Exploring the unmet needs and experiences of informal caregivers of patients with end-stage kidney disease (ESKD) receiving haemodialysis - a qualitative study.

BACKGROUND: Patients with end stage kidney disease (ESKD) receiving haemodialysis experience multiple symptoms, which can present physical and emotional challenges for both patients and their informal caregivers. Caregivers can experience anxiety, depression, and social isolation negatively impacting their overall wellbeing and resulting in caregiver burden. The needs of this group of caregivers have been largely neglected, with little emphasis placed on supportive interventions that might assist and support them in their caring role. AIM: The aim of this study Is to explore the unmet needs and experiences of caregivers of patients with ESKD receiving haemodialysis, and to determine the components of a supportive intervention. DESIGN: A qualitative study using semi-structured interviews (n = 24) with informal caregivers. An interpretive qualitative framework was employed to generate a rich understanding of the unmet needs and experiences of caregivers. Data was analysed using thematic analysis. Interviews were transcribed verbatim and data management was assisted through NVIVO version 11. SETTING/PARTICIPANTS: Twenty-four informal caregivers were purposively recruited from two haemodialysis settings within Northern Ireland. RESULTS: Three themes were identified: (1) The negative impact of distress, anxiety, and isolation on caregivers due to their caregiving responsibilities (2) Inadequate information and knowledge about the complexities of renal care (3) The benefits of spiritual beliefs, stress management and peer support in relieving the caregiving burden. CONCLUSIONS: Caregivers of patients with ESKD receiving haemodialysis are at increased risk of physical and psychological distress and burden arising from their caregiving role. The unpredictable nature of ESKD and haemodialysis treatment negatively impacts the caregiver experience and adds to the challenges of the role. The information needs of caregivers are not always adequately met and they subsequently lack appropriate knowledge, skills, and guidance to assist them in their caregiving role. Supportive interventions are essential for caregivers to enhance their capability to deliver effective care and improve their quality of life.

Dialysis Distress.

This communication conceptualizes and characterizes the phenomenon of dialysis distress, commonly encountered in persons living with end stage kidney disease on dialysis. Dialysis distress can be defined as an emotional state, marked by extreme apprehension, anxiety, despair and/or dejection, due to a perceived inability to cope with the challenges and demands of living with dialysis. This concept can be extrapolated to persons who undergo renal replacement therapy such as renal transplant. Dialysis distress should be identified in a timely manner, and managed using appropriate support, counselling and education, delivered in an empathic manner.

Educational level and gender are associated with emotional well-being in a cohort of Dutch dialysis patients.

BACKGROUND: Patients undergoing dialysis have an impaired health-related quality of life (HRQOL). There are conflicting data from small series on whether patient-related factors such as educational level have an impact on experienced HRQOL. The aim of this study was to investigate the association between educational level and HRQOL in dialysis patients. METHODS: In a single-center retrospective cross-sectional study HRQOL was measured using the Kidney Disease Quality of Life Short Form-36 (KDQOL-SF36) in prevalent chronic dialysis patients. Educational level was categorized into low, intermediate and high subgroups. Univariate and multivariate regression analyses were performed to assess the effects of age, gender, ethnicity, and dialysis vintage on the association between HRQOL and educational level. RESULTS: One hundred twenty-nine chronic dialysis patients were included. Patients with an intermediate educational level had significantly higher odds of a higher emotional well-being than patients with a low educational level 4.37 (1.-89-10.13). A similar trend was found for a high educational level (OR 4.13 (1.04-16.42), p = 0.044) The odds for women compared to men were 2.83 (1.32-6.06) for better general health and 2.59 (1.15-5,84) for emotional well-being. There was no interaction between gender and educational level for both subdomains. Each year of increasing age significantly decreased physical functioning (OR 0.94 (0.91-0.97)). CONCLUSIONS: Educational level and sex were associated with emotional well-being, since patients with intermediate and high educational level and females had better emotional well-being in comparison to patients with low educational level and males. Physical functioning decreased with increasing age.

Dependency and frailty in the older haemodialysis patient.

