University of Ghana http://ugspace.ug.edu.gh UNIVERSITY OF GHANA DEPARTMENT OF INFORMATION STUDIES INFORMATION NEEDS OF WOMEN UNDERGOING TREATMENT AND MANAGEMENT OF BREAST CANCER: A STUDY OF 37 MILITARY HOSPITAL AND SWEDEN-GHANA MEDICAL CENTRE BY BENEDICTA BOADI [10234793] THESIS SUBMITTED TO THE SCHOOL OF GRADUATE STUDIES, UNIVERSITY OF GHANA, LEGON IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE AWARD OF A MASTER OF PHILOSOPHY DEGREE IN INFORMATION STUDIES JULY, 2018 University of Ghana http://ugspace.ug.edu.gh DECLARATION I hereby declare that this thesis is the outcome of my own research towards the award of a Master of Philosophy in Information Studies. No part of this work has been presented by anyone for any academic award in any University except where due acknowledgement has been made. .......................................................... ........................................... BENEDICTA BOADI DATE [10234793] i University of Ghana http://ugspace.ug.edu.gh CERTIFICATION We hereby certify that this thesis was supervised in accordance with procedures laid down by this University. …………………………………… ……..……..…………….. DR. EMMANUEL ADJEI DR. MUSAH ADAMS (PRINCIPAL SUPERVISOR) (C0-SUPERVISOR) ……………………………. ………………………….. DATE DATE ii University of Ghana http://ugspace.ug.edu.gh DEDICATION I dedicate this research work to the Almighty God whose faithfulness and unfailing mercies have brought me this far. It is also dedicated to my children. iii University of Ghana http://ugspace.ug.edu.gh ACKNOWLEDGEMENT I thank the almighty God for the strength and protection during this research work. I am also highly indebted to my supervisors Dr. Emmanuel Adjei and Dr. Musah Adams for their constant suggestions that led to the completion of this research. I am grateful to my family for their support and encouragement. Lastly I wish to thank the following people for their immense contribution to the success of this research: Prof. H. Akussah, Prof. A. A. Alemna, Mr. Francis Agyei, Mr. Theodore Ahunu, Mr. Jeffery Amponsah, Dr. Chris Sam Dodoo, Mrs. Ama Sakyiwaa and the following bodies namely 37 Military Hospital Ethical Review Committee and Sweden-Ghana Medical Centre Ethical Review Board. iv University of Ghana http://ugspace.ug.edu.gh TABLE OF CONTENTS DECLARATION ............................................................................................................................. i CERTIFICATION .......................................................................................................................... ii DEDICATION ............................................................................................................................... iii ACKNOWLEDGEMENT ............................................................................................................. iv TABLE OF CONTENTS ................................................................................................................ v LIST OF TABLES .......................................................................................................................... x LIST OF FIGURES ....................................................................................................................... xi LIST OF ABBREVIATIONS AND ACCRONYMS ................................................................... xii ABSTRACT ................................................................................................................................. xiii CHAPTER ONE ........................................................................................................................... 1 INTRODUCTION......................................................................................................................... 1 1.1 Background to the Study .................................................................................................. 1 1.2 Statement of the Problem ................................................................................................. 3 1.3 Purpose of the Study ........................................................................................................ 4 1.4 Objectives of the Study .................................................................................................... 5 1.5 Scope and Limitation of the Study ................................................................................... 5 1.6 Theoretical Framework .................................................................................................... 6 1.6.1 Wilson’s Model of Information Seeking Behaviour ................................................. 7 1.6.2 Kuhlthau’s Information Search Process Model ........................................................ 9 v University of Ghana http://ugspace.ug.edu.gh 1.7 Significance of the Study ............................................................................................... 11 1.8 Organisation of the Study ............................................................................................... 11 CHAPTER TWO ........................................................................................................................ 13 LITERATURE REVIEW .......................................................................................................... 13 2.1 Introduction .................................................................................................................... 13 2.1.1 Health information needs and Literacy ................................................................... 13 2.1.2 Health Information Literacy ................................................................................... 14 2.2 Health Information Needs of Breast Cancer Patients.................................................... 17 2.3 Health Information Sources of Breast Cancer Patients ................................................. 24 2.4 Socio-demographic Factors and Health Information Needs and Sources ...................... 28 2.5 Evaluation of Health Information Sources of Breast Cancer Patients .......................... 31 2.6 Summary of Literature Review ...................................................................................... 32 CHAPTER THREE .................................................................................................................... 34 RESEARCH METHODOLOGY .............................................................................................. 34 3.1 Introduction .................................................................................................................... 34 3.2 Research Design and Approach ..................................................................................... 34 3.3 Research Setting ............................................................................................................. 35 3.3.1 The 37 Military Hospital ......................................................................................... 36 3.3.2 The Sweden Ghana Medical Centre (SGMC) ........................................................ 37 3.4 Selection of Participants ................................................................................................. 38 vi University of Ghana http://ugspace.ug.edu.gh 3.4.1 Population of the Study ........................................................................................... 38 3.4.2 Sample Size ........................................................................................................... 39 3.4.3 Sampling Technique ............................................................................................... 41 3.5 Data Collection Instrument ............................................................................................ 43 3.6 Ethical Considerations.................................................................................................... 46 3.7 Data Collection ............................................................................................................... 47 3.7.1 Pilot Study ............................................................................................................... 47 3.7.2 Main Study .............................................................................................................. 48 3.8 Data Analysis ................................................................................................................. 49 CHAPTER FOUR ....................................................................................................................... 50 DATA ANALYSIS AND FINDINGS ........................................................................................ 50 4.1 Introduction .................................................................................................................... 50 4.2 Demographic Characteristics of Participants ................................................................. 51 4.2.1 Age of Participants .................................................................................................. 51 4.2.2 Marital Status of Participants .................................................................................. 52 4.2.3 Educational Level of Participants ........................................................................... 53 4.2.4 Occupation of Participants ...................................................................................... 54 4.2.5 Religious Affiliation of Participants ....................................................................... 55 4.2.6 Distribution based on health facility ....................................................................... 56 4.3 Assessing Reliability of the Questionnaire .................................................................... 57 vii University of Ghana http://ugspace.ug.edu.gh 4.4 Information Needs of the Breast Cancer Patients .......................................................... 58 4.4.1 Disease-specific Information Needs ....................................................................... 58 4.4.2 Diagnosis Information Needs ................................................................................. 61 4.4.3 Treatment Information Needs ................................................................................. 62 4.4.4 Physical Care Information Needs ........................................................................... 64 4.4.5 Psychosocial Care Information Needs .................................................................... 66 4.4.6 Comparison of Domains of Information Needs ...................................................... 68 4.4.7 Educational Level and Information Needs ............................................................. 69 4.5 Sources of Information among the Participants ............................................................. 71 4.6 Evaluation of Information Content and Sources ............................................................ 73 4.7 Information needs and coping with breast cancer among the participants .................... 75 4.8 Challenges and Barriers to Information Seeking ........................................................... 77 CHAPTER FIVE ........................................................................................................................ 79 DISCUSSION OF FINDINGS ................................................................................................... 79 5.1 Introduction .................................................................................................................... 79 5.2 Information Needs of Breast Cancer Patients ................................................................ 80 5.3 Information sources of breast cancer patients ................................................................ 83 5.4 Evaluation of information content and sources .............................................................. 85 5.5 Information needs and coping with breast cancer .......................................................... 86 5.6 Challenges and barriers to information seeking ............................................................. 87 viii University of Ghana http://ugspace.ug.edu.gh CHAPTER SIX ........................................................................................................................... 89 SUMMARY, CONCLUSION AND RECOMMENDATIONS .............................................. 89 6.1 Introduction .................................................................................................................... 89 6.2 Summary of Findings ..................................................................................................... 89 6.2.1 Information Needs of Breast Cancer Patients ......................................................... 89 6.2.2 Information Sources of Breast Cancer Patients ...................................................... 92 6.2.3 Evaluation of Information ....................................................................................... 92 6.2.4 Information needs and coping with breast cancer ................................................... 92 6.2.5 Challenges and barriers to information seeking...................................................... 93 6.3 Conclusion ...................................................................................................................... 93 6.4 Implications and Recommendations of the Study .......................................................... 94 6.4.1 Implications and recommendations for practice on breast cancer care .................. 94 6.4.2 Implications for Theory on Breast Cancer Care ..................................................... 97 6.5 Limitations of the study.................................................................................................. 97 6.6 Suggestions for Future Studies ....................................................................................... 99 REFERENCES .......................................................................................................................... 100 APPENDICES ........................................................................................................................... 106 A: ETHICAL APPROVAL FROM 37 MILITARY HOSPITAL .......................................... 106 B: INFORMED CONSENT FORM ....................................................................................... 107 C: QUESTIONNAIRE ............................................................................................................ 110 ix University of Ghana http://ugspace.ug.edu.gh LIST OF TABLES Table 4. 1: Age of Participants ..................................................................................................... 