EXPERIENCING “THE GIFT OF LIFE”: HOLISTIC CONTRIBUTION OF HEALTH EDUCATION AND COUNSELLING IN END-STAGE RENAL DISEASE

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EXPERIENCING “THE GIFT OF LIFE”: HOLISTIC CONTRIBUTION OF HEALTH EDUCATION AND COUNSELLING IN END-STAGE RENAL DISEASE

BY

CHONG KWAI FONG

A thesis submitted in fulfilment of the requirement for the degree of Doctor of Philosophy

Institute of Education

International Islamic University Malaysia

MAY 2014

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ABSTRACT

This qualitative study explores the contribution of health education and counselling toward rehabilitation and quality of life among end-stage renal disease (ESRD) patients who have undergone living related kidney transplantation in Malaysia.

Biopsychosocial (BPS) model of health is used as theoretical framework to clarify the variables of this study, and a road-map for data analysis. To give direction of the study, conceptual framework is developed based on the understanding of the relationship and problems of ESRD and its treatment. A total of thirty-two semi- structured interview questions reflecting the five research questions were formulated to use in face-to-face in-depth interview among the three kidney transplant recipients after informed consents were obtained. The three respective kidney donors consented to be interviewed separately for data triangulation. Hospital checklists on health education and counselling to be given by the health care professionals to kidney recipient and donor were collected for partial data verification. Content analysis was used as analytic technique to process and interpret data for the three study participants.

Findings in this study yielded six themes that contribute to the rehabilitation and quality of life among kidney transplant recipients. They are family and societal support, health education and counselling, peer group information, socio-cultural values, spiritual belief, and freedom of life. Of the six themes: freedom of life, spiritual belief, and peer group information were found to be the new themes from this study. This study supported the adoption of BPS model of health in the holistic care of ESRD patients keeping in mind of the additional consideration of the spiritual dimension. As the findings revealed in this study, the initial conceptual framework was also revised.

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APPROVAL PAGE

The thesis of Chong Kwai Fong has been approved by the following:

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Nik Ahmad Hisham Ismail Supervisor

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Nik Suryani Abdul Rahman Internal Examiner

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Rohani Nasir External Examiner

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Abdul Kadir Husssain Solihu Chairman

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DECLARATION

I hereby declare that this thesis is the result of my own investigations, except where otherwise stated. I also declare that it has not been previously or concurrently submitted as a whole for any other degrees at IIUM or other institutions.

Chong Kwai Fong

Signature ... Date: ...

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INTERNATIONAL ISLAMIC UNIVERSITY MALAYSIA

DECLARATION OF COPYRIGHT AND AFFIRMATION OF FAIR USE OF UNPUBLISHED RESEARCH

EXPERIENCING “THE GIFT OF LIFE”: HOLISTIC CONTRIBUTION OF HEALTH EDUCATION AND COUNSELLING IN END-STAGE RENAL DISEASE

I hereby affirm that The International Islamic University Malaysia (IIUM) holds all rights in the copyright of this Work and henceforth any reproduction or use in any form or by means whatsoever is prohibited without the written consent of IIUM. No part of this unpublished research may be reproduced, stored in a retrieval system, or transmitted, in any form or by means, electronic, mechanical, photocopying, recording or otherwise without prior written permission of the copyright holder.

Affirmed by Chong Kwai Fong.

... ...

Signature Date

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ACKNOWLEDGEMENTS

First and foremost, I would like to thank my major supervisor Prof. Dr. Nik Ahmad Hisham Ismail who frequently inspires and encourages me to pursue my study. I am indeed grateful for the faith and trust he has for me to take up this course at my age. I also wish to thank all the lecturers at IIUM who has in one way or another guided me as a novice student embarking on qualitative research. I am most grateful to my beloved husband and children for their continued support and patience which make it possible for me to carry on with my work and study besides being a wife, mother and grandmother. Special thanks go to my two son-in-laws who helped me a great deal in the technical aspects of my thesis. I thank God for sending me a wonderful and caring domestic helper who makes extra effort to take care of me besides manning the house chores during my study year. I take this opportunity to express my heartfelt gratitude towards my colleagues and friends for being so understanding and helpful while I was competing with my time line. Thanks should also be given to all those health care professionals especially nurses who are dedicated to care for the chronically ill patients. I am very much indebted to all my study participants for their willingness to share their life stories with me. Perhaps, the best way to express my thanks to them is to make their stories known to others by publication. My ultimate praise and worship go to the almighty and ever merciful God; through Him all things are possible.