BACKGROUND: Frailty among older adults undergoing hemodialysis is increasingly prevalent, significantly impacting cognitive function, mobility, and social engagement. This study focuses on the clinical profiles of very older adults in hemodialysis, particularly examining the interplay of dependency and frailty, and their influence on dialysis regimens. METHODS: In this observational, descriptive study, 107 patients aged over 75 from four outpatient centers and one hospital unit were examined over a year. Patient data encompassed sociodemographic factors, dialysis specifics, analytical outcomes, lifestyle elements, and self-reported post-treatment fatigue. Malnutrition-inflammation scale was used to measure the Nutritional status; MIS scale for malnutrition-inflammation, Barthel index for dependency, Charlson comorbidity index; FRIED scale for frailty and the SF12 quality of life measure. RESULTS: The study unveiled that a substantial number of older adults on hemodialysis faced malnutrition (55%), dependency (21%), frailty (46%), and diminished quality of life (57%). Patients with dependency were distinctively marked by higher comorbidity, severe malnutrition, enhanced frailty, nursing home residency, dependency on ambulance transportation, and significantly limited mobility, with 77% unable to walk. Notably, 56% of participants experienced considerable post-dialysis fatigue, correlating with higher comorbidity, increased dependency, and poorer quality of life. Despite varying clinical conditions, dialysis patterns were consistent across the patient cohort. CONCLUSIONS: The older adult cohort, averaging over four years on hemodialysis, exhibited high rates of comorbidity, frailty, and dependency, necessitating substantial support in transport and living arrangements. A third of these patients lacked residual urine output, yet their dialysis regimen mirrored those with preserved output. The study underscores the imperative for tailored therapeutic strategies to mitigate dependency, preserve residual renal function, and alleviate post-dialysis fatigue, ultimately enhancing the physical quality of life for these patients.

Protocol for a multicentre prospective exploratory mixed-methods study investigating the modifiable psychosocial variables influencing access to and outcomes after kidney transplantation in children and young people in the UK.

INTRODUCTION: Kidney transplantation is the preferred therapy for children with stage 5 chronic kidney disease (CKD-5). However, there is a wide variation in access to kidney transplantation across the UK for children. This study aims to explore the psychosocial factors that influence access to and outcomes after kidney transplantation in children in the UK using a mixed-methods prospective longitudinal design. METHODS: Qualitative data will be collected through semistructured interviews with children affected by CKD-5, their carers and paediatric renal multidisciplinary team. Recruitment for interviews will continue till data saturation. These interviews will inform the choice of existing validated questionnaires, which will be distributed to a larger national cohort of children with pretransplant CKD-5 (n=180) and their carers. Follow-up questionnaires will be sent at protocolised time points regardless of whether they receive a kidney transplant or not. Coexisting health data from hospital, UK renal registry and National Health Service Blood and Transplant registry records will be mapped to each questionnaire time point. An integrative analysis of the mixed qualitative and quantitative data will define psychosocial aspects of care for potential intervention to improve transplant access. ANALYSIS: Qualitative data will be analysed using thematic analysis. Quantitative data will be analysed using appropriate statistical methods to understand how these factors influence access to transplantation, as well as the distribution of psychosocial factors pretransplantation and post-transplantation. ETHICS AND DISSEMINATION: This study protocol has been reviewed by the National Institute for Health Research Academy and approved by the Wales Research Ethics Committee 4 (IRAS number 270493/ref: 20/WA/0285) and the Scotland A Research Ethics Committee (ref: 21/SS/0038). Results from this study will be disseminated across media platforms accessed by affected families, presented at conferences and published in peer-reviewed journals.

Kidney transplant candidates' perspectives on the implementation of a Canadian Willingness to Cross program: A strategy to increase access to kidney transplantation for highly sensitized patients.

BACKGROUND: Kidney transplantation is the optimal treatment for end-stage renal disease. However, highly sensitized patients (HSPs) have reduced access to transplantation, leading to increased morbidity and mortality on the waiting list. The Canadian Willingness to Cross (WTC) program proposes allowing transplantation across preformed donor specific antibodies (DSA) determined to be at a low risk of rejection under the adaptive design framework. This study collected patients' perspectives on the development of this program. METHODS: Forty-one individual interviews were conducted with kidney transplant candidates from three Canadian transplant centers in 2022. The interviews were digitally recorded and transcribed for subsequent analyses. RESULTS: Despite limited familiarity with the adaptive design, participants demonstrated trust in the researchers. They perceived the WTC program as a pathway for HSPs to access transplantation while mitigating transplant-related risks. HSPs saw the WTC program as a source of hope and an opportunity to leave dialysis, despite acknowledging inherent uncertainties. Some non-HSPs expressed concerns about fairness, anticipating increased waiting times and potential compromise in kidney graft longevity due to higher rejection risks. Participants recommended essential strategies for implementing the WTC program, including organizing informational meetings and highlighting the necessity for psychosocial support. CONCLUSION: The WTC program emerges as a promising strategy to enhance HSPs' access to kidney transplantation. While HSPs perceived this program as a source of hope, non-HSPs voiced concerns about distributive justice issues. These results will help develop a WTC program that is ethically sound for transplant candidates.

