UNIVERSITY OF GHANA COLLEGE OF HUMANITIES DEPARTMENT OF PSYCHOLOGY EXPERIENCES OF LIVING WITH DIABETES AND THE INFLUENCE OF DIABETES COMPLICATIONS AND SELF-CARE ON PSYCHOLOGICAL OUTCOMES BY ABIGAIL ESINAM ADADE (10471628) THIS THESIS IS SUBMITTED TO THE UNIVERSITY OF GHANA, LEGON IN PARTIAL FULFILMENT OF THE REQUIREMENT FOR THE AWARD OF MPHIL IN CLINICAL PSYCHOLOGY DEGREE JANUARY, 2022 ii DECLARATION I, Abigail Esinam Adade, hereby declare that this thesis is the final product and a true reflection of an investigation under the supervision of Dr. Margaret Amankwah-Poku and Dr. Angela Anarfi Gyasi-Gyamerah both of the Department of Psychology, University of Ghana. All references have been cited and acknowledged accordingly. ABIGAIL ESINAM ADADE Date: 27/01/2022 (10471628) (MPhil Candidate) Date: 27/01/2022 Dr. Margaret Amankwah-Poku (Principal Supervisor) Date: 27/01/2022 Dr. Angela Anarfi Gyasi-Gyamerah (Co-Supervisor) iii DEDICATION I dedicate this work to God and my dearest family. iv ACKNOWLEDGEMENT My utmost thanks go to the Almighty God for the gift of life and for seeing me through this work. I wish to specially thank my supervisors, Dr. Margaret Amankwah-Poku and Dr. Angela Anarfi Gyasi-Gyamerah for their immeasurable support, patience, and guidance throughout this study. My next thanks go to my parents: Mr. and Mrs. Adade, my Aunt - Happy, and my brothers: Enoch, Edem, Peter, and Redeemer for their constant support and prayers throughout my MPhil program. To Nelson Zotoo, Mawuena Koomson, Kenneth Owusu-Ansah, Mr. Prince Addai, Afiefa Bansah, Prince Atorkey, Nutifafa Dey, Nana Amo, Delight Klutse, Caleb, Darius and Dallas Sagoe, just to mention a few, God bless you for all your love, support, and encouragement. I am very grateful to the hospital management and patients of the Achimota, Ridge, and La Hospitals. Finally, I want to recognize all my MPhil course mates. Thank you all and may God bless you abundantly. v Abstract Self-care activities are critical in managing diabetes and lead to better recovery responses. However, adherences to these activities are poor among patients. This results in improper disease management, increases in diabetes complications, and consequently poor psychological health. This study examines the lived experiences and the influence of diabetes self-care activities and complications on psychological outcomes (depression, diabetes distress, and quality of life) among patients with type 2 diabetes. Multivariate Analysis of Variance, Multiple regression, and Linear regression were used to analyze the quantitative data obtained whereas thematic analysis was employed for the examination of the qualitative data. Results from the quantitative study revealed that no significant differences exist in the distress and depression levels between patients with two or more diabetes complications and those with no diabetes complications. Also, there were no observed differences in self-care activities between patients with two or more, and those with no diabetes complications. Furthermore, quality of life was significantly predicted by exercise but not medication. Interestingly, diabetes duration neither predicted depression, diabetes distress nor quality of life. Findings from the qualitative study, it was revealed that most patients experienced negative emotions when diagnosed with diabetes. Some challenges to effective diabetes management were identified to be distance to health care facilities, the use of herbal drugs, and the fear of medication side effects. Despite support and coping tools, patients still experienced some form of distress due to complications and death from these complications. Limitations of the study and their implications for future research are discussed. vi Table of Contents DECLARATION ....................................................................................................................... ii DEDICATION ......................................................................................................................... iii ACKNOWLEDGEMENT ........................................................................................................ iv Abstract ...................................................................................................................................... v List of Tables ......................................................................................................................... viii List of Abbreviations ................................................................................................................ ix Chapter One ............................................................................................................................... 1 Introduction ................................................................................................................................ 1 Background of the Study ....................................................................................................... 1 Problem Statement ............................................................................................................... 10 Aim and Objectives of the Study ......................................................................................... 11 Relevance of the Study ........................................................................................................ 12 Literature Review..................................................................................................................... 13 Theoretical Framework ........................................................................................................ 13 The Health Belief Model ................................................................................................ 13 Self-Regulation Model ................................................................................................... 15 Review of Related Studies ................................................................................................... 17 Relationship between self-care, diabetes complications, and quality of life ............. 20 Diabetes duration, depression, diabetes distress, and quality of life. ........................ 25 Diabetes complications, diabetes distress, depression, and quality of life. ............... 27 Rationale of the Study .......................................................................................................... 31 Statement of Hypotheses...................................................................................................... 32 Research Questions for the Qualitative Study ..................................................................... 32 Chapter Three........................................................................................................................... 33 Methodology ............................................................................................................................ 33 Research Design................................................................................................................... 33 Research Setting................................................................................................................... 33 Population, Sample, and Sample Size Determination ......................................................... 35 Quantitative Study ............................................................................................................... 36 Instruments ..................................................................................................................... 36 Procedure ............................................................................................................................. 38 vii Ethical Consideration ........................................................................................................... 39 Data Analysis ....................................................................................................................... 39 Quantitative Data ........................................................................................................... 39 Trustworthiness .................................................................................................................... 41 Reflexivity............................................................................................................................ 42 Chapter Four ............................................................................................................................ 43 Results ...................................................................................................................................... 43 Quantitative Study ............................................................................................................... 43 Preliminary Analysis ............................................................................................................ 45 Analysis of normal distribution of variables ............................................................... 45 Reliability analysis of the scales .................................................................................... 45 Descriptive analysis ........................................................................................................ 45 Inter-correlation matrix ................................................................................................ 46 Hypotheses Testing .............................................................................................................. 47 Analysis of Participants’ Interviews .................................................................................... 53 The Diagnosis of diabetes .............................................................................................. 54 Challenges with treatments ........................................................................................... 58 Experiences with diabetes complications ..................................................................... 68 Summary of qualitative findings .......................................................................................... 70 Chapter Five ............................................................................................................................. 71 Discussion ................................................................................................................................ 71 Introduction .......................................................................................................................... 71 Relationships between diabetes complications, depression, diabetes distress, and quality of life ................................................................................................................... 72 Relationship between self-care and quality of life ...................................................... 74 Relationship between diabetes duration, psychological distress, and quality of life75 Findings from Qualitative Analyses ............................................................................. 76 Challenges with Treatment ........................................................................................... 77 Coping and Support ....................................................................................................... 79 Experiences of diabetes complications and fear of death ........................................... 80 Limitations and Recommendations...................................................................................... 81 Implications for Practice and Clinical Care ......................................................................... 81 Conclusion ........................................................................................................................... 81 viii List of Tables Table 1: Sociodemographic characteristics of Patients ........................................................... 