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

      Wilkinson, Emma; Randhawa, Gurch; Brown, Edwina; Gane, Maria Da Silva; Stoves, John; Warwick, Graham; Akhtar, Tahira; Magee, Regina; Sharman, Sue; Farrington, Ken (BioMed Central Ltd., 2016-07-11)
      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.
    • Quality improvements in diabetes care, how holistic have they been? a case-study from the United Kingdom

      Wilkinson, Emma; Randhawa, Gurch; Singh, Maninder; University of Bedfordshire (BioMed Central Ltd., 2014-04-01)
      Aims: As quality in diabetes care includes patient centred support for self-management, investigating patients’ experiences upon diagnosis can help improve access to this element of care among diverse populations. This research explored this care in the context of recent national quality improvement initiatives which support self-management. Methods: South Asian and White European patients over 16 years with a recent (< 1 year) diagnosis of diabetes were recruited from 18 General Practitioner (GP) practices in three UK locations - Luton, West London and Leicester. A semi-structured qualitative interview was conducted with 47 patients. Results: Twenty one out of 47 (45%) reported unmet support and information needs at diagnosis. Although there was a small proportion of participants (8 out of 47, 17% of all respondents) who felt they did not require any help or support with managing their diabetes because their GP had provided comprehensive and efficient care, there was an equal number who voiced a negative view of the care they had received to date. This concerned information giving, support and communication, suggesting that recently implemented national quality improvement interventions may not have been successful in improving all aspects of diabetes care, particularly those encouraging self-management. The emerging analysis led to consideration of concordance as an important concept through which to understand inequalities and improve access to quality diabetes care. In order to encourage self-management from the start, care providers need to be cognisant that patients are not homogeneous and be responsive to their different information needs and emotional responses to diagnosis. Conclusions: In order to support self-management and deliver patient centred care in diverse populations, care providers will need to be adaptable to individual needs around diagnosis.
    • What's the worry with diabetes? : learning from the experiences of White European and South Asian people with a new diagnosis of diabetes

      Wilkinson, Emma; Randhawa, Gurch; Singh, Maninder; University of Bedfordshire (Elsevier Ltd, 2014-09-01)
      AIMS: An exploration of diabetes diagnosis from the patient perspective is important for understanding inequalities in access and developing quality care through the diabetes care pathway. METHODS: South Asian and White European patients over 16 years with a recent (<1 year) diagnosis of diabetes were recruited from 18 GP practices in three UK locations--Luton, West London and Leicester. A semi-structured qualitative interview was conducted with 47 patients, 28 South Asian and 19 White European. Interview transcripts were analysed thematically and comparisons made between the White and South Asian groups. RESULTS: People expressed a range of emotions at diagnosis. Although many participants were familiar with diabetes through family and friends and were undergoing monitoring for comorbidities, they were surprised and upset to be diagnosed. In contrast, a small number reported how they did not worry about their diabetes diagnosis and others highlighted the different public perceptions, which exist about the seriousness of diabetes in relation to a diagnosis of cancer. CONCLUSIONS: Attitudes to diagnosis of diabetes varied on an individual basis and not directly by ethnicity. Practitioners need to be adaptable to work with individuals in order to facilitate access and support diverse populations.