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 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 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.

scholarly journals Factors Associated with Burden in Caregivers of Patients with End-Stage Kidney Disease (A Systematic Review)

Healthcare ◽  
2021 ◽  
Vol 9 (9) ◽  
pp. 1212
Author(s):  
Bushra Alshammari ◽  
Helen Noble ◽  
Helen McAneney ◽  
Farhan Alshammari ◽  
Peter O’Halloran
Keyword(s):  
Kidney Disease ◽  
Health Care Providers ◽  
Well Being ◽  
Extensive Literature ◽  
Care Providers ◽  
End Stage Kidney Disease ◽  
Related Factors ◽  
Factors Associated ◽  
Relational Factors ◽  
End Stage

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.

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 Pica behavior in patients with chronic end-stage kidney disease: Behavioral, psychosocial and clinical variables associated / Conducta de pica en pacientes con enfermedad renal crónica terminal: Variables conductuales, psicosociales y clínicas asociadas

2021 ◽  
Vol 10 (2) ◽  
pp. 207-217
Author(s):  
Isaías Vicente Lugo González ◽  
Cintia Tamara Sánchez Cervantes
Keyword(s):  
Social Support ◽  
Functional Analysis ◽  
Kidney Disease ◽  
Well Being ◽  
End Stage Kidney Disease ◽  
Men And Women ◽  
Clinical Variables ◽  
Apoyo Social ◽  
Study Support ◽  
End Stage

 AbstractPica behavior (PB) is defined as the persistent intake of non-nutritive substances, which has been identified in various chronic diseases. The aim of this study was to estimate the presence of PB among patients with chronic end-stage kidney disease (CESKD), to identify the main substances ingested, as well as associated behavioral, psychosocial and clinical variables. A total of 100 adult patients (Mage = 43.9, SD = 15.8), men and women, under hemodialysis, completed an evaluation that included questions on the functional analysis of behavior. Of the total participants, 58% presented PB. The main food substances ingested were: ice (37%), grains of sugar or salt (11%), and wheat flour (10%); of the non-food substances highlighted: stones or partition (7%), bicarbonate or magnesia (6%), and mud (5%). The main situations associated with PB were inactivity (27%) and anxiety (10%); as consequences highlighted the feeling of well-being (36%) and decreased anxiety (10%). Patients with PB were characterized by their lower age and perception of social support, as well as greater anxiety. The results of this study support the development of specific forms of intervention for the management of PB in patients with CESKD.ResumenLa conducta de pica (CP) se define como la ingesta persistente de sustancias no nutritivas, la cual se ha identificado en presencia de diversos padecimientos crónicos. El objetivo de este trabajo fue estimar la presencia de la CP entre pacientes con enfermedad renal crónica terminal (ERCT), identificar las principales sustancias ingeridas, así como variables conductuales, psicosociales y clínicas asociadas. Participaron 100 pacientes adultos (Medad = 43.9, DE = 15.8), hombres y mujeres, bajo hemodiálisis, quienes completaron una batería de evaluación que incluyó preguntas dirigidas al análisis funcional de la conducta. De los participantes, 58% presentó CP. Las principales sustancias alimenticias ingeridas fueron: hielo (37%), granos de azúcar o sal (11%), y harina (10%); de entre las no alimenticias destacaron: piedras o tabique (7%), bicarbonato o magnesia (6%) y barro (5%). Las principales situaciones asociadas a la CP fueron la inactividad (27%) y la ansiedad (10%); en tanto consecuencias destacaron la sensación de bienestar (36%) y disminución de ansiedad (10%). Los pacientes con CP se caracterizaron por presentar menor edad y percepción de apoyo social, así como mayor ansiedad. Los resultados de este estudio abonan al desarrollo de formas de intervención específicas para el manejo de la CP en pacientes con ERCT.

scholarly journals Using patient-reported outcome measures during the management of patients with end-stage kidney disease requiring treatment with haemodialysis (PROM-HD): a qualitative study

BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e052629
Author(s):  
Nicola Elzabeth Anderson ◽  
Christel McMullan ◽  
Melanie Calvert ◽  
Mary Dutton ◽  
Paul Cockwell ◽  
...  
Keyword(s):  
Kidney Disease ◽  
Qualitative Study ◽  
Well Being ◽  
End Stage Kidney Disease ◽  
Term Survival ◽  
Effective Implementation ◽  
Patient Reported ◽  
Views And Perceptions ◽  
End Stage ◽  
The Impact

ObjectivesPatients undergoing haemodialysis report elevated symptoms and reduced health-related quality of life, and often prioritise improvements in psychosocial well-being over long-term survival. Systematic collection and use of patient-reported outcomes (PROs) may help support tailored healthcare and improve outcomes. This study investigates the methodological basis for routine PRO assessment, particularly using electronic formats (ePROs), to maximise the potential of PRO use, through exploration of the experiences, views and perceptions of patients and healthcare professionals (HCPs) on implementation and use of PROs in haemodialysis settings.Study designQualitative study.Setting and participantsSemistructured interviews with 22 patients undergoing haemodialysis, and 17 HCPs in the UK.Analytical approachTranscripts were analysed deductively using the Consolidated Framework for Implementation Research (CFIR) and inductively using thematic analysis.ResultsFor effective implementation, the potential value of PROs needs to be demonstrated empirically to stakeholders. Any intervention must remain flexible enough for individual and aggregate use, measuring outcomes that matter to patients and clinicians, while maintaining operational simplicity. Any implementation must sit within a wider framework of education and support for both patients and clinicians who demonstrate varying previous experience of using PROs and often confuse related concepts. Implementation plans must recognise the multidimensionality of end-stage kidney disease and treatment by haemodialysis, while acknowledging the associated challenges of delivering care in a highly specialised environment. To support implementation, careful consideration needs to be given to barriers and facilitators including effective leadership, the role of champions, effective launch and ongoing evaluation.ConclusionsUsing the CFIR to explore the experiences, views and perceptions of key stakeholders, this study identified key factors at organisational and individual levels which could assist effective implementation of ePROs in haemodialysis settings. Further research will be required to evaluate subsequent ePRO interventions to demonstrate the impact and benefit to the dialysis community.

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