44 Table 2: Summary of Descriptive Statistics and Normality and Reliability Test of the variables in the Study ............................................................................................................... 46 Table 3: Inter-correlation matrix of the Study Variables ......................................................... 47 Table 4: Multivariate Analysis of Variance comparing patients with diabetes complications and no complications on both self-care activities and, quality of life ..................................... 48 Table 5: Summary of Multiple Regression for Self-Care Activities on Quality of Life ......... 50 Table 6: Summary of the relationship between Diabetes duration, depression, quality of life, and diabetes distress ................................................................................................................. 51 Table 7: Demographic and clinical characteristics of participants .......................................... 52 Table 8 ..................................................................................................................................... 53 ix List of Abbreviations WHO: World Health Organization IDF: International Diabetes Federation ADA: American Diabetes Association CDC: Center for Disease Control HbA1c: Glycated hemoglobin BMI: Body Mass Index QoL: Quality of Life DSM: Diagnostic Statistical Manual 1 Chapter One Introduction Background of the Study Diabetes is a metabolic disease characterized by increased levels of blood glucose (World Health Organization; WHO, 2020). It is associated with the body’s inability to effectively metabolize glucose as a result of defects in insulin secretion or improper insulin action (Torpy, Lynm & Glass, 2011). Improper insulin secretion builds up glucose in the blood instead of getting to the cells. This glucose gets stored up in the bloodstream making blood sugar levels high, leading to diabetes (Chester et al., 2019). People living with diabetes experience symptoms such as polyphagia (excessive hunger), polydipsia (frequent thirst), polyuria (frequent urination), fatigue, erectile dysfunction, and blurred vision (Pot et al., 2019). Generally, there are three (3) main types of diabetes: type 1 diabetes, type 2 diabetes, and gestational diabetes (WHO, 2020). Type 1 diabetes, also known as autoimmune diabetes, is characterized by insulin deficiency due to the loss of unique insulin production cells found in the pancreas called pancreatic beta cells (Kahonovitz, Sluss, & Russell, 2017). The causes of the loss of these beta-cells are not fully understood, however, genetics and environmental triggers such as toxins have been suspected (International Diabetes Federation; IDF, 2019). Type 1 diabetes represents approximately 10% of diabetic cases (IDF, 2019). Chiang et al. (2018) indicate that this type of diabetes normally occurs in children, adolescents, and young adults. Type 2 diabetes, on the other hand, results from beta-cell dysfunction and insulin resistance (Saisho, 2015). Compared to type 1 diabetes, this type of diabetes is more prevalent and accounts for about 90% of diabetes diagnoses worldwide (IDF, 2019). According to the Centre for Disease Control (CDC,2020), it most often develops in people over age 45 but now 2 children, adolescents, and young adults are also developing it. Risk factors for developing type 2 diabetes include aging, reduced physical activities, family history of diabetes, prior history of gestational diabetes, obesity, and race. Although CDC (2020) showed that African American, Asian Americans, Latinos American are more susceptible to developing this type of diabetes (CDC, 2020), studies such as Gudjinu & Sarfo (2017) indicates that type 2 diabetes is on the rise in Ghana. This may be attributed to the changing lifestyles of Ghanaians including an increase in the consumption of high caloric foods and reduced exercise (Quartey, 2012). The third type of diabetes, Gestational Diabetes, refers to any degree of glucose intolerance first noticed during pregnancy (IDF, 2016). It occurs in about 2 - 5% of pregnancies and often disappears after birth (Kampmann, Madsen, Skajaa, Iversen, Moeller & Oversen, 2015). Obesity is noted to be a risk factor for developing gestational diabetes (Zhu et al. 2019). This type of diabetes exposes both the mother and baby to risks such as neonatal hypoglycaemia and maternal hyperglycaemia. Further, both mother and baby are at increased risk for developing type 2 diabetes following delivery (Zhu & Zhang, 2016). The prevalence of diabetes over the years has been high and has reached endemic proportions worldwide over the years (Korsah, 2015). According to the International Diabetes Federation (IDF, 2019), about 463 million people worldwide are affected by diabetes, and this figure is projected to reach about 700 million in 2045. Further, it was estimated that 232 million people have undiagnosed diabetes and 374 million people were at a high risk of developing diabetes. In Africa, an estimated 9.4 million adults aged 20-79 years were living with diabetes as of 2019, representing a regional prevalence of 3.9% (IDF, 2019). The region has the highest proportion of undiagnosed diabetes, with over 60% of adults currently living with diabetes and unaware of their condition (IDF, 2019). Even though IDF does not state the number of people 3 suffering from the various types of diabetes in Ghana, it estimates that the country has about 518,400 people living with diabetes. The high prevalence of diabetes affects every sector of a country’s economy, most especially the health and the economic sectors (WHO, 2016). The International Diabetes Federation, for instance, estimates that as of 2019, 4.2 million diabetes-related deaths and disabilities were recorded globally (IDF, 2019). In addition to this is the high expenditure imposed on health systems, governments, and individuals who are compelled to bear the cost involved in diabetes treatment (Zhang et al., 2010). This corroborates IDF’s (2019) findings as the global health expenditure of diabetes amounted to 760 billion dollars. Similarly, the cost of diabetes in Africa has been overwhelming with a scarcity of economic and healthcare resources, as diabetes competes with other infectious and chronic diseases for these resources (Mutyambizi, Pavlova, Chola, Hongora & Groot, 2018). Since diabetes has debilitating effects on both the individual and the country as a whole, various treatment therapies are laid down in managing it. These include medication, psychosocial care, education/counselling, continuous monitoring of biochemical markers, and the consistent and sustained performance of self-care activities (Alrahbi, 2014). Diabetes self- care activities, which are the focus of the present study, are the day-to-day actions an individual performs to control and reduce the impact of the disease on his/her health and well-being. They are paramount in keeping the disease under control (Ghosh & Roy, 2016). These self-care behaviours involve dietary restrictions, frequent blood glucose monitoring, foot care, recording insulin injections, regularity in eating and sleeping to match the peaks and action of the injected insulin, and having a source of sugar readily available for episodes of hypoglycemia and regular exercise (Abrahim, 2011). 4 Regular exercise is one of the key self-care activities that aid diabetes treatment. According to the Centre for Disease Control (CDC, 2020), individuals diagnosed with diabetes are required to participate in at least 30 minutes of moderate-intensity physical exercises, five or more times a week. The WHO (2016) defines moderate-intensity physical exercise as one that involves a reasonable amount of energy as well as increases heart rate. This includes aerobic exercises such as walking, swimming, cycling, and jogging. According to Sheri et al (2016), physical exercises help control diabetes by contributing to weight loss, improving blood glucose, and decreasing insulin resistance and glycated haemoglobin (HbA1c) levels. Aside from physical exercise, diabetes can also be controlled by improving patients’ dietary knowledge and adherence to dietary procedures (Sami, Ansari, Butt & Hamid, 2017). A diabetes diet requires eating moderate amounts of healthiest foods and sticking to consistent meal times. It is a healthy-eating plan that typically contains the right nutrients and is low in calories (vegetables, fruits, whole grains) and it is based on eating three meals at regular times per day (Yasmin et al., 2020). Maintaining healthy meal plans helps in controlling glucose levels, managing weight, controlling high blood fats as well as high blood pressure (Yasmin et al., 2020). The body creates a detrimental increase in blood sugar levels when people living with diabetes eat extra fats and calories and when this persists, it may lead to long-term complications including heart diseases and kidney damage (Eckert, 2012). In addition to exercise and diet, majority of patients with diabetes need pharmacological agents to manage the disease. These medications are in the form of insulin peptides or oral anti- diabetic agents such as metformin, meglitinides, and sulfonylureas (Wallai & Molitch, 2014; IDF, 2016). These medications help to lower the production of glucose in the liver as well as improve the body’s sensitivity to insulin (Ngugi, Njagi & Kibiti, 2012). Individuals with diabetes are required to adhere to strict blood glucose monitoring and maintaining a glycated 5 haemoglobin (HbA1c) level of less than 7% (American Diabetes Association [ADA], 2018). The ADA recommends the maintenance of good foot care by regularly examining both feet, soles, and toes, keeping the feet dry, and reporting any swelling, wound, or discoloration to a health facility. A consistent engagement in these self-care activities correlates positively with improved quality of life and well-being, lowered glycated haemoglobin levels, and reduction in diabetes complications (Shrivasta, Shrivasta & Ramasmay, 2013). For instance, a study by Lin et al., (2017) showed a significant reduction in depression and an improvement in the quality of life among patients with type 2 diabetes as their exercise rates increased. Also, the American Diabetes Association (2017) revealed that in both type 1 and type 2 diabetes, exercises improve cardiovascular fitness, insulin resistance, glycaemic control, blood circulation, and lipid levels. Furthermore, diet, self-management of blood glucose levels, and medication adherence have been positively associated with quality of life and improved well- being (Babazadeh et al.,2017; Zhao et al., 2019). Although self-care activities yield positive outcomes, unfortunately, some patients adhere poorly to these activities. For example, Stephani, Opoku & Beran, (2018) reported poor diabetes self-management among Sub-Saharan Africans; specifically, blood glucose monitoring, physical activity, and risk reduction behaviours were inadequate. A study involving 416 Ethiopian patients with diabetes reported a 71.6% prevalence rate of poor self- care activities (Abate, Tareke & Tirfie, 2018). Mogre, Abanga, Johnson, Tzelepis, and Paul (2017) also reported lower adherence rates to diet, foot care, and self-monitoring of blood glucose among Ghanaians with type 2 diabetes in Tamale. The non-adherence rates of self-care activities may be influenced by various factors. Among these are illness perception, diabetes knowledge (Nuworza et al., 2017), negative 6 emotions (Amankwah-Poku, 2020), difficulty in changing old habits (Hushie 2019), lack of motivation to exercise, busy schedule, lack of glucometers, lack of family support, financial difficulties and the use of herbal drugs (Mogre et al., 2019). Patients with comorbid conditions also tend to display poor adherence to self-care activities compared to those suffering from just diabetes (Quek et al. 2019). These factors all serve as barriers to self-care practices. Notwithstanding the fact that performing self-care activities may be a daunting task (Winchester, Williams, Wolfman & Egede, 2016), negligence to adhere to these activities can have an immensely detrimental effect on the health of a patient (Groof, Golden & Wagner, 2016). For instance, poor glycaemic control was recorded among patients who were non- adherent to their medication, exercise, and diet (Sekhar et al. 2013). Also, DiBonaventura et al. (2014) revealed a 21% increase in HbA1c levels as a result of non-adherence among patients with diabetes on insulin. Poor dietary practices and physical activities lead to changes in energy and excess fat which promote weight gain and insulin resistance (Al-Hayek et al., 2012). Insulin resistance can cause obesity and also, induce an imbalance in glucose metabolism, and cause hyperglycaemia (Ormazabal et al., 2018). Prolonged hyperglycaemia and poor glycaemic control lead to potentially life-threatening diabetes complications (Elnour, 2018). Diabetes complications can be broadly categorized into two; microvascular or macrovascular. Microvascular complications include retinopathy, neuropathy, and nephropathy whilst macrovascular complications include coronary artery disease, peripheral artery disease, and cerebrovascular disease (Mauricio, Alonso & Gratacos, 2020). These complications are common among patients with poorly controlled glycaemic levels. Yaghoubi (2019) reported an 80.3% prevalence of at least one type of diabetes-related complication among people with diabetes in Canada with the most frequently reported complications being high blood pressure (54.65%), cataracts (29.52%), and poor circulation (21.68%). 