Palliative Care in Kidney Disease

A special issue of Healthcare (ISSN 2227-9032). This special issue belongs to the section "Nursing".

Deadline for manuscript submissions: closed (22 March 2022) | Viewed by 19781

Special Issue Editors


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Guest Editor
School of Nursing and Midwifery, Queen’s University Belfast, Belfast BT9 7BL, UK
Interests: cancer; palliative care; patient and lay carer experience; mixed methods research; renal; cachexia
Special Issues, Collections and Topics in MDPI journals

E-Mail Website
Guest Editor
Medical Biology Centre, School of Nursing and Midwifery, Queen’s University, Belfast BT9 7BL, UK
Interests: well-being; quality of life; palliative care; nephrology; mixed methods; cachexia
Special Issues, Collections and Topics in MDPI journals

Special Issue Information

Dear Colleagues,

This special issue of Healthcare will focus on palliative care in kidney disease. Patients with renal disease live with a serious chronic illness and can present with a range of conditions highlighting the multifaceted nature of this patient population. Patients with end-stage kidney disease (ESKD) experience significant morbidity and mortality issues, yet are less likely to receive palliative care services compared to other diseases. Renal management at any stage of the disease involves an intensive routine of clinical care however living with renal disease requires significant self-management and care. It is strongly advocated that ESKD requires an interdisciplinary palliative care approach starting at the point of diagnosis and continuing throughout the patient’s life. In such cases, palliative care presumes a holistic comprehensive supportive role addressing the physical, psychosocial, spiritual and existential needs of patients and their families. This includes end of life issues for patients, as well as families having the appropriate bereavement support. However, clinicians working in nephrology have called for more training in aspects of palliative care in ESKD.

We will feature original research and include interesting clinical studies, reviews, short reports, narratives and opinion pieces from researchers interested in this research topic. We welcome papers focused on: (1) the role of supportive and palliative care in kidney disease for both patients, carers and/or healthcare staff; (2) provide specific learning points for multidisciplinary HCPs working in renal healthcare where palliative care is provided; (3) advocate for an interdisciplinary palliative care approach for patients and families; (4) highlight the need for continued appropriate and integrated psychosocial care for people living with kidney disease.

Prof. Dr. Joanne Reid
Dr. Clare McKeaveney
Guest Editors

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Keywords

  • Healthcare
  • Supportive and Palliative Care
  • Kidney Disease

Published Papers (6 papers)

