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

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.Peer reviewedFinal Published versio

How do patients from South Asian backgrounds experience life on haemodialysis in the UK? : A multicentre qualitative study

© Author(s) (or their employer(s)) 2018. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.OBJECTIVES: End-stage kidney disease disproportionately affects people of South Asian origin. This study aimed to uncover the lived experiences of this group of patients on centre-based haemodialysis (HD), the most prevalent dialysis modality. DESIGN: The study utilised a qualitative focus group methodology. Seven focus groups were conducted across four NHS Trusts in the UK including three in Gujarati and two each in Punjabi and Urdu. This provided an inclusive opportunity for South Asian patients to contribute in their language of origin. A total of 24 patients participated. Focus groups were facilitated by bilingual project workers and data were forward translated and analysed using thematic analysis. RESULTS: Four themes were identified. This included (1) 'treatment imposition', which comprised of the restrictive nature of HD, the effects of treatment and the feeling of being trapped in an endless process. (2) The 'patient-clinician relationship' centred around the impact of a perceived lack of staff time, and inadequacies in the quality of interactions. (3) 'Coping strategies' highlighted the role of cognitive reappraisal, living in the moment and family support networks in facilitating adjustment. (4) 'Pursuit of transplantation' included equating this form of treatment with restoring normality, alongside cultural factors limiting hopefulness for receiving an organ. CONCLUSIONS: In general, the experiences of South Asian patients receiving HD were not unique to this ethnic group. We did find distinct issues in relation to interactions with healthcare professionals, views on access to transplantation and the importance of family support networks. The study provides useful insights which may help enhance culturally tailored renal care.Peer reviewe

Time, timing, talking and training : findings from an exploratory action research study to improve quality of end of life care for minority ethnic kidney patients

Background. With an ageing and increasingly diverse population at risk from rising levels of obesity, diabetes and cardiovascular disease, including kidney complications, there is a need to provide quality care at all stages in the care pathway including at the end of life and to all patients. Aim. This study purposively explored South Asian patients' experiences of kidney end of life care to understand how services can be delivered in a way that meets diverse patient needs. Methods. Within an action research design 14 focus groups (45 care providers) of kidney care providers discussed the recruitment and analysis of individual interviews with 16 South Asian kidney patients (eight men, eight women). Emergent themes from the focus groups were analysed thematically. The research took place at four UK centres providing kidney care to diverse populations: West London, Luton, Leicester and Bradford. Results. Key themes related to time and the timing of discussions about end of life care and the factors that place limitations on patients and providers in talking about end of life care. Lack of time and confidence of nurses in areas of kidney care, individual attitudes and workforce composition influence whether and how patients have access to end of life care through kidney services. Conclusion. Training, team work and time to discuss overarching issues (including timing and communication about end of life) with colleagues could support service providers to facilitate access and delivery of end of life care to this group of patients.Peer reviewedFinal Published versio

Quality of life with conservative care compared with assisted peritoneal dialysis and haemodialysis

Background. There is little information about quality of life (QoL) for patients with end-stage kidney disease (ESKD) choosing conservative kidney management (CKM). The Frail and Elderly Patients on Dialysis (FEPOD) study demonstrated that frailty was associated with poorer QoL outcomes with little difference between dialysis modalities [assisted peritoneal dialysis (aPD) or haemodialysis (HD)]. We therefore extended the FEPOD study to include CKM patients with estimated glomerular filtration rate ⌉10 mL/min/1.73m2 (i.e. individuals with ESKD otherwise likely to be managed with dialysis). Methods. CKM patients were propensity matched to HD and aPD patients by age, gender, ethnicity, diabetes status and index of deprivation. QoL outcomes measured were Short Form-12 (SF12), Hospital Anxiety and Depression Scale depression score, symptom score, Illness Intrusiveness Rating Scale (IIRS) and Renal Treatment Satisfaction Questionnaire. Frailty was assessed using the Clinical Frailty Scale. Generalized linear modelling was used to assess the impact of treatment modality on QoL outcomes, adjusting for baseline characteristics. Results. In total, 84 (28 CKM, 28 HD and 28 PD) patients were included. Median age for the cohort was 82 (79-88) years. Compared with CKM, aPD was associated with higher SF12 physical component score (PCS) [Exp B (95% confidence interval)=1.20 (1.00-1.45), P<0.05] and lower symptom score [Exp B=0.62 (0.43-0.90), P=0.01]; depression score was lower in HD compared with CKM [Exp B=0.70 (0.52-0.92), P=0.01]. Worsening frailty was associated with higher depression scores [Exp B=2.59 (1.45-4.62), P<0.01], IIRS [Exp B=1.20 (1.12-1.28), P<0.01] and lower SF12 PCS [Exp B=0.87 (0.83-0.93), P<0.01]. Conclusion. Treatment by dialysis, both with aPD and HD, improved some QoL measures. Overall, aPD was equal to or slightly better than the other modalities in this elderly population. However, as in the primary FEPOD study, frailty was associated with worse QoL measures irrespective of CKD modality. These findings highlight the need for an individualized approach to the management of ESKD in older people.Peer reviewedFinal Published versio