7 In Ghana, Annani-Akollor et al. (2019) reported the prevalence of macrovascular (31.8%) and microvascular (35.3%) complications among patients at the Komfo Anokye Teaching Hospital, as well as the prevalence of neuropathy (20.8%), nephropathy (12.5%), retinopathy (6.5%), sexual dysfunction (3.8%), diabetic ketoacidosis (2.0%), and hypoglycemia (0.8%). These diabetes complications are significant causes of increased morbidity and mortality rates (Papathotheodorou, et al., 2017) and can be a cost to patients, employers, and society at large as patients absent themselves from the workplace and ultimately go on early retirement (Meetoo, 2014). Additionally, the quality of life and well- being of patients with diabetes worsens as diabetes complications develop (Triskelion et al., 2017). Quality of life (QoL) is described as a “broad-ranging concept affected in a complex way by an individual’s psychological state, personal beliefs, social relationships and their relationship to salient features of the environment (Skevington, 1999). Quality of life incorporates the mental state, level of an individual's autonomy, public activity, and individual convictions (Goh, Rusli, & Khalid, 2015). It comprises four components, namely; physical, psychological, environmental, and social components. The physical dimension incorporates an individual’s daily activities, functional capacity, energy, pain, sleep, and mobility. The second component which is the psychological dimension incorporates an individual’s positive attitudes, mentality self-image, negative thoughts, self-esteem, mentality, learning ability, religion, and memory concentration. The social dimension refers to an individual’s relationship with others, sexual activities, and social support. Lastly, the environmental dimension incorporates an individual’s financial resources, recreation, safety, health, and social services, living physical environment, opportunities to acquire new skills and knowledge. Worse quality of life was reported across all the dimensions of quality of life listed above among patients with more complications (Venkataraman et al. 2012; Peyrot et al., 2017). Tadros, Kontodimopoulos, 8 Feretis, Kabanarou, and Peto (2011) also reported a poorer quality of life among patients with diabetic retinopathy and maculopathy. Also, diabetes complications can lead to distress and depression in patients with diabetes (Jacob & Kostev 2015). Diabetes-related distress refers to the burden related to the physiological and behavioural outcomes resulting from the knowledge of living with diabetes and its complications (Aljuaid, Almutairi, Assiri, Almalki, & Alswat, 2018). It can also result from external issues such as family and societal health care services. Studies indicate that, about 40% of people with diabetes experience diabetes distress at some point (Abrahim, 2011; Stephani, Opoku, & Beran, 2018). Depression, on the other hand, is a mood disorder that affects a person’s thoughts, feelings, and behaviour (Diagnostic Statistical Manual; DSM-V, 2013). Depression among patients with diabetes is caused by biological factors such as the hyperactivity of hypothalamic-pituitary adrenalin and lack of physical activities leading to obesity and increased insulin resistance (Rustad, Musselman & Nemeroff, 2011). Research indicates that the prevalence of depression among patients with diabetes is twice higher than the normal population (Kreider, 2017). One of the factors associated with depression and distress in patients with diabetes is the duration with which they have lived with the disease. Diabetes duration has been reported to be positively associated with both depression and diabetes distress among people with type 2 diabetes (Nanayakkara et al. 2018). Islam, Karim, Habib, and Yesmin (2017) reported a positive association between a longer duration of diabetes (above 10 years) and diabetes distress. Similarly, Baek, Tanenbaum, and Gonzalez (2014) revealed a significantly positive correlation between diabetes duration, depression, and distress. Due to the distress, depression, demanding self-care practices and other complications that characterize diabetes, living with it can be burdensome. This disease also burdens an 9 individual’s or family’s expenses. Furthermore, it affects an individual’s work and social life thus requires coping for a better outcome (Amon & Aikins, 2019). “Coping refers to the cognitive and behavioural efforts to modulate internal and external specific demands appraised as exceeding personal resources” (Endler & Parker, 1990; Lazarus & Folkman 1984). Evidence suggests that coping strategies such as social and financial support promotes positive psychological outcomes and help alleviate the psychological distress associated with living with diabetes (Miller & Dimatteo, 2013). In addition to this, Gupta (2014) reported religiosity and spirituality as instrumental sources of coping in diabetes management. In summary, diabetes is a chronic disease that requires self-management. However, poor self-care has been recorded among patients with diabetes making them susceptible to developing diabetes complications. These diabetes complications, in turn, increase the risk of having diabetes distress and depression whilst causing a reduction in quality of life. Thus, the present study assessed the lived experiences, diabetes complications, diabetes self-care, and psychological outcomes among patients living with type 2 diabetes using a mixed approach. 10 Problem Statement Diabetes mellitus has been on the increase in developing countries and Ghana is no exception (IDF, 2017). This increase may be due to the current changes and patterns of the lifestyle of Ghanaians (Owusu et al., 2016). Living with type 2 diabetes necessitates lifestyle changes such as diet adherence and blood glucose monitoring, which are referred to as self- care activities. In the management of diabetes, self–care activities are crucial because they have been shown to produce positive health outcomes such as improved quality of life and subjective well-being (Aljuiad et al., 2013). In as much as these practices are effective in producing positive outcomes, adherence to these activities in Ghana is low (Kretchi et al., 2020; Mogre et al., 2017). Lack of glucometers, difficulties changing old habits, illness perception among others have been identified as barriers to self-care. These tend to have an impact on self-care, which has been identified as an important factor influencing glycemic control and, as a result, diabetes complications. Complications of diabetes range from acute to chronic and a large number of people with diabetes experienced at least one complication (Yaghoubi, 2019). Diabetes complications are significant causes of increased morbidity and mortality rates and an increase in economic burden. (Raghavan et al., 2019). People suffering from diabetes complications are vulnerable not only to its debilitating physical health effects, such as foot ulcers and amputations but also to its debilitating psychological effects (Islam, Karim, Habib & Yesmin, 2013). Diabetes complications, such as angina, stroke, and retinopathy, are likely to reduce patients' well-being and quality of life significantly. This may have an impact on patients' ability to function independently (Debono & Cachia,2007). Studies assessing the psychological distress of patients living with type 2 diabetes predominantly in Western countries have emerged due to the increased health challenges associated with diabetes (Bigna, et al., 2018). However, in Sub-Saharan Africa, far less has 11 been done on the psychological outcomes and health implications despite the endemic proportion of the populace with the disease. Assessing the psychological outcomes and health implications is imperative given the psychosocial challenges and health complications associated with the disease. Current literature assessing the lived experiences, diabetes complications and psychological outcomes in Ghana is limited and, in most cases, has adopted only qualitative or quantitative methods. This does not permit an in-depth understanding of the phenomenon. Scholars are yet to eclectically understand the lived experiences and the influence of self-care and diabetes complications on psychosocial challenges such as distress, depression and quality of life in Ghana using the mixed method. Since previous studies did not help to vividly explain the life experiences, management of diabetes and the impact of diabetes complications and self- care on psychological outcomes, the existing management of diabetes is not very direct and effective. As a result, creating a problem in the quest to improve quality of life and reduce diabetes distress and depression among persons with type 2 diabetes. The study can thus add value by providing more in-depth knowledge by utilizing the mixed-method design to understand the lived experiences and psychological outcomes among patients with type 2 diabetes in Ghana. Aim and Objectives of the Study This study assesses in general, the lived experiences and the extent to which diabetes complications and self-care activities influence the psychological health of people with type 2 diabetes. The specific objectives of this study are to: 1. Assess the relationship between diabetes complications and psychological factors (depression, diabetes distress, and quality of life). 2. Assess the relationship between self-care activities and quality of life. 12 3. Assess the relationship between diabetes duration, psychological distress (depression and diabetes distress), and quality of life. 4. Explore the experiences of people with type 2 diabetes. 5. Find out the challenges of self-care management among people with type 2 diabetes. 6. Explore the management and coping strategies of people living with type 2 diabetes. 7. Explore the emotional responses of people living with type 2 diabetes about diabetes complications. Relevance of the Study The knowledge generated from this study will sensitize patients with diabetes on the impact of self-care practices and diabetes complications on their quality of life. Based on the findings of the study, healthcare practitioners can come up with appropriate measures and design interventions to improve adherence to diabetes self-care practices and reduce the rate of diabetes complications to improve psychological health. Furthermore, the findings of the present study will help address the paucity of literature, stimulate concerns and promote a platform for addressing the psychological outcomes associated with diabetes and its predictive factors (diabetes complication and self-care activities) in the Ghanaian context. 