Knowledge, attitudes, and practices toward cardiovascular complications among end-stage renal disease patients undergoing maintenance hemodialysis.

BACKGROUND: This study aimed to investigate the knowledge, attitudes, and practices (KAP) toward cardiovascular complications among end-stage renal disease patients undergoing maintenance hemodialysis. METHODS: This web-based cross-sectional study was conducted at Guangdong Provincial People's Hospital between December 2022, and May 2023. RESULTS: A total of 545 valid questionnaires were collected, with an average age of 57.72 ± 13.47 years. The mean knowledge, attitudes and practices scores were 8.17 ± 2.9 (possible range: 0-24), 37.63 ± 3.80 (possible range: 10-50), 33.07 ± 6.10 (possible range: 10-50) respectively. Multivariate logistic regression analysis showed that patients from non-urban area had lower knowledge compared to those from urban area (odds ratio (OR) = 0.411, 95% CI: 0.262-0.644, P < 0.001). Furthermore, higher levels of education were associated with better knowledge, as indicated by OR for college and above (OR = 4.858, 95% CI: 2.483-9.504), high school/vocational school (OR = 3.457, 95% CI: 1.930-6.192), junior high school (OR = 3.300, 95% CI: 1.945-5.598), with primary school and below as reference group (all P < 0.001). Besides, better knowledge (OR = 1.220, 95% CI: 1.132-1.316, P < 0.001) and higher educational levels were independently associated with positive attitudes. Specifically, individuals with a college degree and above (OR = 2.986, 95% CI: 1.411-6.321, P = 0.004) and those with high school/vocational school education (OR = 2.418, 95% CI: 1.314-4.451, P = 0.005) have more positive attitude, with primary school and below as reference group. Next, better attitude (OR = 1.174, 95% CI: 1.107-1.246, P < 0.001) and higher education were independently associated with proactive practices. Those with college and above (OR = 2.870, 95% CI: 1.359-6.059, P = 0.006), and those with high school/vocational school education (OR = 1.886, 95% CI: 1.032-3.447, P = 0.039) had more proactive practices, with primary school and below as reference group. CONCLUSIONS: End-stage renal disease patients undergoing maintenance hemodialysis demonstrated insufficient knowledge, positive attitudes, and moderate practices regarding cardiovascular complications. Targeted interventions should prioritize improving knowledge and attitudes, particularly among patients with lower educational levels and income, to enhance the management of cardiovascular complications in end-stage renal disease.

Willingness of Patients With End-Stage Renal Disease to Accept a Kidney Transplant and Related Factors.

BACKGROUND: The prevalence of end-stage renal disease (ESRD) in Taiwan is among the highest in the world. Although kidney transplant is the most effective treatment for ESRD, the willingness of patients with ESRD to undergo kidney transplantation is low in Taiwan. The factors associated with willingness to accept kidney transplantation remain unclear, and studies on kidney transplant willingness and associated factors among Taiwanese patients with ESRD are scarce. PURPOSE: The aim of this study was to assess willingness to undergo a kidney transplant and related factors among patients with ESRD in Taiwan. METHODS: A cross-sectional design was employed. Two hundred fourteen participants from a single medical center in Taiwan were recruited, and 209 valid questionnaires were collected (valid response rate: 97.7%). The study instruments included a kidney transplant knowledge scale, a kidney transplant attitude scale, and a kidney transplant willingness scale. Data were analyzed using Pearson's product-moment correlations, t tests, one-way analyses of variance, and multiple regressions. RESULTS: The mean kidney transplant willingness in the sample was 13.23 (out of 20). Being male, younger, married, or employed; having a college education or above; and having a shorter dialysis duration were all associated with higher kidney transplant willingness. Sociodemographics, dialysis duration, knowledge, and attitudes explained 45.4% of the variance in kidney transplant willingness, with two of these, kidney transplant attitudes (ß = .61, p < .001) and dialysis duration (ß = -.11, p = .041), identified as significant. CONCLUSIONS/IMPLICATIONS FOR PRACTICE: The findings support the important role of cultivating positive attitudes in patients with ESRD to increasing willingness to undergo kidney transplantation interventions.

