An exploration of symptom burden and its management, in Saudi Arabian patients receiving haemodialysis, and their carers: A mixed method study protocol

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Abstract

Background
Globally 10% of the population worldwide are affected by chronic kidney disease (CKD), making it one of the most prevalent chronic diseases. Several studies have highlighted that the symptoms of CKD have a significant impact on patients. A number of symptoms, including fatigue and depression, are associated with poor patient health, increased risk of hospitalisation and mortality. Physical and emotional symptoms often remain under-recognised and largely untreated; however, patients often create a variety of self-management strategies to meet the challenges of these symptoms. There is a lack of knowledge regarding symptom burden and the experiences of patients receiving haemodialysis (HD) and their caregivers, particularly in Saudi Arabia, therefore, this study aims to explore symptom burden and its management amongst patients receiving HD in addition to caregiver burden.

Method
A mixed methods, sequential, explanatory design consisting of two phases: phase 1 involves a cross-sectional study design with a planned convenience sample size of 141 patients who will be recruited from King Khaled hospital, Saudi Arabia. Thirty-two physical and psychological symptoms will be measured using the Chronic Kidney Disease-Symptom Burden Index (CKD-SBI). Additionally, 130 caregivers will complete the Arabic version of the Zarit Burden Interview (ZBI-22) to identify the level of burden in the caregivers of patients on maintenance HD. Phase 2 of the study is a qualitative descriptive design involving semi-structural interviews with 15 eligible patients currently receiving HD. The selection of participants for interviews will be based on the patients’ total CKD-SBI scores with five individuals recruited from the lowest, median and highest percentiles. Additionally, 15 caregivers of the patients to be interviewed, will also be recruited and interviewed.

Discussion
This study focuses on a wide number of physical and psychological symptoms experienced by patients receiving HD. It will also focus on the effective management strategies patients employ to help reduce their perceived symptoms. Burden in caregivers of patients receiving HD will also be explored. Furthermore, the association between symptom burden and caregiver burden will be investigated. Findings from this study will provide evidence to help health care providers to develop effective interventions to assess and manage symptoms in patients receiving HD.
LanguageEnglish
Article number250
JournalBMC Nephrology
Volume20
DOIs
Publication statusPublished - 09 Jul 2019

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Caregivers
Renal Dialysis
Chronic Renal Insufficiency
Saudi Arabia
Interviews
Psychology
Self Care
Health Personnel
Sample Size
Fatigue
Hospitalization
Chronic Disease
Cross-Sectional Studies
Maintenance

Cite this

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title = "An exploration of symptom burden and its management, in Saudi Arabian patients receiving haemodialysis, and their carers: A mixed method study protocol",
abstract = "BackgroundGlobally 10{\%} of the population worldwide are affected by chronic kidney disease (CKD), making it one of the most prevalent chronic diseases. Several studies have highlighted that the symptoms of CKD have a significant impact on patients. A number of symptoms, including fatigue and depression, are associated with poor patient health, increased risk of hospitalisation and mortality. Physical and emotional symptoms often remain under-recognised and largely untreated; however, patients often create a variety of self-management strategies to meet the challenges of these symptoms. There is a lack of knowledge regarding symptom burden and the experiences of patients receiving haemodialysis (HD) and their caregivers, particularly in Saudi Arabia, therefore, this study aims to explore symptom burden and its management amongst patients receiving HD in addition to caregiver burden.MethodA mixed methods, sequential, explanatory design consisting of two phases: phase 1 involves a cross-sectional study design with a planned convenience sample size of 141 patients who will be recruited from King Khaled hospital, Saudi Arabia. Thirty-two physical and psychological symptoms will be measured using the Chronic Kidney Disease-Symptom Burden Index (CKD-SBI). Additionally, 130 caregivers will complete the Arabic version of the Zarit Burden Interview (ZBI-22) to identify the level of burden in the caregivers of patients on maintenance HD. Phase 2 of the study is a qualitative descriptive design involving semi-structural interviews with 15 eligible patients currently receiving HD. The selection of participants for interviews will be based on the patients’ total CKD-SBI scores with five individuals recruited from the lowest, median and highest percentiles. Additionally, 15 caregivers of the patients to be interviewed, will also be recruited and interviewed.DiscussionThis study focuses on a wide number of physical and psychological symptoms experienced by patients receiving HD. It will also focus on the effective management strategies patients employ to help reduce their perceived symptoms. Burden in caregivers of patients receiving HD will also be explored. Furthermore, the association between symptom burden and caregiver burden will be investigated. Findings from this study will provide evidence to help health care providers to develop effective interventions to assess and manage symptoms in patients receiving HD.",
author = "Bushra Alshammari and Helen Noble and Helen McAneney and Peter O'Halloran",
year = "2019",
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doi = "10.1186/s12882-019-1424-9",
language = "English",
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journal = "BMC Nephrology",
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TY - JOUR