13 Chapter Two Literature Review This chapter summarizes the theoretical background of the study, a review of relevant literature, and presents the rationale and hypotheses/research questions for the study. Theoretical Framework The Health Belief Model (Rosenstock, 1966) and the Self-Regulation Model (SRM; Leventhal & Cameron, 1987) served as theoretical foundations for this study. The Health Belief Model. The Health Belief Model (HBM; Rosenstock, 1966) is a psychological framework that classifies health behaviour. As posited by the HBM, an individual will take a health-conscious action if such is believed to help avoid a negative health- related condition, has a positive health outcome, and that such recommended health action when taken is without any perceived obstacles and minimal if any (Rosenstock, 1966). The HBM was explained in terms of five concepts signifying perceived vulnerability or susceptibility, perceived weakness or severity, perceived barriers or benefits, perceived self- efficacy, and cues to action—which result from within the individual or from his external environment (Rosenstock, 1966). Perceived vulnerability or susceptibility depicts an individual’s appraisal of the risk of acquiring a disease. It is the degree to which an individual believes that they are at risk of contracting a specific illness, discomfort, or disease. Perceived weakness or severity depicts a person's view of the seriousness of an illness and how he or she might interact with the illness socially, medically, and its other likely outcomes. Perceived barriers or costs refer to the impairments or the likely cost involved in exhibiting healthy behaviors. The barriers serve as impediments in exhibiting recommended health actions whilst perceived benefits deal with an individual's assessment of the positive consequences of adopting healthy behaviors. Self- efficacy on the other hand refers to the extent to which a person has the confidence to 14 successfully carry out a recommended health action. Lastly, cues to actions depict the factors that activate the decision-making process of engaging in a recommended health action. These cues could be internal (wheezing, body pains) or external (illness of a family member, the media) to the individual. Relating the HBM to the present study, perceived susceptibility can be linked to the perception people with diabetes have of their vulnerability to the disease and its associated complications. If they perceive developing complications as a result of the disease, then their perceptions of diabetes complications are likely to influence them to adhere to better self-care practices (Adejoh, 2014). Secondly, people’s perceived weakness or severity in this study will be how serious and threatening they recognize diabetes complications are and are convinced that self-care practices will lead to better treatment outcomes. Thirdly, perceived barriers or perceived benefits can be related to the perceived cost or benefit of engaging in self-care management to control glycemic levels and prevent complications. For instance, if people with diabetes perceive oral drugs, test strips or insulin pumps to be expensive but beneficial to their treatment to prevent complications, they are more likely to commit their resources to these. However, if they think the cost of treatment is too expensive and will not be of many benefits to them, then they are less likely to commit resources to that end. In like manner, individuals will weigh the costs and benefits of exercising and maintaining a healthy diet before engaging in such activities. Fourthly, an individual’s perceived self-efficacy is his/her level of confidence to successfully carry out self-care behaviors. The level of self-efficacy will determine the extent to which a person will persist in maintaining self-care behaviors even when he/she encounters barriers. For example, if perceived self-efficacy is high, then individuals will maintain self- care behaviors to control the detrimental consequences associated with it. On the other hand, if they perceive themselves as incapable of maintaining self-care behaviors then they are less 15 likely to engage in effective treatment, which will increase their chances of developing complications or increase complications. Harrison, Mullen, and Green (2012) indicated that patients with diabetes engage in healthy behaviors when they perceive that they have control of the disease and that they can successfully engage in that healthy behavior. Lastly, cues to actions will be the internal (low or high sugar levels) or external (reminders from family members to adhere to self-care practices) cues that motivate individuals with diabetes to maintain self-care practices. For instance, numbness and tingly feeling in a person’s fingers which are signs of neuropathy (internal cues), and seeing other patients with diabetes during clinical visits with amputations (external cues) may prompt individuals to be more adherent to prevent or delay diabetes complications. Self-Regulation Model. The Self-Regulation Model (SRM) postulates that an individual’s set of cognitive representations and emotional representations determines his/her health behaviour. This model postulates that in response to an illness, individuals will form both cognitive and emotional representations, which are processed independently of each other (Leventhal, Nerenz, & Steele, 1984). Cognitive representations guide an individual’s behavior concerning managing an illness. These representations are formed based on five distinct beliefs canopied under illness perception (Leventhal, Meyer, & Nerenz, 1980). Illness perception comprises these five interrelated beliefs namely; identity (label and symptoms associated with the illness), timeline (duration of illness), cause (source of illness), consequences (effects of illness on life domains), and control (the extent to which the illness is amenable to treatment or cure). The first belief which is identity refers to beliefs regarding the disease label and the symptoms associated with it. For instance, by depending on symptoms such as frequent urinating and thirst as well as past experiences, an individual might label his or her condition as diabetes. The second belief, cause, refer to beliefs about potential reasons for the illness. These causal factors may include heredity, environmental factors, or the way of life. Perceptions based on 16 an individual’s personal experiences and the opinions of others might influence interpretations about the cause of the disease. Thirdly, timeline/course beliefs are predictive beliefs concerning the duration of illness with its symptoms increasing or decreasing cyclically. This dimension includes views about the uncertainty and unpredictability of an illness. The Consequences belief is the fourth and concerns the apparent physical, social, mental, and economic outcomes of an illness. Lastly, curability or controllability has to do with what an individual does to cure or control the condition. It takes into account the perception of individual control (trust in self‐ management) and treatment viability. This theory is related to the present study in that, it implies that people living with diabetes first assess the disease and its associated warning signs. By doing this, a lot of questions come into mind including what is diabetes, what side effects are associated with it, and what might be wrong? The diabetes patient then unravels the underlying reasons for the illness; heredity, environmental factors, or the way of life. This is where the patient finds out about the real causes of the diseases and the timeline the disease will linger. The patient then asks what can be done to control or cure the disorder. Hence, if the patient perceives the illness to last long, then there will be higher psychological effects (depression or distress). Furthermore, the patient will also assess all the treatment regimens to see which of them is appropriate for controlling the disease. For instance, the patient will start eating a healthy diet and on time, engaging in exercises, complying with medication, etc. As such, if he or she notices a reduction in his or her levels of complications and psychological distress, then he or she is more likely to adhere to these regimens. 17 Review of Related Studies Several studies have been conducted on diabetes, its challenges, complications, self- care activities, and psychological outcomes. This section reviews some of such studies. The lived experiences, management, and barriers of self-care management The lived experiences of people with diabetes have attracted numerous studies. Mwila, Bwembya, and Jacob (2020) conducted a qualitative study in Lusaka to explore the lived experiences of older people with type 2 diabetes mellitus. Twenty-eight (28) participants were sampled and interviewed through the purposive sampling technique. The data obtained was analyzed using Atlas. ti 7. The outcome of the investigation revealed that persons with diabetes experienced mental challenges such as depression, stress, and frustration as well as physical illnesses such as fatigue, headache, and lower limb numbness. This was largely precipitated by inadequate social support, non-adherence to medication regimen, lack of communication materials, financial problems, and inadequate education. Mwila et al. (2020) concluded that people living with diabetes should be provided with psychosocial therapy as well as self-care education. Although the study made use of Atlas. ti 7 which makes analysis easier and faster, it does not allow the researcher to have a closer interaction with the data gathered. Thus, might affect the interpretation of the data. In a similar study conducted in Thailand Boonsatean, Carlsson, Ostman, and Rosner (2016) explored the lived experiences of 19 women living with type 2 diabetes in a low-income community. Data was collected using a semi-structured interview guide and was analyzed using thematic analysis. The outcome of the study revealed that the women were confronted with emotions such as worry about the future, the unpredictable nature of the disease, and the effect the disease might have on their families. Despite these, they maintained a balanced life through their inner and outer beliefs in the Buddhist teachings. Their beliefs in Buddhism served as coping strategies to remain calm and cope with the psychosocial challenges 18 associated with diabetes. Boonsatean et al. (2016) also indicated that persons living with diabetes require high social support to cope with the complications. The study concluded that as a means to ensure holistic care for patients living with diabetes, Buddhist beliefs could be used to assist Thai patients to manage the psychosocial issues surrounding diabetes. However, this study consisted of only women in a low economic community. Kaur, Tee, Ariavatnam, Krishnapillai, and China (2013) assessed the prevalence of depression, anxiety, and stress among patients with diabetes in an urban community in Malaysia. This study was cross-sectional and 2,508 patients were recruited for it. The Depression, Anxiety, and Stress Scale (DASS 21) was used to measure the depressive, anxiety, and stress symptoms of participants. The outcome of the study indicated a high prevalence rate of depression (11.5%), stress (30.5%), and anxiety (12.5%) among the participants. Diabetes duration, gender, unemployment, and lack of exercise were reported as significant predictors of depression, anxiety, and stress. Kaur et al. (2013) concluded that regular screening of depression, anxiety, and stress are essential for patients with living diabetes. Studies have also assessed the management practices and coping strategies of persons with diabetes. Ramkisson, Pillay, Sibanda (2017) explored the coping strategies and well-being of patients with type 2 diabetes in Kwa Zulu-Natal. A total of 401 patients were sampled for this study. The Diabetes Care Profile (DCP), General Health Questionnaire (GHQ), Social Support Questionnaire (SSQ), and WHO – 5 were used to measure diabetes beliefs and self- care, emotional distress, social support, and well-being respectively. The result of the study revealed an inverse relationship between social support and emotional distress. Furthermore, there was a positive relationship between social support and well-being. Ramkisson, Pillay, and Sibanda (2017) reported that although the participants were satisfied with the amount of social support they received, they still had challenges in coping with the disease. 