African cultural values and psychological health UNIVERSITY OF GHANA COLLEGE OF HUMANITIES SCHOOL OF SOCIAL SCIENCES AFRICAN CULTURAL VALUES AND PSYCHOLOGICAL HEALTH IN ADULT PERSONS WITH SICKLE CELL DISEASE IN GHANA BY MICHAEL TETTEH ANIM (10016223) THIS THESIS IS SUBMITTED TO THE UNIVERSITY OF GHANA IN PARTIAL FULFILMENT OF THE REQUIREMENT FOR THE AWARD OF DOCTOR OF PHILOSOPHY DEGREE IN PSYCHOLOGY DEPARTMENT OF PSYCHOLOGY JULY, 2015 University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health i DECLARATION I declare that except for references to other peoples' works which have been duly acknowledged, this research work I carried out in the Department of Psychology, University of Ghana, Legon, under the supervision of Professor C. Charles Mate-Kole, Dr. Maxwell Asumeng, and Dr. Joseph Osafo, is the result of my own research work and that it has neither in part nor in whole been presented in this University or elsewhere for another degree. Candidate: …………………………………………………………………………… MICHAEL TETTEH ANIM This thesis has been submitted for examination with the approval of Principal Thesis Supervisor: …………………………………………………………… Prof C. Charles Mate-Kole Date:………………………………………… Second Thesis Supervisor:……………………………………………………………….. Dr. Maxwell Asumeng Date: …………………………………………. Third Thesis Supervisor:…………………………………………………………………. Dr. Joseph Osafo Date:…………………………………………. University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health ii Dedicated to all adults living with sickle cell disease in Ghana and West Africa. University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health iii ACKNOWLEDGEMENT AND APPRECIATION I thank my supervisors, Prof. Mate-Kole, and Drs Asumeng and Osafo for expert supervision. I thank Prof. Utsey, Prof. Belgrave, Prof. Konotey-Ahulu, and Dr. Kofi Anie in the US and UK. I thank Drs Nyarko, Atindanbila, Profs. S.A. Danquah, Opoku, Akotia; Ms Atefoe, Mr. Nuworza, and Gifty, all of the Department of Psychology Univ. of Ghana; Dr Kofi Kraffona, Mr Ackom, Profs. Adu-Oppong and Amonoo-Kuofi, Dr. Obiri-Yeboah, Mr Felix Yirdong, all of University of Cape Coast Medical School; and Mr. Charles Adongo of the Dept. of Tourism and Hospitality, UCC; thanks for your support and contributions to this thesis. I acknowledge the assistance of heads of health, religious, and educational departments that permitted me to collect data, viz. the sickle cell clinic, Korle-Bu Teaching Hospital; Cape Coast Teaching and University Hospitals, and elsewhere. Thank you to the sickle cell, healthy and diabetic study participants in hospitals, religious organizations, universities and homes who offered their time and life stories to help solve my research problem. I am indebted to my research assistants Felix Yirdong and Victoria Lawson; to Mary Ampomah, the nurses, doctors and administrators at the sickle cell clinic, Korle-Bu and all who helped me to collect data. I thank my PhD colleagues for diverse support, and my wife and children for being part of this PhD degree journey. Special thanks to librarians in Universities of Ghana, Cape Coast and Gloria of KNUST who sourced reading materials for this work. Big thanks to the University of Cape Coast for sponsoring this PhD project. I acknowledge the diverse assistance of my department and faculty members of School of Medical Sciences, UCC. I, however, take responsibility for the thesis content. University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health iv TABLE OF CONTENTS DECLARATION .......................................................................................................................... i ACKNOWLEDGEMENT AND APPRECIATION ..................................................................... iii LIST OF TABLES .................................................................................................................... viii LIST OF FIGURES .................................................................................................................... x LIST OF ABBREVIATIONS ...................................................................................................... xi ABSTRACT ............................................................................................................................... xii CHAPTER ONE- INTRODUCTION .......................................................................................... 1 Background to the Thesis ........................................................................................................... 1 Psychological Health Concerns in SCD .................................................................................... 4 Statement of the Problem ........................................................................................................... 8 General Aims and Objectives of the Study ................................................................................. 9 Relevance of the Study ............................................................................................................. 10 Organization of the Thesis ....................................................................................................... 11 CHAPTER TWO- THEORETICAL FRAMEWORK AND LITERATURE REVIEW ................ 12 Theoretical Framework and Basis of the Research ................................................................. 12 The Biopsychosocial Model ................................................................................................ 13 The Afrocultural Social Ethos Framework .......................................................................... 16 Religious Coping Theory ..................................................................................................... 17 Review of Related Literature ................................................................................................... 19 Overview of Sickle Cell Disease: Prevalence ...................................................................... 19 Effects of SCD on adult patients....................................................................................... 21 Spirituality and psychosocial functioning of individuals with SCD................................... 27 African cultural values and psychological health in SCD.................................................. 30 Psychological health complications among SCD and other chronic disease individuals . 35 Coping methods of SCD individuals ................................................................................. 39 Summary, Critique and Implications of Literature Review for Current Study .................... 50 Purpose and Design for a Two-Part Study ........................................................................... 54 Conceptual Framework of the Study Depicting the Hypothesized Model .......................... 57 Operational Definition of Terms .......................................................................................... 58 Research Hypotheses of Study One (Quantitative) .............................................................. 60 Research Questions of Study Two (Qualitative) .................................................................. 61 CHAPTER THREE: STUDY ONE (QUANTITATIVE) ............................................................ 62 Methodology ............................................................................................................................ 62 Research Design for Study One ........................................................................................... 62 University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health v Rationale for Quantitative Methodology in Study One ....................................................... 62 Research Setting .................................................................................................................. 63 Population and participants .................................................................................................. 63 The Sampling Method.......................................................................................................... 64 The Sample Size .................................................................................................................. 64 Inclusion Criteria ................................................................................................................. 66 Exclusion Criteria ................................................................................................................ 67 Sample Characteristics of Study Participants ...................................................................... 67 Sample Characteristics of SCD, Healthy and Diabetic Study Participants ............................. 68 Sample Characteristics of SCD, Healthy and Diabetic Study Participants ............................. 69 Research instruments: Description and psychometric properties ........................................ 70 Measures of African cultural values. ............................................................................... 70 The Africultural coping systems inventory (ACSI). ........................................................... 71 Measures of Spirituality and Religiosity .............................................................................. 72 Spiritual Wellbeing Scale (Paloutzian & Ellison, 1982) .................................................... 72 Measures of Psychological Health and Coping ................................................................... 74 Measure of Social Support and Coping ............................................................................... 77 The Multidimensional Scale of Perceived Social Support [MDSPSS] ............................... 77 Procedure for Survey ........................................................................................................... 78 Administration of the instruments in study one.............................................................. 82 Statistical Analyses .............................................................................................................. 84 Results of Study One (Quantitative) ......................................................................................... 86 Descriptive statistical results of study variables ................................................................ 100 Hypotheses Testing Results ............................................................................................... 102 Further Analyses and Findings .......................................................................................... 114 Discussion of Study One (Quantitative) ................................................................................. 123 Conclusion ......................................................................................................................... 137 CHAPTER FOUR: STUDY TWO (QUALITATIVE) .............................................................. 139 Methodology .......................................................................................................................... 139 Rationale for Qualitative Methodology in Study Two ....................................................... 139 Research Design ................................................................................................................ 141 Epistemological Basis of the Research Methodology and Method ................................... 142 Research Setting ................................................................................................................ 