52 Table 4. 2: Marital Status of Participants ...................................................................................... 52 Table 4. 3: Educational Level of Participants ............................................................................... 53 Table 4. 4: Occupation of Participants .......................................................................................... 54 Table 4. 5: Religious Denomination of Participants ..................................................................... 55 Table 4. 6: Distribution based on health facility ........................................................................... 56 Table 4. 7: Reliability of Scales Used ........................................................................................... 57 Table 4. 8: Disease-specific Information Needs among the Participants ..................................... 58 Table 4. 9: Diagnosis Information Needs ..................................................................................... 61 Table 4. 10: Treatment Information Needs ................................................................................... 63 Table 4. 11: Physical Care Information Needs ............................................................................. 65 Table 4. 12: Psychosocial Care Information Needs ...................................................................... 66 Table 4. 13: Comparisons of Domains of Information Needs ...................................................... 68 Table 4. 14: Educational Level and Information Need ................................................................. 70 Table 4. 15: Information Sources among the Participants ............................................................ 71 Table 4. 16: Evaluation of Information among Participants ......................................................... 73 Table 4. 17: Information and Coping with Breast Cancer ............................................................ 75 Table 4. 18: Challenges and Barriers to Information Seeking ...................................................... 77 x University of Ghana http://ugspace.ug.edu.gh LIST OF FIGURES Figure 1: Wilson’s Model of Information Seeking Behaviour ....................................................... 8 Figure 2: Kuhlthau’s Information Search Process Model............................................................. 10 Figure 3: Proportion of Participants from the 2 Hospitals ............................................................ 56 Figure 4: Bar Graph Showing Comparison of Information Needs ............................................... 69 xi University of Ghana http://ugspace.ug.edu.gh LIST OF ABBREVIATIONS AND ACCRONYMS 37MH - 37 Military Hospital 37MH-IRB - 37 Military Hospital Institutional Review Board CCQ - Cancer Coping Questionnaire LMICs - Low and Middle Income Countries KATH - Komfo Anokye Teaching Hospital KAP - Knowledge, Attitudes, Practices SGMC - Sweden Ghana Medical Centre SPSS - Statistical Package for Social Science WHO - World Health Organisation xii University of Ghana http://ugspace.ug.edu.gh ABSTRACT Health information literacy plays a critical role in self-management practices among patients living with chronic health conditions. However, there are limited studies on information needs and sources among breast cancer patients in Ghana. The current study therefore investigated the information needs and sources among women living with breast cancer in the treatment and management of breast cancer in Ghana. The study was conducted in two health facilities in Accra, Ghana namely 37 Military Hospital, and Sweden Ghana Medical Centre. A total of 75 breast cancer patients were conveniently selected from the two health facilities for the study. The data was collected with questionnaire using the survey design and analysed descriptively. Findings showed that information needs of the patients centred mainly around treatment and management information and less around preventive information. The patients ranked diagnostic information as their highest needs, followed by physical care information needs, treatment information needs, psychosocial information needs and disease-specific information needs, in that order. Patients with higher education reported higher information need on all the five domains compared to those with lower education. Their main sources of information are biomedical health practitioners, notably doctors, nurses and pharmacists. They indicated that information helped them in coping with both the medical and the psychosocial aspects of their breast cancer condition. Nonetheless, they faced barriers in their information seeking behaviour which ranged from personal challenges to institutional challenges. It is recommended that health information literacy is made an integral component of treatment and management of breast cancer. xiii University of Ghana http://ugspace.ug.edu.gh CHAPTER ONE INTRODUCTION 1.1 Background to the Study Breast cancer is one of the common debilitating conditions affecting women associated with high morbidity and mortality. Breast cancer has been rising among women, especially those in low and middle income countries (LMICs). More than half of all diagnoses, morbidity and mortality associated with breast cancer are found in LMICs (Thomas et al., 2017; Zaid, Egberongbe, & Adekanye, 2016). In Ghana for instance, the incidence of breast cancer among women is rising with an estimated incidence of about 20 to 35 patients per every 100,000 population (Thomas et al., 2017). Apart from the high incidence, there is also high and increased risk of death among breast cancer patients in Ghana (Gyedu et al., 2017; Thomas et al., 2017). There is therefore the need for concerted efforts to manage breast cancer conditions among women for the purposes of prolonging their survival and ensuring that they function better during and after treatment. With respect to the global aim of prolonging the life of breast cancer patients and also ensuring functionality during and after treatment, there has been a paradigm shift in the approach to the treatment and management of breast cancer condition (Clegg-Lamptey, Dakubo, & Attobra, 2009; Zaidet al., 2016; Playdon et al., 2016). There has been a shift to a more patient-centred model which emphasizes empowering patients to be actively (rather than passively) involved in the treatment and management of their chronic conditions (Ramsey, Corsini, Peters, & Eckert, 2017). In the case of breast cancer, treatment and management models have been moving towards empowering women with breast cancer to educate themselves on their conditions so that they can 1 University of Ghana http://ugspace.ug.edu.gh adopt proper self-care and self-management practices (Engqvist Boman, Sandelin, Wengström, & Silén, 2017; Schardt, 2011; Souden & Rubenstein, 2010). Health information literacy on the part of patients has therefore become an integral component of or contributing factor to effective treatment and management of breast cancer. At the turn of the twentieth century, advances in technology in general and health technology in particular have come with it an increased need for health information depending on health conditions. Women with breast cancer conditions are therefore exposed to different information from a variety of sources all aimed at providing ways of managing breast cancer conditions (Scantlebury et al., 2017). Such proliferation of information sources has both positive and negative consequences. On one hand, having access to a variety of information sources provides breast cancer patients with the opportunity of health education and management practices for managing breast cancer. On the other hand, such proliferation of information sources, usually with profit making aim, can pose health threats to breast cancer patients through wrong information in the form of wrong treatment options or downplaying important information need and exaggerating rather unimportant need (Clegg-Lamptey et al., 2009; Engqvist Boman et al., 2017). Therefore, in the wake of encouraging health information literacy and self-care in the treatment and management of breast cancer, the ability of breast cancer patients to accurately perceive their information needs, evaluate and use the right sources of accessing health information are critical to effective management of their conditions. Given the plurality and complexity of health information sources, knowing what information needs are important, where to access relevant health information and how to evaluate information and their sources would help women with breast cancer to make well-informed health decisions to actively participate in their own care 2 University of Ghana http://ugspace.ug.edu.gh through improved health decision-making (Ramsey et al., 2017). Researches examining information needs and sources are therefore needed to provide deeper insight into how women undergoing breast cancer treatment and management engage in information searching. The study was carried out in two health settings; 37 Military Hospital (37MH) and Sweden Ghana Medical Centre (SGMC). The two health settings are among the few health centres in Greater Accra Region of Ghana that provide specialised care for breast cancer patients. The 37MH for instance is the largest in the region after Korle-bu Teaching Hospital. The SGMC for instance is one of the topmost private health centres committed to providing best private cancer care in West Africa. These two health settings therefore provide insight into information needs and sources for women with breast cancer in Accra. 1.2 Statement of the Problem Breast cancer is a chronic condition that comes with transitional experiences that have long-term implications on the life and identity of patients. Patients’ participation has now become fundamental to holistic breast cancer treatment and management, So many women die of cancer because of lack of knowledge in the proper ways of managing the condition. This is attributed to health illiteracy of information seeking behaviour and the inability to identify information sources that will educate them on the treatment and management of the disease. Breast cancer patients, therefore, have considerable information needs and how they access and use information significantly impact on their prognosis (Engqvist Boman et al., 2017). There is 3 University of Ghana http://ugspace.ug.edu.gh evidence to suggest that breast cancer patients themselves contribute to worsening their conditions profoundly due to improper treatment and self-management practices due to the kind of information they seek and where they seek such information (Afsal, 2017; Schardt, 2011). The problem is even worse in African countries where there are high levels of illiteracy. In Africa, majority of women diagnosed of breast cancer still engage in some practices (such as visiting the shrine or being held in prayer camps) that further worsen their conditions (WHO, 2017). In Ghana for instance, breast cancer cases are on the rise and killing many women due to poor management (Adusei-Poku, Opoku, & Oppong, 2017). Meanwhile, health knowledge on breast cancer among women diagnosed with breast cancer is very limited compared to those in high income countries ( Thomas et al., 2017). However, there is little or limited research on information seeking behaviours among women diagnosed with breast cancer in Ghana and Africa. For instance, empirical evidence in Ghana concerning information needs and sources among breast cancer patients in particular are scarce. Due to this, there is still limited understanding of the information needs and sources of breast cancer patients in Ghana influence how they manage their conditions. It is in the light of this that the study sought to examine how breast cancer patients seek and evaluate the sources of their health information in order to provide in-depth understanding. 1.3 Purpose of the Study The study sought to investigate the information needs and sources of breast cancer patients in the treatment and management of breast cancer with the view to making some recommendations which would benefit breast cancer patients who seek information on their health status. 4 University of Ghana http://ugspace.ug.edu.gh 1.4 Objectives of the Study The specific objectives of the study were; i. To examine the information needs of breast cancer patients in Ghana and how their educational levels influence their information seeking behaviour. ii. To examine the sources of information available to breast cancer patients. iii. To determine how information needs influence how the patients cope with their breast cancer condition iv. To examine how breast cancer patients evaluate the content and sources of information they receive on breast cancer treatment and management v. To determine the challenges and barriers breast cancer patients face when seeking information vi. To make recommendations based on the findings on ways of improving their information needs and information seeking behaviour 1.5 Scope and Limitation of the Study The study focuses on examining information needs and sources among breast cancer patients in 37 Military Hospital in Accra and the Sweden Ghana Medical Centre. The scope of the study encompasses areas such as examining information needs among the patients, determining the source of information available to the patients, examining how the patients evaluate the sources of their information, analysing how their individual characteristics influence their information needs and sources and finally investigating how their information needs and sources influence their adjustments to their conditions. Apart from these issues, any other factors associated with information seeking behaviours are beyond the scope of the current study. 