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Research

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9 pages, 251 KiB  
Article
Dialysis, Distress, and Difficult Conversations: Living with a Kidney Transplant
by Clare McKeaveney, Helen Noble, Aisling E. Courtney, Sian Griffin, Paul Gill, William Johnston, Alexander P. Maxwell, Francesca Teasdale and Joanne Reid
Healthcare 2022, 10(7), 1177; https://0-doi-org.brum.beds.ac.uk/10.3390/healthcare10071177 - 23 Jun 2022
Cited by 5 | Viewed by 2123
Abstract
Background: Providing holistic care to kidney patients is important; however, without full consideration of the perspectives of people living with a kidney transplant, the provision of truly ‘holistic healthcare’ cannot be possible. It is imperative to understand patient experiences by including kidney [...] Read more.
Background: Providing holistic care to kidney patients is important; however, without full consideration of the perspectives of people living with a kidney transplant, the provision of truly ‘holistic healthcare’ cannot be possible. It is imperative to understand patient experiences by including kidney patients in key strategies and future renal service planning. Ignoring these important patient views means that there is a significant risk of inappropriate renal service provision and lack of adequate support, impacting overall health. The aim of this study was to develop an in-depth understanding of the lived experiences of kidney transplant recipients. Methods: A total of 23 participants were recruited between two regional nephrology units within the United Kingdom via clinical gatekeepers. In-depth interviews were undertaken. Interviews were digitally recorded, transcribed verbatim, and subjected to interpretative phenomenological analysis. Results: Two themes emerged: “managing ongoing fears of dialysis, distress, and COVID-19” and “dealing with difficult conversations”. Conclusions: Renal healthcare professionals need to understand more than the biological impact of receiving a kidney transplant. Understanding the holistic and multidomain experiences that these participants experience will help healthcare professionals to recognize the needs of this group and ensure more responsive psychosocial care. Full article
(This article belongs to the Special Issue Palliative Care in Kidney Disease)
9 pages, 225 KiB  
Article
Psychosocial Well-Being of Patients with Kidney Failure Receiving Haemodialysis during a Pandemic: A Survey
by Clare McKeaveney, Helen Noble, Claire Carswell, William Johnston and Joanne Reid
Healthcare 2021, 9(8), 1087; https://0-doi-org.brum.beds.ac.uk/10.3390/healthcare9081087 - 23 Aug 2021
Cited by 9 | Viewed by 2999
Abstract
Background: Living with kidney failure and undergoing hospital haemodialysis (HD) is associated with a high prevalence of mental health problems and poor quality of life. However, the COVID-19 pandemic has brought additional challenges for this patient population. Objectives: To understand the impact on [...] Read more.
Background: Living with kidney failure and undergoing hospital haemodialysis (HD) is associated with a high prevalence of mental health problems and poor quality of life. However, the COVID-19 pandemic has brought additional challenges for this patient population. Objectives: To understand the impact on mental health and well-being during the COVID-19 pandemic in people receiving HD. Methods: An online survey using a cross-sectional study design. Two validated assessment tools (General Health Questionnaire-12 (GHQ-12); Personal Wellbeing Index (PWI)), binary, Likert and free-text qualitative questions were included. Individuals with kidney failure receiving HD, over 18 years of age, were recruited online between July and August 2020. Results: Forty-four participants were recruited. Approximately, 54% of respondents were tested for COVID-19; however, no positive results were reported by patients or associated family members. Scores of GHQ-12 and PWI were compared with those from previous studies. Mental health distress was higher in prevalence (68.2%) and severity (M = 18.3) in this study when compared to that of the general population in Northern Ireland during COVID-19 (April 2020). In addition, well-being (M = 37.16, SD = 18.19) was poorer when compared to that of a pre-COVID-19 dialysis patient population. Conclusion: During the current pandemic, individuals receiving hospital HD have heightened mental health distress, and their well-being is impacted negatively. This study reinforces the need to provide appropriate psychosocial care as well as supportive interventions for mental distress to patients with kidney failure during and after the COVID-19 pandemic. Full article
(This article belongs to the Special Issue Palliative Care in Kidney Disease)
12 pages, 247 KiB  
Article
Factors Influencing Self-Efficacy and Self-Management among Patients with Pre-End-Stage Renal Disease (Pre-ESRD)
by Pao-Chin Lai, Shu-Fang Vivienne Wu, Javad Alizargar, Satriya Pranata, Juin-Ming Tsai and Nan-Chen Hsieh
Healthcare 2021, 9(3), 266; https://0-doi-org.brum.beds.ac.uk/10.3390/healthcare9030266 - 02 Mar 2021
Cited by 12 | Viewed by 3746
Abstract
Aim: Chronic kidney disease (CKD) is an emerging major public health issue that leads to end-stage kidney disease (ESRD). Factors influencing the self-management and self-efficacy of ESRD patients are still under investigation. The objective of this study is to evaluate the association of [...] Read more.
Aim: Chronic kidney disease (CKD) is an emerging major public health issue that leads to end-stage kidney disease (ESRD). Factors influencing the self-management and self-efficacy of ESRD patients are still under investigation. The objective of this study is to evaluate the association of depression and anxiety with self-management and self-efficacy in patients with pre-ESRD. Methods: Patients in the department of nephrology of a regional hospital in Taiwan were invited to participate and were included in our study if they had a confirmed diagnosis of early-stage CKD, were more than 20 years old, and could converse in Mandarin Chinese or Taiwanese. Patients diagnosed with depression, who could not execute self-care, or who had cognitive deficits were excluded. In total, this cross-sectional study included 112 pre-ESRD patients. We used the Chinese versions of the hospital anxiety and depression scale (HADS), the chronic kidney disease self-efficacy instrument (CKD-SE), and the chronic kidney disease self-management instrument (CKD-SM) as the questionnaire. Spearman’s rank correlation and logistic regressions were used to analyze the data. Results: The top quartile of self-management and self-efficacy scores (28 patients) was defined as high self-management and -efficacy, respectively, and the lower three quartiles as low self-management and -efficacy. The logistic regression analysis showed that having depression decreased the odds of having high self-management by 75.4% and high self-efficacy by 75.1%. Having an education level of senior high school or above increased the odds ratios for having high self-management and high self-efficacy to 4.47 and 3.56 (all p-values < 0.05). Conclusion: Controlling depression as well as increasing the level of education can potentially increase self-management and self-efficacy in pre-ESRD patients. Full article
(This article belongs to the Special Issue Palliative Care in Kidney Disease)