144 Target Population ............................................................................................................... 144 University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health vi Inclusion Criteria ............................................................................................................... 145 Exclusion Criteria .............................................................................................................. 145 Technique for Participant Selection and Sample Size ....................................................... 146 Data collection Tool ........................................................................................................... 147 Data Collection Procedure ................................................................................................. 147 Field Notes ......................................................................................................................... 149 Data Management .............................................................................................................. 149 Data Analysis Method........................................................................................................ 150 Methodological Rigor ........................................................................................................ 152 Ethical Considerations ....................................................................................................... 153 Results .................................................................................................................................... 155 Characteristics of Participants ............................................................................................ 155 Thematic Findings ............................................................................................................. 157 Summary of Findings ......................................................................................................... 183 Discussion of Study Two (Qualitative) Findings ................................................................... 185 Conclusion of Study Two (Qualitative) .................................................................................. 194 CHAPTER FIVE: GENERAL DISCUSSIONS ....................................................................... 195 Brief Overview of the Thesis ............................................................................................. 195 Summary of Key Findings of Study One (Quantitative) and Two (Qualitative) ............... 196 Comparing SCD Participants with Diabetic and Healthy Participants on Africultural Variables, Psychological Health, and Theoretical Model ............................................... 197 Biological factors and psychological health in SCD ........................................................ 201 Psychological factors and psychological health in SCD .................................................. 203 Social factors and psychological health in SCD .............................................................. 206 Spiritual/religious factors and psychological health in SCD ........................................... 208 African cultural values, Africultural coping and psychological health in SCD ................ 215 Preference of Coping Method among SCD Participants: Implications for Psychological Health. ............................................................................................................................ 219 Relationship of Socio-demographic and Disease Characteristics with Psychological Health. ............................................................................................................................ 221 Alternative Model of Coping for Individuals with SCD. ................................................. 223 Contributions of Thesis to Knowledge ................................................................................... 226 Conceptual/Theoretical Significance of the Study ............................................................. 226 Methodological Contributions and Significance of Research Approach ........................... 229 Contribution to Data Analyses Techniques and Practices in Ghana .................................. 231 University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health vii Contributions to Literature ................................................................................................. 231 Clinical Implications of the Findings ................................................................................. 233 Policy Implications of the Study ........................................................................................ 235 Limitations of the Research ................................................................................................... 236 Reflexivity: Ethical and Methodological Issues ..................................................................... 239 Recommendations .................................................................................................................. 243 Summary and Conclusion ...................................................................................................... 245 REFERENCES ....................................................................................................................... 252 APPENDIX A: Questionnaire ................................................................................................ 292 APPENDIX B: Semi-structured Interview Guide .................................................................. 300 APPENDIX C: Consent Form for SCD Persons ................................................................... 302 APPENDIX D: Details of Disease Characteristics of Sample.............................................. 310 APPENDIX E: Themes and Subthemes in Qualitative Data Analysis ................................... 311 APPENDIX F: Previous and Current Reliability Cronbach's Alphas for All Scales ............ 312 APPENDIX G: Models and Model Fit Indices for all Groups .............................................. 313 APPENDIX H: Further Exploratory Analyses Summary Tables ........................................... 318 APPENDIX I: Sample Characteristics of SCD, Healthy and Diabetic Study Participants ... 322 APPENDIX K: Principal Component Analyses Tables and Figures ..................................... 324 APPENDIX L: NVIVO Qualitative Analysis: Nodes and Models of SCD ............................. 339 APPENDIX M: Institutional Review Board Approval Letter ................................................ 340 University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health viii LIST OF TABLES Table 3.1: Sample characteristics of SCD, healthy and diabetic study participants ............... 68 Table 3.2: Factor Analysis of AWS………………………………………….……………………...88 Table 3.3: Factor Analysis of SWBS……………………………………….……………….………91 Table 3.4: Factor Analysis of BSI ............................................................................................ 94 Table 3.5: Factor Analysis of ACSI ......................................................................................... 97 Table 3.6: Factor Analysis of MDSPSS. .................................................................................. 99 Table 3.7: Descriptive statistics of study variables among SCD participants. ...................... 101 Table 3.8: Summary of Path Estimates for SCD Group. ....................................................... 103 Table 3.9: Moderating Effect of African Cultural Values ..................................................... 104 Table 3.10: One-Way Mancova Comparing SCD, Healthy and Diabetic Groups on GSI and AWS…………………………………………………………………………………………………….107 Table 3.11: One-way Mancova Comparing SCD, Healthy, and Diabetic Groups on ACSI, SWBS, and Social Support ..................................................................................................... 108 Table 3.12: Summary of the Path Estimates of the Healthy Group ................................... 11111 Table 3.13: Summary of Path Estimates of the Diabetes Group. ...................................... 11313 Table 3.14: Standard Multiple Regression of African Cultural Values Subscales on Psychological Health among SCD Participants .................................................................. 1155 Table 3.15: Standard Multiple Regression of Africultural Coping Subscales on Psychological Health among SCD Participants ......................................................................................... 1166 Table 3.16: Standard Multiple Regression of Spiritual Wellbeing Subscales on Psychological Health among SCD Participants ......................................................................................... 1177 Table 3.17: Multiple Regression of Social Support Subscales on Psychological Health among SCD Participants ................................................................................................................. 1177 Table 3.18: Standard Multiple Regression Comparing the Predictive Power of Specific Factors in the Biopsychosocial-Spiritual Model on Psychological Health ........................... 318 Table 3.19: Standard Multiple Regression Comparing the Predictive Power of Religion with Other Subscales on Psychological Health Among SCD Participants. .................................. 318 Table 3.20: Standard Multiple Regression Comparing the Predictive Power of Three Spirituality Measures on Psychological Health among SCD Participants............................ 318 Table 3.21:Multiple Regression Analysis of the Influence of Africultural, Socio-Demographic, and Disease-Related Variables on Psychological Health ..................................................... 319 Table 3.21a: Summary of Multiple Regression Analysis of the Influence of Socio- Demographic and Disease-Related Variables on Psychological Health............................320 Table 3.22: Invariance Test for Group Comparisons of the Relationship between Spirituality and Psychological Health across Demographic Factors ...................................................... 321 Table 3.23: Summary Result of Pearson Correlation of the Relationship between Hospital Visits, RWB, Friends and GSI and its Subscales…………………………………………………122 University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health ix Table 3.25: Summary Results of Pearson Correlation of Age and Education with Africultural variables and psychological health among SCD, Healthy and Diabetic groups…………..321 Table 4.1: Demographic Characteristics of Interview Participants .................................... 1566 University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health x LIST OF FIGURES Figure 2.1. A Representation of the Biopsychosocial-spiritual theoretical model with the patient at the center ................................................................................................................. 16 Figure 2.2. Normal red blood cells and sickle cells in a blood vessel ..................................... 25 Figure. 2.3. Hypothesized Path Model of the relationships among the studied variables and how they predict psychological health. .................................................................................... 57 Figure 3.1. Observed Conceptual Model for SCD Group. ................................................. 11010 Figure 3.2. Observed Conceptual Model for Healthy Group ............................................. 11212 Figure 3.3. Observed conceptual model for diabetic group............................................... 