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LIST OF TABLES

Table No. Page No.

‎3.1 Research Questions, Objective, Type and Source of Data 66

‎3.2 Interview Schedule for Participants 79

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3.3 Sample to illustrate the Coding Protocol of Interviews for the three

participants 89

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LIST OF FIGURES

Figure No. Page No.

‎2.1 Biopsychosocial Model of Health Status (Engel, 1977) 52

‎2.2 Conceptual Framework 55

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3.1 Research Design 60

‎3.2 Data Triangulation for “Experiencing the Gift of Life: Holistic

Contribution of Health Education and Counselling” 64

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3.3 The Inter-Rater Reliability Formula 93

‎4.1 Summary of Findings and Emerging Themes for Research Question 1:

Perception and reactions of ESRD 109

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4.2 Summary of Findings and Emerging Themes for Research Question 2:

Decision-making on treatment options 114

Physiological and psychosocial stressors 126

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4.4 Summary of Findings and Emerging Themes for Research Question 4:

Effects of health education and counselling 134

Perception of health care professional’s attitude toward the delivery of

health education and counselling 137

‎5.1 Initial and Revised Conceptual Framework 170

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CHAPTER ONE INTRODUCTION

The advancement of medical science and technology has improved the general health and increased the life expectancy of human beings. Better medical treatment and efficient emergency procedures has helped people to survive through their initial acute illnesses and trauma such as heart attack and accident; leaving individuals who are affected continue to live with chronic conditions such as stroke and disability from which they will never fully recover. Medical conditions particularly diabetes mellitus and kidney diseases were once without treatment but now treatable though not curable. Chronic disease is increasing and epidemic among the developed countries particularly in the Western world. Epidemiologically, the trend of disease has shifted from acute to chronic over the last century. This global phenomenon clearly indicates that there is a growing need in the care of a larger and elderly population living with chronic illness. The scenario in Malaysia is no better, as chronic disease is becoming more apparent and prevalent over the last two decades.

THE IMPACTS OF CHRONIC DISEASES

Chronic diseases are defined as those illnesses that are preventable and that pose a significant burden in mortality, morbidity and cost. Statistics on chronic diseases are alarming: Ninety million Americans have at least one or more of these diseases.

Chronic diseases contribute to 70% of all deaths. It is reported that 1.7 million Americans died from chronic diseases each year and are responsible for 7 of every 10 deaths in the United States. Chronic diseases have great impact and burden on the

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national health economics worldwide. The total medical care costs for individuals with chronic diseases is more than $400 billion annually, which is more than 60% of the total medical care expenditures (National Centre for Chronic Disease Prevention and Health Promotion, 2000). According to McGinnis, Williams-Russo, and Knickman (2002, as cited in Sperry, 2006) this cost has not included personal, employment and financial loss, associated with self-management and/or disabilities of the disease. Neither has it accounted for the psychological and social burden imposed by the 90 million Americans suffering with one or more chronic disease on the individual, family, and society at large. As the average human life span has extended into the 80s, it is inevitably that more and more people will suffer from chronic illness.

THE PREDICAMENT OF CHRONIC KIDNEY DISEASE

Chronic disease is regarded as a primer which contributes to majority of death, illness and disability among Americans. Chronic diseases such as cardiovascular disease, cancer and diabetes are currently the most prevalent and costly health problems leading to prolonged course of illness and disability which may ultimately result in extended pain, suffering and poor quality of life among millions of Americans (Sperry, 2006). Among the chronic disease, the prevalence of diabetes is high. It is estimated that 75% of the adults have diabetes at the age of 65 and above and 1,700 new diabetics are diagnosed each day (National Centre for Chronic Disease Prevention and health Promotion, 2000). With the increasing population of people suffering from chronic medical conditions particularly diabetes and hypertension, the incidence of chronic kidney disease (CKD) has increased rapidly over the last decade.

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3 BACKGROUND OF THE STUDY

In Malaysia, public awareness of CKD remains lacking and the diagnosis of end-stage renal disease (ESRD) is quite often detected or referred late due to various reasons.

