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1.
PLoS One ; 19(5): e0302525, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38722989

RESUMO

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.


Assuntos
Cuidadores , Falência Renal Crônica , Pesquisa Qualitativa , Diálise Renal , Humanos , Cuidadores/psicologia , Diálise Renal/psicologia , Masculino , Feminino , Falência Renal Crônica/terapia , Falência Renal Crônica/psicologia , Falência Renal Crônica/enfermagem , Pessoa de Meia-Idade , Idoso , Adulto , Ansiedade/psicologia , Apoio Social , Qualidade de Vida , Depressão/psicologia , Estresse Psicológico , Necessidades e Demandas de Serviços de Saúde
2.
Sci Rep ; 14(1): 9981, 2024 05 01.
Artigo em Inglês | MEDLINE | ID: mdl-38693146

RESUMO

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.


Assuntos
Fadiga , Prurido , Qualidade de Vida , Diálise Renal , Sede , Humanos , Diálise Renal/efeitos adversos , Feminino , Masculino , Prurido/etiologia , Prurido/psicologia , Pessoa de Meia-Idade , Fadiga/etiologia , Fadiga/terapia , Estudos Transversais , Sede/fisiologia , Adulto , Falência Renal Crônica/terapia , Falência Renal Crônica/psicologia , Idoso , Cooperação e Adesão ao Tratamento/psicologia , Irã (Geográfico) , Inquéritos e Questionários
3.
Clin Transplant ; 38(5): e15338, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38762787

RESUMO

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.


Assuntos
Rejeição de Enxerto , Acessibilidade aos Serviços de Saúde , Falência Renal Crônica , Transplante de Rim , Listas de Espera , Humanos , Feminino , Masculino , Pessoa de Meia-Idade , Canadá , Falência Renal Crônica/cirurgia , Falência Renal Crônica/psicologia , Adulto , Rejeição de Enxerto/etiologia , Prognóstico , Seguimentos , Sobrevivência de Enxerto , Doadores de Tecidos/provisão & distribuição , Doadores de Tecidos/psicologia , Obtenção de Tecidos e Órgãos , Idoso , Isoanticorpos/imunologia
4.
BMC Nephrol ; 25(1): 179, 2024 May 22.
Artigo em Inglês | MEDLINE | ID: mdl-38778249

RESUMO

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.


Assuntos
Escolaridade , Qualidade de Vida , Diálise Renal , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Estudos Transversais , Estudos Retrospectivos , Idoso , Fatores Sexuais , Países Baixos/epidemiologia , Emoções , Adulto , Falência Renal Crônica/terapia , Falência Renal Crônica/psicologia , Estudos de Coortes
5.
BMC Geriatr ; 24(1): 416, 2024 May 10.
Artigo em Inglês | MEDLINE | ID: mdl-38730386

RESUMO

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.


Assuntos
Fragilidade , Qualidade de Vida , Diálise Renal , Humanos , Feminino , Masculino , Idoso , Idoso de 80 Anos ou mais , Qualidade de Vida/psicologia , Fragilidade/epidemiologia , Fragilidade/diagnóstico , Desnutrição/epidemiologia , Desnutrição/diagnóstico , Desnutrição/terapia , Idoso Fragilizado , Falência Renal Crônica/terapia , Falência Renal Crônica/epidemiologia , Falência Renal Crônica/complicações , Falência Renal Crônica/psicologia
6.
J Pak Med Assoc ; 74(5): 1000-1002, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38783457

RESUMO

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.


Assuntos
Falência Renal Crônica , Diálise Renal , Humanos , Diálise Renal/psicologia , Falência Renal Crônica/terapia , Falência Renal Crônica/psicologia , Estresse Psicológico/psicologia , Angústia Psicológica , Adaptação Psicológica , Ansiedade/psicologia
7.
BMC Geriatr ; 24(1): 378, 2024 Apr 27.
Artigo em Inglês | MEDLINE | ID: mdl-38671357

RESUMO

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.


Assuntos
Estudos de Viabilidade , Qualidade de Vida , Diálise Renal , Telemedicina , Humanos , Masculino , Telemedicina/métodos , Feminino , Idoso , Tailândia , Diálise Renal/métodos , Falência Renal Crônica/terapia , Falência Renal Crônica/psicologia , Pessoa de Meia-Idade , Idoso de 80 Anos ou mais
8.
Qual Life Res ; 33(6): 1501-1512, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38565748

RESUMO

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.