The relationship between fatigue, pruritus, and thirst distress with quality of life among patients receiving hemodialysis: a mediator model to test concept of treatment adherence.

Hemodialysis is a conservative treatment for end-stage renal disease. It has various complications which negatively affect quality of life (QOL). This study aimed to examine the relationship between fatigue, pruritus, and thirst distress (TD) with QOL of patients receiving hemodialysis, while also considering the mediating role of treatment adherence (TA). This cross-sectional study was carried out in 2023 on 411 patients receiving hemodialysis. Participants were consecutively recruited from several dialysis centers in Iran. Data were collected using a demographic information form, the Fatigue Assessment Scale, the Thirst Distress Scale, the Pruritus Severity Scale, the 12-Item Short Form Health Survey, and the modified version of the Greek Simplified Medication Adherence Questionnaire for Hemodialysis Patients. Covariance-based structural equation modeling was used for data analysis. The structural model and hypothesis testing results showed that all hypotheses were supported in this study. QOL had a significant inverse association with fatigue, pruritus, and TD and a significant positive association with TA. TA partially mediated the association of QOL with fatigue, pruritus, and TD, denoting that it helped counteract the negative association of these complications on QOL. This model explained 68.5% of the total variance of QOL. Fatigue, pruritus, and TD have a negative association with QOL among patients receiving hemodialysis, while TA reduces these negative associations. Therefore, TA is greatly important to manage the associations of these complications and improve patient outcomes. Healthcare providers need to assign high priority to TA improvement among these patients to reduce their fatigue, pruritus, and TD and improve their QOL. Further studies are necessary to determine the most effective strategies for improving TA and reducing the burden of complications in this patient population.

The feasibility of integrating a home telehealth model for older persons living with hemodialysis.

BACKGROUND: In Thailand, there is a rapidly increasing population of older persons living with hemodialysis (OPLWH) for whom quality of life and clinical outcomes are their main focus. This study aims to assess the feasibility of an integrated home telehealth model on quality of life and laboratory parameters of OPLWH. METHODS: In this study, the second phase of a mixed methods exploratory sequential design was conducted using a repeated measures experimental design. Participants met the inclusion criteria, which included being an OPLWH at a single hemodialysis center of one hospital in Chiang Mai province, Thailand, during the experimental period between 1 April and 30 September 2018, and willing to participate in the study. The 54 participants were purposively selected and randomly assigned to receive either an intervention (n = 24) consisting of health education and health monitoring using a telehealth device (an iPad) and a web application, or usual care (n = 30). The instruments included a demographic data form, which was analyzed using the chi-square test. The health-related quality of life questionnaire (the 9-item Thai Health Status Assessment questionnaire) and blood chemistry (BUN, Cr, Hb, Hct, Alb, K, Kt/V, and nPCR) were compared and measured at baseline, and at 3 and 6 months after enrolment using independent t-test and one-way repeated measures ANOVA. RESULTS: The comparison of quality of life between the two groups at the two points of repeated measurement (after 3 months) showed a statistically significant difference in mental health scores at P < 0.05. Six months after the intervention, mean scores for health outcomes and patients' quality of life improved; however, this change did not reach statistical significance. CONCLUSIONS: An integrated home telehealth model implemented by a hemodialysis nurse is a feasible holistic care approach for OPLWH. However, the absence of statistical significance may partly be associated with the clinical characteristics of frailty and risk factors such as increased age, hypertension, diabetes, heart disease, longer dialysis time, and inadequacy of Kt/V. Large-scale multi-centre trials are warranted to fully examine the acceptability of the model. The duration and long-term effects of the telehealth model are also recommended for further investigation. PATIENT OR PUBLIC CONTRIBUTION: The development of a home telehealth model was a collaborative process between patients, caregivers, healthcare professionals from the hemodialysis unit, and the research team.

Symptom profiles in patients receiving maintenance hemodialysis and their association with quality of life: a longitudinal study.