19 Engstrom, Leksell, Johansson, and Gudbjörnsdottir (2019) to describe significant areas in the life of grown-up individuals with diabetes in Sweden. This qualitative study tested 29 adult patients with diabetes who were able to talk about their condition. The 29 patients consisted of 15 type 1 and 14 type 2 patients with diabetes, selected through purposive sampling. The study sampled only those adults who could describe their experiences in only Swedish, and therefore those who could not speak Swedish were excluded. The findings of the study indicated that diabetes management may be problematic especially when there is a poor support system from relatives and health-care providers. It was reported that the patients found it difficult to take constant medications and live a healthy lifestyle when support systems were weak. In this study, the patients had to manage themselves to attain a good and constant blood sugar level and live a usual life. In Ghana, Korsah (2015) assessed the management strategies of patients with diabetes. Fifteen people with type 2 diabetes from Accra were purposively sampled for the study. Data was gathered through interviews in Twi (local dialect) and English language and analyzed using the hermeneutic phenomenological approach. The outcome of the study revealed that majority of the participants’ comprehension of the causes and treatment of diabetes was largely influenced by their spiritual belief system. Korsah (2015) reported that all participants held strong spiritual beliefs about the causes of their disease. It was believed that relatives and friends must have used spiritual powers to inflict the disease upon them thus affecting patients’ ways of coping. Therefore, he recommended strong cooperation and a combination of both orthodox healthcare and traditional health care systems to provide holistic care to patients with diabetes. Mogre, Johnson, Tzelepis, and Paul (2019) assessed the hindrances to self-care activities among Ghanaians with type 2 diabetes. Semi-structured interviews were used to gather data from 23 patients and 14 health care professionals and the data was analyzed using 20 the constant comparative technique. The analysis revealed that ascribing the disease to spiritual factors, the absence of inspiration to work out, occupied calendar, absence of glucometers, trouble in changing old habits, absence of family support, social shame, and utilization of natural medications were noteworthy obstructions to self-care management practices among the participants. Since this study was conducted in the Northern part of Ghana, it is highly unlikely to obtain people from diverse backgrounds. Hushie (2019), however, explored the barriers and facilitators of self-care activities among patients with type 2 diabetes in Accra, Southern Ghana. Thirty-three patients with type 2 diabetes were purposively recruited for the study. In-depth interviews were used to solicit information from the participants. The interviews were recorded, transcribed, and later analyzed using thematic and content analysis. Findings showed patients experienced inter- related challenges with diabetes self-care such as lack of family support, fear about the disease, and negotiations on recommended dietary patterns. In as much as this study was conducted in Accra, it focused on dietary practices, however, other approaches to the barriers of self-care (exercise and medication) are necessary for the development of suitable interventions to help bridge these barriers. In summary, it can be noted that these studies have generally focused on barriers, coping strategies, and lived experiences of patients with diabetes. However, these studies did not explore how patients cope with living with diabetes complications and its impact on psychological health. Relationship between self-care, diabetes complications, and quality of life. With regard to the relationship between self-care and quality of life, Babazadeh et al. (2017) examined the factors associated with the quality of life of 120 patients with type 2 diabetes. This cross-sectional study was carried out at the health center of Chaldoran, West Azerbaijan Province, Iran. Data was collected using the World Health Organization Quality of 21 Life Scale (WHOQoL- BREFF) and the Self-care behavior scale. The result of the study indicated that self-care (diet, blood glucose, and medication) was significantly and positively associated with quality of life. Quality of life of the participants was higher for those who were males, had higher educational status, had a good economic status and younger age whilst older age was associated with a lower quality of life. Another randomized control study to examine the effect of physical activity on quality of life among one hundred patients with diabetes was carried Taphesari et al., (2020). Subjects were randomly assigned to either an intervention or control group. Patients were made to complete the WHO QOL-BREF scale after three months of the intervention group receiving the intervention. The study reported a significant difference in the quality of life of the experimental group. At the end of the study, a significant difference was observed in the physical, environmental, and psychological components of quality of life among the experimental group. However, there were no differences were observed in the social component between both the experimental and control groups. Similarly, Zhang, Huang, and Peng (2020) conducted a study to examine the effect of physical activities on the quality of patients with type 2 diabetes in Southern-Eastern China. Two hundred and fifty-five (255) patients were employed for this study. The Long International Physical Activity Questionnaire (IPAC-L) and the Diabetic Miletus Quality of Life Scale (DMQLS) were used to assess physical activities and quality of life respectively. The findings of the study revealed a positive correlation between physical activities and the physical, social and psychological dimensions of quality of life. Zhang, Huang, and Peng (2020) concluded that there was a need for various strategies to promote physical activities among patients living with diabetes to increase more positive outcomes. It was further recommended that subsequent studies should use different scales to explore the relationship between physical activities and quality of life. 22 Alfian, Sukandar, Lestari, Abdulah (2016) conducted a cross-sectional study to examine the relationship between medication adherence and quality of life among patients living with type 2 diabetes in Indonesia. Ninety-one (91) patients were consecutively sampled for this study. The Morisky Medication Scale was used to assess medication adherence whilst the Diabetes Specific Quality of Life Scale was used to measure quality of life. The outcome of the study showed that 49.4% of the participants exhibited low medication adherence, 29.7% exhibited medium medication adherence and 20.9% exhibited high medication adherence. Also, a significant positive relationship between medication adherence and quality of life was reported. Patients with lower socioeconomic statutes were reported to have a lower quality of life. Ababio et al. (2017) conducted a study on the predictors of quality of life among patients with diabetes in Ghana and Nigeria. A total of 401 patients with type 2 diabetes (198 from Ghana and 203 from Nigeria) were recruited for this study. The WHO-BREF, Diabetes Knowledge Scale, and Diabetes Empowerment Scale were used to measure quality of life, knowledge of diabetes, and diabetes empowerment respectively. Data was analyzed using multiple regression. The findings of the study revealed that medication adherence, diabetes empowerment, and socioeconomic status were significant predictors of quality of life. Jin et al. (2018) conducted a systematic review on the predictors of quality of life among patients with type 2 diabetes. Eighteen published studies from the Cochrane Library, Embase, PubMed, and CNKI databases were evaluated to identify the related factors of quality of life. Data were analyzed using STATA software and results showed regular physical exercises and blood sugar glucose monitoring were associated with a better quality of life. Other factors such as depression, longer duration of diabetes, poor diet (diet with more red meat), and the presence 23 of complications were associated with a worse quality of life. Though the eighteen studies were included in this review studies, there were vast differences (years of publication and many different quality of life scales used) among the included studies and this could have affected the accuracy of the results obtained. Moreover, Zhao, Suhonen, Katajisto, Stolt, and Leino-Kilpi1 (2019) conducted a study to evaluate the association between diabetes-related self-care activities in association with positive health outcomes (resilience, subjective wellbeing, and disease-related quality of life). The study was cross-sectional and made up of 246 patients recruited from two tertiary hospitals located in Eastern China. The Diabetes-Related Self-Activity Scale (DRSCA), the 10-item Connor Davidson Resilience Scale (CD-RISC), the WHO 5 Well-being Index, and the Diabetes-Related Quality of Life (DRQoL) were used to measure self-care activities, resilience, wellbeing, and quality of life respectively. Also, data on social support and demographics were obtained. Data were analyzed using hierarchical multiple regression. The results of the study indicated diabetes-related self-care activities had a significant association with improved well- being but not with resilience and quality of life. In a cross-sectional study conducted by Quah, Ng, Luo, How, and Tay (2011) on the association between health-related quality of diabetes complications and other clinical predictors among 699 patients with diabetes, the Short Form 36 Health Survey (SF-36) and the EQ-5D self-report questionnaire were used in measuring quality of life. Multiple regression was used to analyze the data obtained and the result indicated that the high quality of life of the patients was associated with being male, employed, having a higher educational background, younger age, and exercise. However low quality of life was associated with diabetes complications such as stroke, eye problems, peripheral neuropathy, and vascular diseases. Furthermore, Alramadan et al. (2019) assessed the factors associated with microvascular and macrovascular complications among 1,121 patients with diabetes in Saudi 24 Arabia. Data for this study was obtained from participants’ records and laboratory reports. Multiple regression was used to analyze the relationship between patients’ lifestyles and diabetes complications. The results of the study indicated that physical inactivity, smoking, and obesity were risk factors for developing diabetes complications such as coronary artery disease, stroke, neuropathy, retinopathy, and diabetic foot. However, obtaining data from patients’ lab and hospital reports is subject to human (clinician) error and this might consequently affect the result of the study. Similarly, Yaghoubi et al. (2019) examined the prevalence of diabetes complications and its determinants among