Assuntos
Fadiga , Qualidade de Vida , Diálise Renal , Humanos , Masculino , Feminino , Estudos Longitudinais , Pessoa de Meia-Idade , China , Fadiga/psicologia , Adulto , Idoso , Inquéritos e Questionários , Falência Renal Crônica/terapia , Falência Renal Crônica/psicologia
9.
Health Sociol Rev ; 33(1): 24-42, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38471040

RESUMO

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.


Assuntos
Falência Renal Crônica , Diálise Renal , Humanos , Diálise Renal/psicologia , Falência Renal Crônica/terapia , Falência Renal Crônica/psicologia , Masculino , Feminino , Pessoa de Meia-Idade , Doença Crônica/psicologia , Doença Crônica/terapia , Entrevistas como Assunto , Idoso
10.
Hemodial Int ; 28(2): 198-215, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38468403

RESUMO

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.


Assuntos
Falência Renal Crônica , Qualidade de Vida , Criança , Humanos , Pré-Escolar , Adolescente , Qualidade de Vida/psicologia , Diálise Renal/psicologia , Estudos Retrospectivos , Estudos Transversais , Falência Renal Crônica/terapia , Falência Renal Crônica/psicologia
11.
Nephrol Nurs J ; 51(1): 25-46, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38456726

RESUMO

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.


Assuntos
Falência Renal Crônica , Enfermagem em Nefrologia , Nefrologia , Humanos , Falência Renal Crônica/psicologia , Qualidade de Vida , Diálise Renal/psicologia , Rim
13.
Am J Kidney Dis ; 83(6): 739-749, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38218454

RESUMO

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.


Assuntos
Pesquisa Qualitativa , Diálise Renal , Humanos , Masculino , Feminino , Diálise Renal/psicologia , Pessoa de Meia-Idade , Idoso , Falência Renal Crônica/terapia , Falência Renal Crônica/psicologia , Adulto , Necessidades e Demandas de Serviços de Saúde , Avaliação das Necessidades , Texas , Entrevistas como Assunto
14.
BMC Nephrol ; 25(1): 6, 2024 01 03.
Artigo em Inglês | MEDLINE | ID: mdl-38172719

RESUMO

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.


Assuntos
Nefropatias , Falência Renal Crônica , Assistência Terminal , Humanos , Diálise Renal/métodos , Falência Renal Crônica/terapia , Falência Renal Crônica/psicologia , Qualidade de Vida , Tomada de Decisões , Pesquisa Qualitativa
15.
J Nurs Res ; 32(1): e309, 2024 Jan 01.
Artigo em Inglês | MEDLINE | ID: mdl-38190331

RESUMO

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.


Assuntos
Depressão , Falência Renal Crônica , Humanos , Masculino , Feminino , Estudos Transversais , Depressão/psicologia , Religião , Diálise Renal/efeitos adversos , Diálise Renal/psicologia , Falência Renal Crônica/complicações , Falência Renal Crônica/terapia , Falência Renal Crônica/psicologia , Espiritualidade , Inquéritos e Questionários , Adaptação Psicológica
16.
JPEN J Parenter Enteral Nutr ; 48(2): 184-191, 2024 02.
Artigo em Inglês | MEDLINE | ID: mdl-38035855

RESUMO

BACKGROUND: There is inequal access to treatment and scarce evidence on how the disease burden in chronic intestinal failure (CIF) compares to other chronic nonmalignant types of organ failure. Therefore, we compared the health-related quality of life (HRQOL) of people with CIF with that of people with end-stage kidney disease (ESKD) receiving hemodialysis (HD). These groups were selected for comparison as they have similar treatment characteristics. We hypothesized that people treated with HD and people with CIF had similarly poor HRQOL. METHODS: HRQOL was evaluated and compared in a cross-sectional study of adult people with CIF and people with ESKD HD at a tertiary hospital in Denmark, using the Short-Form 36 (SF-36). RESULTS: One hundred forty-one people with CIF and 131 people with ESKD receiving HD were included in the analysis. Both groups reported low scores (<50) for HRQOL on general health, vitality, and role limitation-physical. People with ESKD receiving HD had significantly lower scores than people with CIF regarding physical functioning, general health, and vitality when adjusted for sex and age. No significant difference was found for any other SF-36 domain. CONCLUSION: HRQOL was similarly and significantly reduced in people with CIF and in people with ESKD receiving HD. People with ESKD receiving HD had significantly poorer HRQOL than people with CIF in some aspects of physical and mental health. Access to home parenteral support treatment varies among countries that typically provide HD, suggesting an inequality in healthcare based on the type of organ failure.