11414 Figure 4.1. Summary of thematic findings and their relationship ........................................ 1577 Figure 4.2. Relationship between SCD and psychological health via spiritual wellbeing. ... 191 Figure. 4.3. An interactive theoretical model showing the relationships among the thematic findings ................................................................................................................................... 192 Figure 5.1. An alternative model of coping for SCD………………………………………223 Figure 5.2. An African- centered biopsychosocial-spiritual practical model of the care of SCD participants ........................................................................................................................ 22525 Figure 5.3. Comparing the state of psychological equilibrium of SCD and diabetic & healthy participants .......................................................................................................................... 2488 University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health xi LIST OF ABBREVIATIONS ACSI - The Africultural Coping Systems Inventory BSI - Brief Symptom Inventory CBT - Cognitive Behavior Therapy CDC - Centers for Disease Control and Prevention CFI – Comparative Fit Index CR - Convergent Reliability EWB – Existential Wellbeing GSI - Global Severity Index HbSC – Sickle cell gene (“S”) plus abnormal hemoglobin (“C”); less severe sickle cell phenotype HbSS – Homozygous sickle cell genes (“S”); sickle cell anemia; severe sickle cell phenotype IPA - Interpretative Phenomenological Analysis KBTH - Korle-Bu Teaching Hospital MANCOVA – Multivariate Analysis of Covariance MANOVA – Multivariate Analysis of Variance MDSPSS - Multidimensional Scale of Perceived Social Support NNFI – Nonnormfit Index PCA – Principal Component Analysis PiSCES – Pain in sickle cell epidemiological studies PST - Positive Symptom Total RMSEA – Root Mean Square Error of Approximation RWB – Religious Wellbeing SCD – Sickle cell disease SEM – Structural Equation Modeling SMC - Squared Multiple Correlation SWB – Spiritual Wellbeing WHO- World Health Organization University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health xii ABSTRACT Although spirituality has been found to reduce psychological symptoms, the factors that intervene in the relationship remain unclear. The present study aimed at determining whether African cultural values would moderate the relationship between spirituality and psychological health, and whether this observation was unique to SCD participants. Additionally, the study explored reasons for the use of African cultural values in coping. Finally, the study aimed at developing a model of coping with SCD. The study was cross sectional using quantitative and qualitative methods. The quantitative data was collected through questionnaire administered to a purposive sample of 201 adult SCD participants. Two hundred and three (203) healthy and 201 diabetic participants were used as comparison groups. The qualitative data was obtained from a subsample of 23 SCD interviewees. Significant results that emerged from the quantitative study revealed that first, the three groups generally demonstrated significant differences in the variables studied. Second, SCD participants differed significantly from comparison groups on specific African cultural values subscales and on specific psychological symptoms. Third, specific African cultural values predicted psychological health in specific BSI subscales among SCD participants. The rest of the quantitative results did not find anything significant. In the qualitative analyses, participants reported using specific African cultural values for transcendental, social support, psychological relaxation, and minimum physical exercise purposes to promote psychological health. However, medical treatment was the mainstay. Aspects of African cultural values that did not support these functions were associated with poor psychological health. Some of these observations emerged in the larger sample while others did not. These results implied that there were significant differences between SCD and diabetic or healthy participants on University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health xiii endorsement of specific African cultural values and their effects on psychological health. It further implied that SCD individuals used other strategies to complement African cultural values to promote psychological health. Implications of the two studies were evaluated in a revised conceptual model for SCD. Psychological health of SCD participants was a function of factors in the biopsychosocial-spiritual model and based in African cultural values and in the cultural context of patients. Socio- demographic and disease characteristics and other unknown factors added to the equation. The implications of the findings for future research, clinical practice, patient management, and policy matters, were subsequently discussed. University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 1 CHAPTER ONE INTRODUCTION Background to the Thesis Sickle cell disease (SCD) is a chronic inherited genetic blood disorder of hemoglobin that damages and deforms red blood cells. The normal disc-shaped red blood cells change to an abnormal sickle-like shaped red blood cells. Sickled cells often cause anemia, obstructing blood vessels and causing ischemia, organ damage and episodes of unpredictable and recurrent pain (Grant, Gil, Floyd, & Abrams, 2000). The genotype, HbSS or SS, is the most common and severe form of the disease. The genotype, HbSC or SC, is a mild form of the disease. Some individuals have sickle cell trait or HbAS and other types of the disease (Creary, Williamson & Kulkarini, 2007, pp. 575-578; Konotey- Ahulu, 1991). SCD is prevalent worldwide (Lourerio & Rozenfeld, 2005). In the United States, approximately 100,000 people live with SCD, and 2 million are carriers (Centers for Disease Control and Prevention [CDC], 2012). CDC (2012) estimated that SCD prevails most in Sub-Saharan Africa in malaria endemic areas. Each year 200,000 infants are born with SCD in Africa, with up to 2% of all children born in sub-Saharan Africa having the condition (Konotey-Ahulu, 1991; Ohene-Frempong & Nkrumah, 2008; Sergeant, 1997; Sergeant & Sergeant, 2001; World Health Organization, 2006). Ghana and other West and Central African countries have the highest prevalence of the common forms of SCD (i.e., SS and SC) in the world (WHO, 2006). Statistics from the newborns screening for SCD project in Kumasi indicate that approximately 2% of newborns have SCD of the SS and SC types (Edwin, Edwin & Etwire, 2011). This University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 2 translates to about 480,000 annual births of children with SCD in Ghana. According to the World Health Organization (WHO, 2011), about 25 to 30% of Ghanaians carry sickle cell genes that can result in the disease. Sickle cell SS and sickle cell SC constitute over 90% of the disease in Ghana (Konotey Ahulu, 1991). These statistics make SCD a public health related disease in Ghana where several people live with SCD and its clinical, health, educational, social, economic, and psychological complications. Sickle cell complications create the need to develop holistic care programs for affected populations in Ghana where many families are touched by the disease (Konotey-Ahulu, 1991). Although individuals with SCD used to experience mortality at young ages, better healthcare facilities and childhood antibiotic programs have contributed to longer life spans (Claster & Vichinsky, 2003; Gray, Anionwu, Davies & Brozovic, 1999). Advancement in medical technology has improved patients‟ life span. The average life span of a male and female with HbSS increased from 14 to 42 and 48 years respectively, in 1973 (Platt, Brambilla, Rosse, et al., 1994). Presently, the life expectancy of individuals with SCD has increased to 50 years and more (Claster & Vichinsky, 2003; Taylor et al., 2010). Infection, dehydration, acidosis, exposure to extremes in temperature, strenuous exercise, emotional and mental stress trigger crisis, but in most instances no predisposing cause is identified (Quacoo-Nuho, 2011). Crises occur especially in the bones, lungs, abdomen, and joints. Complications include the Hand-Foot syndrome, infections, pulmonary hypertension, delayed growth and puberty in children, stroke, eye problems, priapism, gallstones, leg ulcers, multiple organ failure, and many others (Konotey-Ahulu, 1991). Crises can be mentally draining and limit a person's daily activities. University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 3 With longer life spans, SCD individuals report problems with chronic pain that interferes with their lives (Anie & Green, 2002; Smith, Bovbjerg, Penberthy, McClish, Levenson, Roberts et al., 2005; Smith, Penberthy, Bovbjerg, McClish, Roberts, Dahman, et al. 2008). Treatment of adult sickle cell pain by pediatricians is often reported to be inadequate (Rettner, 2010). Pain in adults with SCD is mostly managed at home rather than in hospitals and clinics (Smith et al., 2005; Smith et al., 2008). Patients encounter stigmatization and are labeled as drug seeking. Patients have difficulties finding doctors with specialization in SCD. Some patients have limited resources to attend hospital (Smith et al., 2008). Poor hospital management of pain among adult individuals with SCD (Aisiku, Smith, McClish, Levenson, Penberthy, Roseff et al., 2009; Elander, Lusher, Bevan & Telfer, 2003; Rettner, 2010; Thomas & Taylor, 2002) and health care providers' misunderstanding of patients' pain behaviors contribute to feelings of anger and isolation that result in patient acting-out behavior (Adegbola, 2011; Weissman & Haddox, 1989). Psychological complications become inevitable, affecting quality of life. One component of quality of life is psychological health. SCD patients report poor quality of life (Lenoci, Telfair, Cecil & Edwards, 2002; Mann-Jiles & Morris, 2009; McClish, Penberthy, Bovbjerg, Roberts, Asiku, Levenson et al., 2005). Patients who enjoy good quality of life also manage well the psychological complications associated with the condition (Mann-Jiles & Morris, 2009). The health quality of life in adult SCD individuals is significantly worse than national norms, and is similar to dialysis patients and poorer than adults with cystic fibrosis (CDC, 2012). Quality of life in adults with University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 4 SCD significantly decreases as pain levels increase (Gil, Carter, Porter, Scipio & Bediako 2004). According to Edwin et al. (2011), many SCD patients succeed to manage the disease in the outpatient setting. They have less need to frequently use healthcare or be hospitalized or have emergency department visits. Much could be learned from such patients in terms of living effectively with SCD (Edwin et al., 2011). A workshop involving such a group of infrequent hospital attendees identified key strategies for effective self-management. The most important strategies identified were self-awareness, emotional/spiritual support, career selection, and nutrition. Others were advocacy, knowledge, appropriate physical exercise, and complementary and alternative medicine (Tanabe, Porter, Creary, Kirkwood, Miller, Ahmed-Williams & Hassel, 2010). According to Smith et al. (2005) and Aisiku et al. (2009), some SCD individuals cope at home and seek health care only when sickle cell pain becomes unbearable. We learn from the foregoing that sickle cell pain and utilization of