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.

[Applying Swanson`s Caring Theory to a Patient With End Renal Stage Disease Experiencing Hopelessness].

This article describes an experience providing nursing care to a patient under hemodialysis with the end-stage renal disease who had developed depression, loathing, and other, negative personal perceptions and gradually gave up on life goals due to hopelessness. The duration of nursing care, from August 23rd through August 29th, 2019, was revisited to identify the patient`s hopelessness in the dimensions of physiology, mental status, society, and spirituality. The author applied Swanson`s Caring Theory to facilitate the process of "knowing" and "being with" while performing direct nursing care and attentive listening to assist the patient to become more open-minded and to express personal perceptions toward the disease with the goal of further engaging the patient to increase self-awareness recognition, sense of loss, and negative perceptions. Through "doing for" and "enabling," the author reinforced infection control and identified the symptoms of fluid-overload, moisture, and salinity to raise the patient`s self-awareness and self-caring techniques and to lower the risk of hospitalization. Meanwhile, by "maintaining the patient`s belief," accompanied by the encouragement and attention from family members and providing linkages to patient-support communities, the patient was guided to identify and aggregate to foster positive thinking and self-worth to increase acceptance of living with the disease. Nursing personnel may apply Swanson`s Caring Theory to better consider the patient`s perspective, provide individual caring schemes, and strengthen the recognition, self-caring techniques and supportive systems of patients, increasing patient perceptions of self-worth, restoring their confidence, promoting their adaption to their disease, and improving attentiveness.

Do the patient education program and nurse-led telephone follow-up improve treatment adherence in hemodialysis patients? A randomized controlled trial.

BACKGROUND: End-Stage Renal Disease (ESRD) is the final and permanent stage of Chronic Kidney Disease (CKD). Hemodialysis (HD) is the most common treatment for CKD. To have desirable therapeutic outcomes, patients have to adhere to a specific therapeutic regimen that reduces the hospitalization rate and side-effects of HD. The present study aimed to determine the effects of the patient education program and nurse-led telephone follow-up on adherence to the treatment in hemodialysis patients. METHODS: This is a randomized controlled trial in which a total of 66 patients were recruited using convenience sampling and then randomly assigned to two groups of control (n = 33) and intervention (n = 33). Data were collected using a demographic questionnaire, the laboratory results record sheet, and the End-Stage Renal Disease Adherence Questionnaire (ESRD-AQ), which included four dimensions of HD attendance, medication use, fluid restrictions, and diet recommendations. The intervention group received a patient education program and nurse-led follow-up services through telephone communication and the Short Message Service (SMS) for 3 months. All participants filled in the questionnaire before and after the intervention. Data were analyzed using IBM SPSS Statistics for Windows, version 25 (IBM Corp., Armonk, N.Y., USA). RESULTS: The results showed a significant difference in the mean scores of HD attendance, medication use, fluid restrictions, and diet recommendations between the two groups immediately, 1 month, and 3 months after the intervention (p < .001). The results also indicated a significant difference in the mean scores of four dimensions during the four-time points of measurement in the intervention group (P < 0.0005). Therefore, the level of treatment adherence in the intervention group was higher than in the control group. Moreover, there was a significant difference in the mean score of laboratory values between the two groups after the intervention, except for the level of serum sodium (P = 0.130). CONCLUSION: Implementation of the patient education program and nurse-led follow-up can lead to better adherence to hemodialysis in four dimensions of HD attendance, medication use, fluid restrictions, and dietary recommendations in HD patients. TRIAL REGISTRATION: IRCT registration number: IRCT20190127042512N1 ; Registration date: 2020-09-12; Registration timing: retrospectively registered: Last update: 2020-09-12.

Effect of continuous nursing on quality of life of hemodialysis patients: A protocol for systematic review and meta-analysis.