Cognitive-behavioural therapy (CBT) for renal fatigue (BReF) : a feasibility randomised-controlled trial of CBT for the management of fatigue in haemodialysis (HD) patients

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/INTRODUCTION: Fatigue is one of the most common and disabling symptoms in end-stage kidney disease, particularly among in-centre haemodialysis patients. This two-arm parallel group feasibility randomised controlled trial will determine whether a fully powered efficacy trial is achievable by examining the feasibility of recruitment, acceptability and potential benefits of a cognitive-behavioural therapy (CBT)-based intervention for fatigue among in-centre haemodialysis patients. METHODS: We aim to recruit 40 adult patients undergoing in-centre haemodialysis at secondary care outpatient dialysis units, who meet clinical levels of fatigue. Patients will be randomised individually (using a 1:1 ratio) to either a 4-6 weeks' CBT-based intervention (intervention arm) or to a waiting-list control (control arm). The primary feasibility outcomes include descriptive data on numbers within each recruiting centre meeting eligibility criteria, rates of recruitment, numbers retained postrandomisation and treatment adherence. To assess the potential benefits of the cognitive-behavioural therapy for renal fatigue intervention, secondary self-report outcomes include measures of fatigue severity (Chalder Fatigue Questionnaire), fatigue-related functional impairment (Work and Social Adjustment Scale), sleep quality (Pittsburgh Sleep Quality Index), depression (Patient Health Questionnaire-9) and anxiety (Generalised Anxiety Disorder-7). Changes in fatigue perceptions (Brief Illness Perception Questionnaire), cognitive and behavioural responses to fatigue (Cognitive and Behavioural Responses to Symptoms Questionnaire), sleep hygiene behaviours (Sleep Hygiene Index) and physical activity (International Physical Activity Questionnaire-short form) will also be explored. These self-report measures will be collected at baseline and 3 months postrandomisation. Nested qualitative interviews will be conducted postintervention to explore the acceptability of the intervention and identify any areas in need of improvement. The statistician and assessor will be blinded to treatment allocation. ETHICS AND DISSEMINATION: A National Health Service (NHS) Research Ethics Committee approved the study. Any amendments to the protocol will be submitted to the NHS Committee and study sponsor. TRIAL REGISTRATION NUMBER: ISRCTN91238019;Pre-results.Peer reviewe

‘I feel weak, useless and dependent on others’ : South Asian patient experiences of haemodialysis

Shivani Sharma, Roisin Mooney, Andrew Davenport, Clara Day, Neil Duncan, David Wellsted, Maria Da Silva Gane, Kirit Modi, Ken Farrington, ‘‘I feel weak, useless and dependent on others’: South Asian patient experiences of haemodialysis’, poster presented at the Annual Conference British Renal Society, Leeds, UK, 30 June – 2 July, 2015.OBJECTIVE: Much of what is known about patient experiences of haemodialysis (HD) has been gleaned from research with White English speaking groups. People from South Asian backgrounds- originating from India, Pakistan and Bangladesh- have a three to five fold greater risk of needing treatment for renal failure. Owing to language and cultural barriers, less is known about how patients from specific ethnic minorities experience HD, although such knowledge would help shape efforts to provide suitable support. In this study, we invited those who communicate predominately or exclusively in Gujarati, Punjabi or Urdu to participate in focus groups and with the aim of exploring thoughts and feelings related to HD and its impact on day-to-day life. METHOD: Seven focus groups were held and across four NHS Trusts with high representation of patients from South Asian backgrounds. They were facilitated by a team of bilingual researchers with experience of working in healthcare contexts. Twenty-eight patients participated (15 males and 13 females; mean age 57.4 years). Focus groups were transcribed verbatim and translated into English, paying attention to retaining meaning as opposed to literal interpretation. Thematic Analysis was used to elucidate emerging themes, and using NVivo 10- a software programme designed to aid robust analysis of qualitative data. RESULTS: Patients reported numerous aspects of the ‘imposition of treatment’ that altered their sense of self and left them feeling as though they were ‘living in limbo’. Various ‘support mechanisms’ were seen as crucial in helping maintain some form of normality and these were both internally and externally derived. Hope for optimising outcomes was constrained by awareness of cultural barriers to ‘access to transplantation’ with patients’ conscious that their current situation added to ‘family stress’. Furthermore, perceptions of the ‘patient-clinician relationship’ often compounded the overall experience of HD- leaving the majority feeling trapped by their situation. CONCLUSION: Our findings highlight communalities in patient experiences of HD across different ethnic and cultural groups- delineating the aspects of treatment that patients struggle to contend with. Unique to our sample, we also expose concerns about access to kidney transplantation, with cultural factors limiting hope for improving quality of life. Targeted organ donation campaigns have a role to play here in furthering patient optimism for the future. It is apparent that patients require support in managing their altered sense of self and this can be facilitated in many ways including strengthening personal resources for coping alongside peer support.Peer reviewe

You Cannot Choose Your Family: Sociological Ambivalence in the Hemodialysis Unit.