hospital resources contribute to psychological problems in SCD. In dealing with the sickle cell condition therefore, it is important to investigate the comorbid psychosocial complications. Psychological Health Concerns in SCD SCD has psychological issues to which the clinical and research literature devoted some attention. Social, economic, and healthcare disparities experienced by many individuals with SCD further complicate the psychological issues, apart from or in addition to the SCD itself (Barbarin & Christian, 1999; Becker, Axelrol, Oyesanmi, Marko & Kunkel, 2007). Anxiety, hostility, interpersonal sensitivity, obsessive- compulsion, paranoia, phobic anxiety, psychoticism, and somatization, result from living University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 5 with such a complex medical condition like SCD. Adults with SCD have low self- efficacy (Edwards, Telfair, Cecil, & Lenoci, 2001). They have depression (Houston-Yu, Rana, Beyer & Castro, 2003; Jenerette, 2004), a lack of effective coping skills, and sometimes perceive life as hopeless (Mann-Jiles & Morris, 2009; Thomas & Taylor, 2002). Chronic disease patients including SCD individuals are now known to have much higher rates of anxiety, depression and stress than the general population. Major depression increased chronic disease patients' burden of physical illnesses and symptoms, their functional disabilities and medical costs (WHO, 2002). Quality of life is achieved through a holistic balance of the biophysical, psychological, sociocultural and spiritual dimensions of life. Goddard (1995), however, observed that Western society has separated the individual into distinct biophysical, psychological and spiritual parts and then forgot about the spiritual dimension. Africans are essentially spiritual (Nobles, 2006). However, individuals with SCD often lack the ability to cope spiritually with burdens of their chronic disease (Cooper-Effa, Blount, Kaslow, Rothenberg & Eckman, 2001). It requires an understanding of factors that influence psychological health to improve quality of life for adults with SCD. Apart from the already well known medical factors, some other factors include spirituality, religion, social support, African cultural values and cultural coping, psychological coping, age, education and other socio-demographic variables like socio-economic status (Barbarin, et al. (1999). For people with SCD, the part spirituality plays in promoting holistic care appears to have been mostly overlooked. University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 6 Few studies that investigated spirituality and religion concluded that spirituality and religion help to cope with SCD and its pain (Cooper-Effa et al., 2001; Harrison et al., 2005); and have salutary effects on health (Belgrave & Allison, 2006). Since these variables are considered African cultural values, it is possible Ghanaians use them to cope with SCD. The use and effects of spirituality on psychological health need further thorough investigation. In spite of empirical evidence that religion has significant positive effect on psychological health, religion in psychology and medicine has attracted disagreements. This is because religion is considered as being unscientific, and sometimes injurious to mental and physical health (Cotton, 2006). Recently, however, more convincing research evidence shows a more positive relation between religion and different aspects of psychological health (Rusu & Turliuc, 2011). Religiosity is a multi-dimensional construct that involves cognitive, emotional, motivational and behavioral aspects (Hackney & Sanders, 2003). Richards and Bergin (1997) consider religion to be a subset of spirituality. However, it is possible for a person to be spiritual without being religious and to be religious without being spiritual. To be spiritual is to have a transcendental relation with a supreme being while being religious means adopting a certain religious or church dogma (Rusu & Turliuc, 2011). In the Ghanaian context, however, the separation of religion and spirituality may not be practicable since the two are inseparable (Gyekye, 1996). According to Leventhal, Weinman, Leventhal and Phillips (2008), several factors including cultural beliefs and values determine outcomes of medical management of University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 7 chronic disease patients (including SCD). The extent of influence of these cultural beliefs and values on patients' psychological wellbeing determines how the patient reacts to medical treatment (Bediako & Neblett, 2011). Few published literature is found about cultural values and SCD in Ghana. However, a few studies that are available in the West concluded that the social context of SCD and cultural values are important to include in empirical assessment and theoretical analyses of the effect of SCD on patients. The psychological complications that are often described as an effect of SCD might indeed be a consequence of these cultural factors acting alone or in concert with the strains of SCD (Barbarin & Christian, 1999). Barbarin and Christian (1999) emphasized analyses from a biopsychosocial perspective. Such analysis should emphasize the way in which the biomedical aspects of the disease interact with family systems, cultural values, and socio-economic factors to influence adjustment. Researchers are called upon to explore more fully the social context for coping with SCD and its cultural meaning within the African (American) context. Researchers encouraged the use of multi-method approaches that would permit sophisticated studies of the meanings and functions of spirituality in the lives of African Americans in the family, churches and secular institutions (Barbara & Constantine, 2005; Jacqueline & Mattis, 2000). Moreira-Almeida and Koenig (2008) commended improving research on religiosity and spirituality in chronic pain patients as an important research goal. This is because the available evidence has not found a direct association between some kinds of prayer and pain. Even if religious involvement does not affect pain levels, it could enhance chronic pain patients' sense of wellbeing and social support. Koenig et al. (1998) and Adegbola (2011) recommended to researchers to investigate whether the University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 8 inclusion of spirituality would contribute something more to mental health than the traditional medical treatment and psychotherapy. Similarly, research that explores culture-specific antecedents to help- seeking among individuals living with SCD in Ghana is needed. It is possible that African cultural values play some intervening role in affecting the psychological health of SCD patients and their coping strategies. The fundamental argument in this work is that the cultural patterns, social constructions, health beliefs and practices, material realities and health facilities that exist in individualist Euro-American contexts and collectivist Ghanaian context (Hofstede, 2001) differ. These differences set the stage for differential use of health services thereby determining the relative predictors of psychological health outcomes for patients coping with SCD. Statement of the Problem In the Sickle Cell Disease population, it is unclear what role African cultural values play in the spirituality and psychological health relationship. Do adult individuals with SCD use African cultural values, including religion and social support to cope with psychological symptoms? How do they use them and why? This is the main research concern. Although the relationship between spirituality and psychological health among SCD individuals has been demonstrated, it is difficult to firmly theorize about such relationship. This is because the predictability of religious/ spiritual variables in psychological health is inconsistent. The biomedical sciences have contributed significantly to understanding bio-medical complications of SCD. They have advanced University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 9 pharmacological treatments for SCD. The extent to which medical, psychological, sociological, and cultural factors interact and contribute to the psychological health of SCD individuals remains unclear. The direct and indirect causal paths and relationships among Afrocultural variables and psychological health are unclear. Methodological challenges and data analytical limitations in previous research accounted for this lack of clarity. Western researchers have already found that many Black and African American pain patients use spirituality/religion to cope with stressful situations (Belgrave & Allison, 2006; Utsey et al., 2000). Therefore, the researcher took interest in finding out the possibility of SCD individuals in Ghana using these African cultural resources to cope with the psychological challenges of the disease. The following observations are noteworthy: Psychological symptoms accompany chronic medical conditions (Fadem, 2004). Psychological issues influence the medical outcomes of such chronic diseases (Lin et al., 2004). Treatment of chronic medical conditions like SCD is often limited to the biomedical model and associated psychological symptoms are usually ignored (Grof, 2010). Ghanaians are spiritual and religious (Assimeng, 2010, Gyekye, 1996, Mbiti, 1975). Psychological complications accompany SCD (Anie & Green, 2012) and prevalence of psychological symptoms in SCD in western countries is high (Hasan et al., 2003; Levenson et al., 2008). General Aims and Objectives of the Study The main aim of the present research therefore, is to attempt a mixed methods research to examine existing theories and accepted clinical practices with SCD. Descriptive, associational, comparison and qualitative types of research would be used to University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 10 achieve the aims. Thus survey to determine or describe the characteristics of large samples of SCD participants on African cultural variables and psychological health, and conduct in-depth interviews to answer “why” questions over the same variables. This study has the general objectives to: 1. Examine the relationship between spirituality and psychological health among SCD participants; 2. Determine whether African cultural values/coping clarify the relationship between spirituality and psychological health of SCD participants; 3. Compare SCD participants with other chronic disease and healthy participants on spirituality, African cultural values/coping and psychological health; 4. Explore the meaning and use of spirituality and African cultural values and their role in the psychological health status of SCD participants; 5. Determine the most commonly used coping factors by SCD participants and formulate a model for coping with SCD after analysing and discussing quantitative and qualitative data. Relevance of the Study Studying the particular ways in which the sickle cell condition is culturally constructed (cultural meanings) and experienced in the Ghanaian setting, and their effect on the psychological health of patients is beneficial and significant for reasons that are elaborated elsewhere (See Contribution of Thesis to Knowledge). University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 11 Organization of the Thesis The two-part study is organized into five chapters. Chapter one is the introduction containing background to the study, problem statement, study objectives and relevance. Chapter two contains literature review of theoretical and empirical issues. It contains conceptual