5 University of Ghana http://ugspace.ug.edu.gh 1.6 Theoretical Framework Theoretical framework plays significant roles in research. It guides the conduct of the entire research process. The fundamental unit of theoretical frameworks is a theory or a model (Tewell, 2015). A theory is defined as a system of ideas that are organised to explain a phenomenon (Lloyd, 2010). Within the context of research, theories shape how ideas and concepts are organised together to achieve the overarching aim or purpose of a study (Mackey & Jacobson, 2011). In this sense, theories are formulated to help in explaining, predicting and understanding, or even challenging assumptions in pre-existing knowledge in order to broaden the boundaries of knowledge (Tewell, 2015). Theoretical framework is, therefore, created by synthesising the arguments and assumptions of more than one theory or model to provide a broader context for guiding research process (Lloyd, 2010). According to Mackey and Jacobson (2011) a theoretical framework acts as a structure that supports the entire research process. The current study is situated within the context of information literacy in general and health information literacy in particular. Information literacy research has seen several models and theories that are used to explain different facets of information literacy (Bruce, Edwards & Lupton, 2006; Tewell, 2015). In this study, attention is focused on information needs and sources and how these influence health information seeking behaviours of women undergoing treatment and management of breast cancer. Two models of information seeking behaviour are used as frameworks for the study. These are the 6 University of Ghana http://ugspace.ug.edu.gh Wilson’s Model of Information Seeking Behaviour and Kuhlthau’s Information Process Model. The models are discussed below. 1.6.1 Wilson’s Model of Information Seeking Behaviour One of the most widely used models of explaining information literacy and information seeking behaviour is Wilson’s Model of Information Seeking Behaviour (Tewell, 2015). Several studies across different parts of the world have used this model to explain information seeking behaviours of different social groups including students, women, teenagers and different kinds of patients (Lloyd, 2010). The popularity in the use of this model is based on its simplicity in assumptions and yet robust nature in the ability of the model to explain critical elements of people’s information seeking behaviours (Bruce et al. 2006; Mackey & Jacobson, 2011). Wilson’s model identifies two critical elements of information seeking behaviour. According to this model, information needs and information sources are the most critical elements of information seeking behaviour, with the former informing the latter (Wilson, 1999). In the first proposal of the model, Wilson (1997) suggested that information seeking behaviour of any kind begins with the realisation of an information need. In later revisions of the model, Wilson (1999), drawing from other applied subfields (such as health communication, psychology and decision- making theory) added other elements such as how the context of information needs and information processing and use influence information seeking behaviour. The need for information then informs information users on where (sources of information) to retrieve such information 7 University of Ghana http://ugspace.ug.edu.gh (Wilson, Ford, Ellis, Foster & Spink, 2002). Thus, information need and sources are influenced by the context (Godbold, 2006). Figure 1: Wilson’s Model of Information Seeking Behaviour Source: Wilson (1997) As shown in Figure 1, the model identifies three aspects of information search. Thus, information seeking behaviour is influenced by both the context of information need and the barriers in accessing or searching for information. The context of information needs shows various factors 8 University of Ghana http://ugspace.ug.edu.gh that influence individuals’ information needs. As shown in Figure 1, the factors that can influence people’s information needs are personal (e.g. health status), social (e.g. the people around) and environmental (e.g. availability of information). In applying this model to the current study, realisation of information need is fundamental to information seeking behaviours among breast cancer patients. The information needs among the patients will be influenced by the context of their health conditions and other related factors such as educational level, occupation, marital status, economic status etc. Realisation of information needs will inform the patient about the possible sources where these information could be accessed. The patients evaluate the information they get as well as the sources and then make decisions to either or not use such information in the management of their conditions. 1.6.2 Kuhlthau’s Information Search Process Model Whiles Wilson’s model explains information seeking behaviours, Kulthau’s model explains the processes of searching for information. Kulthau (1991) takes a search process approach to information search behaviours. The Information Search Process (ISP) assumes three interrelated elements of information searching behaviours; action, feelings and thoughts. According to the ISP model there are elements of feelings (information users feel the need for information, thought (they think about the information) and action (they engage in the action of seeking information) that make up information seeking (Kulthau, 1993). Therefore, whether information searching is successful or not depends on how information seeking behaviours satisfy information users in dealing with their problems (Kulthau, 1999). This means 9 University of Ghana http://ugspace.ug.edu.gh that when information searching behaviour is successful, information users feel better and the vice- versa. Figure 2: Kuhlthau’s Information Search Process Model Source: Kuhlthau (1993) As shown in Figure 2, the process of searching for information entails different stages which involve the task of identifying what information to search, the thoughts of considering different possible sources of information, the feelings associated with the search process, the strategies and the actions of searching for the information. 10 University of Ghana http://ugspace.ug.edu.gh In applying this model to the current study, breast cancer patients invest emotions, thoughts and actions into their information search processes. This means that the outcome of their information searching process can affect the outcome of their health. Thus, when their information seeking behaviour is successful, it will result in better management of their condition and they will adjust better to the condition. Conversely, if their information seeking behaviour is not successful, they will have difficulties managing and adjusting to their condition. 1.7 Significance of the Study The study is very significant because it makes important contributions to practice, policy and theory. In terms of practical contributions, findings from the study also broaden understanding on how information literacy among breast cancer patients influences their treatment and management trajectory. In terms of policy, findings from the study provide relevant insight to health policy in Ghana by showing the government and other institutions on the need to incorporate information literacy into the treatment and management of breast cancer in particular and other related chronic conditions in general. In terms of theoretical contribution, the study contributes to the knowledge based on health information literacy among breast cancer patients in low and middle income countries. 1.8 Organisation of the Study The study is organised into six chapters. 11 University of Ghana http://ugspace.ug.edu.gh Chapter One introduces the study. It covers the background to the study, statement of the problem, objectives of the study, theoretical framework, study settings, scope and limitations of the study, significance of the study, and chapter description. Chapter Two: this chapter is a review of pertinent literature of concepts and related empirical studies on health information literacy and information seeking behaviours, specifically within the context of breast cancer treatment and management. Chapter Three: this contains the research methodology and study framework, and outlines the analytical strategies that were used for the study. This chapter also describes the research design, population, sampling technique and data collection methods and also provides the procedure for data collection and data analysis. Chapter Four: this chapter presents the findings of the study. The results in this chapter are presented in systematic order based on the specific objectives of the study. Chapter Five: this chapter presents the discussions of the results Chapter Six: this is the final chapter of the study. This chapter contains the summary of the findings, conclusion and recommendations from the study based on the findings. 12 University of Ghana http://ugspace.ug.edu.gh CHAPTER TWO LITERATURE REVIEW 2.1 Introduction This chapter reviews literature on information needs and sources within the health context. Concepts are first reviewed to give meanings to the key terms in the study. After that, a review of empirical studies is provided. The literature review focuses on five thematic areas with each theme addressing a particular objective. The themes covered here are; i. Health information needs among breast cancer patients, ii. Demographic factors and health information needs, iii. Health information sources among breast cancer patients, iv. Demographic factors and health information sources and v. Information literacy and treatment outcomes. Under each sub-theme, where applicable, previous studies are discussed from three view points; world view, African view and then Ghanaian view. A summary is then provided to synthesize all studies discussed. 2.2 Health information needs and Literacy Health literacy has been identified as an important component of improving public health systems. This is because, in health literate societies, there are low levels of preventable diseases and proper management of chronic health conditions (Simmons et al. 2017). The World Health Organisation (WHO, 2017) in its health literacy report defines health literacy as the capacity of individuals to obtain, process, understand and use basic health information and services that are needed in 13 University of Ghana http://ugspace.ug.edu.gh making appropriate health decisions. Other researchers (Huang et al. 2017; Parker et al. 2017; Simmons et al. 2017) have also defined health literacy as the ability of people to access, read, understand and use health-related information to improve health and well-being. There are various components of health literacy which include knowledge of causes and risk factors of diseases, knowledge and treatment of chronic conditions, and knowledge of caring for patients (Parker et al. 2017; WHO, 2017). All these aspects of health literacy requires critical engagement with health information. Going by the WHO’s definition and definitions by other researchers, the most critical aspects of health literacy is critical engagement with health information (Son, Kim, Kim & Son, 2017). This suggests that individuals who are able to engage critically with health information become health literate and those who are not able to do that become health illiterate. This means that health information literacy is the hallmark of health literacy (WHO, 2017). It is therefore imperative to understand the dynamics of health information literacy. 2.2.1 Health Information Literacy There have been growing academic interest in research and publications on health information literacy. The topic has become a subject of interest to professionals in different fields of health research and practice. In recent years, health information literacy research and practice has been expanded to include the training of specialised librarians who help other health professionals and patients in accessing health-relevant information sources (Parker et al. 2017). The involvement of librarians in health information literacy research and practice has broadened the scope of discourse 14 University of Ghana http://ugspace.ug.edu.gh around the scope of health information literacy in terms of definitions, conceptualisation and components (WHO, 2017). Health information literacy in a basic sense is defined as the extent to which individuals in general and patients in particular have the capacity to access, process and understand relevant health information that are needed to make appropriate health decisions (Engqvist Boman et al., 2017; Schardt, 2011). Health information literacy is argued to build competence of patients in participating in their own health and well-being. Within the context of chronic health conditions for instance, health information literacy help patients to engage in proper health-enhancing practices in the treatment and management of their chronic health conditions (Huang et al. 2017). Simply stated, health literacy is about consumers being able to understand the medical information their caregivers give them (Huang et al. 2017). It also applies to understanding the information they find through the Internet and being able to use that information to make good decisions about their own course of care (Engqvist Boman et al., 2017; Schardt, 2011). Many medical librarians offer services to help patients and consumers find the best available and current information (Parker et al. 2017; WHO, 2017). Health information literacy is a simple yet complex and integrate concept. At its basic level, there are two essential elements of health information literacy are recognising health information needs and identifying appropriate health information sources (Schardt, 2011). These elements are discussed below. 15 University of Ghana http://ugspace.ug.edu.gh 2.2.1.1 Health Information Needs A fundamental aspect of health literacy in general and health information literacy in particular is the information needs of individuals. Health information needs influenced what patients do in the treatment and management of their health conditions (Parker et al. 2018). Health Information need has been defined as the subjective evaluation of patients in relation the health information they consider as important in helping them manage their conditions (Akuoko et al., 2017; Clegg- Lamptey et al., 2009). What patients identify as their health information priorities influence when and where they seek for such information (Son et al. 2017). Health information needs require critical health needs assessment where patients examine issues relating to their health such as their immediate health concerns, opportunities and barriers for meeting those concerns (Couture, Chouinard, Fortin & Hudon, 2017). The product of health needs assessment is a hierarchical arrangement of information needs based on their subjective health priorities (Simmons et al. 2017). Health information needs, therefore, influence the sources from where patients access their health information. 