PURPOSE: Many patients receiving maintenance hemodialysis experience one or multiple symptoms. Using a latent profile analysis to identify symptom profiles may provide insights for person-centered symptom management strategies. METHODS: This is a longitudinal study based on data from patients receiving maintenance hemodialysis at three hospitals in Shanghai, China. Of the 448 patients who completed the surveys at baseline (T1), 309 completed the 12-month follow-up survey (T2). Symptoms and quality of life were measured by the Chinese version of Kidney Disease Quality of Life 36 Short Form. The optimal classification of symptoms was identified using latent profile analysis. RESULTS: Five symptom profiles were identified: High (9.2%), Fatigue and Gastrointestinal (7.1%), Fatigue and Skin (10.7%), Skin (23.2%), and Low (49.8%). The high-symptom profile and the-fatigue-and-skin-symptom profile were associated with a lower level of physical functioning, a higher burden of kidney disease, and more negative effects of kidney disease than the low symptom profile at T1 and T2. Multivariate regression analysis showed that the high-symptom profile predicted a poorer physical functioning at T2, and the-fatigue-and-skin-symptom profile predicted a poorer physical functioning and higher burden of kidney disease at T2. CONCLUSION: Patients receiving maintenance hemodialysis reported unique symptom experiences which could be classified into different profiles. Patients reporting an overall high level of symptoms or a high level of fatigue and skin symptoms were more likely to have a poorer quality of life.

Health-related quality of life for pediatric patients with end-stage kidney disease: A systematic review and meta-analysis of the Pediatric Quality of Life Inventory (PedsQL).

INTRODUCTION: Health-related quality of life (HRQoL) studies demonstrate the impact of end-stage renal disease (ESRD) on the physical and psychosocial development of children. While several instruments are used to measure HRQoL, few have standardized domains specific to pediatric ESRD. This review examines current evidence on self and proxy-reported HRQoL among pediatric patients with ESRD, based on the Pediatric Quality of Life Inventory (PedsQL) questionnaires. METHODS: Following PRISMA guidelines, we conducted a systematic review and meta-analysis on HRQoL using the PedsQL 4.0 Generic Core Scale (GCS) and the PedsQL 3.0 ESRD Module among 5- to 18-year-old patients. We queried PubMed, Embase, Web of Science, CINAHL, and Cochrane databases. Retrospective, case-controlled, and cross-sectional studies using PedsQL were included. FINDINGS: Of 435 identified studies, 14 met inclusion criteria administered in several countries. Meta-analysis demonstrated a significantly higher total HRQoL for healthy patients over those with ESRD (SMD:1.44 [95% CI: 0.78-2.09]) across all dimensional scores. In addition, kidney transplant patients reported a significantly higher HRQoL than those on dialysis (PedsQL GCS, SMD: 0.33 [95% CI: 0.14-0.53]) and (PedsQL ESRD, SMD: 0.65 [95% CI: 0.39-0.90]) concordant with parent-proxy reports. DISCUSSION: Patients with ESRD reported lower HRQoL in physical and psychosocial domains compared with healthy controls, while transplant and peritoneal dialysis patients reported better HRQoL than those on hemodialysis. This analysis demonstrates the need to identify dimensions of impaired functioning and produce congruent clinical interventions. Further research on the impact of individual comorbidities in HRQoL is necessary for developing comprehensive, integrated, and holistic treatment programs.

Factors influencing renal replacement therapy modality choice from the nephrologist's perspective.

BACKGROUND: Peritoneal dialysis (PD) offers quality of life and empowerment for persons with end-stage kidney disease (ESKD). Nevertheless, the prevalence of PD is low in Belgium and Europe in general. Reimbursement, patient mix and late referral have been quoted as underlying reasons. However, to date no one-size-fits-all solution increasing uptake of PD has been successfully implemented. We aimed to understand the nephrologist's perspective, beliefs, and experiences on dialysis modality selection and to clarify underlying process-level and intrinsic motivations steering final decisions. METHODS: Using purposeful sampling, Belgian nephrologists (non-/academic, geographical spread, age, gender) were selected. We conducted semi-structured interviews, and audiotapes were transcribed verbatim. Meaningful units were grouped into (sub-)themes, and a conceptual framework was developed using grounded theory according to Charmaz as guidance. RESULTS: Twenty-nine nephrologists were interviewed. We identified four themes: Trust and belief (in PD as a technique; own expertise, knowledge and team; in behavior of patient, family practitioner), feeling of control (paternalism; insecurity; prejudice), vision of care and approach (shared decision making; troubleshooting attitude; flexibility and creativity; complacency), and organizational issues (predialysis; access; financial; and assisted PD). CONCLUSIONS: Based on these interviews, it is apparent that next to already identified singular issues such as late referral, predialysis education, patient mix and financial incentives, more intrinsic factors also impact uptake of home-based therapies. These factors intertwine and relate both to process-level topics and to attitudes and culture of the nephrologists within the team.

