LIVING WITH DIABETES: A STUDY OF ILLNESS REPRESENTATION, SPIRITUAL COPING, PSYCHOLOGICAL DISTRESS AND MEDICATION ADHERENCE

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TABLE OF CONTENTS

Contents                                                                                                                               Page

DECLARATION………………………………………………………………………………………………………….. i

DEDICATION…………………………………………………………………………………………………………….. ii

ACKNOWLEDGEMENTS………………………………………………………………………………………….. iii

TABLE OF CONTENTS…………………………………………………………………………………………….. iv

LIST OF TABLES……………………………………………………………………………………………………… vii

LIST OF FIGURES………………………………………………………………………………………………….. viii

LIST OF ABBREVIATIONS……………………………………………………………………………………….. ix

ABSTRACT………………………………………………………………………………………………………………. x

CHAPTER ONE………………………………………………………………………………………………………… 1

INTRODUCTION………………………………………………………………………………………………………. 1

Overview of Diabetes Mellitus………………………………………………………………………………….. 1

Medication Adherence and Diabetes…………………………………………………………………………. 3

Illness Representations and Medication Adherence…………………………………………………….. 3

Spiritual Coping and Medication Adherence……………………………………………………………….. 3

Psychological Distress and Medication Adherence……………………………………………………… 5

Statement of Problem……………………………………………………………………………………………… 6

Relevance of the Study……………………………………………………………………………………………. 7

Aims and Objectives……………………………………………………………………………………………….. 8

CHAPTER TWO………………………………………………………………………………………………………… 9

LITERATURE REVIEW……………………………………………………………………………………………… 9

Introduction…………………………………………………………………………………………………………….. 9

Theoretical Framework……………………………………………………………………………………………. 9

The Self-Regulatory Model (SRM) of Illness Representation……………………………………….. 9

The Theory of Planned Behaviour (TPB)…………………………………………………………………. 11

The Africultural Coping Systems Theory………………………………………………………………….. 12

Review of Related Literature…………………………………………………………………………………… 13

Illness representation and medication adherence………………………………………………………. 13

Psychological Distress and Medication Adherence……………………………………………………. 17

Illness representation and psychological distress……………………………………………………….. 20

Spiritual Coping and Medication Adherence……………………………………………………………… 21

Rationale for the Present Study………………………………………………………………………………. 25

ILLNESS REPRESENTATION AND PATIENTS’ OUTCOMES

v

Statement of Hypotheses……………………………………………………………………………………….. 26

Conceptual Framework of the Study……………………………………………………………………….. 27

Operational Definition of Terms………………………………………………………………………………. 28

CHAPTER THREE…………………………………………………………………………………………………… 29

METHODOLOGY…………………………………………………………………………………………………….. 29

Introduction…………………………………………………………………………………………………………… 29

Research Setting…………………………………………………………………………………………………… 29

Population/Sample Size/Sampling technique…………………………………………………………….. 29

Sampling Technique………………………………………………………………………………………………. 30

Inclusion Criteria……………………………………………………………………………………………………. 31

Exclusion Criteria…………………………………………………………………………………………………… 31

Research Design…………………………………………………………………………………………………… 31

Materials/instrument………………………………………………………………………………………………. 32

Illness Perception Questionnaire-Revised (IPQ-R)…………………………………………………….. 32

Medication Adherence Report Scale 5 (MARS-5)……………………………………………………… 33

Africultural Coping Systems Inventory Subscale Spiritual Centred Coping…………………… 33

The Depression Anxiety Stress Scale 21 (DASS-21)…………………………………………………. 34

The Pilot Study……………………………………………………………………………………………………… 34

Procedure for Data Collection…………………………………………………………………………………. 35

Ethical Considerations……………………………………………………………………………………………. 36

CHAPTER FOUR…………………………………………………………………………………………………….. 37

RESULTS……………………………………………………………………………………………………………….. 37

Introduction…………………………………………………………………………………………………………… 37

Hypotheses testing………………………………………………………………………………………………… 44

Illness Representation, Psychological Distress, Spiritual Coping and Demographic variables as a Predictor of Medication adherence………………………………………………………………………….. 44

Illness Representation as a Predictor of Psychological Distress…………………………………… 47

Spiritual Coping as a Mediator of Illness Representation and Medication Adherence……… 50

Summary of Results………………………………………………………………………………………………. 51

Additional findings………………………………………………………………………………………………….. 51

CHAPTER FIVE………………………………………………………………………………………………………. 54

DISCUSSION………………………………………………………………………………………………………….. 54

Introduction…………………………………………………………………………………………………………… 54

Summary of Study Findings……………………………………………………………………………………. 54

ILLNESS REPRESENTATION AND PATIENTS’ OUTCOMES

vi

Demographic variables and medication adherence…………………………………………………… 55

Illness representation and medication adherence………………………………………………………. 56

Illness consequence and medication adherence……………………………………………………….. 56

Timeline acute/Chronic and medication adherence…………………………………………………… 57

Treatment control and medication adherence…………………………………………………………… 58

Emotional representation and medication adherence…………………………………………………. 58

Personal Control and Medication Adherence……………………………………………………………. 59

Illness coherence, timeline cyclical and medication adherence…………………………………… 60

Psychological distress and medication adherence…………………………………………………….. 61

Spiritual coping and medication adherence………………………………………………………………. 62

Illness representation and psychological distress……………………………………………………….. 63

Spiritual coping as a mediator between illness representation and medication adherence. 65