Review

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12 pages, 462 KiB  
Review
Knowledge Requirements and Unmet Needs of Informal Caregivers of Patients with End-Stage Kidney Disease (ESKD) Receiving Haemodialysis: A Narrative Review
by Michael Matthews, Joanne Reid, Clare McKeaveney and Helen Noble
Healthcare 2022, 10(1), 57; https://0-doi-org.brum.beds.ac.uk/10.3390/healthcare10010057 - 29 Dec 2021
Cited by 4 | Viewed by 2364
Abstract
Background: Patients with end-stage kidney disease receiving haemodialysis rely heavily on informal caregivers to support them living at home. Informal caregiving may exact a toll on caregivers’ physical, emotional, and social well-being, impacting negatively on their overall quality of life. The aim of [...] Read more.
Background: Patients with end-stage kidney disease receiving haemodialysis rely heavily on informal caregivers to support them living at home. Informal caregiving may exact a toll on caregivers’ physical, emotional, and social well-being, impacting negatively on their overall quality of life. The aim of this narrative review is to report knowledge requirements and needs of informal caregivers of patients with end stage kidney disease (ESKD) receiving haemodialysis. Methods: The review followed the Preferred Reporting Items for Reporting Systematic Reviews and Meta-analyses (PRISMA). Five electronic databases were searched: Web of Science, PsycINFO, Embase, Medline, and CINAHL to identify the experiences and unmet needs of informal caregivers of patients with end stage kidney disease (ESKD) receiving haemodialysis. Results: Eighteen papers were included in the review and incorporated a range of methodological approaches. There are several gaps in the current literature around knowledge and informational needs and skills required by informal caregivers, such as signs and symptoms of potential complications, dietary requirements, and medication management. Although most research studies in this review illustrate the difficulties and challenges faced by informal caregivers, there is a paucity of information as to which support mechanisms would benefit caregivers. Conclusion: Informal caregivers provide invaluable assistance in supporting people with ESKD undergoing haemodialysis. These informal caregivers however experience multiple unmet needs which has a detrimental effect on their health and negatively influences the extent to which they can adequately care for patients. The development of supportive interventions is essential to ensure that informal caregivers have the requisite knowledge and skills to allow them to carry out their vital role. Full article
(This article belongs to the Special Issue Palliative Care in Kidney Disease)
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23 pages, 2060 KiB  
Review
Factors Associated with Burden in Caregivers of Patients with End-Stage Kidney Disease (A Systematic Review)
by Bushra Alshammari, Helen Noble, Helen McAneney, Farhan Alshammari and Peter O’Halloran
Healthcare 2021, 9(9), 1212; https://0-doi-org.brum.beds.ac.uk/10.3390/healthcare9091212 - 14 Sep 2021
Cited by 16 | Viewed by 5285
Abstract
Background: Caring for a patient with end-stage kidney disease (ESKD) is highly stressful and can impact negatively on the physical and psychological well-being of caregivers. To accurately assess caregiver burden (CB), health care providers (HCPs) need to identify characteristics associated with an increase [...] Read more.
Background: Caring for a patient with end-stage kidney disease (ESKD) is highly stressful and can impact negatively on the physical and psychological well-being of caregivers. To accurately assess caregiver burden (CB), health care providers (HCPs) need to identify characteristics associated with an increase in CB. Aim: The aim of this review is to explore CB in caregivers of adult patients with ESKD and to identify characteristics associated with any increase in CB. Method: A comprehensive literature search was completed using five electronic databases. Medline, Embase, CINHAL, PsycINFO, and Scopus. The Joanna Briggs Institute checklist (JBI) was used to quality appraise full text papers included in the review. No time limit for the date of publication of studies was employed, to enable the inclusion of more extensive literature. Results: A total of 38 relevant studies from 18 countries were identified and included in the review. A variety of patient and caregiver factors can impact positively or negatively on CB, including socio-demographic factors of patients and caregivers, disease-related factors, situational and relational factors, environmental factors, and psychological factors. Conclusion: This review provides awareness to HCPs of the important factors associated with CB, when assessing or targeting interventions for caregivers experiencing burden. Full article
(This article belongs to the Special Issue Palliative Care in Kidney Disease)
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Other

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7 pages, 215 KiB  
Study Protocol
Exploration of Caregiver Experiences of Conservatively Managed End-Stage Kidney Disease to Inform Development of a Psychosocial Intervention: The ACORN Study Protocol
by Claire Carswell, Magdi Yaqoob, Patricia Gilbert, Ying Kuan, Gladys Laurente, Karen McGuigan, Clare McKeaveney, Clare McVeigh, Joanne Reid, Soham Rej, Ian Walsh and Helen Noble
Healthcare 2021, 9(12), 1731; https://0-doi-org.brum.beds.ac.uk/10.3390/healthcare9121731 - 14 Dec 2021
Viewed by 2210
Abstract
Background: End-stage kidney disease (ESKD) is an overwhelming illness that impacts not just patients, but also their informal carers. Patients who opt for conservative management rather than dialysis experience difficult symptoms and the psychosocial consequences of their condition. Informal carers of patients who [...] Read more.
Background: End-stage kidney disease (ESKD) is an overwhelming illness that impacts not just patients, but also their informal carers. Patients who opt for conservative management rather than dialysis experience difficult symptoms and the psychosocial consequences of their condition. Informal carers of patients who choose conservative management can also experience high levels of psychosocial burden, yet there is little guidance on how best to support informal carers, and no evidence on psychosocial interventions to address unmet needs. Aim: The aim of this study is to explore the experiences and unmet needs of informal carers of patients with ESKD receiving conservative management in order to inform the development of a psychosocial intervention. Methods: This qualitative study will consist of three stages: (I) semi-structured interviews with informal carers in England and Northern Ireland, (II) focus groups with healthcare professionals and informal carers, and (III) national workshops to refine the components of a psychosocial intervention. Discussion: Informal carers of patients with ESKD who are receiving conservative management experience a high psychosocial burden, but there is limited evidence on how best to provide support, particularly as the patient nears the end of life. To our knowledge this study will be the first to address this gap by exploring the experiences and unmet needs of informal carers, with the aim of informing the development of a psychosocial intervention to support the health and wellbeing of informal carers. Full article
(This article belongs to the Special Issue Palliative Care in Kidney Disease)
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