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When kidney transplantation is not an option: Haemodialysis patients' and partners' experiences-A qualitative study.

ABSTRACT: Aim:To investigate the experiences and perspectives of everyday life among patients on lifelong haemodialysis and their partners. Design:A qualitative exploratory study with a phenomenological-hermeneutic approach. Method:Data were collected through individual interviews. In total, five patients in haemodialysis and their partners were included in the study. Data were analysed with inspiration from Ricoeur's theory around narratives and interpretation on three levels: naïve reading, structural analysis and critical interpretation and discussion. Data was collected between February 2018-June 2019. Results:Limitations caused by the disease and time-consuming treatment influenced daily life. In particular, the partners needed to have time on their own. Knowledge about the disease and participation in treatment were significant to both patients and partners. There were considerations about illness progression. Relationships to their social networks and healthcare professionals were a significant and important part of daily life for both parties.

SUBMITTER: Frandsen CE

PROVIDER: S-EPMC7308691 | biostudies-literature | 2020 Jul

REPOSITORIES: biostudies-literature

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When kidney transplantation is not an option: Haemodialysis patients' and partners' experiences-A qualitative study.

Frandsen Christina Egmose CE Pedersen Erik Bo EB Agerskov Hanne H

Nursing open 20200402 4

<h4>Aim</h4>To investigate the experiences and perspectives of everyday life among patients on lifelong haemodialysis and their partners.<h4>Design</h4>A qualitative exploratory study with a phenomenological-hermeneutic approach.<h4>Method</h4>Data were collected through individual interviews. In total, five patients in haemodialysis and their partners were included in the study. Data were analysed with inspiration from Ricoeur's theory around narratives and interpretation on three levels: naïve ...[more]

PMID: 32587730

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Project description:BackgroundAustralian healthcare quality and safety accreditation standards recommend health services partner with health care users, to ensure the highest quality of care. Aboriginal Australians with chronic and end stage kidney disease have high health care access needs.AimTo describe the experiences of health care users of a large government kidney healthcare service provider.MethodsWithin a government renal health service in the Top-End of the Northern Territory, we undertook a qualitative study involving in-depth interviews with 26 adult clients from urban, regional and remote settings who were living with kidney health conditions.ResultsClient characteristics included a mean age of 55 years, 55% female and 81% identifying as Aboriginal. The kidney related conditions of client participants included CKD (11, 42.3%), haemodialysis (12, 46.2%), peritoneal dialysis (1, 3.9%), and transplant (2, 7.7%). Key themes emerging from patient interviews related to perceived gaps for clients and carers including: 1) knowledge gaps about the health condition, 2) the impact of relocation in order to access centrally-based renal care, 3) healthcare staff professionalism and qualities and 4) service environments. Overall, the experiences centred on a greater need for client-centred, respectful and culturally based healthcare support. Clients recommended the need for patient-led collective care, including sustaining an Indigenous Patient Reference Group to support ongoing healthcare service decision processes. Participants included in almost equal proportion, clients with CKD (without dialysis) and clients utilising renal replacement therapy, which adds significant weight to the client-identified recommendations for highest quality of kidney care across a wide spectrum of kidney function.ConclusionFour major themes identified by clients related to their experience with renal care provided by this major regional health care provider: knowledge gaps of their own condition, the lived impacts of relocating to access health care, service environments, and Health Care Provider Quality. An Indigenous Patient Reference Group was one mechanism recommended to support the co-design of preferred care models.

Project description:BackgroundFrailty is highly prevalent in people receiving haemodialysis (HD) and is associated with poor outcomes. Understanding the lived experiences of this group is essential to inform holistic care delivery.MethodsSemi-structured interviews with N = 25 prevalent adults receiving HD from 3 HD units in the UK. Eligibility criteria included a Clinical Frailty Scale (CFS) score of 4-7 and a history of at least one fall in the last 6 months. Sampling began guided by maximum variation sampling to ensure diversity in frailty status; subsequently theoretical sampling enabled exploration of preliminary themes. Analysis was informed by constructivist grounded theory; later we drew upon the socioecological model.ResultsParticipants had a mean age of 69 ± 10 years, 13 were female, and 13 were White British. 14 participants were vulnerable or mildly frail (CFS 4-5), and 11 moderately or severely frail (CFS 6-7). Participants characterised frailty as weight loss, weakness, exhaustion, pain and sleep disturbance arising from multiple long-term conditions. Participants' accounts revealed: the consequences of frailty (variable function and psychological ill-health at the individual level; increasing reliance upon family at the interpersonal level; burdensome health and social care interactions at the organisational level; reduced participation at the community level; challenges with financial support at the societal level); coping strategies (avoidance, vigilance, and resignation); and unmet needs (overprotection from family and healthcare professionals, transactional health and social care exchanges).ConclusionsThe implementation of a holistic needs assessment, person-centred health and social care systems, greater family support and enhancing opportunities for community participation may all improve outcomes and experience. An approach which encompasses all these strategies, together with wider public health interventions, may have a greater sustained impact.Trial registrationISRCTN12840463 .

Project description:BACKGROUND:Kidney transplantation is considered best practice treatment for end stage kidney disease (ESKD), however Indigenous patients are substantially less likely to receive either a deceased or live donor kidney transplant than non-Indigenous patients. We describe Indigenous peoples' experiences and perspectives including traditional values around kidney transplantation to inform international transplant programs. METHODS:We conducted a systematic review of qualitative studies involving Indigenous adults who have experience with or perceptions of kidney transplantation. We searched MEDLINE, Embase, PsychINFO, and CINAHL, in conjunction with analysis of Google Scholar and reference lists of related studies till July 2019. We utilised thematic synthesis to analyse data. Completeness of reporting in studies was evaluated using the Consolidated Criteria for Reporting Qualitative Studies (COREQ) framework. RESULTS:Eight studies involving 225 Indigenous participants were included. Five themes were identified: strong desire for transplantation (seeking normality and freedom from dialysis, wanting to reduce burden of disease within community); lack of partnership in shared decision-making (receiving inadequate information, ineffective communication); barriers to live kidney donation (difficulty asking, apprehension about impact on donor, avoiding additional financial burden and fear of complications); cultural considerations (influence of traditional values and beliefs, reconciling traditional values with pragmatic need); and experiencing lack of cultural competence in clinical care (struggling with prejudice and ignorance, mistrust of clinicians and health system). CONCLUSION:Indigenous participants had a strong desire for a kidney transplant and recognised the need for more readily available kidney transplants for others in their communities with ESKD. However, they faced prejudice and a lack of cultural competence by health workers as well as wider barriers to transplantation in systems that did not support effective and culturally appropriate delivery of information and care. Traditional cultural values also influenced decisions regarding kidney transplantation but such values were moderated when considering transplantation. Transplantation programs need to identify and mitigate barriers, such as the financial burden, promote cultural safety and incorporate traditional values into the promotion of transplantation in order to address inequitable transplantation rates. REGISTRATION:Not applicable.

Dataset Information

When kidney transplantation is not an option: Haemodialysis patients' and partners' experiences-A qualitative study.

Publications

When kidney transplantation is not an option: Haemodialysis patients' and partners' experiences-A qualitative study.

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