BACKGROUND: Hemodialysis is a common treatment for patients with end-stage renal failure. Long-term hemodialysis will lead to a series of complications and reduce the quality of life of patients. At present, routine nursing is only limited to in-hospital patients, whereas continuous nursing is an extension of hospital nursing work, which can solve the follow-up health problems of some patients and meet the health needs of patients in their daily life. A number of clinical studies have shown that continuous nursing can improve the quality of life of hemodialysis patients, but there is a lack of evidence-based medicine. Therefore, the purpose of this study is to explore the effect of continuous nursing on the quality of life of hemodialysis patients through systematic evaluation. METHOD: The Cochrance Library, PubMed, Embase, Web of Science, CNKI, VP Information Chinese Journal Service Platform (VIP), and Wanfang will be searched by computer. In addition, Baidu academic and Google academic are searched manually, and all randomized controlled trials on the effects of continuous nursing on the quality of life of hemodialysis patients are collected. The retrieval time is of the establishment of the database to January 31, 2021. Two evaluators screens, extract and evaluate the literature, and the data are analyzed by RevMan5.3 software. RESULT: The purpose of this study is to evaluate the effect of continuous nursing on the quality of life of hemodialysis patients by the MOS item short from health survey, exercise of self-care agency, and the incidence of complications. CONCLUSION: This study will provide reliable evidence for the application of continuous nursing in hemodialysis patients. OSF REGISTRATION NUMBER: DOI 10.17605/OSF.IO/HZKUA.

Nursing's Response to the Executive Order to Advance American Kidney Health.

The state of American kidney health is currently under the microscope. In the United States, approximately 20,000 persons advance to end-stage renal disease annually. Trends indicate accelerating increases in cost of care and a high mortality rate among patients with end-stage renal disease, with only 57% of patients surviving after 3 years. An executive order by the White House has placed the transformation of kidney care at the forefront of the country's health care agenda. The order focuses on key issues including improving outcomes, reducing treatment-related expenditures and increasing kidney donations. Mobilization of health care resources directed toward policymaking, workforce growth and development, and research will be critical to effectively achieve this executive order. Nursing's response, as the health care profession with the most members, will be crucial to achieving response implementation and success of the order. This article describes immediate and future actions including policy, leadership, clinical, educational, and research initiatives that the nursing profession should take to advance kidney health. It calls for specific actions by nursing and focuses on nursing organizations, nursing research, quality improvement initiatives, nursing innovation, advanced practice nursing, and the nephrology and transplant nursing workforce in order to improve kidney health nationally. The impact of the SARS-CoV-2 pandemic on kidney health and the implications for the profession of nursing are outlined. Although there are still many unknowns about the pandemic, nursing's voice is necessary to ensure the ongoing delivery of high-quality care.

Functional health literacy and caregiving burden among family caregivers of patients with end-stage renal disease.

Family caregivers of patients with end-stage renal disease (ESRD) experience significant caregiver-related burden, yet the contribution of their functional health literacy (FHL) to caregiving burden has not been elucidated. We investigated the magnitude of FHL and caregiving burden and their association in a descriptive, correlational cross-sectional study of family caregivers of Jordanian patients with ESRD (N = 88). The short versions of the FHL for Adults and the Zarit Burden Interview were used for assessment of caregivers. Demographic and clinical information of patients and their family caregivers were self-reported. Of family caregivers, 41% had limited FHL and 38% experienced high caregiver burden. FHL and history of comorbidity in family caregivers predicted caregiving burden independent of demographic and clinical factors. Consideration of FHL in support interventions for family caregivers may minimize some of the high perceived caregiving burden, but clinical trials of such interventions are needed to confirm this conclusion.

Effects of an Omaha system-based continuing nursing program on nutritional status in patients undergoing peritoneal dialysis: a randomized controlled trial.