The paradox of haemodialysis: the lived experience of the clocked treatment of chronic illness.

Studies exploring the relationship between time and chronic illness have generally focused on measurable aspects of time, also known as linear time. Linear time follows a predictable, sequential order of past, present and future; measured using a clock and predicated on normative assumptions. Sociological concepts addressing lifecourse disruption following diagnosis of chronic illness have served to enhance the understanding of lived experience. To understand the nuanced relationship between time and chronic illness, however, requires further exploration. Here, we show how the implicit assumptions of linear time meet in tension with the lived experience of chronic illness. We draw on interviews and photovoice work with people with end-stage kidney disease in receipt of in-centre-daytime haemodialysis to show how the clocked treatment of chronic illness disrupts experiences of time. Drawing on concepts of 'crip' and 'chronic' time we argue that clocked treatment and the lived experience of chronic illness converge at a paradox whereby clocked treatment allows for the continuation of linear time yet limits freedom. We use the concept of 'crip time' to challenge the normative assumptions implicit within linear concepts of time and argue that the understanding of chronic illness and its treatment would benefit from a 'cripped' starting point.

The Current State of Kidney Supportive Care in Nephrology Nursing Practice: A Literature Review.

Kidney disease is associated with a high physical and psychological symptom burden. For patients whose condition is more compromised, receiving dialysis as a life-sustaining therapy may not improve longevity or quality of life. Palliative care for patients with kidney disease (also termed kidney supportive care [KSC]) is appropriate for this patient population. Nephrology nurses working in dialysis are well positioned to talk with patients about what patients perceive constitutes a meaningful life or death. A literature review was undertaken to find evidence about if and how nephrology nurses engage in KSC with patients receiving dialysis. Based on the 29 articles included in this review, the overarching finding was nephrology nurses working in dialysis are not routinely engaging in KSC. Reasons for this are varied and warrant further investigation.

Religion and Spiritual Health in Patients With and Without Depression Receiving Hemodialysis: A Cross-Sectional Correlational Study.

BACKGROUND: Hemodialysis is the most common therapy for managing patients with end-stage renal disease. Depression is one of the most common psychological problems faced by dialysis patients, and there is limited research on the influences of religion and spirituality on dialysis patients. PURPOSE: This study was designed to compare religion and spiritual health status between hemodialysis patients with and without depressive symptoms. METHODS: A cross-sectional survey was conducted on 137 hemodialysis patients living in Taiwan. The self-report instruments used included the Religious Beliefs Scale, Spiritual Health Scale-Short Form, and Beck Depression Inventory-II. Data were analyzed using t test, chi-square test, point-biserial correlation of variance, and logistic regression. RESULTS: Most (63.5%) of the participants were classified with depression, of which most were male (70.1%), older (mean = 62.56 years), and unemployed (73.6%) and had less formal education. Fifty-two of the participants with depression had a 1- to 5-year duration of hemodialysis, whereas the nondepressed group had a higher mean score for number of religious activities, positive religious beliefs, and total score for spiritual health. Logistic regression showed an increased odds ratio ( OR ) of depression for participants with a duration of hemodialysis of 1-5 years ( OR = 3.64, 95% CI [1.01, 13.15]). Participants with higher scores for spiritual health had a lower risk of depression ( OR = 0.82, 95% CI [0.75, 0.90]), indicating a positive association between spiritual health and lower depression risk. CONCLUSIONS/IMPLICATIONS FOR PRACTICE: The prevalence rate of depression in hemodialysis patients is higher than that in the general population. Providing screenings for spiritual health and depression as part of routine medical care for hemodialysis patients is recommended to detect spiritual distress and depression early.