Living with end-stage renal disease is challenging and requires a great deal of self-management, but little is known about the experiences of patients and staff around the subject. We held six focus groups in three hemodialysis units, each unit hosting 1 staff and 1 patient focus group. A total of 15 staff members and 15 patients participated. We employed thematic analysis using a priori and emerging codes. Five key themes emerged: challenges, enablers, complex balancing acts, good patient/bad patient, and the hemodialysis unit as a family. We explored the family metaphor further through the work of Bourdieu, but concluded that relationships in the hemodialysis unit most closely fit the concept of sociological ambivalence. We present an explanatory framework around inherent tensions characterizing relationships within the hemodialysis unit and highlight implications for facilitating self-management and developing collaborative approaches to care

Sertraline Versus Placebo in Patients with Major Depressive Disorder Undergoing Hemodialysis : A Randomized, Controlled Feasibility Trial

This document is the Accepted Manuscript version of the following article: Karin Friedli, et al, ‘Sertraline Versus Placebo in Patients with Major Depressive Disorder Undergoing Hemodialysis: A Randomized, Controlled Feasibility Trial’, Clinical Journal of the American Society of Nephrology, Vol. 12 (2): 280-286, February 2017. The final, published version is available online at DOI: https://doi.org/10.2215/​CJN.02120216.BACKGROUND AND OBJECTIVES: Depression is common in patients on hemodialysis, but data on the benefits and risks of antidepressants in this setting are limited. We conducted a multicenter, randomized, double-blind, placebo-controlled trial of sertraline over 6 months in patients on hemodialysis with depression to determine study feasibility, safety, and effectiveness. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: Patients on hemodialysis at five United Kingdom renal centers completed the Beck Depression Inventory II. Those scoring ≥16 and not already on treatment for depression were invited to undergo diagnostic interview to confirm major depressive disorder. Eligible patients with major depressive disorder were randomized to receive the study medication-either sertraline or placebo. Outcomes included recruitment and dropout rates, change in the Montgomery-Asberg Depression Rating Scale and Beck Depression Inventory II, and qualitative information to guide design of a large-scale trial. RESULTS: In total, 709 patients were screened and enrolled between April of 2013 and October of 2014; 231 (32.6%) had Beck Depression Inventory II scores ≥16, and 68 (29%) of these were already receiving treatment for depression. Sixty-three underwent diagnostic interview, 37 were diagnosed with major depressive disorder, and 30 were randomized; 21 completed the trial: eight of 15 on sertraline and 13 of 15 on placebo (P=0.05). Dropouts due to adverse and serious adverse events were greater in the sertraline group. All occurred in the first 3 months. Over 6 months, depression scores improved in both groups. Beck Depression Inventory II score fell from 29.1±8.4 to 17.3±12.4 (P<0.001), and Montgomery-Asberg Depression Rating Scale score fell from 24.5±4.1 to 10.3±5.8 (P<0.001). There were no differences between sertraline and placebo groups. CONCLUSIONS: Although small, this is the largest randomized trial to date of antidepressant medication in patients on hemodialysis. Our results highlight recruitment issues. No benefit was observed, but trial size and the substantial dropout render consideration of benefit inconclusive. A definitive trial could use shorter follow-up and include depressed patients already taking antidepressants.Peer reviewedFinal Accepted Versio

Survival of elderly patients with stage 5 CKD: comparison of conservative management and renal replacement therapy

Background. Elderly patients with end-stage renal disease and severe extra-renal comorbidity have a poor prognosis on renal replacement therapy (RRT) and may opt to be managed conservatively (CM). Information on the survival of patients on this mode of therapy is limited

Outcomes and care priorities for older people living with frailty and advanced chronic kidney disease : a multiprofessional scoping review protocol

Reported outcomes for older people with advanced chronic kidney disease (CKD) often focus on survival and mortality and little attention is paid to symptom burden and health-related quality of life. Recognising frailty and providing interventions that may improve outcomes have been studied in the general population with a growing research interest within CKD. A scoping review will be undertaken following a recommended process to understand relevant research and priorities for older people living with frailty and advanced CKD. Databases will be searched and following a systematic process by a core team, a final list of included studies will be analysed. Focus groups will then be conducted with older people with advanced CKD to incorporate stakeholder views. Our scoping review will use robust methodology to identify relevant literature focused on outcomes and care priorities for older people with advanced CKD. Ethical approval will be sought to conduct the focus groups. The result of this review will be disseminated through patient networks and national conferences. The interdisciplinary team collaborating plan to continue work in this area to improve the care and management of older people with advanced CKD. [Abstract copyright: © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.