framework, statement of study hypotheses, specific qualitative research questions, and operational definitions of terms. It explains the general methodology of the thesis, the thesis epistemology, the research methodology used and rationale for adopting a mixed methods research. Chapter three reports the methodology and results of study one and discussed them. Chapter four contains methodology, results, and discussions specific to study two. Chapter five presents general discussion of the two findings. In this chapter, qualitative results are used to further explain the quantitative findings while addressing the research objectives and concerns/problems listed in chapter one. In addition, implications of the findings, limitations of the study and recommendations for future research are given. University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 12 CHAPTER TWO THEORETICAL FRAMEWORK AND LITERATURE REVIEW This study attempts to investigate the role African cultural values, specifically spirituality, social support and Africultural coping strategies, play in the psychological health outcomes of adults with SCD. This chapter therefore, presents relevant theoretical frameworks supporting the study. The purpose is to elaborate on the theories that explain the various variables in the study by putting them into perspective and giving the study a structure. The theories used in this study include the Biopsychosocial-spiritual theory (Kozak, Boynton, Bentley & Bezy, 2010; Sulmasy, 2002), the Afrocultural Social Ethos Framework (Jagers, Smith, Mock & Dill, 1997) and the Religious Coping theory (Pargament, 1997). This section of chapter two discusses the theoretical fit of these theories to SCD experience and is critiqued. Reviews of the empirical literature on the variables in the study follow. The chapter ends with summary, critique and implications of the review for the current study. It includes the conceptual framework that guided this study, rationale for the present study, the hypotheses to be tested, research questions to be explored, and operational definitions of key terms. Theoretical Framework and Basis of the Research Three main relevant theories and theoretical models or frameworks guided this study. The study is based on the theory that spirituality/religiosity and psychological symptoms are inversely related among SCD and chronic disease patient populations (Belgrave & Allison, 2006; Cooper-Effa et al., 2001; Harrison et al., 2005; Moreira- University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 13 Almeida and Koenig, 2008). Montgomery, Fine and James-Myers (1990) and Myers (1993) theorized that individuals who hold positive African cultural worldview beliefs are likely to report better psychological functioning. According to Belgrave and Allison (2006, p. 35), African Americans are more likely than European Americans to report having religious beliefs. They spend more time in church and other places of worship. African Americans are more likely to use spirituality as a framework for coping with stressful circumstances such as chronic illnesses and disabling conditions. Ghanaians likewise, exhibit religious and spiritual characteristics similar to African Americans. The study is thus grounded in a spirituality framework that emphasizes the Biopsychosocial-spiritual theoretical model (Kozak, Boynton, Bentley & Bezy, 2010; Sulmasy, 2002; Taylor, Stotts, Humphreys, Treadwell & Miaskowski, 2013) and based in an Afrocultural social ethos framework (Jagers, Smith, Mock & Dill, 1997). The Biopsychosocial Model This model by Engel (1977) is a technical term for the concept of the "mind and body" connection (Sulmasy, 2002). The biological component of the model seeks to explain the cause of illness from the functioning of a person's body. It explains disease in terms of an underlying abnormality caused by a pathogen, genetic or developmental defect or injury. Possible psychological causes for a health problem form the psychological part of the theory. Lack of self-control, emotional disturbance, and negative thinking are examples of psychological factors. The social part of the theory examines the effects of diverse social factors on health. Examples include socio- economic status, culture, poverty, technology, and religion. Philosophically, the model University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 14 states that the workings of the body can affect the mind, and the workings of the mind can affect the body. It means both a direct interaction between the mind and body as well as effects through intermediate factors (Sulmasy, 2002). The intermediate factors in the Ghanaian culture, the researcher suspected are African cultural values variables. Medicine, psychiatry, clinical psychology, social work, sociology, nursing, chiropractic medicine, and several applied disciplines use the biopsychosocial model for both research and clinical practice purposes. However, the model does not encompass all the dimensions of human functioning. For example, the spiritual component is missing in the model. Grof (2010) discussed the limits and dehumanizing effect of the bio- psychosocial model. He proposed empathy as central in the relationship between the doctor and patient. Sulmasy indicated that "A human person is a being in a relationship - biologically, psychologically, socially, and transcendentally" (Sulmasy 2002, p. 32). Bussing and Koenig (2010) argued similarly that, "chronic illness has a significant impact on the life of patients and affects physical, functional, emotional, social and spiritual wellbeing. Healthcare that addresses patients' psychosocial and spiritual needs contributes to patients' improvement and recovery" (p. 24). The cultural relevance of the Biopsychosocial model is limited in view of the absence of a spiritual component in the model. According to Belgrave and Allison (2006), "A culturally relevant model of health recognizes core values and ways of being and recognizes the significance of spirituality. In health promotion efforts, African Americans are more likely to use spirituality as a framework for coping with stressful situations. Therefore, spirituality should be incorporated into treatment practices and health promotion efforts" (p. 267). University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 15 Belgrave and Allison (2006) argued that the role of churches and religion in contributing to positive health outcomes, and the role of the extended family in providing social, emotional, economic, spiritual support and reassurance must be considered in understanding health and illness outcomes among Africans. Thus, they are advocating for a Biopsychosocial-spiritual approach (Sulmasy, 2002) which must be based on African culture. The experience of chronic pain in adults with SCD is complex and multi-sided. The pain comprises biological, psychological, sociological, and spiritual aspects (Taylor et al. 2013). Turk and Gatchel (2002) designed the biopsychosocial multidimensional approach to chronic pain as a model of chronic pain. Their model, though comprehensive, did not account for a spiritual/religious dimension. The model has not been applied to sickle cell related pain (Lou Ella et al., 2013). Research suggests that there is inverse relationship between spirituality/religiosity and pain intensity in adults with sickle cell chronic pain (Harrison et al., 2005). Taylor et al. (2013) proposed a biopsychosocial- spiritual model for adults with sickle cell chronic pain because the model covers the whole person. Relating the biopsychosocial-spiritual model to this study, SCD is a genetic disorder that has physical, physiological, biological and medical complications. This biological condition affects the psychological wellbeing (mental state, emotional wellbeing, attitudes, feelings and behaviors) of the patient. The patient lives in a socio- cultural context where people, culture, socio-economic status, poverty, technology and religion negatively or positively affect the way the patient copes with the disease. The patient uses spiritual-religious resources as complementary coping effort. University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 16 Figure 2.1 shows factors in the theoretical framework that informed the present study. The relationships among the factors are shown by the direction of the arrows. Figure 2.1. A Representation of the biopsychosocial-spiritual theoretical model with the patient at the center In Figure 2.1, the patient is at the center and is the object of interest, not the disease per se. The SCD patient employs a combination of factors in the biopsychosocial- spiritual model to cope with the chronic disease. The Afrocultural Social Ethos Framework Another theoretical framework for this present study borrows from Jagers, Smith, Mock and Dill (1997) who examined the association between culture and psychological functioning among urban adolescents in the USA. Jagers et al. (1997) argued that three African worldview factors are believed to be germane to general African American psychosocial experiences. One is "spirituality." It is an indebted mindfulness of the continuous existence of ancestors, prayer or plea for help from higher power. It is respect for the presence of "spirit" in others (Nobles, 2006). It is held to be one characteristic that defines African American life (Mattis & Jagers, 2001). Another worldview component is "Affect." “Affect” refers to openness to receive and express emotions (Boykin & Ellison, Spiritual Socio-cultural Biomedical Psychological SCD patient’s coping University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 17 1995). It is agreement of thought and feeling, being honest with one's emotions, and feeling connected to others (Jagers et al., 1997). Many African American psychologists know that the expression of positive emotions is a basis for resilience, mental health and wellbeing (Caldwell-Colbert, Parks & Eshun, 2009). A third worldview component is "Communalism." It is a basic commitment to others when a person is socially involved, is willing to accept group responsibilities and holds principles that emphasize interdependence (Jagers & Mock, 1995). These three factors comprise what Jagers et al. (1997) term “Afrocultural social ethos.” They defined it as "genuine communal relations that require an awareness of a shared vital essence that in turn brings... attention to the affective tone of self and others" (p.330). In the present study, the researcher examined whether specific representations of an Afrocultural worldview, such as religion and social support, explain the relationship between spirituality and psychological health in a sample of adults coping with SCD. In view of existing literature, the present study is the first examination of African cultural values as a possible intervening psychosocial and coping factor in the SCD population in Ghana. Religious Coping Theory According to this theory, when an individual is faced with problems, he/she attempts to cope with their inherent religious resources which are likely to influence their health outcomes. Pargament (1997) suggested that particular styles of religious coping are associated with good or poor psychiatric outcomes. Pargament (2002) indicated that higher wellbeing is associated with internalized religion, intrinsically motivated religion, and a secure relationship with God. On the other hand, imposed religion, unexamined University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 18 religious beliefs and behavior, and a questionable relationship with God and the world are associated with lower