2.2.1.2 Health Information Sources An integral aspect of the current public health landscape is the emergence of unprecedented high number of sources from which individuals obtain information including health information (WHO, 2017). There are countless number of places and avenues where individuals can and do obtain information regarding their health. Information sources are therefore defined as the various 16 University of Ghana http://ugspace.ug.edu.gh avenues, outlets or places from which patients obtain health information that they use to manage their conditions (Scantlebury, Booth, & Hanley, 2017). People seek health information from variety of sources including hospitals, mass media, social media, places of worship, family and friends, self-styled healers etc. The problem with such countless number of sources of health information is that some sources of information can worsen health conditions (Parker et al. 2018). Therefore, according to WHO (2017), health information literacy does not only require identifying health information needs but also ensuring that health information is obtained from credible sources. 2.3 Health Information Needs of Breast Cancer Patients This theme discusses previous studies that have examined information needs among breast cancer patients. Other related studies that have examined information needs among individuals with other types of cancers are also included in the discussion. The essence is to provide a holistic understanding of the information needs of patients undergoing treatment and management of cancer in general and breast cancer in particular. The fundamental question addressed in this section is what concerns or issues do patients with cancer in general and breast cancer in particular consider as information needs when it comes to the treatment and management of their condition? It is important for all stakeholders in breast cancer treatment and management to understand patients’ healthcare information literacy in the form of information needs (Graffigna, Barello, Bonanomi, & Riva, 2017; Ramsey et al., 2017). However, the focus of breast cancer treatment and 17 University of Ghana http://ugspace.ug.edu.gh management has been on the medical side, with little research attention paid to how information literacy among the patients themselves influences how they treat and manage their condition. A recent systematic review shows that information constitutes one of the key unmet needs among breast cancer patients (Engqvist Boman et al., 2017). This is consistent with several empirical studies that have found that breast cancer patients rate very poorly on health information in general and breast cancer management information in particular (Gyedu, Gaskill, Boakye, Anderson, & Stewart, 2017; Playdon et al., 2016; Thomas et al., 2017; Zaidet al., 2016). Research findings from various studies (e.g. Clegg-Lamptey, Dakubo, & Attobra, 2009; Ramsey, Corsini, Peters, & Eckert, 2017) show that patients undergoing treatment and management of cancer in general and breast cancer in particular face several health information needs. This trend in the findings has been reported in both high and low income countries. However, the content of the specific informational need differs to some extent among patients in high income countries and those in low and middle income countries. The literature broadly shows that patients in high income countries report vast categories of information needs compared to those in low and middle income countries like those in Africa (Gyedu, Gaskill, Boakye, Anderson, & Stewart, 2017; Thomas et al., 2017; Zaidet al., 2016). In a more recent systematic review on consumer health information needs conducted by Ramsey et al. (2017) in Australia , the findings indicated that, apart from general health information needs, cancer patients reported high information needs regarding these specific areas: cancer-specific information, treatment-specific information, information on side-effects of treatment and 18 University of Ghana http://ugspace.ug.edu.gh management practices, prognosis, psychological support information, nutritional information, alternative treatment information or availability of new experimental treatments, information on exercise and physical activities, information on general body image and sexuality, information on finances as well as medication prescription and over the counter drugs. This suggests that information on cancer is very relevant to cancer patients. In a study of health information needs and preferences among cancer patients in the United States of America, Playdon et al. (2016) reported among a large sample of 3138 long term cancer survivors that they reported high need for information on specific cancers sometimes even 9 years after diagnosis. These findings suggest that information needs are fundamental to both breast cancer patient’s currently undergoing treatment and management and those who have survived cancer for years. In a related study that examined how women with breast cancer in Sweden learn and understand their condition, Engvist Boman et al (2017) found that part of the women’s concerns have to do with how to even interact with the diversity of information they are exposed to. In this qualitative study, the participants indicated that in the early stages of diagnosis where they are finding difficulties with understanding and managing their conditions, they are exposed to vast diversity of information and therefore face the problem of identifying which of the information they should focus on. The researchers argued that such a situation makes the women vulnerable to their condition. This means that how to even interact with diversity of information on breast cancer constitutes a burdensome information need for women diagnosed with breast cancer. 19 University of Ghana http://ugspace.ug.edu.gh Similar trends in findings have been reported among cancer patients in the United Kingdom (Scantlebury et al., 2017) and Italy (Graffigna et al., 2017). Empirical evidence in both countries suggests that there are reports of several and diverse health information needs for individuals diagnosed with one form of cancer or another and other health conditions which are considered to be chronic and long lasting. The situation in Africa is somehow related to findings from studies in high income countries. Even though research on information needs of cancer patients in general and breast cancer patients in particular are scarce in Africa, nevertheless, there are some areas of differences between findings in Africa and those in other areas. In terms of the similarities of findings, a study by Mekuria, Erku and Belachew, (2016) that examined information needs of cancer patients in Ethiopia showed that the patients reported diverse information needs. Their topmost priorities were cancer-specific information, information on side-effects of treatment options and information on prognosis and survival. Similar findings have also been reported in Nigeria in a study by Zaidet al., (2016) where quantitative study involving 125 women undergoing breast cancer treatment showed that information to help them understand breast cancer was rated as the most important need, followed by other information such as side effects of the treatment option, medication and prognosis and survival. In Ghana, research studies on information needs of breast cancer patients are scarce, reflecting the general situation in Africa. The reason is attributed to the fact that there is inadequate research on breast cancer from the social science perspective which could have provided enhanced understanding of the long term management of the condition by patients (Atobrah, 2013). A review of cancer research in Ghana between 1956 and 2012 by Atobrah (2013) showed that breast cancer was the most studied type of cancer. Out of a total of one hundred and five (105) published studies 20 University of Ghana http://ugspace.ug.edu.gh on cancer in Ghana, eighty-nine (89%) of them were based on biomedical research on all types of cancers in Ghana. The study further showed that breast cancer was the most studied type of cancer (34 studies representing 32.4%) in Ghana. However, out of the 34 studies on breast cancer, biomedical research dominated with 28 studies, with the remaining 6 being in the social sciences. A thematic analysis of the 6 studies showed that the social science studies focused on general knowledge, attitudes and practices on breast cancer screening, reasons for late presentation to hospitals, treatment disengagement and cost effectiveness of breast cancer treatment options (Atobrah, 2013). Findings from Atobrah’s (2013) study shows that not only is social science research on breast cancer scarce in Ghana, but published research from information literacy perspective on breast cancer in Ghana was completely absent for the first half a century post-independence. At the turn of the twenty-first century (post 2000s), social science research on breast cancer in Ghana began increasing steadily. Even at that, most of the studies focused on knowledge, attitude and beliefs concerning breast cancer screening, treatment and management. Because of this, most of the related studies focus on examining health seeking behaviour among breast cancer patients, without a specific focus on their health information needs that may drive their health seeking behaviours (Agbokey, 2014). For instance, Clegg-Lamptey, Dakubo and Atobra (2009) examined the psychosocial aspects of breast cancer treatment in Accra. They conducted the study among a group of eighty-nine (89) breast cancer patients who have undergone treatment from 1 to 22 years. They used qualitative 21 University of Ghana http://ugspace.ug.edu.gh methods through the use of in-depth individual interviews. The findings from the study showed that there were lots of information gaps in the treatment processes. Clegg-Lamptey et al. (2009) observed that mastectomy was the most common treatment (86%) and chemotherapy was observed to be the most unpleasant (65.2%) aspect of the treatment but the patients were not educated on chemotherapy as a treatment option. Most of the patients did not receive counselling and therefore had serious information gaps on the treatments they were receiving. Clegg-Lamptey et al. (2009) therefore reported that majority of the patients reacted in negative ways including being frightened or terrified, shock, weeping, depression and fear of death due to lack of information and communication. Similar findings have been reported in a study that examined health seeking among breast cancer patients. Agbokey (2014) for instance examined health seeking behaviours among breast cancer patients at the Komfo Anokye Teaching Hospital (KATH) and reported that knowledge on breast cancer was very poor among the patients before their diagnosis but improved steadily after their diagnosis and further improved during their treatments. The participants also reported high levels of fear of the diagnosis due to fear of death and misinterpretations of signs. Agbokey (2014) reported further that the patients who had appreciable information on breast cancer were more successful in the treatment and the management process of their condition. Such patients also had lower levels of fear compared to those with little or no information on breast cancer. Findings from both Clegg-Lamptey et al.’s (2009) and Agbokey’s (2014) studies bring two issues to bare. First, information on breast cancer on the part of patients is critical to the treatment and 22 University of Ghana http://ugspace.ug.edu.gh management process of the condition. Information that breast cancer patients have on their condition influence how they experience their treatment and management processes in the hospital settings. Second, the study underscores high information need in the treatment and management of breast cancer, especially in a country where illiteracy levels are high. This means that teaching patients how and where to source for information on breast cancer is a critical gap in the treatment and management of breast in Ghana. It appears that the healthcare system in Ghana only relies on the expert information of the medical staff in managing breast cancer in the country. However, breast cancer patients are capable of understanding some of the basic information about their condition only if such information will be made available to them. This is evidenced in a study by Mena, Wiafe-Addai, Sauvaget, Ali, Wiafe, Dabis and Sasco (2014) on breast cancer awareness in a rural community in Ghana. Their study was based on the fundamental idea that relevant information on the part of the general public is crucial to early detection, treatment and management of breast cancer. In breast cancer information intervention study, they randomised two rural communities in Ashanti region into experimental community (where they provided public education on breast cancer) and control community (that did not receive such education on breast cancer). After that, they surveyed 232 members of the two communities (intervention community = 131, control community = 101) on knowledge, attitudes and practices (KAP) toward breast cancer. They found that individuals in the community that received the public knowledge scored higher on breast cancer information regarding breast self-examination, early detection, screening, treatment options and good management practices. 23 University of Ghana http://ugspace.ug.edu.gh Findings from Mena et al. (2014) underscore the critical role of information need in the prevention, treatment and management of breast cancer. Women with breast cancer who do not have relevant information on the condition might even disengage in treatment procedures in ways that could worsen their conditions. This is evident in a study by Obrist, Osei-Bonsu, Awuah, Watanabe- Galloway, Merajver, Schmid and Soliman (2014) in Ashanti region of Ghana that sought to identify patient and systemic factors associated with treatment disengagement. The study was conducted at the Komfo Anokye Teaching Hospital (KATH) in Kumasi where a total of one hundred and seventeen (117) breast cancer patients and their family caregivers were interviewed between 2008 and 2010. They observed that lack of information regarding treatment procedures, lack of information on health insurance coverage and use of traditional healers accounted for treatment disengagement among the patients. They therefore recommended that providing in- depth information to patients is critical in encouraging them to complete treatment. 