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.

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.

End-stage kidney disease on dialysis: an observational study of modality change from maximum conservative management

2021 ◽  
pp. bmjspcare-2020-002839
Author(s):  
Alvin Shrestha ◽  
Aine Burns
Keyword(s):  
Kidney Disease ◽  
Conservative Management ◽  
Fluid Overload ◽  
Common Symptom ◽  
End Stage Kidney Disease ◽  
Kaplan Meier ◽  
Comorbidity Index ◽  
Poor Outcomes ◽  
One Year ◽  
End Stage

ObjectivesA rising burden from end-stage kidney disease with poor outcomes in the frail, elderly population has seen the emergence of a non-dialytic option, also known as maximum conservative management (MCM). Despite an established MCM programme in our institution, it was anecdotally observed that some MCM patients would end up being dialysed short and long term. We explored treatment modality changes from MCM to renal replacement therapy (RRT), the reasons surrounding the change, and aimed to quantify survival in this cohort of patients.Methods44 patients were identified as being MCM, who changed modalities to RRT, from 2000 to 2015, using the Royal Free Hospital Renal Unit’s database. Electronic health records were reviewed retrospectively. Associations with 12-month mortality were explored and Kaplan-Meier method used to predict survival.ResultsThe most common modality change was to haemodialysis (81%), with one transplantation, and rest peritoneal dialysis. 28 patients commenced dialysis as unplanned starters, with the most common symptom being fluid overload. One-year survival was associated with increased age (75 vs 83, p=0.004, for alive vs dead) and had lower mean Charlson Comorbidity Index (6.2 vs 7.3, p=0.021). Median survival of 65 months following RRT initiation was predicted by the Kaplan-Meier method.ConclusionsPatients changed modalities from MCM to RRT due to symptoms, the most common being fluid overload. Despite an unplanned change to RRT, survival appears to be significant at 65 months in this study, indicating clinicians are continuing to offer RRT to patients appropriately.

Losing Weight; The Experience of Patients With End Stage Kidney Disease: A Qualitative Study

2021 ◽  
Author(s):  
Johanne Freeman ◽  
Hanne Konradsen ◽  
Kristine Lindhard ◽  
Ditte Hansen
Keyword(s):  
Weight Loss ◽  
Kidney Disease ◽  
Kidney Transplant ◽  
Graft Loss ◽  
Phenomenological Approach ◽  
Structured Interviews ◽  
End Stage Kidney Disease ◽  
Factors Affecting ◽  
Sustainable Diet ◽  
End Stage

Abstract Background: Patients with end-stage kidney disease need renal replacement therapy to ensure survival. Kidney transplant is superior to dialysis due to better survival. Patients with obesity cannot be approved for kidney transplant until they lose sufficient weight. Obesity may complicate the surgical procedure, and the risk of graft loss increases with increasing body mass index. Attaining appropriate weight loss is often a hindrance for transplantation for the patient with obesity, and further knowledge of minds, thoughts and attitudes are necessary to better help these patients to lose weight.Methods: Semi-structured interviews with patients who needed to lose weight to be approved to the kidney transplant list at a Danish hospital, were recorded and transcribed. From patients’ responses, we identified descriptive categories using a phenomenological approach. Factors affecting outcomes were derived reflexively from these categories.Results: Ten interviews were analyzed. Experiences of obesity and weight-loss attempts were described across 4 categories; (i) Restrictions and exhaustion, (ii) Hope and hopelessness, (iii) Support and self-discipline, and (iv) Motivation based on severity.Conclusions: Patients with obesity that hinders kidney transplantation need additional help with the dietary restrictions that follow a kidney disease. They need bridging between a kidney-friendly diet and a sustainable diet that will ensure weight-loss. These patients also express how they do not want to be alone in their weight-loss battle. They are looking for help, camaraderie and support to obtain weight-loss.

scholarly journals Non-medical barriers reported by nephrologists when providing renal replacement therapy or comprehensive conservative management to end-stage kidney disease patients: a systematic review