PURPOSE: This study was aimed to develop and conduct an Omaha system-based continuing nursing program for chronic kidney disease (CKD) patients undergoing peritoneal dialysis (PD) and to explore its effect on patients' nutritional status. METHODS: A randomized controlled trial was performed in a teaching hospital in China between June 2017 and July 2018. A total of 203 eligible patients were included and then randomly assigned to the study group (n = 101) or the control group (n = 102). In the study group, health education, treatments and procedures, case management, and surveillance based on the Omaha system were used. In the control group, only common outpatient nursing intervention was given to the patients. Changes in subjective global assessment (SGA), anthropometric measurements including body mass index (BMI), triceps skin-fold thickness (TSF), mid-arm muscle circumference (MAMC), and handgrip strength (HGS), and biochemical parameters (hemoglobin, albumin, pre-albumin, total cholesterol, and creatinine) were evaluated before the intervention and 6 months after the intervention and differences in measurements were analyzed. RESULTS: After intervention, the proportion of well-nourished patients in the study group was significantly improved from 6.19 to 29.90% ([Formula: see text]2 = 18.441, P < 0.001), and after 6 months, this was higher in the study group than that in the control group (29.90% vs 9.28%, [Formula: see text]2 = 13.090, P < 0.001). Also, mean TSF, MAMC, and HGS were significantly improved in the study group and after 6 months, these levels were higher in the study group than those in the control group (P < 0.05). In addition, levels of hemoglobin, albumin, and pre-albumin in patients in the study group were significantly increased and after 6 months, these levels were higher in the study group than those in the control group (P < 0.05). CONCLUSIONS: The continuing nursing program based on the Omaha system improved patients' nutritional status and should be further examined in future studies.

Advance Care Planning Training for Renal Social Workers.

End Stage Renal Disease (ESRD) is a life-limiting condition for which hospice and palliative care are not routinely provided to patients and families. While the ESRD mortality rate is close to 25%, patients on dialysis are half as likely to receive hospice services than patients with other life-limiting diagnoses. Nephrologists and dialysis social workers receive little training to effectively lead patients with ESRD and their families through the stages of dying and the completion of advance care planning. The lack of professional training, a need for greater commitment to advanced care planning from dialysis corporations, and reimbursement problems for hospice care, all contribute to low rates of hospice use within the ESRD population. An ESRD advance care training program for social workers is described that was developed as a part of a larger research project designed to increase advance care planning and referrals for hospice for those with ESRD. The goals were to help social workers become better advocates for patients and families, appreciate cultural, spiritual, racial and ethnic differences, and understand the ethical and legal issues in advance care planning. The challenges that emerged included high staff turnover and a paucity of corporate commitment to training.

The significance of relationships and dynamics in families with a child with end-stage kidney disease: A qualitative study.

AIM AND OBJECTIVES: To explore experiences and the significance of relationships and dynamics among family members living with a child with severe kidney disease. BACKGROUND: Chronic kidney disease (CKD) in children is often incurable, leading to irreversible kidney damage. End-stage kidney failure in a child impacts daily life and routines, requiring significant social adaptation for all family members. However, little is known about how individual family members experience relationships, interactions and dynamics within the family. DESIGN: A qualitative exploratory study taking a phenomenological-hermeneutic approach. METHOD: Data were collected through semi-structured individual interviews with seven fathers, seven mothers, five children with end-stage kidney disease and five siblings. The data were analysed using Ricoeur's theory of narrative and interpretation, on three levels: naïve reading; structural analysis; and critical interpretation and discussion. The Consolidated Criteria for Reporting Qualitative Research checklist has been used (see Supporting Information). RESULTS: All family members experienced relationships within and outside the family as a significant part of everyday life. The well-being of the sick child had an impact on the dynamics and emotional well-being of all family members. Siblings were in need of support; however, being fair could be challenging for parents. CONCLUSION: CKD in a child has an impact on family dynamics and on the relationships between family members. Family members are vulnerable and in need of practical help and emotional support from close relatives, friends, health professionals and other individuals around them. RELEVANCE TO CLINICAL PRACTICE: In clinical practice, the ability to reflect on, or interpret, a range of situations by initiating a dialogue is essential to shape both an individual perspective and the perspective of the entire family unit.