2.4 Health Information Sources of Breast Cancer Patients Information sources are integral part of information literacy when it comes to breast cancer treatment and management. The sources from which patients obtain information can influence them to engage in certain practices that can either improve or worsen their condition. This theme discusses research findings on sources of health information among breast cancer patients undergoing treatment and management. The main issue addressed here is the dominant sources where cancer patients in general and breast cancer patients in particular obtain or access health information from. 24 University of Ghana http://ugspace.ug.edu.gh There has been a rise in interest in researching source where patients managing chronic conditions obtain information about their conditions. Some of the studies (Mayer, 2017; Schardt, 2011) show that there are several sources where cancer patients seek information from. These sources included professional health workers (such as doctors and nurses), non-professionals (such as family and friends) internet and social media (such as health websites), print media (such as newspapers, magazines and brochures), non-print media (such as television and radio stations) and body listening or bodily experiences (Mekuria et al., 2016; Thomas et al., 2017; Zaidet al., 2016). However, there are contextual differences regarding which sources of information are used predominantly based on geographic locations. Findings from the various studies conducted in high income countries show that technology oriented sources constitute predominant sources of health information in European, Australian and American countries (Engqvist Boman et al., 2017; Playdon et al., 2016; Ramsey et al., 2017). For instance, sources such as the internet (e.g. health websites and websites of cancer institutions) are major sources of information for cancer patients in America, United Kingdom, Australia, Italy, Sweden and others (Playdon et al., 2016; Ramsey et al., 2017). However, apart from technology-mediated sources, cancer patients still rely on sources such as print media (e.g. publications, newspapers, magazines etc.), health professionals (e.g. oncologists, general physicians, nurses etc.), family and friends. In Africa however, the sources of health information among patients in general are different from those observed in high income countries. The WHO’s (2017) report on health information literacy shows that majority of Africans rely less and less on technology-mediated sources. The report 25 University of Ghana http://ugspace.ug.edu.gh suggest further that most Africans prefer face-to-face sources of health information as against self- reliant sources such as reading health books or internet articles. Several systematic reviews suggests that sources of health information in Africa are diverse, and reflect the pluralistic nature of health delivery system (Ramsey et al. 2017). In a synthesis of literature on women’s autonomy in health-care decision-making in developing countries, Osamor and Grady (2016) reported that majority of women in Africa rely on others such as family members and community neighbours as their main source of information on health. They reported that this is more prevalent in West and East African countries. The WHO (2017) report actually suggests that patients who are managing chronic health conditions such as stroke, hypertension, diabetes and all forms of cancer rely more on family and friends for information on treatment options and medicines. This trend in sources of health information among chronic disease patients in general has been observed among breast cancer patients in particular. In Nigeria for instance, Zaidet al. (2016) reported in their study that the main source of health has been professionals health workers (e.g. doctors, and nurses) followed by family and friends and mass media (e.g. television and radio stations). Other independent sources such as the internet and other print materials were found to feature as less dominant health information sources. In Ghana, research studies examining sources of health information among breast cancer patients are very limited. However, the few studies that have assessed this indirectly shows that the sources of health information fall within professional sources and non-professional sources. The 26 University of Ghana http://ugspace.ug.edu.gh professional sources are those sought from medical professionals like doctors, nurses, pharmacists etc. The non-professional sources are those sought from individuals not trained in medical knowledge. The study by Agbokey (2014) also reported that family and friends are dominant source of information for breast cancer patients. The patients depend on their families and significant others as much as they depend on professional health workers for their health information. The findings by far show fundamental differences in sources of health information among cancer patients depending on whether they are in high income countries or LMICs. Another study by Wiafe, Addai, Ansong and Schuierer (2014) that examined factors that lead to delayed breast cancer presentation in Ghana reported that majority of women diagnosed with breast cancer first seek treatment from herbal and faith-healers. They argued that these women chose such places as their first point of call for their conditions because informal sources constitute their primary sources of information on health, especially when it comes to chronic condition like cancer. Similar findings have been reported by other studies in Ghana. Asumah and Nachinaab (2017) for instance examined community knowledge and perceptions towards breast cancer in Ghana. They surveyed a total of one hundred and ninety-seven (197) women with breast cancer in the Sekyere East district of Ashanti region. The results of the study indicated that majority of the women got to know about their breast cancer conditions in the hospital. However, prior to being diagnosed by medical doctors, majority of them had been using herbal medicines and prayer camps for curing their diseased breast. The women also reported that they perceived clinical breast examination as expensive and time wasting and, therefore, preferred other ways of examining their breast. 27 University of Ghana http://ugspace.ug.edu.gh In a recent study, Opoku and Benwell (2018) examined knowledge, attitudes, beliefs and breast cancer screening practices in Ghana. They conducted the study among a sample of two hundred and twelve (212) women between the ages of 23 – 56 years of age. The part of the study examining the sources of their knowledge on breast cancer showed that majority of them got their information from other women who have been diagnosed of breast cancer. Some of them also mentioned other sources including health programmes on television stations, health programmes on radio, health educations at church and peer conversations at work. 2.5 Socio-demographic Factors and Health Information Needs and Sources Health information needs and sources among patients in general is influenced by several factors. Some of the key factors that influence information needs and sources of patents are their socio- demographic factors. For instance, there is the argument for instance that male and female patients managing chronic conditions sometimes tend to have different information needs (Playdon et al., 2016).This theme discusses research findings on socio-demographic factors that influence health information needs among cancer patients in general and breast cancer patients in particular. The main question examined here is the extent to which information needs among cancer patients are influenced by socio-demographic characteristics of the patients. In a study by Playdon et al's, (2016) among long term cancer-survivors in the United States, age was found to play a significant role in information needs of cancer patients. Young patients were found to report greater information need compared to older patients. Age is also found to influence 28 University of Ghana http://ugspace.ug.edu.gh information sources as well. Ramsey, Corsini, Peters, and Eckert, (2017) for instance have reported that young patients in Australia were found to rely more on the internet as a source of health information compared to adult patients. Older patients on the other hand were found to depend more on health professionals as their main source of health information compared to young patients. Apart from age, severity of the condition has an influence on information needs of the patients. Playdon et al., (2016) found that patients who reported high severity of the condition also reported high information need. Studies undertaken in Africa suggest low knowledge of breast and cervical cancer awareness. This tends to impact on attitudes to undertake of screening resulting in late diagnosis in many women. Again, fatalism, fear, embarrassment, lack of trust in health services, lack of education has been cited as barriers to early presentation of the disease in African American women. In some African countries, some studies report that women with breast cancer must be abreast with information regarding the disease. Sources of information include a range of interpersonal providers, including hospital consultants, breast care nurses, general practitioners (GPs), ward and clinic nurses, family and friends (Wiafe et al., 2017; Zaidet al. 2016). Others also use the mass media such as the internet, newspapers, books, the radio and television. Varied findings regarding the use of the internet by breast cancer patients for information have been reported, for example, fewer than 10% of breast cancer patients use the internet to seek information about their cancer (Mills & Davidson, 2002). 29 University of Ghana http://ugspace.ug.edu.gh Zaidet al., (2016) have reported among breast cancer patients in Nigeria that due to low levels of education among the patients, their main source of preferred health information is from their professional health workers. In other studies, the media (television, radio and newspaper) was reported as a major source of information for nearly three-fifth of the study participants (Playdon et al., 2016). Two hundred (29.6%) of the respondents who reported to have had information on breast cancer mentioned colleagues /friends/neighbours as their major information source. The contribution of health professionals as a source of breast cancer-related information was however found to be very minimal 10. (1.5%) (Zaidet al. 2016) Mekuria et al., (2016) have also reported similar trends among cancer patients in Ethiopia. They reported a much higher number of internet use of between 40% – 45%. These findings further indicate that breast cancer internet users tend to be younger with a higher education level than non- users. In Ghana, studies have begun to show the important role played by religion in health seeking behaviours among breast cancer patients. A comparative study of breast cancer perceptions conducted by Gyedu et al., (2017) among Muslim and Christian women in Ghana shows that the Muslims reported higher perceptions compared to the Christians. However, the Muslims were found to be less likely to engage in breast self-examinations compared to the Christian women. Due to this, the Muslim women were found to be less likely to source for information on breast self-examination. Religion has also been found to influence health behaviours. For instance, some studies in the Middle East, Somalia, and Asia, Muslim women have repeatedly reported that modesty, gender preferences, a lack of community discussion about breast cancer, fear of breast cancer that prevents 30 University of Ghana http://ugspace.ug.edu.gh breast feeding, and the reluctance of clinicians to provide education or recommend screening methods prevent them from receiving the standard of care These findings relate to other findings in Africa where Muslim women have been found to be generally less likely to participate in breast health activities compared with Christian women, which highlights the need to consider how religious customs within subpopulations might impact a woman’s engagement in breast health activities (Zaidet al., 2016). As breast awareness initiatives are scaled up in African countries, it is essential to consider the unique perception and participation deficits of specific groups (Mekuria et al., 2016). These findings mean that demographic characteristics are very important when examining health information seeking behaviours. It is therefore imperative to understand how socio-demographic characteristics also influence health information needs and sources among breast cancer patients in Ghana. 2.6 Evaluation of Health Information Sources of Breast Cancer Patients WHO’s (2017) health literacy report indicates that all patients, whether literate or illiterate engage in the process of evaluating the health information they receive in one way or another. However, different patients evaluate their health information differently. This theme discusses research findings on how cancer patients in general and breast cancer patients in particular evaluate the content of the health information they receive from the various sources. A study by Ramsey et al. (2017) points that cancer patients’ use information from several sources for variety of reasons. They use such information to: understand causes and effects of the 31 University of Ghana http://ugspace.ug.edu.gh condition, choose health care provider, choose treatment and management options, seek alternative treatment, modify lifestyle behaviours, as supplement to information provided by health professionals and seek psychological and emotional support. However, not every information from all sources may be accurate and relevant to their health condition. Therefore, the fundamental question addressed in this section is how cancer patients evaluate the content of the sources of information they receive from the various sources of information. There is paucity in research studies addressing this question directly at the global level. Therefore, findings from studies that indirectly address this concern are discussed here. Research findings in high income countries show that patients are made aware by health professionals on the quality of information sources, especially on the internet. Scantlebury et al. (2017) for instance have reported that health professionals inform patients which internet sources are more credible for cancer information and which are less credible. Therefore, patients avoid using information from less credible sources like Wikipedia and trusting and using more information from credible sources like information available on homepages of cancer research institutions. The American Cancer Association for instance has, therefore, instituted a form of established quality assessment criteria in order to help patients evaluate the information that come to them. 2.7 Summary of Literature Review It has emerged from the literature review that cancer patients in general and breast cancer patients in particular have different kinds of health information needs. The health information needs identified in the literature range from cancer-specific information need to adjustment information 32 University of Ghana http://ugspace.ug.edu.gh need. Breast cancer patients were also identified to seek information from variety of sources ranging from technology-mediated sources to interpersonal sources. The literature shows further that there are fundamental differences in information needs and sources between patients in high income countries and those in LMICs. The differences are somehow explained by differences in educational and literacy levels and economic status in the various contexts. However, there is also limited understanding concerning how patients evaluate health information, especially in African contexts. This is because there is a limited empirical study conducted in Africa in general and Ghana in particular on information needs of breast cancer patients. The current study therefore makes substantial contribution to understand the situation in Ghana in particular and Africa in general. 