patients with diabetes in Canada. The data for this study was obtained from the 2011 Canadian Survey on Living with diabetes. It was reported that 80.3% of patients with diabetes reported suffering from at least one type of diabetes complication. Data was analyzed using logistic regression. The results of the study revealed that being a female, low physical activity, and longer diabetes duration were positively associated with diabetes complications such as high blood pressure poor circulation, and cataracts. However, because of an inadequate comprehensive registry, other forms of diabetes complications were not included in the study. Rodriguez -Almagro et al., (2017) examined the association between health-related quality of life and its social, demographic, and clinical determinants. The study was an online clinical survey carried out between February and March. A total of 456 patients with diabetes in Spain were the participants in the study. A validated Spanish version of the self-administered diabetes quality of life scale was employed to measure quality of life. Data was analyzed using multivariate analysis. At the end of the study, the results indicated that there was a statistically significant association between the demographic factors (gender, education, and marital status) and at least one dimension of quality of life. Furthermore, health‐related quality of life 25 progressively worsens as glycaemic control deteriorates and with an increased number of disease complications. Diabetes duration, depression, diabetes distress, and quality of life. Not only does a relationship exist between self-care and quality of life as indicated in the previous studies above. Also, studies have reported a relationship between diabetes duration and quality of life. Among them is one by Jing et al. (2018) on the predictors of quality of life of type 2 patients with diabetes in Australia. The study searched meta-analytical databases published between January 2000 and May 2016 in the Cochrane Library, Embase, PubMed, and CNK using keywords capturing quality of life, diabetes stress, diabetes duration, and predictors of quality of life and selected 43 articles. The outcome of this study indicated a longer duration of diabetes has a significantly negative relationship with quality of life. None of the studies reviewed showed a significant relationship between age and quality of life of diabetes patients. Also, Abedini, Bijari, Miri, Emampour, and Abbasi (2020) explored the quality of life of patients with type 2 diabetes in Birjand. Using the systematic sampling technique, 300 patients were recruited for the study. Data was obtained through medical records, laboratory reports, demographic information, and the EQ-5D-5L questionnaire. The findings of the study revealed that diabetes complications, diabetes duration, age, and gender were significantly associated with quality of life. Patients with more diabetes complications and diagnosed with diabetes for over 10 years were reported to have a lower quality of life. In as much as data were obtained from patients' medical records, the study did not follow the PROM’s (Patient Reported Outcome Measures) guidelines used for interpreting patients' medical records and this might influence the results of the study. Sparring, Nystorm, Wahlstorm, Jonsonn, Ostman and Burstrom (2013) investigated the relationship between diabetes duration and health-related quality of life. Eighty hundred and 26 thirty-nine (839) individuals with diabetes and 1564 control individuals were sampled for this study. Data was obtained using EQ-5D and demographics. The analysis of the study revealed that being female, having a low educational status and a longer duration of diabetes were positively related to a low quality of life. In explaining the relationship between diabetes duration and diabetes distress, Fisher, Glasgow, and Strycker (2010) assessed the four hundred and sixty-three (n=463) patients with type 1 diabetes. The participants completed measures of diabetes distress (Diabetes Distress Scale) and clinical depression (Patient Health Questionnaire 8). The findings of the study indicated that there was a significant negative relationship between diabetes duration and psychological distress (diabetes distress and depression). However, only the regimen subscale of the diabetes distress scale was used in this study and this might affect the results of the study. Another study was conducted by Jat, Bhutto, Hussain, and Anwar (2019) to determine the relationship between anxiety, depression, and diabetes duration among 194 patients with type 2 diabetes. The Beck Anxiety and Depression Inventories were used to measure anxiety and depression. The participants were grouped into three (3) based on their duration of diabetes; (less than 5 years, 5-7 years, and greater than 7 years). From the analysis of the study, depression had a significant positive relationship with diabetes duration but anxiety did not. The results of the study further revealed that participants diagnosed with diabetes for over 7 years experienced the highest form of depression, followed by those diagnosed within 5-7 years and then those diagnosed for less than 5 years. Baek, Tanenbaum, and Gonzalez (2014) investigated the association between the duration of diabetes and diabetes distress. One hundred and nineteen (119) (29% Latino, 61% Black, 25% White) were selected to complete validated measures of diabetes distress and social support. Multiple linear regression was used to analyze the association between diabetes 27 duration and diabetes distress. The study indicated that the duration of diabetes condition was related positively with diabetes distress however the relationship was moderated by social support. Nanayakkara et al. (2018) conducted a study aimed at investigating the association between diabetes duration and psychological distress among adults with type 2 diabetes in Australia. Psychological distress assessed were depression and diabetes distress. A total of 2,552 adults with type 2 diabetes took part in the study. Data were collected using the Brief Case find for Depression and the Diabetes Distress Scale. The outcome of the study revealed diabetes duration was significantly positively correlated with depression and distress. The study also indicated age and educational status had no significant relationship with diabetes distress and depression. Diabetes complications, diabetes distress, depression, and quality of life. Investigating the relationship between depression, diabetes distress, and complications have revealed contradictory results. Whilst some studies showed that diabetes complication is a risk factor for psychological distress, others have reviewed contradictory findings. Arifin et al. (2019) conducted a study by comparing diabetes distress between primary and tertiary care patients with type 2 diabetes. The study also assessed whether diabetes complications had a significant impact on diabetes distress. The study involved three primary care and four tertiary care facilities in Bangladesh. The Bahasa Indonesia version of the Diabetes Distress Scale questionnaire (DDS17 Bahasa Indonesia) was used to measure diabetes distress. Ordinal regression analysis was conducted with the summation of the diabetes distress score as the dependent variable in the model. The results revealed that some independent factors were significantly positively associated with higher diabetes distress. For instance, it was reported that patients having two or more complications and a high fasting blood glucose status (FBG) had a higher level of diabetes distress. 28 Ismail et al. (2017) explored the relations between diabetes complications, depression, and diabetes distress among patients with type 2 diabetes in South London using a correlational design. The study selected 1,651 adults sample using a convenience sampling technique. The Patient Health Questionnaire-9 (PHQ-9) was used to assess depressive symptoms whereas the Problem Area in Diabetes (PAID) was used to assess diabetes distress. Data was analyzed using univariate analysis. Findings showed depression was positively related to an increased incidence of macrovascular complications but not microvascular complications. However, diabetes complication was not associated with diabetes distress. Furthermore, Jacob and Kostev (2015) conducted a longitudinal study on depression among German patients with type 2 diabetes, with or without diabetes complications. The study selected 90,412 patients with type 2 diabetes within 2004–2013 as participants. The main outcome of the study revealed majority of the patients had diabetes complications. The prevalence of depression was higher in females (33.7%) than in males (26.8%) and patients with two or more diabetes complications (37.7%) than those with no complications. Specifically, retinopathy, neuropathy, nephropathy, coronary heart disease, stroke were associated with depression. However, the study utilized a longitudinal design. The longitudinal design is influenced by environmental confounding variables such as time intervals. A study by Ferreira et al. (2015) reported no relationship between metabolic outcomes, diabetes complications, and depression. This study recruited 214 outpatients, 105 patients with type 2 diabetes, and 109 non-diabetes patients between the ages of 50-75. Beck’s Depression Inventory was used to assess depression while diabetes complications were self-reported by the participants. The results of the study showed that patients with type 2 diabetes reported the highest levels of depressive symptoms. 29 Studies have also indicated that diabetes complications negatively affect quality of life. Venkataraman et al., (2012) assessed the association between diabetes complications and health-related quality of life among patients with diabetes. The association between diabetes retinopathy, coronary heart disease, stroke, peripheral arterial disease, nephropathy, and health- related quality of life were examined. A total sample of 2,601 participants comprising of 2,205 healthy participants and 396 patients with diabetes were used for the study. The SF-36 version 2 health survey was used to measure health-related quality of life, while diabetes complication was assessed using self-reports, clinical, and laboratory investigations. The results indicated that diabetes-related complications and health-related quality of life are inversely related. Among all the complications examined, peripheral neuropathy was strongly associated with the most reduction in HRQoL, across all domains. Also, severe retinopathy was associated with a significant reduction in HRQoL in the domains of general health, physical and social functioning, and physical and emotional role. Coronary heart disease and stroke were negatively associated with only physical domains, while peripheral arterial disease and nephropathy were not associated with a reduction in HRQoL. Similarly, Stojanovic et al. (2018) conducted a cross-sectional study on predictors associated with health-related quality of life (HRQOL) in 285 patients with diabetes at General Hospital at Leskovac, Serbia. The Short Form-36 (SF-36) questionnaire, EuroQol-5D (EQ- 5D), and EuroQol-VAS (EQ-VAS) questionnaires were used to assess health-related quality of life. Patients’ medical records were examined for clinical data. Univariate and multivariate linear regression analyses were used in data analysis. At the end of the study, the socio- demographic variables indicated that age, country (rural) life, retirement education, employment, poor economic status, and low level of education were significant predictors of lower quality of life. Further, the analysis revealed that micro and macrovascular complications (angina pectoris, heart failure, diabetic retinopathy, and diabetic nephropathy) were the very 30 crucial factors affecting the quality of life of the patients. Diabetes complications were found to be independent risk factors for the component scores of SF-36 and EQ-VAS scores. Niraula et al. (2013) conducted a study on the prevalence of depression and its risk factors among patients with diabetes in Nepal. Three hundred and eighty-five (385) patients with diabetes were sampled for the study. A validated Nepali Version of Beck’s Depression Inventory was used to assess depression and a semi-structured questionnaire was used to obtain participants’ and behavioral characteristics. The findings of the study revealed that being a female, having at least one diabetes complication, and high blood positively correlated with high levels of depression. Pham et al., (2020) explored the effects of diabetes complications and comorbidities on the health-related quality of life of patients in Vietnam. A total of 214 patients with diabetes were recruited for the study. This was a cross-sectional study that made use of Short form 12 version 2 (SF-12v2) and EuroQOL-5 Dimensions-5 Levels (EQ-5D-5L). Multivariable regression was used to compute the effects of having one or more complications on SF -12 outcomes. The findings of the study indicated that patients having at least one complication had a reduction in their SF-12 scores specifically in social functioning, role emotion, and mental component score. The study also revealed that the health-related quality of life of patients with diabetes complications was moderately low, especially in social and psychological perspectives. Furthermore, patients living with diabetes suffering from heart diseases experienced a significant reduction in physical, social functioning, and role reduction than patients without complications. 