Physical Parameters, Use of Specific Medical Treatments, Nursing Levels, and Activities of Daily Living Are Potential Indicators for Forgoing Maintenance Hemodialysis.

Maintenance hemodialysis (HD) therapy is essential for survival in patients with end-stage renal disease (ESRD); however, HD can also be life-threatening in the final stages of ESRD. Currently, no clear indicators and/or biomarkers exist regarding when HD should be forgone. In the present study, we examined temporal changes in multiple clinical parameters, including biochemical data, physical data, the use of specific medical treatments, nursing care levels, and the activities of daily living (ADL) in 47 ESRD patients who underwent maintenance HD and who died in our hospital. We also investigated the status of informed consents regarding the forgoing of HD in these patients. We found that while biochemical parameters were unaltered, physical parameters such as consciousness levels and blood pressure gradually deteriorated during hospitalization. The use of the following specific medical treatments significantly increased over time: vasopressor use, O2 inhalation, and ventilator use. The need for nursing care increased and the ADL levels decreased toward the time of death. Medical doctors gave information regarding forgoing HD to patients and/or their family/relatives in 55% of cases, obtained agreement to forego HD in 45% of cases, and HD was actually foregone in 38% of cases. Most clinical parameters were not significantly different between the patients whose HD sessions were forgone versus those in whom HD was continued, indicating that HD was foregone in the very last stages of life. The results suggest that physical parameters, the use of specific medical treatments, the levels of nursing care, and ADL are potential indicators for forgoing HD in the final stages of ESRD.

Teaching Nursing Students the Care of a Patient with End Stage Renal Disease in a Pediatric Nursing Theory Course: A Comparison of Two Instructional Methods.

Effective methodologies for teaching nursing students how to care for pediatric patients with end stage renal disease (ESRD) are not well described. Two teaching methodologies were compared using a mixed-methods approach: an at-home simulation group (three days simulating having ESRD: taking medications, eating a renal diet, nightly peritoneal dialysis), and a video group (children with ESRD and their families sharing their experiences). Data were collected via an anonymous online survey at course completion. Knowledge acquisition was assessed using psychometrically reliable multiple-choice questions; no statistically significant differences between the two groups were found, indicating both learned the material. Qualitative analysis found that both groups valued the assigned teaching method and that it deepened their learning. Students identified challenges that children with ESRD and their families are known to experience. Combining both teaching methods may ultimately be the most effective approach.

Burden, psychological well-being and quality of life of caregivers of end stage renal disease patients.

BACKGROUND: Caregivers of chronic kidney disease (CKD) patients play an important role in the management of the patients. Their psychological needs are often overlooked and unmet by the managing team. This study assessed the psychosocial well-being and quality of life (QoL) of caregivers of CKD patients in two hospitals in Southern Nigeria. METHODS: Burden of caregiving, QoL, depression, and anxiety were assessed using standardized instruments; modified Zarit questionnaire, modified SF-12 questionnaire and Hospital Anxiety and Depression Scale (HADS) respectively among caregivers of CKD patients on maintenance haemodialysis and controls. RESULTS: Fifty-seven caregivers of CKD patients and aged and sex-matched controls participated in the study. Anxiety was significantly higher in caregivers compared to control (31.6% vs 5.3%, p = 0.004). Also, depression was significantly higher in caregivers (31.6% vs 3.5%, p= <0.001). Twenty-eight (49.1%) of the caregivers had mild to moderate burden and 19 (33.3%) had a high burden. The mean Zarit burden score was higher in female caregivers compared to male caregivers (18.30±8.11 vs 14.83±6.70, p = 0.09). The mean depression score was higher in female caregivers compared to male caregivers (8.58±3.83 vs 6.75±3.80, p= 0.08). There was significant positive correlation between Zarit burden and hospital anxiety score (r = 0.539, p= < 0.001) and depression score (r = 0.472, p = 0.005). CONCLUSION: Depression, anxiety and burden were common among caregivers of CKD patients especially females compared to controls. Supportive interventions for these caregivers should be included in treatment guidelines in order to improve overall patients' outcome. FUNDING: Self-funded.