Recommendations………………………………………………………………………………………………… 66

Future Studies………………………………………………………………………………………………………. 66

Clinical Implications……………………………………………………………………………………………….. 66

Limitations…………………………………………………………………………………………………………….. 68

Conclusion……………………………………………………………………………………………………………. 69

REFERENCES………………………………………………………………………………………………………… 70

APPENDICES…………………………………………………………………………………………………………. 84

APPENDIX 1………………………………………………………………………………………………………… 84

APPENDIX II………………………………………………………………………………………………………… 90

APPENDIX III……………………………………………………………………………………………………….. 94

ILLNESS REPRESENTATION AND PATIENTS’ OUTCOMES

vii

LIST OF TABLES

Table 1:  Demographic data of sample for the study……………………………………………………… 30

Table 2: Summary of Cronbach‘s Alpha for Study Instruments in the Pilot Study……………. 35

Table 3: Means, Standard Deviations, Internal Consistency (Cronbach‘s alpha) and normality of the study variables…………………………………………………………………………………………………………. 39

Table 4: Pearson Moment Product correlation matrix among the study variables………………. 43

Table 5 : Results showing the effects of demographic variables, illness representation components, spiritual coping and psychological distress in predicting medication adherence

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Table 6: Hierarchical Multiple Regression analysis showing the illness representation components as a predictor of psychological distress………………………………………………………………………………. 49

LIST OF FIGURES

Figure 1: proposed conceptual framework of study hypothesis………………………………………. 27

Figure 2: observed model of study findings…………………………………………………………………. 52

LIST OF ABBREVIATIONS

DASS 21 Depression Anxiety Stress Scale 21 IPQ Illness perception Questionnaire

IPQ-R Illness Perception Questionnaire-Revised MARS Medication Adherence Report Scale SRM Self-Regulatory Model

TPB Theory of Planned Behaviour TRA Theory of Reasoned Action

ABSTRACT

The study explored how patient’s representation of diabetes, psychological distress and the use of spiritual coping influence their medication adherence. A total of 196 diabetics were sampled from the Tema General Hospital using the purposive sampling technique. The measures used included the Revised Illness Perception Questionnaire (IPQ-R), Spiritual Coping subscale of the Africultural Coping System Inventory, the Depression Anxiety Stress Scale 21(DASS-21) and the Medication Adherence Report Scale (MARS-5). Analysis using hierarchical multiple regressions and the Pearson product moment correlation coefficient showed that, illness representation components: illness consequence, personal control and emotional representation predicted medication adherence. On the other hand chronic timeline, illness coherence, emotional representation and consequences were the illness representation components that predicted psychological distress. Psychological distress, spiritual coping and demographic variables did not predict medication adherence. Again, spiritual coping did not mediate the relationship between illness representation and medication adherence. The findings of the research indicate the need to incorporate patients’ illness representation in diabetes management.

CHAPTER ONE INTRODUCTION

Overview of Diabetes Mellitus

Diabetes mellitus is one of the most common chronic diseases in nearly all countries, and continues to increase in numbers and significance due to changing lifestyles (Shaw, Sicree & Zimmet, 2010). Shaw et al. (2010) found out that, the world prevalence of diabetes among adults (aged 20–79 years) was 6.4%, affecting 285 million adults, in 2010. In 2014 the global prevalence of diabetes was estimated to be 9% among adults aged 18+ years (World Health Organization (WHO, 2014). In 2012, an estimated 1.5 million deaths were reported to be directly caused by diabetes with more than 80% of diabetes deaths occurring in low- and middle-income countries (WHO, 2014). It is also projected that diabetes will be the 7th leading cause of death by 2030 (Mathers & Loncar, 2006). This particularly does pose a threat to developing countries as a rapid prevalence rate is expected in this populace.