Assuntos
Enteropatias , Insuficiência Intestinal , Falência Renal Crônica , Adulto , Humanos , Qualidade de Vida/psicologia , Estudos Transversais , Falência Renal Crônica/terapia , Falência Renal Crônica/psicologia , Diálise Renal/psicologia , Doença Crônica , Enteropatias/complicações , Enteropatias/terapia
17.
J Transcult Nurs ; 35(2): 134-141, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38140779

RESUMO

BACKGROUND: Depression is one of the common psychological problems in patients on hemodialysis. We aimed to identify the predictors associated with depressive symptoms among patients on hemodialysis from a population under-represented in research and minoritized in countries like the United States. METHODS: This cross-sectional study used a convenience sample of patients in Oman. Data were analyzed using linear multiple regression. RESULTS: A total of 157 patients on hemodialysis participated in the study, with 40.5% reporting different levels of depressive symptoms. Higher stress levels (ß = .643; p < .01) and higher perceived effectiveness of the fatalistic coping style (ß = .144; p < .05) were significant predictors of depressive symptoms. Patients with a higher optimistic coping style (ß = -.182; p < .01) had lower levels of depressive symptoms. CONCLUSION: Arab Muslim hemodialysis patients have significant levels of depressive symptoms. Identifying predictors of depressive symptoms may help identify those at risk and provide culturally appropriate interventions.


Assuntos
Depressão , Falência Renal Crônica , Humanos , Depressão/complicações , Depressão/diagnóstico , Capacidades de Enfrentamento , Adaptação Psicológica , Árabes , Islamismo , Estudos Transversais , Falência Renal Crônica/complicações , Falência Renal Crônica/terapia , Falência Renal Crônica/psicologia , Estresse Psicológico
18.
BMC Nephrol ; 24(1): 322, 2023 10 27.
Artigo em Inglês | MEDLINE | ID: mdl-37891520

RESUMO

BACKGROUND: Later stage chronic kidney disease (CKD) is associated with poorer self-perceived health-related quality of life (HRQOL), a major consideration for many patients. Psychological factors such as depression and anxiety have been linked with poorer HRQOL. We aimed to determine if anxiety or depressive symptoms are significantly associated with self-perceived health-related quality of life, in patients with CKD Stage 5. The secondary aim was to determine which patient-associated factors are associated with HRQOL in patients with CKD Stage 5. METHODS: This retrospective cross-sectional study included patients that attended the St George Hospital Kidney Supportive Care (KSC) clinic between 1 and 2015 and 30 June 2022 with CKD Stage 5 (either conservatively-managed or receiving dialysis). Patients completed surveys of their functional 'domains' and quality of life (EQ-5D-5L) and symptom surveys (IPOS-Renal) at their first visit. We performed multivariable linear regression analysis with the outcome of interest being HRQOL, measured using the EQ-VAS, a continuous 100-point scale, for patients undergoing conservative management or dialysis. Pre-specified variables included age, sex, eGFR (for those conservatively-managed), "feeling depressed" (IPOS-Renal), "feeling anxious" (IPOS-Renal) and "anxiety/depression" (EQ-5D-5L). RESULTS: We included 339 patients. 216 patients received conservative kidney management (CKM) and 123 patients received dialysis. Patients receiving CKM were significantly older than those on dialysis, (median age 83 years vs. 73 years, p < 0.001). For conservatively-managed patients, variables independently associated with poorer EQ-VAS were difficulty performing usual activities (EQ-5D-5L), drowsiness (IPOS-Renal) and shortness of breath (IPOS-Renal). For patients receiving dialysis, variables that were independently associated with poorer EQ-VAS were reduced ability to perform self-care (EQ-5D-5L) and lack of energy (IPOS-Renal). Anxiety and depressive symptoms were not significantly associated with poorer EQ-VAS for either group of patients. CONCLUSIONS: Symptoms associated with reduced HRQOL include shortness of breath, drowsiness and impaired functional ability. Optimization of multidisciplinary teams focusing on these issues are likely to be of benefit.