Perceptions and Practices of Nephrology Nurses Working in Home Dialysis: An International Survey.

Globally, home dialysis prevalence has been declining relative to the increase in end stage renal disease and renal replacement therapy. The goal of this study was to identify international perceptions and practices. A web-based questionnaire was disseminated to nephrology nurses in 30 home dialysis-prevalent nations. Global telehealth use was low (23%), contrasting with 83% respondents agreeing telehealth would improve care. Only 31% of all programs enabled patient training outside of normal working hours (e.g., nights and weekends), and 31% of all program patients had some cost reimbursement, with a significant difference between U.S. and non-U.S. programs (U.S. 11%, non-U.S. 59%, 2 = 93.6, p < 0.0001). Significant differences in the need for monthly clinic visits (U.S. 72%, non-US 44%, 2 = 83.7, p < 0.0001) were also found. Telehealth provision and patient training flexibility is limited, and patient cost reimbursement is low. Increased telehealth, patient cost reimbursement, and flexible training models may promote home dialysis growth.

Fatigue in Individuals with End Stage Renal Disease.

Fatigue is a subjective overwhelming feeling of tiredness at rest, exhaustion with activity, lack of energy that impedes daily tasks, lack of endurance, or a loss of vigor. Individuals with end stage renal disease (ESRD) experience a high rate and severity of fatigue. Symptom management of fatigue in this population is critical, since fatigue has been linked with lower quality of life and higher mortality rates. In this article, we present a definition and overview of fatigue, a review of factors contributing to fatigue, and ways to manage fatigue in individuals with ESRD.

[An Ethical Analysis of the Shared Decision-Making Process to Withdraw From Hemodialysis for an Elderly Patient With End Stage Renal Disease].

Elderly patients with end stage renal disease (ESRD) frequently suffer from frailty, multiple comorbidities, and complications that greatly increase the mortality rate for this population. The irreversibility and variability of ESRD directly affect quality of life, which highlights the importance of gaining an early understanding of the preferences and expectations of these patients with regard to end-of-life care. This article describes a nursing experience that used ethical analysis to help an elderly ESRD patient and the dilemma faced by his family as to whether to sustain or withdraw hemodialysis. This article examines the uncertain trajectories of this disease and how to use shared decision making with the patient and his/her family to make the best decisions. A comprehensive assessment was conducted to identify the major health-related problems, to elicit the dilemmas faced in making the decision to sustain or end hemodialysis, and to understand the pain and suffering of the patient. Symptom control and comfort were identified as the most important goals of the patient, followed by building trust and rapport with his family. An analysis of the pros and cons of treatment was conducted using the 4-box ethical analysis developed by Josen, Siegler, and Winslade. The shared decision-making process was applied to help the patient express his expectations for his end-of-life care. While the health professionals considered that pain and suffering may influence the patient's decision, the patient found his connection between himself and others, self-value, and meaning of life through family love and support. A needs-based, flexible approach was adopted that established a continuous-care plan that was designed to provide the best care for the patient under a variety of possible scenarios while involving the family, which created a family-centered decision-making process that improved the quality of life of the elderly ESRD patient.

Experiences of symptoms and health service preferences among older people living with chronic diseases during the last year of life.