31 Rationale of the Study The studies reviewed above have provided some insight into the issue of diabetes complications and quality of life (Quah et al., 2011; Rodriguez- Almagro et al., 2017; Yaghoubi et al.,2019), as well as diabetes distress and depression (Novak et al.,2016; Ismail et al., 2017). The studies reviewed so far utilized the quantitative cross-sectional design (Jacob & Kostev, 2015; Stojanovic et al., 2018). The quantitative method does not account for social reality and how people interpret their experiences. The qualitative studies reviewed on the other hand focused mostly on the prevalence (Thailand, 2016), adherence (Mogre et al; 2017, barriers (Hushie, 2017), determinants of self-care activities, and the association between diabetes distress and self-care (Nugbey et al., 2017). However, qualitative data lacks reproducibility because it relies heavily on the researcher’s biases. In as much as such biases are controlled, the preset goals of the researcher make such checks inadequate. Using a mixed-method would have been a desirable approach since the limitations in one approach will be compensated by the other (Creswell, 2014). Moreso, the findings of either the quantitative or qualitative design could be used to explain one another to acquire a more comprehensive understanding of a phenomenon. In the Ghanaian setting, the predictors of quality of life and psychological distress—health beliefs, diabetes management empowerment, and employment—have been assessed (Ababio et al., 2018; Sarfo, et al., 2015). However, there is a lack of studies on diabetes complications and its implications (Annani-Akollor, 2017). The methods used by existing studies are not adequate to reveal the lived experiences and the influence of diabetes complications and self-care on psychological outcomes. Therefore, this thesis seeks to use both quantitative and qualitative approaches to evaluate lived experiences, diabetes complications, self-care, and psychological outcomes (depression, diabetes distress, and quality of life) of patients with type 2 diabetes in Ghana. 32 Statement of Hypotheses Based on the aims of this study and related studies reviewed, the following hypothesis were tested: 1. Patients with two or more complications will experience higher levels of depression and diabetes distress than patients with no complications 2. Patients with two or more complications will report poorer quality of life than patients with no complications. 3. Patients with two complications will engage in more self-care activities (exercise and medication) than patients with no complications. 4. Self-care activities (exercise and medication) will significantly predict quality of life. 5. Diabetes duration will significantly predict psychological distress (diabetes distress and depression) and quality of life. Research Questions for the Qualitative Study 1. What are the lived experiences of people living with type 2 diabetes? 2. What are the challenges of self-care management among people with type 2 diabetes? 3. What are the emotional responses of people living with diabetes about their diabetes complications? 4. What are the management and coping strategies adopted by people living with type 2 diabetes? 33 Chapter Three Methodology Research Design The mixed-method design was used for this study, specifically, the sequential explanatory mixed-method was used. The quantitative data was collected first and analyzed and afterward, the qualitative data was collected and analyzed. The explanatory-sequential approach which augments quantitative findings with qualitative findings was used. Because most of the hypotheses from the quantitative data were not supported, a qualitative study was conducted to obtain a richer explanation of the lived experiences of people living with type 2 diabetes. Research Setting The research settings were Achimota Hospital, Ridge Hospital, and La Hospital in the Accra Metropolitan district of the Greater Accra Region of Ghana. Though the Greater Accra Region is the smallest region of Ghana’s regions, it was chosen as the setting for this study because it is the most urbanized and populated region in Ghana with residents and dwellers from diverse backgrounds and other regions in Ghana. The region has a total population of 4,010,054, accounting for 16.3% of the total Ghana population. (Ghana Statistical Service, 2010). Greater Accra Region has a total land surface of 3,245 square kilometres with seventeen (17) districts, two (2) metropolitan assemblies, ten (10) municipal assemblies, and five (5) district assemblies (Local Government Service, 2015). These study areas as stated above were chosen because they are all situated in Accra and also, the healthcare providers in these hospitals are well trained in diabetes care. Again, the use of these hospitals offered the opportunity to obtain enough participants for testing. 34 The first study area, Achimota Hospital, is located within Okaikoi Sub-Metropolitan District of Greater Accra. The Hospital is believed to have started in 1927 to cater for the health needs of the staff and pupils of Achimota School and other neighbouring schools until when it was taken over by the Ministry of Health in 1973. In 1973 the hospital was handed over to the Ministry of Health and was declared accessible to the public. The hospital now takes care of the health needs of other educational facilities and people within and outside the district. Services provided by the hospital include general outpatient services, maternal health services, minor surgical services, and diabetes endocrinology services. The Ridge Hospital, the second study area, is currently known as the Greater Accra Regional Hospital and is considered to be one of the major hospitals in Greater Accra. The Hospital, situated at North Ridge in the Osu-Klottey Sub-Metropolitan District in Accra was established by the British in 1928. The hospital underwent a recent renovation to meet the growing demands for quality healthcare in the region, making it an ultra-modern 620-bed capacity hospital. Services provided by the hospital include outpatient services, diabetes and endocrinology service, neonatal intensive care, accident & emergency services, cardiology services, and general surgical services. The third study area selected was the La General Hospital. The hospital is in the La Dade-Kotopon Municipality in the Greater Accra Region. The hospital began as a polyclinic in 1963 to provide health care services to the public and also serves as a referral unit for other private hospitals. The hospital provides numerous healthcare services, among them are; ear nose and throat services, outpatient services, laboratory services, radiotherapy, diabetes services, paediatrics services, obstetrics, and gynaecological services, accident, and emergency services. 35 Population, Sample, and Sample Size Determination The population for the study was people diagnosed by professionals as having type 2 diabetes at Achimota, Ridge, and La hospitals. Participants eligible for the study were 1) aged between 18 – 60 years and 2) having type 2 diabetes for at least one year. Participants were excluded if 1) they had recently changed (<6 months) their medication from tablets to insulin injections, 2) had co-existing major comorbidities such as chronic pain, end-stage renal disease, and 3) Had experienced or is experiencing emotional problems in the past 6 months. The sample size of the study was 123 people living with diabetes. The selection of 123 respondents was based on Tabachnick and Fidell’s (2012) method for sample size calculation which suggests: N> 50+8M, where N represents the sample size and M represents the number of independent variables (diabetes complication and self-care). According to Tabachnick and Fidell (2012), this formula helps one derive the minimum sample size when using multiple regression. Since there were two (2) independent variables, the sample size was calculated as N> 50+8(2), suggesting the minimum sample size for the present study to be 66. To obtain the subjective views of people, a qualitative method of gathering data is more profound in obtaining distinct experiences, beliefs, perceptions, and meanings. As a result, this study employed a qualitative method to capture the unique perceptions, beliefs, perceptions of patients with diabetes with regards to their self-care practices and complications. Eight (8) patients with type 2 diabetes, four males and four females with ages ranging from 48 – 75 were recruited for the study (see table 7 for details). According to Guest, Bunce, and Johnson (2006), a minimum of 10 in-depth interviews are adequate to reach saturation and generate codes and themes in a qualitative study. However, because the quantitative was collected ahead of the qualitative, COVID 19 affected the number of participants (N=8) for the qualitative study. The selection of the participants was done using a convenient sampling technique. This is because participants were selected based on availability and willingness to participate. 