scholarly journals Development of a psychosocial intervention to support informal caregivers of people with end-stage kidney disease receiving haemodialysis

2020 ◽  
Vol 21 (1) ◽  
Author(s):  
Michael Matthews ◽  
Joanne Reid ◽  
Clare McKeaveney ◽  
Robert Mullan ◽  
Stephanie Bolton ◽  
...  
Keyword(s):  
Kidney Disease ◽  
Psychosocial Intervention ◽  
Informal Caregivers ◽  
Well Being ◽  
Care Provision ◽  
End Stage Kidney Disease ◽  
Supportive Interventions ◽  
Informal Carers ◽  
End Stage

Abstract Background Patients with end-stage kidney disease, receiving haemodialysis rely increasingly on informal carers to help manage their debilitating chronic disease. Informal carers may experience a negative impact on their quality of life exacting a toll on their physical, social and emotional well-being. Informal carers of patients with end-stage kidney disease receiving haemodialysis have significant unmet needs which may include physical and psychological issues, financial disadvantage and social isolation. Poor experiences of informal carers may also impact the experience of the patients for whom they care. The needs of this group of informal caregivers have been largely neglected, with little emphasis placed on supportive interventions that might assist and support them in their caring role. The aim of this study is therefore to explore the experiences and unmet needs of informal carers of people with end-stage kidney disease receiving haemodialysis and develop a psychosocial intervention to support them in their caring role. Methods This qualitative study will include a systematic review, semi-structured interviews with 30 informal carers and focus groups with renal health care professionals. Perceptions of care provision, caregiving experiences as well as contextual factors impacting the design and delivery of a psychosocial intervention for informal carers of patients with end-stage kidney disease, will be explored and will inform the development of a supportive intervention. Discussion The needs of informal carers of patients with end-stage kidney disease have been neglected with little emphasis placed on supportive interventions that might assist and support this group in their care giving role. This is in contrast to other chronic disease groups such as stroke, cancer and dementia. In these conditions well developed supportive interventions have significantly improved outcomes in regard to informal caregivers’ preparedness, competence, positive emotions and psychological well-being in terms of informal care provision. Support interventions could potentially improve the quality of life of those informal carers who provide care to patients with end-stage kidney disease receiving haemodialysis.

scholarly journals Knowledge Requirements and Unmet Needs of Informal Caregivers of Patients with End-Stage Kidney Disease (ESKD) Receiving Haemodialysis: A Narrative Review

Healthcare ◽  
2021 ◽  
Vol 10 (1) ◽  
pp. 57
Author(s):  
Michael Matthews ◽  
Joanne Reid ◽  
Clare McKeaveney ◽  
Helen Noble
Keyword(s):  
Kidney Disease ◽  
Unmet Needs ◽  
Medication Management ◽  
Informal Caregivers ◽  
Signs And Symptoms ◽  
Well Being ◽  
Narrative Review ◽  
End Stage Kidney Disease ◽  
Knowledge Requirements ◽  
End Stage

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.

scholarly journals Exploration of Caregiver Experiences of Conservatively Managed End-Stage Kidney Disease to Inform Development of a Psychosocial Intervention: The ACORN Study Protocol

Healthcare ◽  
2021 ◽  
Vol 9 (12) ◽  
pp. 1731
Author(s):  
Claire Carswell ◽  
Magdi Yaqoob ◽  
Patricia Gilbert ◽  
Ying Kuan ◽  
Gladys Laurente ◽  
...  
Keyword(s):  
Kidney Disease ◽  
Conservative Management ◽  
Psychosocial Intervention ◽  
Unmet Needs ◽  
Psychosocial Interventions ◽  
Structured Interviews ◽  
End Stage Kidney Disease ◽  
Psychosocial Burden ◽  
Informal Carers ◽  
End Stage

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.

Health-related quality of life and symptoms of conservative care versus dialysis in patients with end-stage kidney disease: a systematic review

2020 ◽  
Author(s):  
Wouter R Verberne ◽  
Iris D van den Wittenboer ◽  
Carlijn G N Voorend ◽  
Alferso C Abrahams ◽  
Marjolijn van Buren ◽  
...  
Keyword(s):  
Kidney Disease ◽  
Older Patients ◽  
Health Related Quality ◽  
End Stage Kidney Disease ◽  
Conservative Care ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
End Stage

Abstract Background Non-dialytic conservative care (CC) has been proposed as a viable alternative to maintenance dialysis for selected older patients to treat end-stage kidney disease (ESKD). This systematic review compares both treatment pathways on health-related quality of life (HRQoL) and symptoms, which are major outcomes for patients and clinicians when deciding on preferred treatment. Methods We searched PubMed, Embase, Cochrane Library, Cumulative Index to Nursing and Allied Health Literature (CINAHL) Plus and PsycINFO from inception to 1 October 2019 for studies comparing patient-reported HRQoL outcomes or symptoms between patients who chose either CC or dialysis for ESKD. Results Eleven observational cohort studies were identified comprising 1718 patients overall. There were no randomized controlled trials. Studies were susceptible to selection bias and confounding. In most studies, patients who chose CC were older and had more comorbidities and worse functional status than patients who chose dialysis. Results were broadly consistent across studies, despite considerable clinical and methodological heterogeneity. Patient-reported physical health outcomes and symptoms appeared to be worse in patients who chose CC compared with patients who chose dialysis but had not yet started, but similar compared with patients on dialysis. Mental health outcomes were similar between patients who chose CC or dialysis, including before and after dialysis start. In patients who chose dialysis, the burden of kidney disease and impact on daily life increased after dialysis start. Conclusions The available data, while heterogeneous, suggest that in selected older patients, CC has the potential to achieve similar HRQoL and symptoms compared with a dialysis pathway. High-quality prospective studies are needed to confirm these provisional findings.