Patients' Perspectives on Health-Related Social Needs and Recommendations for Interventions: A Qualitative Study.

RATIONALE & OBJECTIVE: People with low socioeconomic status are disproportionately affected by kidney failure, and their adverse outcomes may stem from unmet health-related social needs. This study explored hemodialysis patient perspectives on health-related social needs and recommendations for intervention. STUDY DESIGN: Qualitative study using semistructured interviews. SETTINGS & PARTICIPANTS: Thirty-two people with low socioeconomic status receiving hemodialysis at 3 hemodialysis facilities in Austin, Texas. ANALYTICAL APPROACH: Interviews were analyzed for themes and subthemes using the constant comparative method. RESULTS: Seven themes and 21 subthemes (in parentheses) were identified: (1) kidney failure was unexpected (never thought it would happen to me; do not understand dialysis); (2) providers fail patients (doctors did not act; doctors do not care); (3) dialysis is detrimental (life is not the same; dialysis is all you do; dialysis causes emotional distress; dialysis makes you feel sick); (4) powerlessness (dependent on others; cannot do anything about my situation); (5) financial resource strain (dialysis makes you poor and keeps you poor; disability checks are not enough; food programs exist but are inconsistent; eat whatever food is available; not enough affordable housing; unstable housing affects health and well-being); (6) motivation to keep going (faith, support system, will to live); and (7) interventions should promote self-efficacy (navigation of community resources, support groups). LIMITATIONS: Limited quantitative data such as on dialysis vintage, and limited geographic representation. CONCLUSIONS: Dialysis exacerbates financial resource strain, and health-related social needs exacerbate dialysis-related stress. The participants made recommendations to address social needs with an emphasis on increasing support and community resources for this population. PLAIN-LANGUAGE SUMMARY: People receiving dialysis often experience health-related social needs, such as food and housing needs, but little is known about how these impact patients' health and well-being or how to best address them. We interviewed people receiving dialysis about how health-related social needs affect them and what they think dialysis facilities can do to help them address those needs. The participants reported that they often lose their independence after starting dialysis and health-related social needs are common, exacerbate their stress and emotional distress, and reduce their sense of well-being. Dialysis facilities may be able to enhance the experience of these patients by facilitating connections with local resources and providing opportunities for patients to support one another.

Unravelling complex choices: multi-stakeholder perceptions on dialysis withdrawal and end-of-life care in kidney disease.

BACKGROUND: For patients on dialysis with poor quality of life and prognosis, dialysis withdrawal and subsequent transition to palliative care is recommended. This study aims to understand multi-stakeholder perspectives regarding dialysis withdrawal and identify their information needs and support for decision-making regarding withdrawing from dialysis and end-of-life care. METHODS: Participants were recruited through purposive sampling from eight dialysis centers and two public hospitals in Singapore. Semi-structured in-depth interviews were conducted with 10 patients on dialysis, 8 family caregivers, and 16 renal healthcare providers. They were held in-person at dialysis clinics with patients and caregivers, and virtually via video-conferencing with healthcare providers. Interviews were audio-recorded, transcribed, and thematically analyzed. The Ottawa Decision Support Framework's decisional-needs manual was used as a guide for data collection and analysis, with two independent team members coding the data. RESULTS: Four themes reflecting perceptions and support for decision-making were identified: a) poor knowledge and fatalistic perceptions; b) inadequate resources and support for decision-making; c) complexity of decision-making, unclear timing, and unpreparedness; and d) internal emotions of decisional conflict and regret. Participants displayed limited awareness of dialysis withdrawal and palliative care, often perceiving dialysis withdrawal as medical abandonment. Patient preferences regarding decision-making ranged from autonomous control to physician or family-delegated choices. Cultural factors contributed to hesitancy and reluctance to discuss end-of-life matters, resulting in a lack of conversations between patients and providers, as well as between patients and their caregivers. CONCLUSIONS: Decision-making for dialysis withdrawal is complicated, exacerbated by a lack of awareness and conversations on end-of-life care among patients, caregivers, and providers. These findings emphasize the need for a culturally-sensitive tool that informs and prepares patients and their caregivers to navigate decisions about dialysis withdrawal and the transition to palliative care. Such a tool could bridge information gaps and stimulate meaningful conversations, fostering informed and culturally aligned decisions during this critical juncture of care.