Diabetes mellitus refers to a group of metabolic diseases that are characterized by hyperglycemia. Hyperglycemia is caused by the body’s inability to produce or effectively utilize enough insulin, a hormone that the body uses to convert food into glucose. As a result of this defect, the level of glucose in the blood becomes elevated Black (2002). It is characterized by chronic hyperglycaemia with disturbances of carbohydrate, fat and protein metabolism resulting from defects in insulin secretion, insulin action, or both (WHO, 1994). Three major types of diabetes have been identified, namely, Type -1, Type-2 and Gestational diabetes. Type 1 diabetes is one of the most common chronic childhood conditions and is characterized by inadequate or non-existent supplies of insulin, without which the body is unable to regulate blood glucose levels or use that which is in circulation. This inability of the body to regulate blood glucose levels or use that which is in circulation usually results in hyperglycaemia, leading to diabetic ketoacidosis, coma and death if left untreated (Edgar &

Skinner, 2003). Type 2 diabetes is said to result from the body‘s ineffective use of insulin and usually comprises 90% of people with diabetes around the world (Taylor, 2010). This has been greatly said to result from lifestyle and diet. Gestational diabetes mellitus (GDM) is defined as impaired glucose tolerance with onset or first recognition during pregnancy.

Usually symptoms of diabetes are not severe, or may be absent, and consequently hyperglycaemia, sufficient to cause pathological and functional changes, may be present for a long time either before a diagnosis is made or mismanagement after diagnosis (Arkkila & Gautier, 2003). The effects of diabetes mellitus have been documented in long-term damage, dysfunction and failure of various organs. The potential long-term effects of diabetes mellitus that has been documented includes potential blindness (WHO, 2012), renal failure (Suissa, Hutchinson, Brophy & Kezouh, 2006) and/or neuropathy with risk of foot ulcers, amputation (Pham et al., 2000).

The long-term manifestations of diabetes has been identified as a contributory factor to its status as a leading cause of premature illness and mortality worldwide (International Diabetes Federation, 2006). However, long-term glycaemic control has also been established as being fundamental to the management of diabetes and has been shown to reduce both  microvascular and macrovascular complications (Asche, LaFleur &  Conner,  2011). Although healthy lifestyle choices including diet, exercise and weight control provide the foundation for managing diabetes, usually, patients need medications to achieve target blood sugar (glucose) levels which are ultimate in diabetes care. According to the guideline from the joint consensus of the European Association for the Study of Diabetes and the American Diabetes Association, pharmacotherapy for diabetes depends on a patient‘s diagnosis: type 1 diabetes is treated with exogenous insulin, whereas type 2 diabetes is treated initially with an oral anti-hyperglycaemic agent with additional agents being added as needed (Nathan et al.,

2009). Nevertheless, despite adequate diagnosis and medical care, patients often fail to derive the optimal clinical benefit of drug therapy because of medication non-adherence and thus making management of chronic illness a pervasive clinical challenge (Simoni, Frick, & Huang, 2006).

Medication Adherence and Diabetes

The treatment of chronic illnesses commonly includes the long-term use of pharmacotherapy Brown and Brussell (2011). Although medications are effective in combating diseases, their full benefits will not be realized when not taken as prescribed. The effect of diabetes proves fatal for sufferers and as such optimal management for better health outcomes among patients affected cannot be underscored. As indicated initially, one major predictor of health outcomes documented among chronic illness patients‘ including diabetics is medication  adherence (Yu, Yu & Nichol, 2010). Medication adherence is conceptualised as the extent to which an individual‘s behaviour in taking medication corresponds with agreed recommendations from a healthcare provider. It is established that non-adherence to medications is a problem in clinical practice, especially among patients suffering from asymptomatic chronic conditions such as diabetes, hypertension etc. (Pladevall et al., 2004). However, medication non- adherence among diabetic patients has been found to be very high compared with other chronic conditions, which impedes proper management of the disease with studies reporting adherence rate as low as 36% (Cramer, 2004; DiMatteo, 2004; Jambedu, 2006; Mann, Ponieman, Levental & Halm, 2009).

Illness Representations and Medication Adherence

Recently, research in the area of health and illness behaviour has seen changes in the approach to the study of health with clinicians and researchers adopting cross disciplinary  and integrated approaches. This change in approach is indicated to be partly due to the call

for the bio-psychosocial approach (Dienfenbach & Leventhal, 1996). This approach is seen  as emphasizing the role of environmental and subjective factors. Several determinants of health outcomes among patients suffering from illnesses have been established and that, outcomes of disease management in patients are determined not only by objective indicators but also by subjective factors adopted by individual patients (Leventhal, Weinman, Leventhal & Phillips, 2008). One of such subjective predictors of health identified in the literature is illness representations.

Illness representations are defined as patients‘ beliefs and expectations about an illness or somatic symptom. Illness representations are concerned with those variables that patients themselves deem to be central to their illness experience and management of their illness condition (Edgar& Skinner, 2003). Thus, how patients believe or expect their illness to be, has been found to be directly or indirectly related with their health behaviours as well as health outcomes (Diefenbach & Leventhal, 1996). Leventhal‘s Self-Regulation Theory (Leventhal, Meyer, & Nerenz, 1980) introduces a patient centred understanding to the dynamic factors involved in health behaviours including adherence. Central to this model are the representations that patients hold about their illness, whereby illness representations are defined as ―patients‘ own implicit, common-sense beliefs about their illness‖. The proponents of the model propose that, individuals, in order to understand and cope with their illness,