wellbeing. Religious coping, therefore, occurs when a stressor related to a sacred goal arises or when people invoke a coping method they view as sacred in response to a stressor (Pargament, 1997, in Cummings & Pargament, 2010). This theory warrants that any form of illness that requires the individual to adjust his/her lifestyle becomes a major stressor that requires some amount of coping. Religion offers one of the most important coping resources individuals and groups depend on and the several forms it can take include material, emotional and psychological support (George, Larson, Koenig, & McCullough, 2000). The illness outcomes of many conditions reveal religion as serving as a protective element. Patients who frequented public religious services and who believed they had divine experiences generally saw themselves as being healthier than those who rarely participated in religious events (Campbell, Yoon & Johnstone, 2010). Likewise, a study in Belgium among chronic pain patients indicated that some patients recounted experiencing closeness and security with God. Such patients understood their disorder to mean a chance to modify lifestyle and to reflect upon what is necessary in life (Dezutter, Luyckx, Schaap-Jonker, Büssing, Corveleyn, & Hutsebaut, 2010). It does not mean that religiosity protects all persons from negative mental and physical illness outcomes. Some research documented that religion and religiosity may result in negative health outcomes (Koenig et al., 2010). University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 19 In summary, this research is based on the three theoretical frameworks because they are useful to the topic under study. The theories basically assume that spirituality, religion and social support systems reduce psychological and physical distress of SCD individuals; that spirituality, religion and social support are African cultural values; and that high African cultural values are associated with high Africultural coping which in turn associate with psychological health in SCD individuals. Review of Related Literature In this review of related literature, the issues that were researched in the area of African cultural values, spirituality/religion, social support; psychological health; and coping with sickle cell disease (SCD) have been summarized and synthesized. Overview of Sickle Cell Disease: Prevalence The World Health Organization (WHO) documented the prevalence of sickle cell trait to range from 10% to 40% across equatorial Africa. In Northern Africa the prevalence decreases to between 1% and 2%. It is less than 1% in Southern Africa. In West African countries including Ghana and Nigeria, prevalence of the trait is 15% to 30%. In East African countries like Uganda and Tanzania, the variations are wide reaching 45% in some areas (WHO, 2006). This distribution is believed to reflect present or historical exposure to plasmodium malaria infection since carriers seem to be protected from malaria associated with deaths. This has improved survival and thus transmission of the HbS gene. From this statistic, the incidence of SCD at birth is determined by the prevalence of carriers in the population. SCD therefore, has significant public health implications for University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 20 Africa, with up to 16% in West Africa (Weatherall & Clegg, 2001). Nigeria has an estimated carrier prevalence of 24%, 20 per 1000 births are estimated to be affected by SCD. This results in 150,000 annual births with SCD in Nigeria (WHO, 2006). In Ghana approximately 2% of newborns have HbSS and HbSC types (Edwin, Edwin & Etwire, 2011). This translates to about 480,000 annual births of children with SCD in Ghana. Details of the SCD condition and prevalence are presented in chapter one of this thesis (Grant, Gil, Floyd & Abrams, 2000; Schaeffer et al., 1999). According to Malowany and Butany (2012), by age 5-6 months, signs and symptoms of SCD start showing and continue throughout life. SCD may lead to complications, several of which have a high mortality rate forerun by pain and crisis symptoms. Painful episodes had been reported to be highest among patients aged 20 to 29 years and they predicted early death (Platt, 1991). Men experienced more frequent pain until 25 years while women showed little age-related change (Baum, 1987). Chronic sickle cell pain may be present all the time. Recurrent acute episodes occur throughout life and may require hospitalizations (Brozovic, 1987). This makes problems with acute pain the main characteristics of SCD and also the main focus of research for the SCD population (Smith et al., 2008). Although researchers have come a long way in terms of understanding and treating children with sickle cell, poor adults with the condition in the United States still face many challenges including poor care when hospitalized. Adult patients often end up in the emergency room for treatment with pain episodes (Rettner, 2010). University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 21 Several reasons account for the problems in adult care of SCD. One reason is longevity of SCD patients now as compared to thirty or forty years ago when the majority died during childhood (Eiser & Morse, 2001). Successful treatment of SCD in childhood has resulted in markedly improved survival through adulthood. Thus, the need for adult SCD care is relatively new (Smith, Jordan & Hassell, 2011). As a result, there are more sickle cell specialists established in the pediatric population than there are in the adult area (Rettner, 2010). This makes adults with SCD get their care from pediatric centers where doctors lack adult sickle cell knowledge. Another reason is that many doctors misperceive how much pain the condition causes in adults and how much medication it requires. Since adult patients are in tune with their body and know the amount and type of medication they need, many doctors suspect adults quest for pain relief as soliciting drugs and suspicious behavior (Rettner, 2010). In the United States, African Americans are a population with less access to health care benefits, and are over-represented among the nation's poor. Because of their poverty level, they might lose some health insurance benefits when they become adults. As a result, they tend to rely on cultural resources to cope with chronic illnesses (Rettner, 2010). Effects of SCD on adult patients. Chronic illness affects all aspects of a client's life including psychological, physical, social, recreational, spiritual, sexual, and vocational (Livneh & Antonak, 2005). Livneh and Antonak (2005) defined chronic illness by the degree of functional limitation, interference with the ability to perform daily activities and life roles, uncertain prognosis, University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 22 the prolonged course of medical treatment and/or rehabilitation interventions. Chronic illness comes with psychosocial stress associated with the incurred trauma or disease process itself. It has impact on family and friends, and sustained financial losses. To Jenerette and Brewer (2010), the burdens of SCD can affect all aspects of the patient's life to include physiological, psychological, and social well-being. Past quantitative and qualitative studies demonstrate that in children and adults, SCD has a significant impact on quality of life (Lim, 2009). There are few families in Ghana that are not affected by SCD (Konotey-Ahulu, 1991). Since pain is the basis upon which the disease has been named in certain West African cultures, the local Ghanaian names of the disease indicate how patients and their relatives grapple with pain (Riddington & Owusu-Ofori, 2002). Konotey-Ahulu (1991) indicated that the disease had probably been recognized for generations in West Africa. West Africans referred to SCD as "cold season rheumatism." SCD was given the repetitive onomatopoeic names that are appropriate to a chronic, recurrent pain condition. In this regard, Okraku, Ofori-Atta, Danquah, Ekem and Acquaye (2009) reported that the Akan people of Ghana refer to SCD in their "Twi" dialect as "Ahututuo." According to Riddington and Owusu-Ofori (2002), these indigenous names like "ahututuo" are characterized by alliteration of letters that apparently signifies the persistence and recurrence of pain, and the closest English translations would include 'body biting', 'body chewing', and 'beaten up.' The Fante people of Ghana call it "Nwiiwii"; the Ga people of Ghana call the disease "chwechweechwe"; the Ewe call it "nuidudui; while the Krobo people call it "hemikomi" also meaning bodily pains or body biting (Konotey-Ahulu, 1991). This reveals that while Westerners describe SCD by its microscopic University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 23 morphological characteristics, Ghanaians describe it by the pain they experience in their body. The literature demonstrates that SCD affects patients in different areas. The totality of these areas reflects a biopsychosocial effect. One effect of SCD is biophysical. It places a lot of biological and physical limitations on patients. Biologically, organs in the body are affected and they do not function optimally. Physically, mild to severe pain places limitations on the movements and physical exertion of patients (Asnani, 2012). Sickle cell crisis, an episode of pain (Gil, Abrams, Phillips & Williams, 1992) is the most common reason for hospitalization in SCD. The pattern may occur as follows:  In general, the risk for a sickle cell crisis is increased by any activity that boosts the body's requirement for oxygen, such as illness, physical stress, or being at high altitudes. In more than half of episodes, however, the trigger is unknown.  Episodes typically begin at night and last 3 - 14 days, accelerating to a peak over several days and then declining.  The pain is typically described as sharp, intense, and throbbing. Severe sickle cell pain has been described as being equivalent to cancer pain and more severe than postsurgical pain. Shortness of breath is common.  Pain most commonly occurs in the lower back, leg, hip, abdomen, or chest, usually in two or more locations. Episodes usually recur in the same areas. Pain in the bones is common because blood obstruction can directly damage bone and because bone marrow is where red blood cells are manufactured. University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 24  The liver or spleen may become enlarged, causing pain in the upper right or upper left sides of the abdomen. Liver involvement may also cause nausea, low-grade fever, and increasing jaundice.  