Type II diabetes mellitus is currently the leading cause of ESRD in Malaysia accounted for more than 50% of all new patients accepted for renal replacement therapy (RRT, referring to dialysis or kidney transplantation) since 2003. The incidence of ESRD patients on RRT as of 31^st December 2010 was reported as 160 per million per population and a total number of patients living with dialysis or kidney transplant stands at 24,773 (18^th Report of The Malaysian Dialysis & Transplant Registry, 2010). Like other parts of the world, the establishment of RRT in Malaysia has generally improved the prognosis and general outlook of ESRD patients. Although the modalities of treatment carry definite risks and restrictions, successful renal transplantation which is also known as “the gift of life” remains universally recognized as the most ideal therapy in offering patients a better quality of life.

KIDNEY TRANSPLANTATION IN MALAYSIA

The publication “Nephrology in Malaysia: celebrating 50 years of progress” by the Malaysian Society of Nephrology in December, 2009 stated that the first living related kidney transplant in Malaysia was successfully performed in December, 1975 between the two siblings in the General Hospital Kuala Lumpur. The first living related kidney transplant recipient had lived a productive and fulfilling life with a functioning graft for over 25 years. The unconditional love and the bravery sacrifice made by the younger brother to his elder brother and their confidence towards the clinicians in carrying out the transplant surgery have progressively led to the establishment of living related kidney transplant programme in this country. Renal transplantation in

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Malaysia is largely relying on live kidney donors from the immediate family of the patients as the local cadaveric programme remains slow despite statement of support for organ donation from various mainstream religions and regular organ donation campaigns to increase greater awareness among the public (Ahmad Ghazali, Lei &

Wong, Nephrology in Malaysia, 2009, pp. 95-105).

The early success and the benefits of kidney transplantation do not significantly improve the Malaysian Renal Transplantation Programme to the desired level. Statistics show that the actual number of transplants performed locally remain low both for the living donor and more so for the cadaver donor. The state of affairs continues despite of the lack of universal access to maintenance dialysis and full subsidies for the cost of transplant surgery and immunosuppressive drugs provided by the government. In the late 1980s, many ESRD people in Malaysia who did not have suitable or willing donor have gone overseas for commercial living non-related kidney transplantation in India. As the Indian government imposed a law prohibiting commercial kidney transplantation in mid 1990s, ESRD people resort to commercial cadaveric kidney transplants mainly performed in China (Ahmad Ghazali, Lei &

Wong, Nephrology in Malaysia, 2009, pp. 95-105).

According to the 18^th report of the Malaysian Dialysis and Transplant Registry (MDTR, 2010), the overall number of new kidney transplant recipients has been decreasing since 2005. The probable cause to the downward trend is likely due to the increasing proscription against commercial transplantation. As of 31^st December 2010, the number of kidney transplant recipients with functioning kidneys was only 1,841 of which more than 50% was contributed by the commercial donor transplantation done abroad comparing to 22,932 dialyzing patients. The characteristics of renal transplant recipients over the last 10 years are predominantly male between 58% and 70% in

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their productive years with the mean age at transplant of 37 to 42 years. Diabetes Mellitus is the third primary cause of ESRD constituting 18% of renal transplant recipients.

HEALTH EDUCATION AND COUNSELLING: CORE ACTIVITIES OF REHABILITATION

Health education or patient education plays a particularly important role in the rehabilitation of chronic illness. The process of patient education begins with rehabilitation at the moment when disease is diagnosed. From the onset of the disease, patients and their families need to be educated enabling them to arrive at an early understanding of the disease, treatment and its effects on their lives. However, people with chronic illness often require more than just acquiring new knowledge and skills to cope with their daily problems. In addition, they need guidance and encouragement from the allied health professionals to make their learning meaningful and most importantly useful in enabling them to live a normal life as far as possible (Viggiani, Chapter 9, in Bastable, 2006).

The role of counselling is essential in the rehabilitation of chronic illness.

Sperry (2006) articulates that treatment adherence and life-style changes is not as simple as to just provide the relevant information and assume that patients will comply with the health prescriptions as recommended by the health care providers.

According to him, helping individuals to achieve health behaviour change, health care professionals require a good understanding of the barriers to change and the requisite counselling techniques and psychotherapy interventions to accomplish such change.