36 Quantitative Study Instruments. Data was collected using a questionnaire that had 4 sections measuring, demographic variables, diabetes self-care activities, psychological distress, and quality of life (See Appendix IV). The demographics section solicited information such as gender, age, employment status, religion, diabetes duration, diabetes complication, weight, body mass index, and glycated haemoglobin levels. For the diabetes self-care activities section, the Summary of Diabetes Self-Care Activity (DSCA) scale was used. It is a 12-item scale developed by Toobert and Glasgow (1994). It assesses five specific domains of diabetes self-management namely dietary intake, medication, blood glucose monitoring, and exercise. The scale is based on a self-reported frequency of carrying out recommended activities in the past seven days. It has a Cronbach alpha of .74. The Cronbach alpha for the subscales ranges from .54 to .84. (Jalaludin, et al. 2012). A Psychometric evaluation of the summary of diabetes self-care activities measure in Ghanaian adults living with type 2 diabetes yielded an overall internal consistency of .68. The scale was reported to have content validity and not construct validity (Mogre, Abanga, Tzelepis, Johnson & Paul, 2019). In this present study, exercise and medication were measured and these sub-scales yielded a Cronbach alpha of .76 and .71 respectively. Scores were converted to T and Z scores. Higher scores on this subscale indicate better self-care activities. Items 1, 4, 5, 11, and 12 were re-coded in this study. Psychological distress in this study was defined as experiencing diabetes distress and/ depression symptoms and thus, measured as such. The diabetes distress scale developed by Polonsky et al. (2005) was used to measure diabetes distress. The DDS is a 17-item scale that captures four critical dimensions of diabetes distress: emotional burden, regimen distress, interpersonal distress, and physician distress. Participants responded to the items on a five- point Likert scale ranging from 1 (not a problem) to 6 (a very strong problem). The scale has a 37 Cronbach alpha of .87 (Polonsky et al. 1995). The Diabetes Distress Scale has been previously used to measure self-care among patients with type 2 diabetes in Ghana. The scale was found to have good validity and reliability (Cronbach’s alpha for all scales = .86). (Amankwah-Poku, Amoah, Sefa-Dede & Akpalu, 2020). The Cronbach alpha for this present study is .86. Items on this scale are scored by either using the sub-scales or finding the composite score of all the items. For this present study, the total composite score was calculated and then divided by 17. A mean item score between 2.0 -2.9 was considered as moderate distress and a mean item score ≥ 3.0 is considered as a level of high distress. Beck Depression Inventory was developed by Beck in 1961 and revised by Beck et al. in 1988. The BDI measures an individual’s characteristics and depressive symptoms. It's a 21- item multiple-choice scale on a four-point Likert scale ranging from the absence of depressive symptoms (0) to the severity of depressive symptoms (3). The scale is scored from 0-3, yielding a total score ranging from 0-63 and interpreted as follows: 0-10 normal; 11-16 mild depression; 17-20 borderline depression; 21-30 moderate depression 31-40 and above 41 severe depression. The Cronbach alpha of the scale is .90 (Wang & Gorenstein, 2013). The BDI has been used to measure depressive symptoms in Sub-Saharan Africa and has been found to have a good reliability [Cronbach's alpha = 0.90] (Kagee, Nel & Saal, 2014). The Cronbach alpha of the scale in this present study is .85. For the section on quality of life, the WHO Quality of Life Scale (WHOQOL-BREF) was used. It is a 26-item scale that assesses four domains of quality of life. These domains are physical health, psychological health, social relationships, and environmental health. The physical health domain includes items on daily activities, functional capacity, energy, pain, sleep, and mobility. The psychological domain has items that measure positive attitudes, mentality self-image, negative thoughts, self-esteem, mentality, learning ability, religion, and memory concentration. The social relationship domain contains items on sex life, personal 38 relationships, and social support. The environmental health domain has items on financial resources, recreation, safety, health, and social services, living physical environment, opportunities to acquire new skills and knowledge. It is a five-point ordinal scale. Scores are transformed linearly to a 0–100-scale. The overall Cronbach alpha for the scale is .89 with its four domains having their Cronbach alpha values as follows; physical domain (0.72), psychological domain (0.76), social domain (0.62), and the environmental domain (0.75) (Mazaheri, 2010). For this present study, the scale yielded an overall Cronbach alpha of .87. Procedure A letter seeking permission to conduct the study acquired from the Department of Psychology (UG) in addition to the research proposal and other relevant materials were submitted to the Ethics Committee for Humanities (ECH) for the approval of this study. After permission was sought from the Ethics Committee for Humanities, the ethical clearance, proposal, an introductory letter, and other relevant documents were sent to the selected hospitals to seek permission for data collection. Approval was obtained, and dates were scheduled and data collection commenced. The services of some assistants were employed for the data collection. These assistants were well trained in the administration of the questionnaires. Before each participant participated in the study, an informed consent form was administered to him or her their approval. Participants were informed about the aim of the study and their right to withdraw at any time. The data collection of the quantitative part of the study was done, followed by the qualitative. Items in the scales used in the quantitative study which were difficult to be understood by the participants were orally translated into a local dialect. For those who participated in the interviews, they were assured that their voices were not going to be used directly in the study but rather their experiences with the disease. 39 Ethical Consideration First and foremost, ethical clearance was sought from the Ethics Committee for Humanities, the Achimota Hospital as well as the other hospitals. After approval was granted, an introductory letter from the Psychology Department was sent to the hospital unit heads to seek approval for data collection. When granted permission, discussions were held with the hospital authorities to determine the patients who were eligible to participate in the study. Participants were informed about the aim of the study. Participation in the research was voluntary and participants were assured of confidentiality. Informed consent was sought from the participants and they also assured that information gathered was going to be used within the confinement of this research. The quantitative data was obtained first after which the qualitative interviews followed. Data Analysis Quantitative Data. The data for the quantitative study was analyzed using the Statistical Package for Social Sciences (SPSS version 23). The specific statistical tools used for the various hypotheses are presented below; Hypotheses one to three were analyzed using Multivariate Analysis of Variance (MANOVA). MANOVA was used because the hypotheses were testing comparisons existing between the various levels of the independent variables on the dependent variables. Moreover, the hypotheses had multiple dependent variables of which were all measured on an interval scale. The fourth hypothesis which stated that “self-care activities (exercise and medication) will significantly predict quality of life” was measured using standard multiple regression. A standard multiple regression was used because the hypothesis was testing relationships between several independent variables and a dependent variable. That is, the study was looking out for the variance in the dependent variable that is explained by the various independent 40 variables. The fifth hypothesis that diabetes duration will significantly predict diabetes distress, depression, and quality of life was analyzed using Simple Linear Regression. Simple linear regression was used because the hypotheses were testing the relationship between one independent variable and several dependent variables. Hence, each dependent variable was separately regressed on the independent variable. Qualitative Study. Experiences related to diabetes complications and challenges of diabetes self-care practices were gathered through interviews using a semi-structured interview guide made up of open-ended questions. The interviews comprised of a demographic section to obtain basic demographic information from the participants and an interview guide section. The interview guide had seven questions with probes (See Appendix V). These questions focused on obtaining information about participants’ reactions to their diagnosis, treatment received at the hospital, challenges with self-care, and how they felt about diabetes complications. Qualitative data were analyzed using thematic content analysis (Braun & Clarke, 2006), which requires six (6) basic steps (Braun & Clarke 2006). These steps are 1) familiarizing yourself with your data (that is read and re-read the data severally to get accustomed to the data), 2) generate initial codes by noting how and where the patterns occur, 3) generate initial themes by evaluating how the codes form over-reaching themes, 4) reviewing the themes, 5) define and name the themes and 6) producing a report. Thus, the study adhered to the six requirements of Braun and Clarke. First, the interviews were transcribed verbatim. To get more conversant with the data, transcriptions were read repeatedly, after which coding was done by condensing larger data sets into smaller units. Themes were further developed by combining different codes. These themes were then reviewed, defined, and named, after which a report was written. 41 By reading the transcripts and through immersion, repeated ideas on self-care, diabetes complications, psychological distress, and coping strategies were noted. Initial codes were generated by reading through the transcripts to identify sections where references were made to adherence to self-care, how participants were diagnosed, their reactions, expressions of participants concerning diabetes complications, and how they coped. These codes were described and classified into various subthemes and then themes. Trustworthiness Trustworthiness is the degree of confidence in the methods, data, and interpretation of qualitative research (Pilot & Beck, 2014). To ensure the trustworthiness of the qualitative findings, steps by Shenton (2004) were followed. The first is credibility which refers to the researcher’s confidence in the accuracy of the research findings. In ensuring credibility, all the research settings were visited many times to get acquainted and familiar with the participants of the study. Furthermore, participants were asked to openly express their views. Iterative questioning which involves the use of probes were used to solicit in-depth information from participants. Secondly, Transferability refers to the extent to which the findings can be applied to other settings. In ensuring transferability, Lincoln & Guba (1985) propose that the research must provide adequate contextual information about the study setting to enable the reader to make transfers. As such, the research vividly described the settings, context, and individuals used in the study. Confirmability refers to how objective the study is, to minimize biases. Transcriptions were compared to the audios to ensure that the information was accurate. Finally, with supervision, the transcriptions were code into themes. 42 Reflexivity Reflexivity refers to the ability to minimize prior experiences, assumptions, cultural and political beliefs that might influence the research process ( Patnaik, 2013). In ensuring reflexivity, prior encounters with patients with diabetes, views, and reactions before this study were set aside to listen to the perspectives of the participants. 43 Chapter Four Results The study was conducted to examine the influence of diabetes complications and self- care activities on the psychological outcomes of people with type-2 diabetes. A sample size of 123 patients were sampled from Achimota, Ridge, and La Hospitals. The Statistical Package for Social Sciences (SPSS version 23) was used to analyze the data. This chapter presents patients’ socio-demographic characteristics, preliminary analysis, and inferential statistics of the quantitative data as well as thematic analysis of the qualitative data. Quantitative Study The sample for the quantitative study comprised of 123 patients with diabetes. The majority of the population were female. The ages of the participants fell within the range of 43 and 80 years. About 48.8% were either fully or partially employed and 51.2% had no form of employment or were retired. Of the participants 35.9% had no education at all or just basic education, 46.3% had secondary education, 11.4% had vocational educatio