2020 ◽  
Author(s):  
Rianne W de Jong ◽  
Vianda S Stel ◽  
James G Heaf ◽  
Mark Murphy ◽  
Ziad A Massy ◽  
...  
Keyword(s):  
Systematic Review ◽  
Renal Replacement Therapy ◽  
Kidney Disease ◽  
Focus Groups ◽  
Replacement Therapy ◽  
Conservative Management ◽  
End Stage Kidney Disease ◽  
Cross Sectional ◽  
Financial Barriers ◽  
End Stage

Abstract Background Large international differences exist in access to renal replacement therapy (RRT) modalities and comprehensive conservative management (CCM) for patients with end-stage kidney disease (ESKD), suggesting that some patients are not receiving the most appropriate treatment. Previous studies mainly focused on barriers reported by patients or medical barriers (e.g. comorbidities) reported by nephrologists. An overview of the non-medical barriers reported by nephrologists when providing the most appropriate form of RRT (other than conventional in-centre haemodialysis) or CCM is lacking. Methods We searched in EMBASE and PubMed for original articles with a cross-sectional design (surveys, interviews or focus groups) published between January 2010 and September 2018. We included studies in which nephrologists reported barriers when providing RRT or CCM to adult patients with ESKD. We used the barriers and facilitators survey by Peters et al. [Ruimte Voor Verandering? Knelpunten en Mogelijkheden Voor Verbeteringen in de Patiëntenzorg. Nijmegen: Afdeling Kwaliteit van zorg (WOK), 2003] as preliminary framework to create our own model and performed meta-ethnographic analysis of non-medical barriers in text, tables and figures. Results Of the 5973 articles screened, 16 articles were included using surveys (n = 10), interviews (n = 5) and focus groups (n = 1). We categorized the barriers into three levels: patient level (e.g. attitude, role perception, motivation, knowledge and socio-cultural background), level of the healthcare professional (e.g. fears and concerns, working style, communication skills) and level of the healthcare system (e.g. financial barriers, supportive staff and practice organization). Conclusions Our systematic review has identified a number of modifiable, non-medical barriers that could be targeted by, for example, education and optimizing financing structure to improve access to RRT modalities and CCM.

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 Perceptions of patients with end-stage kidney disease (ESKD) and their informal caregivers on palliative care as a treatment option: a qualitative study

2020 ◽  
Author(s):  
Catherine Sarfo-Walters ◽  
Edward Appiah Boateng
Keyword(s):  
Palliative Care ◽  
Kidney Disease ◽  
Treatment Option ◽  
Phenomenological Study ◽  
Informal Caregivers ◽  
Structured Interviews ◽  
End Stage Kidney Disease ◽  
Middle Income ◽  
Depth Analysis ◽  
End Stage

Abstract Background: Palliative care is increasingly becoming an accepted treatment choice for many individuals diagnosed with end-stage kidney disease (ESKD). Yet, its utilisation is non-existent in many lower- and middle-income countries (LMICs). This study explored the perceptions of individuals with ESKD and their informal caregivers on palliative care as a treatment option for the disease in Ghana.Methods: This was a phenomenological study, with an in-depth analysis of data collected from nine individuals with ESKD and six informal caregivers through individual, face-to-face semi-structured interviews. The study was conducted in two renal centres within the Kumasi metropolis, Ghana among individuals with ESKD seeking care from both renal centres and their informal caregivers.Results: Three main themes were derived from this study – motivation for initiating haemodialysis, facing realities of haemodialysis, and considering palliative care. Participants felt that haemodialysis (HD) was not meeting their health expectations and demonstrated a general willingness to utilise palliative care if it would reduce suffering. Conclusions: This study has shown that individuals with ESKD or their informal caregivers would consider palliative care services, if available. It paves the way for discussions about Palliative care for ESKD to begin across renal centres within Ghana and other similar settings. Exploring perspectives of clinicians in such settings could inform strategies on how to implement Palliative care for ESKD management in such settings.