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REHABILITATION IN KIDNEY TRANSPLANT RECIPIENTS

In ESRD, health education and counselling play an important role in facilitating patients and their families to actively involve and participate in the process of decision making, disease prevention, treatment and rehabilitation. Brown (1992) stresses the importance of health education and counselling by nursing staff as part of the inpatient care is important in the preparation of kidney transplant recipients for the changes that will occur after their discharge from the hospital. In addition to providing important health education on the physical aspect such as adherence to immunosuppressive therapy, signs and symptoms of rejection, avoidance of infection, counselling on pertinent issues such as the possibility of graft failure and its management, dietary and life-style adjustments, employment opportunity, role and social readjustments is essential in helping and supporting kidney transplant patients to achieve optimal rehabilitation. As such, rehabilitation programme of kidney transplant patients must include measures designed to achieve successful rehabilitation and provision for adequate health counselling.

STATEMENT OF THE PROBLEM

The kidney transplant rehabilitation programme in Malaysia is managed by a multidisciplinary team comprising physicians, nurses, dieticians, pharmacists and social workers. The goal of the rehabilitation programme for kidney transplant patients is to provide a comprehensive programme destined to restore and to promote active lifestyle physically and psychosocially following renal transplantation.

Although health education and counselling have always been an integral part of the kidney transplant rehabilitation programme, study pertaining to this nursing aspect remains relatively limited. Most of the studies in ESRD focus a great deal on clinical

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dialysis which represents the biggest population locally and worldwide. Twelve published research papers reviewed by the researcher concerning the issues of non- compliance, stressors and the need for health education and counselling among dialysis and kidney transplant patients were primarily conducted using quantitative approach. A summary of these articles that provides evidence of validity of end-stage renal disease modality is shown in Appendix I.

The greatest benefit in kidney transplantation as mentioned earlier is for patient to enjoy a better quality of life which can be significantly influenced by the degree of health education and counselling before and after kidney transplantation. Quality of life among kidney transplant patients in Malaysia has been assessed and analyzed by the MDTR based on the data obtained from the transplant annual return case report forms on work related rehabilitation and quality of life assessment. Over the last 10 years, a median quality of life (QoL) index score of 10 was reported among 1249 patients who were transplanted between 2001 to 2010 (MDTR, 2010). Although the trend of QoL index score appeared to be high over the last decade, contributory factors to such an effect has not been scrutinized from the health education and counselling perspectives which are known to have strong bearing on patient rehabilitation. The assumption of the health care professionals particularly the nurses play a major role in the delivery of health education and counselling is however being taken with little empirical evidence. As such, an in-depth study to explore the contribution of health education and counselling towards rehabilitation and quality of life among kidney transplant patients is necessary to enable health care professionals to gain a better insight of the aspect of these services towards the holistic care of ESRD patients in this country.

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8 OBJECTIVES OF THE STUDY

Taking account of the above points and given the fact that health education and counselling are important aspects of patient rehabilitation, this qualitative study was undertaken to explore the contribution of health education and counselling toward rehabilitation and quality of life among ESRD patients before and after undergoing living related kidney transplantation in Malaysia.

The objectives of the study are as follows:

(1) To examine the perceptions and reactions of kidney transplant recipients toward ESRD.

(2) How do health education and counselling help them to cope with their feelings and acceptance toward their illnesses.

(3) To explore the factors influencing the decisions of ESRD patients on treatment options.

(4) How health education and counselling facilitate ESRD patients in choosing a specific treatment option.

(5) To understand the perception of physiological and psychosocial stressors faced by ESRD patients before and after kidney transplant.

(6) How health education and counselling can help to ameliorate those stressors.

(7) To identify the important aspects of health education as perceived by kidney transplant recipients.

(8) How else can health education and counselling help them to live with the

“gift of life.”

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(9) To gain an insight on the perception of kidney transplant recipients towards the attitude of health care professionals in the delivery of health education and counselling to them.

RESEARCH QUESTIONS

The central enquiry for this study is to explore participant’s experience and understanding towards the contribution of health education and counselling. Five research questions were formulated based on the above stated objectives. Interview questions to each research question were developed as a guide to ensure possible factors related to the research question had been addressed during the interview.

Based on the feedback from members of the colloquium meeting, the initial research title and the five research questions (refer to Appendix II) were amended for the actual study as shown below (refer to Appendix III for interview protocol).

