Regina; Sharman, Sue; Farrington, Ken
Abstract:
Background: 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.
Citation:
Wilkinson 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, 15 (1).
Publisher:
BioMed Central Ltd.
Journal:
BMC Palliative Care
Issue Date:
11-Jul-2016
URI:
http://hdl.handle.net/10547/621943
DOI:
10.1186/s12904-016-0128-1
Additional Links:
http://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-016-0128-1
Type:
Article
Language:
en
ISSN:
1472-684X
Appears in Collections:
Health

Full metadata record

DC FieldValue Language
dc.contributor.authorWilkinson, Emmaen
dc.contributor.authorRandhawa, Gurchen
dc.contributor.authorBrown, Edwinaen
dc.contributor.authorDa Silva Gane, Mariaen
dc.contributor.authorStoves, Johnen
dc.contributor.authorWarwick, Grahamen
dc.contributor.authorAkhtar, Tahiraen
dc.contributor.authorMagee, Reginaen
dc.contributor.authorSharman, Sueen
dc.contributor.authorFarrington, Kenen
dc.date.accessioned2017-01-09T13:59:18Z-
dc.date.available2017-01-09T13:59:18Z-
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, 15 (1).en
dc.identifier.issn1472-684X-
dc.identifier.doi10.1186/s12904-016-0128-1-
dc.identifier.urihttp://hdl.handle.net/10547/621943-
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.isoenen
dc.publisherBioMed Central Ltd.en
dc.relation.urlhttp://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-016-0128-1en
dc.rightsGreen - can archive pre-print and post-print or publisher's version/PDF-
dc.rights.urihttp://creativecommons.org/licenses/by-nc-nd/4.0/*
dc.subjectaccessen
dc.subjectethnicityen
dc.subjectend stage kidney diseaseen
dc.subjectend of life careen
dc.subjectaction researchen
dc.subjectcommunicationen
dc.subjectend stage renal failureen
dc.subjectB701 Palliative Care Nursingen
dc.titleExploring access to end of life care for ethnic minorities with end stage kidney disease through recruitment in action researchen
dc.typeArticleen
dc.identifier.journalBMC Palliative Careen
dc.date.updated2017-01-09T12:00:01Z-
This item is licensed under a Creative Commons License
Creative Commons
All Items in UOBREP are protected by copyright, with all rights reserved, unless otherwise indicated.