scholarly journals Perceptions of patients with end-stage kidney disease (ESKD) and their informal caregivers on palliative care as a treatment option: a qualitative study

2020 ◽  
Author(s):  
Catherine Sarfo-Walters ◽  
Edward Appiah Boateng
Keyword(s):  
Palliative Care ◽  
Kidney Disease ◽  
Treatment Option ◽  
Phenomenological Study ◽  
Informal Caregivers ◽  
Structured Interviews ◽  
End Stage Kidney Disease ◽  
Middle Income ◽  
Depth Analysis ◽  
End Stage

Abstract Background Palliative care is increasingly becoming an accepted treatment choice for many individuals diagnosed with end-stage kidney disease (ESKD). Yet, its utilisation is non-existent in many lower- and middle-income countries (LMICs). This study explored the perceptions of individuals with ESKD and their informal caregivers on palliative care as a treatment option for the disease in Ghana. Methods This was a phenomenological study, with an in-depth analysis of data collected from nine individuals with ESKD and six informal caregivers through individual, face-to-face semi-structured interviews. The study was conducted in two renal centres within the Kumasi metropolis, Ghana among individuals with ESKD seeking care from both renal centres and their informal caregivers. Results Three main themes were derived from this study – motivation for initiating haemodialysis, facing realities of haemodialysis, and considering palliative care. Participants felt that haemodialysis (HD) was not meeting their health expectations and demonstrated a general willingness to utilise palliative care if it would reduce suffering. Conclusions This study has shown that individuals with ESKD or their informal caregivers would consider palliative care services, if available. It paves the way for discussions about Palliative care for ESKD to begin across renal centres within Ghana and other similar settings. Exploring perspectives of clinicians in such settings could inform strategies on how to implement Palliative care for ESKD management in such settings.

scholarly journals Perceptions of patients with end-stage kidney disease (ESKD) and their informal caregivers on palliative care as a treatment option: a qualitative study

2020 ◽  
Author(s):  
Catherine Sarfo-Walters ◽  
Edward Appiah Boateng
Keyword(s):  
Palliative Care ◽  
Kidney Disease ◽  
Treatment Option ◽  
Phenomenological Study ◽  
Informal Caregivers ◽  
Structured Interviews ◽  
End Stage Kidney Disease ◽  
Middle Income ◽  
Depth Analysis ◽  
End Stage

Abstract Background: Palliative care is increasingly becoming an accepted treatment choice for many individuals diagnosed with end-stage kidney disease (ESKD). Yet, its utilisation is non-existent in many lower- and middle-income countries (LMICs). This study explored the perceptions of individuals with ESKD and their informal caregivers on palliative care as a treatment option for the disease in Ghana.Methods: This was a phenomenological study, with an in-depth analysis of data collected from nine individuals with ESKD and six informal caregivers through individual, face-to-face semi-structured interviews. The study was conducted in two renal centres within the Kumasi metropolis, Ghana among individuals with ESKD seeking care from both renal centres and their informal caregivers.Results: Three main themes were derived from this study – motivation for initiating haemodialysis, facing realities of haemodialysis, and considering palliative care. Participants felt that haemodialysis (HD) was not meeting their health expectations and demonstrated a general willingness to utilise palliative care if it would reduce suffering. Conclusions: This study has shown that individuals with ESKD or their informal caregivers would consider palliative care services, if available. It paves the way for discussions about palliative care for ESKD to begin across renal centres within Ghana and other similar settings. Exploring perspectives of clinicians in such settings could inform strategies on how to implement palliative care for ESKD management in such settings.

Conservative management of patients with end-stage kidney disease

2019 ◽  
Vol 35 (6) ◽  
pp. 43-50
Author(s):  
Claire Carswell ◽  
Helen Noble ◽  
Joanne Reid ◽  
Clare McKeaveney
Keyword(s):  
Kidney Disease ◽  
Conservative Management ◽  
End Stage Kidney Disease ◽  
End Stage
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