Males of any age may experience prolonged priapism (Konotey-Ahulu, 1991). According to Thompson (2006) episodes cannot be predicted, and they vary widely among different individuals. Episodes sometimes become less frequent with increasing age. Generally, patients can resume a relatively normal life between crises. Most patients are pain-free between episodes although pain can be chronic in some cases. The following diagram shows normal red blood cells and sickle cells in a blood vessel. University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 25 Figure 2.2. Normal red blood cells and sickle cells in a blood vessel. Source: Adapted from National Heart, Lung and Blood Institute (2011). Figure 2.2 shows normal red blood cells flowing freely in a blood vessel. The inset image shows a cross-section of a normal red blood cell with normal hemoglobin. Figure B shows abnormal, sickled red blood cells blocking blood flow in a blood vessel. The inset image shows a cross-section of a sickle cell with abnormal (sickle) hemoglobin forming abnormal strands. University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 26 In assessing the seriousness of SCD, the emotional and social impact should not be underestimated (Asnani, 2004). The patient endures the emotional strain from unpredictable bouts of pain, fear of death, and lost time from school and work, in addition to the pain itself. Asnani indicated that psycho social factors contribute substantially to complaints of pain. Factors like age, gender, race, education and socio-economic status, as well as psychological factors like coping style, coping capacity and social support have all been used to explain differences in disability associated with sickling pain intensity, threshold and tolerance (Asnani, 2004). Anxiety and depression are psychological complications of SCD with important social consequences for adults with SCD (Asnani, 2004; Levenson, McClish, Donna, Dahman, Bovbjerg, et al., 2008). Anie and Green (2012) argued that the source of the psychological complications in patients is mainly from the impact of pain and symptoms on their daily lives and society's attitude toward patients. Mood is a component of SCD pain experience, related quality of life and medication use (Anie & Steptoe, 2003). Some social areas of life that SCD affects are schooling, financial cost of medical treatment, loss of employment among adults, general ability to cope with life, housing, parents, relationship with boyfriend or children, and hospitalization (Anie & Steptoe, 2012; Harris et al., 1998, p. 174). Individuals with SC anemia exhibit problems with self- concept and low self-esteem, anxiety, depression, dissatisfaction with body image, poor school performance, social isolation, and decreased participation in normal activities of daily living, and poor peer and family relationships (Edwin et al., 2011; Jacob, 2001; Porter, Gil, Carson, Anthony & Ready, 2000). Because of these social effects, children and adults with SCD often suffer from depression. Patients who attempt to live normal University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 27 lives have threats that do not always reside in the SCD condition but reside in life transitions, in changes in social relationships and racist or sexist marginalization (Atkin & Ahmad, 2001). These social factors affect the social competence of SCD patients (Thaniel, 2013). Thaniel (2013) compared the psychosocial functioning and academic achievement in siblings with and without SCD. She found that siblings with SCD reported more internalizing behaviors (anxiety and depression) than their healthy siblings and also reported less social competence than their healthy siblings. Thaniel (2013) concluded that adolescents with SCD are at risk for psychosocial adjustment problems and poor academic achievement but given adequate family support, they can cope as well as their healthy siblings. In summary, SCD is not properly understood when we understand the pathophysiology of SCD without thoroughly understanding the equally important psychosocial influences (Edwards, Scales, Loughlin, Bennett, Harris-Peterson, De Castro et al. (2005). The literature has not demonstrated that SCD affects the spiritual life of the patient. It rather addressed spirituality‟s effects on patients‟ health. Spirituality and psychosocial functioning of individuals with SCD. Some published empirical studies that explicitly examined spiritual and religion- related factors among persons with SCD have been reviewed (Cooper-Effa et al., 2001; Harrison et al., 2005; and O'Connell-Edwards et al., 2009). In Georgia in the USA, Cooper-Effa et al. (2001) studied 71 adults with SCD. They found religion's influence on coping with pain to vary, (i.e. scores on the Spiritual Well Being Scale were positively University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 28 related to coping with the psychological complications of SCD). SWBS scores were however, not related to perceived severity of sickle cell pain. In North Carolina, Harrison et al. (2005) studied three domains of religiosity/spirituality, namely, church attendance, prayer/Bible study, and intrinsic religiosity. They evaluated the domains‟ association with measures of SCD pain among 50 adults with SCD. They found that prayer/ Bible study, and intrinsic religiosity were unrelated to pain. However, church attendance once or more a week was negatively correlated, and thus associated with the lowest scores on pain measures. Harrison et al. (2005) indicated that SCD patients identified religion/spirituality as an important factor in coping with stress and in determining quality of life. These findings were maintained after controlling for age, gender, and disease severity. In their study, prayer/Bible study and intrinsic religiosity were not significantly associated with pain. The researchers concluded that religious involvement and not intrinsic religiosity (spirituality) likely plays a significant role in modulating the pain experience of African American patients with SCD. Harrison et al‟s conclusion was not justifiable from the results of the research. However, among African Americans for whom religiosity/spirituality is a coping mechanism, this infirm finding exposes new aspects of the relationship between religiosity and chronic illness that need further investigation. The study by O'Connell-Edwards et al. (2009) of 67 adults with sickle cell found that religious coping as measured by the frequency of church attendance and prayer had a more complex association with pain, psychopathology, and healthcare utilization. Participants who reported moderate prayer frequency had lower levels of anxiety and hostility. They had significantly more emergency department visits. Contrarily, church University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 29 attendance showed a more linear relational pattern with the outcome variables. O'Connell et al. (2009), however, observed that none of these associations was statistically significant. It is noteworthy that the findings mentioned above do not reflect already established relationships between religiousness and spirituality and chronic pain. Patients with chronic pain from several sources such as musculoskeletal, cancer, or SCD, usually report that religiousness and spirituality are important in their lives. Prayer is the most used complementary therapy and religious coping is among the most common strategies used to deal with pain. Some studies, however, indicated that petitionary prayer is related to higher pain levels, possibly suggesting a turning to religion due to increasing pain. The best available evidence, according to Moreira-Almeida and Koenig (2008), supports a positive association between religiousness and spirituality with higher well-being and positive affect, and a negative association between religiousness/spirituality and depression and anxiety symptoms. Findings are inconsistent about prayer having a significant relationship with chronic pain. Some researchers found and others did not find that that relationship exists. Cotton et al. (2009) used a mixed method approach, using both quantitative surveys and qualitative interviews to examine religious/spiritual coping, spirituality and health-related quality of life in adolescents with SCD. Adolescents reported high rates of religious attendance and belief in God, prayed often, and had high levels of spirituality defined as finding meaning and peace in their lives and getting comfort from their faith. Thirty-five out of 48 adolescents reported praying once or more a day for symptom management. The most common positive religious and spiritual strategies employed by adolescents University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 30 were asking forgiveness for sins (73%) and seeking God's love and care (73%). These strategies affected sickle cell pain positively. Why was prayer not significantly associated with pain in the Harrison et al. (2005) study as it is in the Cotton et al's. (2009) study? It could be differences in study methodology and use of small sample sizes. While one used a quantitative method alone, the other used mixed method. Some research has demonstrated positive associations between religiosity/spirituality and better physical and mental health outcomes (Koenig et al., 2008). African cultural values and psychological health in SCD. Gurung (2006) argued that cultural factors shape the experience of illness and influence how it is perceived, labeled, and explained and how the experience is valued. Since SCD is a medical condition that mostly affects Blacks, investigating cultural variables is important (Barbarin & Christian, 1999; Kaslow, Collins, Loundy, Brown, Hollins, & Eckman, 1995; Kaslow et al. 2000). Historically, Africans have used religion, spirituality, and faith to preserve culture, family, and identity (Mattis & Jagers, 2001). Culture is defined as a set of shared and socially transmitted ideas about the world that are passed down from generation to generation (Kolko-Rivera, 2004). It is implied in culture that people who interact on a regular basis know the same unwritten rules and criteria for social life that confer status as a group member. An Africentric worldview is a set of beliefs, values, and assumptions that are founded on African cultural traditions and that relate to definitions of the self, others, and the relationship of the self with the environment (Utsey, Adams & Bolden, 2000). University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 31 Africentric principles are codes of conduct for daily life that represent the minimum set of values that African Americans need to build and sustain an African life, family, community, and culture (Grills & Longshore, 1996). According to Karenga (1988), unity, self-determination, collective work and responsibility, cooperative economics, purpose, creativity, and faith are seven core principles (Nguzo Saba) of an Africentric worldview. Other primary Africentric values of spirituality, harmony with others and nature, balance, orientation to time as a social phenomenon, authenticity, and an emphasis on oral tradition, were noted by African -centered scholars (Belgrave & Allison, 1997; Mattis & Jagers, 2001; Mbiti, 1986; Nobles, 1986). These values developed by African Americans, represent a mixture of traditional African philosophies and values and the historical experiences of African Americans who live in the United States of America (Constantine, Lewis, Conner & Sanchez, 2000; Myers, 1993; Nobles, 1990). Africentric values are essentially hybrids of two different cultures, one traditional African and the other North American western culture. Collective work and responsibility as a value, is the belief that African Americans are responsible for one another and should work together for the betterment of the family and community. The value of cooperative economics is the belief that African Americans must share and maintain resources among and within their community. According to Belgrave, Chase-Vaughn and colleagues (2000), self- determination refers to a belief that African Americans should make decisions for themselves, their families, and their communities. In effect, SCD individuals should make decisions for themselves and their families and communities should be included in such decisions. University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 32 Similar to what African American scholars developed as Africentric values is what the Ghanaian philosopher, Gyekye (1996), discussed as African cultural values: religious values, humanity and