33 University of Ghana http://ugspace.ug.edu.gh CHAPTER THREE RESEARCH METHODOLOGY 3.1 Introduction This chapter presents the methodology for gathering the data for the study. The sections captured here are: research design and approach, research setting, selection of participants (population of the study, sample, and sampling techniques), data collection instrument, ethical consideration, data collection procedures (where pilot and man study are discussed) and data analysis. 3.2 Research Design and Approach A research approach is defined as the overall strategy that is chosen to integrate different parts of a study in a coherent manner to address a research question (Ary, Jacobs, Irvine & Walker, 2018). Nardi (2018) also defined a research design as the specific ways and processes or techniques that a researcher follows in gathering and analysing data. Research approaches fall into two broad categories which are qualitative research and quantitative research (Creswell & Creswell, 2017). Quantitative researches are usually undertaken using numbers as the basic data for analysis among a large sample of people while qualitative research uses mostly narratives or observations as data for analysis among a small sample of participants (Creswell & Creswell, 2017). In some cases however, both qualitative and quantitative methods are combined to form a mixed-method design. 34 University of Ghana http://ugspace.ug.edu.gh The choice of which approach to use depends mainly on the research question under investigation and whether or not the issue is well researched within the context of the study (Ary et al. 2018). In the current study, a quantitative research approach was used. The quantitative approach was used because the study sought to explore information needs and sources among a sample of breast cancer patients. Specifically, the cross-sectional survey design was used to gather the data. Cross- sectional survey is defined as a data collection method where a researcher collects data from a representative cross section of the population of interest in order to understand the situation (Creswell & Creswell, 2017). The cross-sectional survey design was chosen because it is appropriate for descriptive, explanatory and exploratory purposes and is mostly used in studies that have the individual as the unit of analysis (Ary et al. 2018). The adoption of the cross-sectional quantitative survey design allowed for data to be collected on a large number of breast cancer patients so that results could be generalised (Creswell & Creswell, 2017; Nardi, 2018). 3.3 Research Setting A research setting is defined as the location or the place where the data for a study are gathered (Creswell & Creswell, 2017). Research settings can be organisations or institutions, community, district, region or a country based on what the focus of the study is. The current study was an institutionally-based research where the sample was taken from a hospital setting. Specifically, the current study was conducted in two health settings: The 37 Military Hospital (37MH) and the Sweden Ghana Medical Centre (SGMC). The two health settings are among the few health centres 35 University of Ghana http://ugspace.ug.edu.gh in the Greater Accra Region of Ghana that provide specialised care for breast cancer patients. The 37MH is the largest in the region after the Korle-Bu Teaching Hospital. The SGMC is also one of the topmost private health centres committed to providing best cancer care in West Africa. These two health settings therefore provide insight into information needs and sources for women with breast cancer in Accra. 3.3.1 The 37 Military Hospital The 37 Military Hospital is a specialist hospital located in the Ayawaso Metropolis in the Greater Accra Region of Ghana. Information available on the hospital’s homepage indicates that it hospital is located on the main road that links central Accra to the Kotoka International Airport, and about 600 meters walk from the Jubilee House, the official seat of the Presidency in Ghana. Due to the central location of the hospital, it is easily accessible. The 37 Military Hospital was established on 4th July, 1941 as the 37th health facility by the allied forces in the then Gold Cost. The hospital was meant to provide treatment for troops that were or would be injured during the Second World War. The hospital was initially named as the No. 37 General Hospital and was changed in 1956 to 37 Military Hospital. The hospital was later opened to the general public and since then has become instrumental in healthcare delivery in Ghana. A Ghana Health Service Report (GHS, 2016) indicates that the 37 Military Hospital is the third largest hospital in the country after the Korle-bu Teaching Hospital and the Komfo Anokye Teaching Hospital. 36 University of Ghana http://ugspace.ug.edu.gh The hospital has a total capacity of about 500 beds and there are a number of ongoing projects to expand it further. There is a 24-hour accident and emergency services department. Other departments in the hospital include an outpatient department, dental department, public health department, medical department, obstetrics and gynaecology, paediatrics department, pathology department, surgical department, veterinary service department, shopping mall and pharmaceutical department. There are also a number of units (e.g. Burns Unit and Intensive Care Unit) in these departments and division of which the Breast Cancer Units is one of its busiest. Due to the capacity and central location, the hospital is also used as a teaching facility for post graduate training of medical students in Ghana. Because of its central location, the hospital receives referrals from health facilities in Accra and those from other surrounding regions such as the Central, Western and Eastern regions and parts of the Volta region (GHS, 2016). The 37 Military Hospital, therefore, provides care and treatment to individuals from diverse socio- economic backgrounds across a greater part of the country. The hospital is, therefore, well-suited for researching information needs and sources of breast cancer patients, an issue that is under explored. The findings from the hospital would provide insight into the information needs and sources of other breast cancer patients in different parts for Ghana. 3.3.2 The Sweden Ghana Medical Centre (SGMC) The Sweden Ghana Medical Centre (SGMC) is a cancer specialist health facility located at the East Legon Hills within the Accra Metropolis in Greater Accra Region of Ghana. The SGMC seeks to become the role model in oncology care across Africa. The centre is a leader in West Africa for 37 University of Ghana http://ugspace.ug.edu.gh radiotherapy treatment. It adopts a multi-disciplinary approach by bringing together professionals across different disciplines including oncologists, medical physicists, dosimetrists, radiotherapists, oncology pharmacists, specialised nurses and nutritionists – all coordinated by case managers who support the patients’ needs. It is also one of the few health facilities that has a hospital-based cancer registry and support population-based cancer registry activities across West Africa, where their medical staff contributes to global oncology research across various international forums, and have published in several medical journals. 3.4 Selection of Participants This section describes how participants were selected for the study. This sub-sections discussed here are description of the population for the study, sample size and sampling techniques for selecting participants. 3.4.1 Population of the Study A research population is a well-defined collection of individuals who share similar characteristics based on what a researcher is interested in and, therefore, qualify to be included in the study (Patten & Newhart, 2017). Within the context of research, a population is defined as a group of individuals taken from the general population who share a common characteristic, such as age, sex, or work conditions who are researched on because of their relevance to a research question (Uprichard et al., 2018). In terms of research about a medical condition, the population is defined to include all individuals who are diagnosed with a medical condition or at risk of a medical condition, depending on the researcher’s interest (Patten & Newhart, 2017). 38 University of Ghana http://ugspace.ug.edu.gh In the current study, the interest was to investigate the information needs and sources among breast cancer women. The population of interest was therefore women who had been diagnosed with breast cancer and were receiving treatment. Because the study was carried out at the 37 Military Hospital and the Sweden Ghana Medical Centre (SGMC), both in the Greater Accra Region, the population for the study consisted of all female patients diagnosed of breast cancer and receiving treatment in the Breast Cancer Unit of the two health facilities. The total number of breast cancer patients at any particular point in time is difficult to calculate. This is because the figures fluctuate as breast cancer patients come or are referred and as some also stop treatment. The population for this study is, therefore, estimated based on data from previous treatment statistics. Data available from the Breast Cancer Unit of the 37 Military Hospitals for the period between January – December, 2017 indicated that a total of ninety-eight (98) new cases of breast cancer were diagnosed in the hospital. Due to the fact that treatment and management of breast cancer takes a long time to complete, patients can receive treatment for up to five years (WHO, 2017). Therefore, using the number of new diagnoses as estimated figures, and the last five years (2012 – 2017) as estimated period, the population of breast cancer patients receiving treatment at both hospitals was estimated to be five hundred (500). 3.4.2 Sample Size A sample is defined as the proportion of a population that is selected for research (Patten & Newhart, 2017). Thus, within the context of research, a sample size is defined as a section of an accessible population that is selected and studied (Creswell & Creswell, 2017). Two reasons 39 University of Ghana http://ugspace.ug.edu.gh account for why a sample is selected and studied. One is that, in most cases, especially in social science research, it is impossible or impractical to study the entire population (Creswell & Creswell, 2017). The second reason is that, it is possible to select a portion of the population to study and inferences made about the entire population of interest (Shang, Wang &Shao, 2017). A sample size determination is therefore an important component of research. Sampling the right sample size ensures that a true picture is gained about the entire population of interest. As Nardi (2018) explains, both under-sampled and over-sampled studies all constitute a waste of resources for not having the capability to produce useful results. Because of this, sample size determination is very important, especially in survey research. Therefore, for the purposes of practicality, a sample size is always selected from the population and used for the research. However, the sample size should be large enough so that the findings from the study can be generalised to the entire population (Patten & Newhart, 2017). In this study, a total of seventy-five (75) breast cancer patients were selected for the study. This sample size was determined to be an adequate sample using different strategies for calculating sample size. For instance, some researchers argue that for a population of about one thousand (1000), a minimum of 10% should be sampled for the study (Gravetter & Forsano, 2018). Given the fact that the estimated population is 500, 10% would be 50 patients. However, in cases where using the 10% rule will yield a too small sample, other researchers also recommend using the power analysis. For instance, according to Gravetter and Forsano, (2018), using power of 0.80 and alpha (α) value of 0.01, the minimum sample size required to detect a medium effect in a population below one thousand (1000) is 71 participants. 40 University of Ghana http://ugspace.ug.edu.gh Other scholars also recommended that there is the need to increase the minimum estimated sample size both to account for cases of non-response and to increases the likelihood that the sample statistic was representative of its corresponding population parameter (Patten & Newhart, 2017). The sample size of seventy-five (75) for the current study is therefore deemed to be an adequate representation of the population of breast cancer patients in both health facilities to produce useful insights into their information needs and sources. 