Assuntos
Falência Renal Crônica , Insuficiência Renal Crônica , Humanos , Idoso de 80 Anos ou mais , Qualidade de Vida/psicologia , Diálise Renal/psicologia , Estudos Transversais , Estudos Retrospectivos , Falência Renal Crônica/terapia , Falência Renal Crônica/psicologia , Insuficiência Renal Crônica/terapia , Inquéritos e Questionários , Dispneia , Nível de Saúde
19.
Blood Purif ; 52(9-10): 751-758, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37703855

RESUMO

INTRODUCTION: Fatigue is a common but often overlooked symptom in dialysis patients. Factors affecting fatigue in dialysis patients are currently unclear. There are few studies on the effects of mental factors and dialysis modality on fatigue. This study aims to explore the potential relationship between fatigue and insomnia, as well as psychiatric disorders such as anxiety and depression among patients who undergo peritoneal dialysis (PD) or hemodialysis (HD). METHODS: There were 96 HD patients and 160 PD patients at our hospital who voluntarily participated in the survey. A questionnaire survey was conducted to gather general characteristics of the patients and to evaluate fatigue, sleep quality, anxiety, and depression levels among PD and HD patients. RESULTS: The overall fatigue score was 53.83 ± 14.22 for the PD group and 57.92 ± 16.35 for the HD group. Notably, the fatigue level was lower in the PD group compared to the HD group (p < 0.05). Univariate analysis indicated that fatigue was associated with occupational status and income in the PD group, as well as educational level and income in the HD group (p < 0.05). Correlation analysis revealed that patients in both groups who were older and had higher scores for insomnia, anxiety, and depression experienced more severe fatigue. Moreover, body mass index was positively correlated with fatigue status in the PD group, while duration of dialysis showed a positive association with fatigue in the HD group. Multivariate regression analysis identified income and depression as major factors influencing fatigue in the PD group, and duration of dialysis, income, and depression in the HD group. CONCLUSION: Patients who undergo dialysis exhibit high levels of fatigue, with the severity of fatigue being less pronounced in the PD group compared to the HD group. Fatigue in these patients is associated with the duration of dialysis, income level, and presence of depression.


Assuntos
Falência Renal Crônica , Angústia Psicológica , Distúrbios do Início e da Manutenção do Sono , Humanos , Diálise Renal/efeitos adversos , Diálise Renal/psicologia , Falência Renal Crônica/complicações , Falência Renal Crônica/terapia , Falência Renal Crônica/psicologia , Distúrbios do Início e da Manutenção do Sono/etiologia , Fadiga/etiologia
20.
Adv Exp Med Biol ; 1425: 47-57, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37581780

RESUMO

INTRODUCTION: Hemodialysis is the most frequent treatment modality for End-Stage Renal Disease (ESRD). However, a number of limitations and modifications accompany this treatment, affecting people's physical and psychological well-being and increasing anxiety symptoms. The aim of this study was to investigate the level of anxiety and health locus of control among dialysis patients. METHODOLOGY: One hundred and five patients on hemodialysis treatment completed a questionnaire with demographic characteristics, the State-Trait Anxiety Inventory and the Multidisciplinary Health Locus of Control Scale. RESULTS: Women had significantly higher levels of state anxiety than men (p = 0.019). Similarly, patients with primary school education had significantly higher trait and total anxiety levels than those with technological education (p = 0.002 and p = 0.033, respectively). Widowed patients exhibited significantly higher state, trait, and total anxiety levels than married (p = 0.032, p = 0.012, and p = 0.012, respectively). Participants who did not do any kind of exercise had significantly higher level of state, trait, and total anxiety than those who did (p = 0.011, p = 0.015, and p = 0.006, respectively). Respondents who did not have any self-care skills had significantly higher level of state, trait, and total anxiety than those who had (p = 0.011, p = 0.015, and p = 0.006, respectively). State, trait, and total anxiety levels were significantly (p ≤ 0.05) correlated negatively with internal locus of control and positively with "chance" locus of control scale. CONCLUSIONS: Hemodialysis patients had increased anxiety symptoms and believed that others had control over their health to a greater extent. Renal professionals need to apply effective interventions to dialysis patients in order to help them gain a better sense of control over their health and reduce anxiety symptoms.


Assuntos
Controle Interno-Externo , Falência Renal Crônica , Masculino , Humanos , Feminino , Ansiedade/psicologia , Diálise Renal/efeitos adversos , Falência Renal Crônica/terapia , Falência Renal Crônica/psicologia , Transtornos de Ansiedade , Depressão
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