brotherhood, communal and individualistic values, moral values, the family, economic values, aesthetic values, knowledge and wisdom, ancestorship and tradition and human rights, among others. By arguing that "tradition is not necessarily at variance with modernity" (p. 173), Gyekye (1996) acknowledged that African cultural values have been influenced by other cultures, especially Western culture and modernity. Although influenced by other cultures, core African values and worldview still exist, and continental Africans who live with SCD may still recognize their roots and values. Some research studied variables that are similar in concept to the Afrocultural social ethos. One study of adults with SCD showed that religious involvement was significantly related to fewer reports of pain (Harrison et al. 2005). In another sample of adults with SCD, Cooper-Effa et al. (2001) found spirituality to be positively associated with perceived control. Yet, in another sample of adults with SCD, Gil et al. (2004) found positive mood to be related to decreased pain, fewer hospital visits, and reduced absence from work. SCD self-help and support groups have socially unifying and communal nature. These promote a sense of belongingness that enhances personal growth and positive adjustment to SCD. These factors suggest that an Afrocultural framework could widen understanding of how adults cope with SCD, its physiological and psychological effects, using psychosocial and cultural resources. Hypothetically, it is expected that an inverse University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 33 relationship between endorsement of high levels of Afrocultural social ethos and lower levels of psychological symptoms would be reported among SCD patients. Regarding conceptualizing relation between psychological health and coping with SCD, African cultural values are important variables to consider. In some ways, African cultural values encourage positive interpersonal relationships and pro-social behaviors that are necessary for adaptation and survival (Nobles, 2006). African cultural values play a central role in the psychological experience of Blacks. Ramseur (1998) highlighted definition of mental health in African Americans as maintaining a positive self-concept, affirmative view of African American culture, developing emotional intimacy with others, and maintaining a sense of competency and productivity. Believers in culturally centered approaches to mental health argued that a person who holds positive worldview principles is likely to report better psychological functioning (Montgomery, Fine & James-Myers, 1990; Myers, 1993) and possess improved abilities to handle stress (Hill, 2006; Jackson & Sears, 1992). Given this framework, we can expect African cultural values to function prominently in the psychological health of Ghanaian SCD patients. Belief in Africentric values is assumed to lead to a reduction in psychological symptoms such as stress, anxiety, depression, and anger, and may promote a greater sense of wellbeing, resiliency and coping among African Americans (Akbar, Chambers & Thomas, 2001; Constantine & Blackmon, 2002; Constantine, Alleyne, Wallace & Franklin-Jackson, 2006; Thomas, Townsend & Belgrave, 2003)). The importance of culture in psychological health among SCD patients in Jamaica and London was demonstrated. Thomas, Hambleton and Sergeant (2001) used a survey (questionnaire) design to investigate possible differences in coping mechanisms between University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 34 60 Jamaican and London patients with homozygous SCD. Their results indicated that Jamaican patients in Jamaica had less general anxiety. They had lower emotional response to pain, lower levels of perceived pain, and felt better able to decrease their pain. London patients thought that the disease significantly affected their quality of life. The study concluded that to develop effective management in the United Kingdom, it requires understanding the differences between patients' response to pain and their coping ability between Jamaican and London patients. Differences in cultural coping could be the reason for the differences in psychological outcome of patients in these two different countries (See also Anie et al., 2007). Studies concluded that "It is important for Blacks to adhere to pro-Black values in order to become content with themselves and avoid psychopathology" (Nonterah et al., 2009, p. 77). See also Constantine et al. (2006) and Pierre and Mahalik, (2005). Culture and its attendant health beliefs affect choice of treatment for SCD. Anie et al's. (2010) Nigerian study supports the idea that family support, and conditions of work could influence health beliefs. Some SCD individuals in Nigerian used prayer for religious healing as an alternative approach or to complement medical treatment for SCD. This is because causes of the disease were attributed to "divine justice" or the supernatural. Such beliefs led to positive perceptions and attitudes towards SCD and patients in Nigeria. In Ghana, Okraku et al. (2009) studied the effects of health beliefs on coping among 100 adults with SCD and found that Ghanaians continued to use more traditional treatments than Western medical treatments. Anie et al. (2010) suggested that the ability of people to cope with SCD vary considerably. Some people cope relatively well. They University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 35 school and work and are physically and socially active. Others do not cope well. They lead more restricted and isolated lives. This, Anie et al. (2010) thought, may not necessarily result from severity of the SCD, but most likely from psychosocial and cultural reasons. These results notwithstanding, quality of life in Nigerian SCD persons may be more compromised than that of the general population (Anie et al., 2010). Psychological health complications among SCD and other chronic disease individuals. The psychological health of SCD individuals is determined by multiple factors that include biological (genetics), social (gender, family, and social support), individual (personal experiences), and socio-economic factors like social status and living conditions (LaBier, 2013). These factors affect peoples' perceptual and cognitive systems and affect psychological processes associated with self-esteem, belief in self-efficacy, and expectations of reward, according to the European Commission (2005). SCD persons' psychological health is defined by their ability to handle anxiety, depression, anger, stigma, social marginalization and self-esteem issues that the disease triggers in the individual. Inability to cope with these issues can generate psychological distress in which the individual suffers mentally, emotionally, behaviorally and contributes little to self- development and society. According to the WHO (2002), individuals with chronic diseases have much higher rates of depression and anxiety than the general population. Major depression among such individuals increased the burden of their physical illnesses and symptoms, their functional impairment and their medical costs. Compared to the general population, individuals with SCD show higher rates of psychological health problems like stress University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 36 (Harris, Parker & Barker, 1998; Thomas, Dixon & Milligan, 1999), higher depression (Hasan et al. 2003; Jenerette, Funk & Murdaugh, 2005) and anxiety (Anie & Green, 2002). Bediako (2009) attributed the increased psychological risk directly to the experience of sickle cell pain. Some researchers however, suggested that it is better to see psychological variables as contributing to the onset of sickle cell pain. Similarly, Harris et al. (1998) reported on psychological distress that out of 24 adult patients with SCD who completed the SCL-90-R measure, 16 (62.5%) had a Global Symptom Index score of more than one and were considered as experiencing psychological distress. Of this number, six (25%) had severe symptoms, fifteen (62.5%) were in the clinical range for depression, eight (33.3%) were severely depressed and ten (41.6%) had clinically significant scores on anxiety and five (21%) of these had severe anxiety (p. 176). Pells, Edwards, McDougald, Wood, Backsdale, Jonassaint et al. (2007) studied fear of movement, pain, and psychopathology in SCD patients. They found that higher levels of kinesiophobia were associated with greater psychological symptoms, particularly Phobic Anxiety, Psychoticism, Somatization, Anxiety, Obsessive- compulsive, Interpersonal sensitivity, and depression. According to Anie and Green (2012), early research found the most frequent psychological problems encountered to include increased anxiety, depression, social withdrawal, aggression, poor relationships and poor school performance. The story appears different in a Nigerian study of the psychosocial impact of SCD among 408 adolescents and adults attending three hospitals in Lagos, Nigeria. The University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 37 authors found depressive feelings to be present in nearly half of the population studied; but they found anxiety and self-hate to be rare (Anie, Egunjobi & Akinyanju, 2010). Although depression, anxiety and stress are highly prevalent among SCD individuals in Western cultures, these prevalence rates may not apply to all SCD individauls across all cultures. There could be something about these Nigerian SCD study participants that made anxiety and self-hate less prevalent, and this could be true also about other non- Westernized societies. This needs investigation. In another Nigerian study, Ehiegie (2003) reported that SCD participants had a prevalence rate of depression greater than people with cancer or malaria, but less than those with HIV/AIDS. According to Laurence, George and Woods (2006) SCD may attract social disrespect, disability, and financial stress. Stigmatization for pseudo- addiction to opioid analgesics is also related to anxiety and depression (Elander, Lusher, Bevan, Telfer & Burton, 2004; Levenson et al., 2008). SCD individuals have a higher incidence of psychological problems that include anxiety and depression, than people without SCD (Burlew, Telfair, Colangelo & Wright, 2000; Hassan et al., 2003; Molock & Belgrave, 1994). Barrett et al. (1988) attributed these increased problems among SCD individuals to chronic pain and increased anxiety that may be associated with concerns about body deterioration or mortality. Anxiety, depression, and other psychological disorders are common in SCD just as they are in most chronic diseases (Alao & Cooley, 2001; Alao, Dewan, Jindal, & Effron, 2003; Levenson et al., 2008). Depression rates are similar in SCD to those in other serious chronic medical conditions, ranging from 18% to 44% (Hasan et al. 2003, University of Ghana http://ugspace.ug.edu.gh African cultural values and psychological health 38 Lawrence, George, & Woods, 2006; Wilson et al., 1999). Depression rates, however, are higher than in the general population even after controlling for illness-related physical symptoms (Molock & Belgrave, 1994). Levenson et al. (2008) found a high prevalence (about 28%) of depression within the range other people report. But this range is much higher than that reported in the general adult population of African Americans, but similar to that found in other chronic medical conditions such as diabetes mellitus, coronary artery disease, or hepatitis C. Levenson et al. (2008) found in the PiSCES sample that depression was a more powerful predicto