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

Wilkinson E, Randhawa G, Brown E, Da Silva Gane M, Stoves J, Warwick G, Akhtar T, Magee R, Sharman S, Farrington K - BMC Palliat Care (2016)

Bottom Line: 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.

View Article: PubMed Central - PubMed

Affiliation: Institute for Health Research, University of Bedfordshire, Luton, UK.

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.

No MeSH data available.


Action research and recruitment
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Fig1: Action research and recruitment

Mentions: Action research is a collaborative research methodology which enables researchers and practitioners to work together to explore research questions in relation to theory and practice [14, 15]. It operates in a series of research cycles of action and reflection, drawing on the process of conducting the research as well as research outcomes to generate knowledge and understanding of the issues. The main characteristics of action research are that it seeks to be participatory, democratic and to improve practice. In this exploratory study the first cycles of action towards understanding access for service improvement for South Asian patients was for researchers and those providing end of life care to diverse populations to come together to explore the issues, to include the patient voice through interviews with patients about their experiences and further reflection on the issues in relation to practice (Fig. 1).Fig. 1


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

Wilkinson E, Randhawa G, Brown E, Da Silva Gane M, Stoves J, Warwick G, Akhtar T, Magee R, Sharman S, Farrington K - BMC Palliat Care (2016)

Action research and recruitment
© Copyright Policy - OpenAccess
Related In: Results  -  Collection

License 1 - License 2
Show All Figures
getmorefigures.php?uid=PMC4940835&req=5

Fig1: Action research and recruitment
Mentions: Action research is a collaborative research methodology which enables researchers and practitioners to work together to explore research questions in relation to theory and practice [14, 15]. It operates in a series of research cycles of action and reflection, drawing on the process of conducting the research as well as research outcomes to generate knowledge and understanding of the issues. The main characteristics of action research are that it seeks to be participatory, democratic and to improve practice. In this exploratory study the first cycles of action towards understanding access for service improvement for South Asian patients was for researchers and those providing end of life care to diverse populations to come together to explore the issues, to include the patient voice through interviews with patients about their experiences and further reflection on the issues in relation to practice (Fig. 1).Fig. 1

Bottom Line: 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.

View Article: PubMed Central - PubMed

Affiliation: Institute for Health Research, University of Bedfordshire, Luton, UK.

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.

No MeSH data available.