Five Research Questions

Q1. How do patients perceive the role of health education and counselling toward the way they react to the diagnosis and treatment of ESRD?

Q2. How do health education and counselling facilitate ESRD patients in making decision on treatment options?

Q3. How do ESRD patients perceive the needs for health education and counselling towards the physiological and psychosocial challenges faced by them before and after kidney transplant?

Q4. How do ESRD patients perceive the impact/contribution of health education and counselling towards their ways of coping and living with

“the gift of life”?

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Q5. How do ESRD patients perceive the attitude of health care professionals towards the delivery of health education and counselling?

DELIMITATIONS OF THE STUDY

According to Creswell (2003), delimitation and limitation are two important parameters in research study as they “establish the boundaries, exceptions, reservations and qualifications inherent in every study. Delimitations narrow the scope of the study while limitations identify weaknesses of the study.

The scope of this study was confined to ESRD patients who have undergone living related renal transplantation in Malaysia and have reached the legal age of 18 and above at the time of interview. Data pertaining to the reactions, experiences and perceptions were restricted only to kidney transplant recipients who have undergone living related renal transplantation with live donors from the parents, siblings or spouses. Challenges that have been experienced were also delimited to those participants who were involved voluntarily for the study interviews.

SIGNIFICANCE OF THE STUDY

This study attempts to explore the impact/contribution of health education and counselling on the rehabilitation and quality of life among ESRD patients who have opted for living related renal transplantation. The significance of this study was to gain an in-depth insight of the challenges faced by individual kidney transplant recipients suffering from ESRD as they continue to strive for better quality of life.

Information obtained from interviewed participants helps to inculcate a deeper sense of empathy and commitment among health care providers toward the holistic care of kidney transplant patients. More importantly, findings in this study could help health

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care professionals to evaluate and improve the important aspects of health education and counselling toward patient care.

In the attempt to bridge the gap between service and education, the study serves as a channel of communication for health care policy makers to review and implement positive measures strengthening the necessary knowledge and skill in the practice of holistic care among health care professionals towards the management of ESRD patients with kidney transplantation. It is hope that findings in this study would generate interest among health care professionals towards research and new horizon in this area of work. To other kidney transplant recipients alike, they may acknowledge some of the challenges disclosed by study participants and find new strength and ways to cope with their own problems having realized their peers shared the similar issues. This study may enlighten those who are contemplating or preparing for kidney transplantation and increase their understanding and readiness of the benefits and challenges inherent in kidney transplantation. Last but not the least, the study hopes to stimulate greater awareness among the general public towards the health issues and burden in ESRD.

DEFINITION OF TERMS

Following is a list of terms defined for the clarity and purposes of this study.

Experience: An event that is lived through, or undergone, as opposed to one’s imagine or thought about (Corsni, 2002).

Health Counselling: a form of health education that describes various approaches and methods use to help individuals to reduce or prevent the progression of disease as well as to improve health status and functioning. It is an attitude and orientation toward health and well-being (Gelso & Fretz, 2001). Health counselling recognizes the

EXPERIENCING “THE GIFT OF LIFE”: HOLISTIC CONTRIBUTION OF HEALTH EDUCATION AND COUNSELLING IN END-STAGE RENAL DISEASE

EXPERIENCING “THE GIFT OF LIFE”: HOLISTIC CONTRIBUTION OF HEALTH EDUCATION AND COUNSELLING IN END-STAGE RENAL DISEASE

BY

CHONG KWAI FONG

A thesis submitted in fulfilment of the requirement for the degree of Doctor of Philosophy

Institute of Education

International Islamic University Malaysia

MAY 2014

ABSTRACT

APPROVAL PAGE

DECLARATION

INTERNATIONAL ISLAMIC UNIVERSITY MALAYSIA

DECLARATION OF COPYRIGHT AND AFFIRMATION OF FAIR USE OF UNPUBLISHED RESEARCH

EXPERIENCING “THE GIFT OF LIFE”: HOLISTIC CONTRIBUTION OF HEALTH EDUCATION AND COUNSELLING IN END-STAGE RENAL DISEASE

ACKNOWLEDGEMENTS

TABLE OF CONTENTS

LIST OF TABLES

LIST OF FIGURES

CHAPTER ONE INTRODUCTION