BACKGROUND:: There is limited understanding of the symptoms that older people living with cancer, chronic obstructive pulmonary disease and chronic kidney disease experience during the last year of life in Thailand, in addition to their health service preferences. AIMS:: To survey the symptom experiences and health service preferences at the end of life of older people with chronic illnesses from the perspective of bereaved carers. METHODS:: The study used a retrospective post-bereavement approach to collect quantitative data. Purposive sampling was used to select 76 bereaved relatives of older people living with chronic illnesses who had died in the previous 5 to10 months. Telephone interviews and a translated version of the Views of Informal Carers-Evaluation Services (VOICES) questionnaire were conducted. Data were analysed using the statistical package SPSS version 17. FINDINGS:: The overall quality of care received by older people living with chronic diseases during the last three months of life was described as 'good' (36%). However, in comparing the quality of care from different settings, most of the subjects (63%) thought that the quality of care at home should be rated as 'poor'. During the last twelve months, 35% of the respondents rated pain and poor appetite as the main symptoms, while 25% described experiencing 'worry' related to being at the end of life. The severity of many symptoms increased during the last three months of life; 21% of carers recommended that pain caused the most suffering to their relatives at 'all times', when compared with other symptoms of end of life. Around 21-35% reported that their relatives 'sometimes' experienced worry, low mood, breathlessness and oedema. During the last three days of life, it was reported by 97% of respondents that their relatives spent all of their time in hospital, and no respondents reported that their relatives had died at home. CONCLUSION:: The study indicates that older people living with chronic diseases in Thailand are less likely to access specialist palliative care and are more likely to have poor symptom control at the end of life. It indicates that health services may not be meeting patients' needs and that there was clearly insufficient healthcare provision at home for older people to help them to manage their symptoms such as pain and breathlessness.

Nonadherence in Hemodialysis Patients and Related Factors: A Multicenter Study.

BACKGROUND: Nonadherence to dietary and fluid restrictions, hemodialysis (HD), and medication treatment has been shown to increase the risks of hospitalization and mortality significantly. Sociodemographic and biochemical parameters as well as psychosocial conditions such as depression and anxiety are known to affect nonadherence in HD patients. However, evidence related to the relative importance and actual impact of these factors varies among studies. PURPOSE: The aim of this study was to identify the factors that affect nonadherence to dietary and fluid restrictions, HD, and medication treatment. METHODS: This descriptive study was conducted on 274 patients who were being treated at four HD centers in Turkey. The parameters used to determine nonadherence to dialysis treatment were as follows: skipping multiple dialysis sessions during the most recent 1-month period, shortening a dialysis session by more than 10 minutes during the most recent 1-month period, and Kt/V < 1.4. The parameters used to determine nonadherence to dietary and fluid restriction were as follows: serum phosphorus level > 7.5 mg/dl, predialysis serum potassium level > 6.0 mEq/L, and interdialytic weight gain > 5.7% of body weight. The Morisky Green Levine Medication Adherence Scale was performed to determine nonadherence to medication treatment. A patient was classified as nonadherent if he or she did not adhere to one or more of these indices. The Hospital Anxiety and Depression Scale was used to identify patient risk in terms of anxiety and depression. Logistic regression was used to determine the predictors of nonadherence. RESULTS: The nonadherence rate was 39.1% for dietary and fluid restrictions, 33.6% for HD, and 20.1% for medication. The risk of nonadherence to dietary and fluid restriction was found to be 4.337 times higher in high school graduates (95% CI [1.502, 12.754], p = .007). The risk of nonadherence to HD treatment was 2.074 times higher in men (95% CI [1.213, 3.546], p = .008) and 2.591 times higher in patients with a central venous catheter (95% CI [1.171, 5.733], p = .019). Longer duration in HD resulted in 0.992 times decrease in risk of nonadherence to treatment (95% CI [0.986, 0.998], p = .005). CONCLUSIONS/IMPLICATIONS FOR PRACTICE: Educational status, being male, having a central venous catheter, and having a short HD duration were found to be risk factors for nonadherence. Nurses must consider the patient's adherence to the dietary and fluid restrictions, HD, and medication treatment at each visit.

Outside-the-Box Skills Validation of Competency.

The potential for harm to patients related to initiation and maintenance of continuous dialysis therapy by the bedside nurse led to the development of a novel method to educate nurses new to the skill of continuous renal replacement therapy. [J Contin Educ Nurs. 2019;50(2):59-60.].