scholarly journals Quality Of Life And Health Related Quality Of Life Among End-Stage Kidney Disease Patients: Methodology Assessment

2020 ◽  
Vol 6 (3) ◽  
pp. 1-11
Author(s):  
Issa Al Salmi ◽  
Keyword(s):  
Quality Of Life ◽  
Kidney Disease ◽  
Health Related Quality ◽  
End Stage Kidney Disease ◽  
Related Quality ◽  
Health Related ◽  
End Stage ◽  
The Impact

End-Stage Kidney Disease (ESKD) is a serious and irreversible condition. Understanding the impact of ESKD and its treatment on an individual's Quality of Life (QoL) is important.

scholarly journals End stage kidney disease in the elderly: Hope for the best

2021 ◽  
Vol 34 (4) ◽  
Author(s):  
Patrícia Valério ◽  
◽  
Ana Farinha ◽  
Keyword(s):  
Kidney Disease ◽  
The Elderly ◽  
End Stage Kidney Disease ◽  
Disease Trajectory ◽  
Technological Advances ◽  
Care Of Elderly ◽  
End Stage ◽  
Symptomatic Control ◽  
Taking Care

With an increased number of aged chronic kidney disease (CKD) patients, along with medical and technological advances, the options to approach end‑stage kidney disease (ESKD) have multiplied. Nephrologists should be aware that taking care of elderly patients is different from taking care of younger ones. The spectrum of choices is as wide as the functional status of these patients. For fit ones, the main goal should be to restore function as much as possible and to rehabilitate. On the other hand, for frail patients, the expectations should be realistic in terms of survival, disease trajectory and symptomatic control, because while kidney replacement therapies can prolong life, they do not cure. The issue is complex due to its multidimensional perspective, so decisions must take into account the patient’s options, respecting his/her autonomy, dignity and quality of life. This text aims to review the particularities of geriatric CKD patients’ assessment towards options to care for ESKD, in a specific population which is growing in our practice.

Effect of a Home Exercise Program Based on Tai Chi in Patients with End-Stage Renal Disease

2003 ◽  
Vol 23 (2_suppl) ◽  
pp. 99-103 ◽  
Author(s):  
Kin-wa Ling ◽  
Flora S.Y. Wong ◽  
Wing-ki Chan ◽  
Shuk-yin Chan ◽  
Eric P. Y. Chan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Kidney Disease ◽  
End Stage Renal Disease ◽  
Exercise Program ◽  
Well Being ◽  
Home Based ◽  
Stage Renal Disease ◽  
End Stage ◽  
Minute Walk

Objective Previous reports have documented the benefits of exercise on the well-being of renal patients. However, fewer than 50% of our end-stage renal disease (ESRD) patients engage in regular exercise. To promote exercise, we implemented a home-based exercise program. The aim of the program was to reduce barriers to exercise by helping patients to exercise at their convenience and without the need to travel. The effect of the program was evaluated 3 months after implementation. Patients and Methods Each study participant received a videotape that demonstrated 30 minutes of low-capacity aerobic exercise. Participants were advised to exercise by following the demonstration on the videotape. Encouragement was given over the telephone. Self-reports on practice were recorded in a log book that was also provided. The effect of the program was evaluated by comparing outcomes data before, and 3 months after, implementation of the program. Outcomes assessment included functional mobility (timed “Up & Go” test), muscle flexibility (“Sit & Reach” test), physical capacity (“Six-Minute Walk”), and quality of life [Kidney Disease Quality of Life Short Form (KDQOL-SF)]. Results The program began with 72 participants. Over time, 39 dropped out. The remaining 33 participants included 11 men and 22 women with a mean age of 52.8 ± 9.8 years. They exercised 3 – 7 times weekly. Significant improvements were observed in the timed “Up & Go” ( p = 0.003) and “Sit & Reach” ( p < 0.001) tests. Improvements in the “Six-Minute Walk” ( p = 0.130) and in KDQOL-SF scores for emotional well-being ( p = 0.456), pain ( p = 0.100), burden of kidney disease ( p = 0.061), and general health ( p = 0.085) were statistically insignificant. Conclusions Physically, patients with ESRD benefit from home-based low-capacity aerobic exercise. A home-based program provides an alternative to outdoor and group exercise. In view of a high drop-out rate, intensive promotion and encouragement should be considered to achieve a positive outcome.

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