3.4.3 Sampling Technique The processes involved in selecting part of a population for research is called sampling technique (Gravetter & Forsano, 2018). A sampling technique thus refers to the process of selecting individuals from a larger group of people and drawing conclusions that are an accurate representation of how the larger group of people act or what they believe. The main goal of sampling is to get a representative sample or a smaller collection of units from a much larger collection or population, study the smaller group and produce accurate generalisability about a larger group. The right sample size depends on the nature of a population and the purpose of the study. There are two broad categorisations of sampling techniques. These include probability sampling and non-probability sampling techniques (Ary et al., 2018). Probability sampling is the type of sampling procedure where each member of the population has equal chance of being selected for the study. With probability sampling the researcher has a significant measure of control over who is selected and it allows for representative cross sections, or particular groups to be identified or 41 University of Ghana http://ugspace.ug.edu.gh targeted (Patten & Newhart, 2017). Probability sampling includes simple random sampling, systematic sampling, cluster sampling and stratified sampling. Non-probability sampling on the other hand is a sampling procedure where the members of a population do not have equal chances of being selected (Gravetter & Forsano, 2018). The defining feature between these two sampling strategies or techniques is the extent or chance by which each member of the population has for being part of the study. There are different methods of selecting samples using non-probability sampling techniques. They include convenience sampling, purposive sampling, quota sampling, snow balling, etc. (Patten & Newhart, 2017). In the current study, the non-probability sampling procedure was used. Specifically, the participants were selected using the convenience sampling technique. A convenience sampling technique has an element of flexibility in the selection of research participants such that participants who are available at the time of data collection and are ready to take part in the study are used (Patten & Newhart, 2017). Norman and Eva (2014) show that researching about patients in outpatient departments requires high level of flexibility in the sampling procedures because not all patients turn up for their appointments as scheduled while many of them do not even turn up at all. A convenience sampling technique was, therefore, chosen because it is best suited for a study of this nature that uses outpatient department as its sampling frame. The participants were, therefore, selected based on their availability and voluntary participation. This sampling technique was used for the study because it was the most convenient to use, 42 University of Ghana http://ugspace.ug.edu.gh especially among breast cancer patients that are usually difficult to access. For the purposes of inclusion and exclusion criteria, breast cancer patients who have other severe physical and/or psychological conditions and those who were not willing to participate in the study were excluded from the selection process. A total of 75 breast cancer patients participated in the study. 3.5 Data Collection Instrument Research instruments are various methods such as observation, survey questionnaire and interview that are used to obtain research data. In cross-sectional survey design, the data collection instrument is the questionnaire that is considered an appropriate instrument for collecting data. According to Nardi (2018), a questionnaire is the most widely used research tool because it helps to collect information from a sample of people in a short period of time and in a cost-effective manner. The results of the questionnaires can be easily quantified by either a researcher or through the use of a software package. In the current study, the data was collected using an already developed questionnaire which was adapted to suit the Ghanaian context. The questionnaire had different sections with each of the sections measuring different aspects of information needs and sources. The sections in the questionnaire included the following sections: Section A: Research Information Section B: Informed Consent Section C: Demographic Information Section D: Information Needs Section E: Information Sources 43 University of Ghana http://ugspace.ug.edu.gh Section F: Evaluation of Information Content Section G: Coping with Breast Cancer The sections are described below: Section A: Research Information: this section of the questionnaire provided information on the study and stressed that it was purely for academic purposes with potential of findings for improving policies on breast cancer treatment and care. This section also introduced the research and the institution where the researcher was coming from. Section B: Informed Consent: this section provided information that participants would need before agreeing to be part of the study. As demanded by the Institutional Review Board of the 37 Military Hospital, the information provided included benefits and risks of the study, confidentiality and privacy issues, right to decline and withdraw from the study, contact details for any further enquiries and a declaration of willing participation where participants had to sign. Section C: Demographic Information: this section of the questionnaire elicited social and demographic information about the participants. Information elicited by this section included age, marital status, occupation, educational level, marital status and religious background of respondents. Section D: Information Needs: this section elicited information concerning all the information needs of the patients. The scales used included Information Needs Assessment Questionnaire for 44 University of Ghana http://ugspace.ug.edu.gh Breast Cancer Patients (Kuruppu, Wijeyaratne, Gunawardena, & Amarasinghe, 2017). This questionnaire was developed to measure information needs and sources among women with breast cancer in Sri Lanka. The scale has 55-items and measures different components of information needs including disease information, treatment information, self-care, psychological needs etc. with high reliability (α = .76 - .94). Participants had to choose a response on a 5-point Likert scale format which were: 1 = not important (NI), 2= slightly important (SI), 3 = moderately important (MI), 4 = very important (VI), 5= extremely important (EI). Section E: Information Sources: this section elicited information concerning all the sources where participants obtained their information on breast cancer including treatment and management. Some of the sources examined were doctors, nurses, family, friends, television, health magazines, community centres, social media etc. Participants had to indicate how often they used these sources on a 4-point Likert scale format which were: 1 = Not at all, 2 = Sometimes, 3 = Often, 4 = Very often. Section F: Evaluation of Information Content: this section examined how the participants evaluated the information they received from the different sources of information. This was based on WHO’s (2017) health literacy report that discussed diverse ways patients sometimes evaluate health information they receive. Some of the items included; discussing with health professionals, discussing with family and friends, comparing with what I already know etc. Participants had to indicate how often they used these evaluation techniques on a 4-point Likert scale format which were: 1 = Not at all, 2 = Sometimes, 3 = Often, 4 = Very often. 45 University of Ghana http://ugspace.ug.edu.gh Section H: Coping with Breast Cancer: this section sought information on how the patients cope with their breast cancer condition. The aim was to examine how their information needs and sources were help them cope with their condition. This section was measured with the Cancer Coping Questionnaire (CCQ) developed by Moorey, Frampton and Greer (2003). The CCQ measures methods of active coping. The CCQ has 21 items that asked how cancer patients cope on different aspects of their lives and a very high reliability with an α = .83 - .92. Participants had to indicate how they coped with their breast cancer on a 4-point Likert scale format which were: 1 = Not at all, 2 = Sometimes, 3 = Often, 4 = Very often. 3.6 Ethical Considerations Ethics are very critical aspects of research. Ethical considerations are meant to ensure that participants in any kind of research are protected and free from exploitation at all times. According to Nardi (2018) all researchers are advised to adhere to some professional ethical codes and regulations while undertaking research. Creswell and Creswell (2017) also argue that researchers need to protect their research participants, develop a trust with them, promote the integrity of research, guard against misconduct and impropriety that might reflect on their organisations or institutions and cope with new and challenging problems. In view of this, higher standards of ethical considerations were strictly adhered to in accordance with the ethical principles governing the use of human participants for research purpose. Institutional approval was first sought from the Institutional Review Board of the 37 Military Hospital, who reviewed the study thoroughly to make sure that it was devoid of any ethical breaches before giving approval. After that, the researcher spoke to the breast cancer patients to seek their consent to be part of the study. 46 University of Ghana http://ugspace.ug.edu.gh In the consent seeking process, the aims and scope of the study were explained to them. The researcher also ensured high sense of confidentiality and anonymity by making sure the data collected was managed in such a way that the identities of the respondents were protected at all times and that no information was directly traced or associated with any individual participant. With this, no names or codes traceable to the respondents were used. Those who agreed to be part of the study were given the questionnaire to fill. The technical terms were explained to the respondents. Patients who could fill the questionnaire by themselves were allowed to do so and those who could not fill the questionnaire by themselves were assisted. 3.7 Data Collection The data for the study was collected in the Breast Cancer Unit of the hospital settings where the breast cancer patients attended for their regular check-ups. Two Research Assistants were trained to assist the researcher in the data collection process. The entire data collection procedures were in two stages. The first stage involved pilot testing and the second stage involved collection of data for the main study after the pilot test. 3.7.1 Pilot Study The questionnaire was first piloted among a sample of breast cancer patients at the hospital. The purpose of the pilot study was to assess how the various measures make sense to the respondents in their context, to identify any challenges that may arise and prepare in advance to deal with them in the main study. 47 University of Ghana http://ugspace.ug.edu.gh A sample size of ten (10) breast cancer patients was used for the pilot study. Some scholars advise that a sample size of between 10 and 20% of the sample size for the main study is adequate for piloting a study (Gravetter & Forsano, 2018). The sample of 10 patients was therefore adequate for the pilot. Their ages ranged between 35 and 47 years. In terms of their educational levels, some had basic education and others had completed high school. The outcome of the pilot study showed that the breast cancer patients generally understood the questions being asked in the questionnaire. However, a few questions had to be added to the questionnaire after interactions with the pilot sample. This is because, some of them were giving critical responses which were not captured in the initial questionnaire. For instance, when it came to the sources of health information, other sources like counsellors and self-help groups which were not captured in the initial questionnaire were mentioned. Also when it came to how they evaluated the information they receive, some of them indicated that they told their younger siblings to read and educate them on some of the issues. In the main study therefore, the questionnaire was revised to address all the issues that emerged from the pilot study before being used to gather the data. 3.7.2 Main Study After completing the pilot study successfully and revising the questionnaire, the data for the main study was then collected. The research team visited the Breast Cancer Unit on daily basis to wait for the patients. The patients were usually approached for the study when they were waiting for their turn in a queue or when they had finished with their review. Several of them indicated that they would prefer engaging with the researchers after their review. During the main data collection however, it was difficult getting participants for the study. 48 University of Ghana http://ugspace.ug.edu.gh Apart from the fact that the patients were not coming, several of those who came also declined to take part in the study. For some of them, they complained that they were always asked to fill questionnaires but they did not see anything afterwards. We had to seek the assistance of the staff at the Breast Cancer Unit to appeal to some of the patients before they agreed to participate in the study. Information need was explained to the patients to mean that the things that they sometimes long to know or wish to know about their breast cancer condition. Information sources were explained to them to mean the avenues or people where they usually seek such information from. The data collection process therefore took longer than anticipated. 3.8 Data Analysis The data for the study was processed and analysed with the help of the Statistical Package for Social Sciences (SPSS) software version 23. All the responses from the participants were first of all coded before being entered into the SPSS software. In order to meet the objectives of the study, the data was analysed using descriptive statistics such as frequency tables, charts and graphs. Details are provided in the presentation of results in chapter four. 49 University of Ghana http://ugspace.ug.edu.gh CHAPTER FOUR DATA ANALYSIS AND FINDINGS 4.1 Introduction The current study sought to investigate the information needs and sources of breast cancer patients in the treatment and management of breast cancer and make recommendations based on the findings. The following objectives were examined: i. Breast cancer patients’ information needs 50 University of Ghana http://ugspace.ug.edu.gh ii. Breast cancer patients’ awareness of information sources iii. Evaluation of information needs and sources among the breast cancer patients iv. How their information needs influence the way the cope with breast cancer v. Challenges and barriers they face in seeking information This chapter presents the findings from the study. The findings are presented as follows. First, the demographic characteristics of the participants are presented. After that, information on the quality and reliability of the scales used in the questionnaire are presented. The chapter then proceeds to present findings on the main objectives of the study. In line with the objectives, information needs of the participants are presented first. After that, information sources among the participants are presented next. After that, findings on how participants evaluated the information are presented. The challenges they faced in seeking information are presented next. Lastly, findings on how information needs influenced the ways participants coped with their breast cancer condition are presented last. 4.2 Demographic Characteristics of Participants In all, a total of 75 breast cancer patients were used for the study. This section presents information on the demographic profile of the participants used for the study. The demographic characteristics presented here include: age of participants, marital status, educational level, occupation and religious affiliation. 