T1 - An exploration of symptom burden and its management, in Saudi Arabian patients receiving haemodialysis, and their carers: A mixed method study protocol

AU - Alshammari, Bushra

AU - Noble, Helen

AU - McAneney, Helen

AU - O'Halloran, Peter

PY - 2019/7/9

Y1 - 2019/7/9

N2 - BackgroundGlobally 10% of the population worldwide are affected by chronic kidney disease (CKD), making it one of the most prevalent chronic diseases. Several studies have highlighted that the symptoms of CKD have a significant impact on patients. A number of symptoms, including fatigue and depression, are associated with poor patient health, increased risk of hospitalisation and mortality. Physical and emotional symptoms often remain under-recognised and largely untreated; however, patients often create a variety of self-management strategies to meet the challenges of these symptoms. There is a lack of knowledge regarding symptom burden and the experiences of patients receiving haemodialysis (HD) and their caregivers, particularly in Saudi Arabia, therefore, this study aims to explore symptom burden and its management amongst patients receiving HD in addition to caregiver burden.MethodA mixed methods, sequential, explanatory design consisting of two phases: phase 1 involves a cross-sectional study design with a planned convenience sample size of 141 patients who will be recruited from King Khaled hospital, Saudi Arabia. Thirty-two physical and psychological symptoms will be measured using the Chronic Kidney Disease-Symptom Burden Index (CKD-SBI). Additionally, 130 caregivers will complete the Arabic version of the Zarit Burden Interview (ZBI-22) to identify the level of burden in the caregivers of patients on maintenance HD. Phase 2 of the study is a qualitative descriptive design involving semi-structural interviews with 15 eligible patients currently receiving HD. The selection of participants for interviews will be based on the patients’ total CKD-SBI scores with five individuals recruited from the lowest, median and highest percentiles. Additionally, 15 caregivers of the patients to be interviewed, will also be recruited and interviewed.DiscussionThis study focuses on a wide number of physical and psychological symptoms experienced by patients receiving HD. It will also focus on the effective management strategies patients employ to help reduce their perceived symptoms. Burden in caregivers of patients receiving HD will also be explored. Furthermore, the association between symptom burden and caregiver burden will be investigated. Findings from this study will provide evidence to help health care providers to develop effective interventions to assess and manage symptoms in patients receiving HD.

AB - BackgroundGlobally 10% of the population worldwide are affected by chronic kidney disease (CKD), making it one of the most prevalent chronic diseases. Several studies have highlighted that the symptoms of CKD have a significant impact on patients. A number of symptoms, including fatigue and depression, are associated with poor patient health, increased risk of hospitalisation and mortality. Physical and emotional symptoms often remain under-recognised and largely untreated; however, patients often create a variety of self-management strategies to meet the challenges of these symptoms. There is a lack of knowledge regarding symptom burden and the experiences of patients receiving haemodialysis (HD) and their caregivers, particularly in Saudi Arabia, therefore, this study aims to explore symptom burden and its management amongst patients receiving HD in addition to caregiver burden.MethodA mixed methods, sequential, explanatory design consisting of two phases: phase 1 involves a cross-sectional study design with a planned convenience sample size of 141 patients who will be recruited from King Khaled hospital, Saudi Arabia. Thirty-two physical and psychological symptoms will be measured using the Chronic Kidney Disease-Symptom Burden Index (CKD-SBI). Additionally, 130 caregivers will complete the Arabic version of the Zarit Burden Interview (ZBI-22) to identify the level of burden in the caregivers of patients on maintenance HD. Phase 2 of the study is a qualitative descriptive design involving semi-structural interviews with 15 eligible patients currently receiving HD. The selection of participants for interviews will be based on the patients’ total CKD-SBI scores with five individuals recruited from the lowest, median and highest percentiles. Additionally, 15 caregivers of the patients to be interviewed, will also be recruited and interviewed.DiscussionThis study focuses on a wide number of physical and psychological symptoms experienced by patients receiving HD. It will also focus on the effective management strategies patients employ to help reduce their perceived symptoms. Burden in caregivers of patients receiving HD will also be explored. Furthermore, the association between symptom burden and caregiver burden will be investigated. Findings from this study will provide evidence to help health care providers to develop effective interventions to assess and manage symptoms in patients receiving HD.

U2 - 10.1186/s12882-019-1424-9

DO - 10.1186/s12882-019-1424-9

M3 - Article

VL - 20

JO - BMC Nephrology

T2 - BMC Nephrology

JF - BMC Nephrology

SN - 1471-2369

M1 - 250

ER -