4.2.1 Age of Participants The age profile of the breast cancer patients used for the study ranged between 30 and 69 years old. The age categories of the participants are presented in Table 4.1. 51 University of Ghana http://ugspace.ug.edu.gh Table 4.1: Age of Participants Age Categories Frequency Percent 30 - 39 years 15 20.0 40 - 49 years 22 29.3 50 - 59 years 20 26.7 60 - 69 years 18 24.0 Total 75 100.0 Source: Field data (2018) As shown in Table 4.1, participants are distributed fairly across the different age categories: 15 (20%) of them were between 30 – 39 years old, 22 (29.3%) were between 40 – 49 years, 20 (26.7%) were between 50 – 59 years and 18 (24%) of them were between 60 – 69 years. These age profile shows that breast cancer affect women of all age categories. This is consistent with some recent studies that show that the age risk of breast cancer for women keeps dropping from 60 years as it was in the past to younger women (DeSantis, Ma, Bryan & Jemal, 2014). 4.2.2 Marital Status of Participants This sub-section presents information on the marital status of the breast cancer patients in this study. The information is provided in Table 4.2. Table 4. 2: Marital Status of Participants Marital Status Frequency Percent Single 10 13.3 52 University of Ghana http://ugspace.ug.edu.gh Married 48 64.0 Divorced 14 18.7 Widowed 3 4.0 Total 75 100.0 Source: Field data (2018) From Table 4.2, majority 48 (64%) of the participants reported being married, 14 (18.7%) of them were divorced, 10 (13.3%) were single while 3 (4.0%) were widowed. 4.2.3 Educational Level of Participants This sub-section presents educational profile of the participants in Table 4.3. Majority 35 (46.7%) of the breast cancer patients had attained up to Senior High School education, 21 (28%) had basic education, 8 (10.7%) had first degree while 7 (9.3%) had diploma. The last group were those with master’s degree 4 (5.3%). Table 4. 3: Educational Level of Participants Education Frequency Percent Basic 21 28.0 SHS 35 46.7 Diploma 7 9.3 First Degree 8 10.7 Masters 4 5.3 Total 75 100.0 Source: Field data (2018) 53 University of Ghana http://ugspace.ug.edu.gh 4.2.4 Occupation of Participants The occupational status of the participants cut across several fields. The information is presented in Table 4.4. Majority 25 (33.3%) of the participants were traders, 18 (24%) were housewives, 7 (9.3%) were teachers, 4 (5.3%) were bankers, dressmakers, hairdressers and secretaries were 2 (2.7%) each while the following occupations had 1 (1.3%) each - administrator, customer service, marketer, nurse and ward assistant. Table 4. 4: Occupation of Participants Occupation Frequency Percent Trader 25 33.3 House Wife 18 24.0 Teacher 7 9.3 *Not Specified 7 9.3 Banker 4 5.3 Dress Maker 2 2.7 Hair Dresser 2 2.7 Secretary 2 2.7 Administrator 1 1.3 54 University of Ghana http://ugspace.ug.edu.gh Customer Service 1 1.3 Marketer 1 1.3 Nurse 1 1.3 Ward Assistant 1 1.3 Total 75 100.0 Source: Field data (2018) 4.2.5 Religious Affiliation of Participants This sub-section presents information on the distribution of participants across their religious denominations. This is shown in Table 4.5 Table 4. 5: Religious Denomination of Participants Religion Frequency Percent Christian 54 72.0 Muslim 14 18.7 African Traditional Religion 7 9.3 Total 75 100.0 Source: Field data (2018) As shown in Table 4.5, majority 54 (72%) of the participants were Christians, followed by Muslims 14 (18.7%) and then African Traditional Religion 7 (9.3%). 55 University of Ghana http://ugspace.ug.edu.gh 4.2.6 Distribution based on health facility This sub-section presents information on the distribution of participants based on the two health facilities. Table 4. 6: Distribution based on health facility Health facility Frequency Percent 37 Military Hospital 50 66.67 Sweden Ghana Medical Centre 25 33.33 Total 75 100.0 Source: Field data (2018) From Table 4.6, majority 50 (66.67%) of the participants were from 37 Military Hospital and the remaining 25 (33.33%) were from SGMC. This is further represented on Figure Proportion of Participants from the 2 Hospitals 33% 67% 37 Military Hospital Sweden Ghana Medical Centre Figure 3: Proportion of Participants from the 2 Hospitals 56 University of Ghana http://ugspace.ug.edu.gh 4.3 Assessing Reliability of the Questionnaire This section presents information on assessing the reliability of the questionnaire used in gathering the data. It is argued that in quantitative research in general and survey research in particular, reliability of the scales that are used to gather the data is important in assessing the quality of the data. Reliability basically assesses the ability of the questionnaire to yield consistent scores when used among the same group of participants at different time intervals (Cohen, Manion & Morrison, 2013). Therefore, scales or questionnaires that have acceptable levels of reliability are considered to be trustworthy. The reliability of a scale is assessed using a Cronbach alpha, which yields coefficients. A scale is considered to be reliable when the reliability coefficient is above .70 (Fidell & Tabachnick, 2003). The reliability level of the scales used in this study are presented in Table 4.7 Table 4. 7: Reliability of Scales Used Variables Not of items Reliability Level (α) Information Needs 58 .958 Disease-specific Information Needs 14 .739 Diagnosis Information Needs 9 .851 Treatment Information Needs 15 .906 Physical Care Information Needs 5 .747 Psychosocial Care Information Needs 15 .906 Information Sources 21 .782 Evaluation of Information 12 .710 57 University of Ghana http://ugspace.ug.edu.gh Coping with Breast Cancer 21 .855 Source: Field data (2018) All the scales that were put together into the questionnaire were found to have acceptable levels of reliability. The Cronbach alpha values ranged between α = .710 and α = .958, which all exceeds the minimum cut-off point of α = .70. This means that the questionnaire used was very reliable and therefore the data is reliable and trustworthy. 4.4 Information Needs of the Breast Cancer Patients The first objective of the study examined information needs of the breast cancer patients. This section presents findings on the information needs of the participants in five key areas: disease- specific information needs, diagnosis information needs, treatment information needs, physical care information needs and psychosocial care information needs. 4.4.1 Disease-specific Information Needs This sub-section examined the aspects of the breast cancer treatment and management where participants mostly needed information on. They were required to rate the extent of information need on various domains of breast cancer care and treatment by indicating the extent to which information need was: not important (NI), slightly important (SI), moderately important (MI), very important (VI) and extremely important (EI). The findings are presented in Table 4.8. Table 4. 8: Disease-specific Information Needs among the Participants 58 University of Ghana http://ugspace.ug.edu.gh Disease-specific NI SI MI VI EI Information Needs f % f % f % f % f % The changes that can be 7 9.3 - - 10 13.3 32 42.7 26 34.7 seen on breast Detail of where breast 6 8.0 - - 28 37.3 28 37.3 13 17.3 screening services offer What one should do, if - - 4 5.3 26 34.7 20 26.7 25 33.3 abnormality is detected Who are at high risk of 3 4.0 6 8.0 26 34.7 14 18.7 26 34.7 getting breast cancer What causes breast 13 17.3 18 24.0 13 17.3 25 33.3 6 8.0 cancer The age at which the 21 28.0 7 9.3 30 40.0 14 18.7 3 4.0 women should get screened for cancer How to detect whether I 9 12.0 25 33.3 20 26.7 9 12.0 12 16.0 have any other cancer Ways of detecting the 10 13.3 24 32.0 24 32.0 9 12.0 8 10.7 cancer early About breast lumps- 18 24.0 12 16.0 17 22.7 16 21.3 12 16.0 why and where they occur, how to recognise Whether all women with 3 4.0 24 32.0 27 36.0 8 10.7 13 17.3 risk get the cancer Information about 6 8.0 11 14.7 34 45.3 17 22.7 7 9.3 mammography screening Common breast 20 26.7 13 17.3 21 28.0 18 24.0 3 4.0 pathologies 59 University of Ghana http://ugspace.ug.edu.gh What can women do to 12 16.0 10 13.3 21 28.0 17 22.7 15 20.0 minimise their risk of getting breast cancer Detail of mammography 6 8.0 6 8.0 26 34.7 26 34.7 11 14.7 services Source: Field data (2018) The findings showed that the participants considered information need on certain aspects of the disease as important (ranging from moderately to extremely important) and others as not important (ranging from slightly to not important). For instance, they indicated high information need on; what should be done when abnormality is detected in breast 71 (94.7%), changes that can be seen on the breast 68 (90.3%), details of places offering breast cancer screening services 69 (91.9%), those at risk of getting breast cancer 66 (88.1%), information on mammography services 63 (84.1%), information on mammography 58 (77.3%), what can be done to minimise risk of breast cancer 53 (72.7%). They rated lower information need on: age at which women should get screened 47 (62.7%), what causes breast cancer 44 (58.6%), ways of detecting breast cancer 41 (54.7%), breast lumps and why they occur 45 (54%), women at risk 48 (53.4%) and common breast pathologies 42 (52%). Putting the findings together, it is clear that the patients have higher information needs on treatment and prognosis lower preventive information needs (e.g. screening and early detection). This is understandable because these are patients who live with the condition and so information on treatment and prognosis serves them better compared to information on prevention and early detection. 60 University of Ghana http://ugspace.ug.edu.gh 4.4.2 Diagnosis Information Needs This sub-section examined the aspects of the breast cancer diagnosis where participants mostly need information on. They were required to rate the extent of information need on various domains of breast diagnosis by indicating the extent to which information need is: not important (NI), slightly important (SI), moderately important (MI), very important (VI) and extremely important (EI). The findings are presented in Table 4.9. Table 4. 9: Diagnosis Information Needs Diagnosis Information NI SI MI VI EI Needs f % f % f % f % f % Why the confirmatory 3 4.0 3 4.0 39 52.0 18 24.0 12 16.0 tests are necessary How to prepare for such 3 4.0 15 20.0 14 18.7 26 34.7 17 22.7 test The different stages of - - 12 16.0 17 22.7 28 37.3 18 24.0 breast cancer and what do they mean Whether the tests can - - 14 16.0 25 33.3 17 22.7 19 25.3 identify the stage of it How women to respond 3 4.0 9 12.0 37 49.3 22 29.3 4 5.3 to positive or negative result. 61 University of Ghana http://ugspace.ug.edu.gh The investigations that 3 4.0 6 8.0 26 34.7 29 38.7 11 14.7 confirm the diagnosis of breast cancer The reasons why doctors 6 8.0 9 12.0 27 36.0 21 28.0 12 16.0 suggest certain additional tests How my illness could 6 8.0 10 13.3 15 20.0 28 37.3 16 21.3 affects my life in the future What to discuss with 10 13.3 3 4.0 19 25.3 14 18.7 29 38.7 family and friends about the illness, if diagnosed Source: Field data (2018) The findings showed that the participants indicated high diagnostic information needs. Majority of them rated all the domains of diagnosis information needs from moderately important to extremely important. For instance, they rated high information needs on: why confirmatory tests are necessarily 69 (92%), different stages of breast cancer and what they mean 63 (84%), meaning of positive or negative results from confirmatory tests 63 (84%), reasons for additional tests 60 (80%) and how to prepare for confirmatory tests 57 (76.7%). 4.4.3 Treatment Information Needs This sub-section examined the aspects of the breast cancer treatment where participants mostly need information on, by indicating the extent to which information need is: not important (NI), slightly important (SI), moderately important (MI), very important (VI) and extremely important (EI). The findings are presented in Table 4.10 62 University of Ghana http://ugspace.ug.edu.gh Table 4. 10: Treatment Information Needs Treatment NI SI MI VI EI Information Needs f % f % f % f % f % What side effect I should 10 13.3 9 12.0 16 21.3 29 38.7 11 14.7 report to the doctor / nurse If I have side effects how 7 9.3 7 9.3 26 34.7 23 30.7 12 16.0 to deal with them If there are ways to 13 17.3 14 18.7 13 17.3 14 18.7 21 28.0 prevent side effects / ease treatment The possible side effects 7 9.3 12 16.0 33 44.0 12 16.0 11 14.7 of treatment The need to be in the 3 4.0 10 13.3 20 26.7 21 28.0 21 28.0 hospital for treatment / if so, how long How long will I require 13 17.3 9 12.0 19 25.3 16 21.3 18 24.0 treatment Whether the treatment 7 9.3 10 13.3 23 30.7 20 26.7 15 20.0 may give up any time duration. About treatment for 3 4.0 19 25.3 28 37.3 21 28.0 4 5.3 breast cancer Mode of treatment is 10 13.3 9 12.0 19 25.3 23 30.7 14 18.7 given Whether treatment 7 9.3 10 13.3 23 30.7 20 26.7 15 20.0 should do continuously How to decide particular 16 21.3 11 14.7 6 8.0 19 25.3 23 30.7 treatment plan 63 University of Ghana http://ugspace.ug.edu.gh Any food restriction 10 13.3 12 16.0 23 30.7 8 10.7 22 29.3 /important food, during treatment Any restriction to take 16 21.3 13 17.3 14 18.7 21 28.0 11 14.7 other drug (if any), during treatment Detail of the places 9 12.0 29 38.7 18 24.0 4 5.3 15 20.0 where they offer treatment Importance of mental 10 13.3 20 26.7 13 17.3 14 18.7 18 24.0 preparation for treatment Source: Field data (2018) Findings showed that the patients had relatively high information needs on some domains of treatment of breast cancer. Majority of the patients rated some of the treatment information domains from moderate to extremely important. For instance, they rated high information need on: the need to be hospitalised during treatment 62 (82.7%), how to deal with side effects 61 (81.4%), duration of treatment 53 (77.3%), what side effect to report to doctor/nurse 53 (74.5%) and possible side effects of treatment 54 (74.7%). Putting them together, the patients’ information needs regarding treatment cohere around whether there is the need for hospitalisation, side effect of treatment and how to manage it. 4.4.4 Physical Care Information Needs This sub-section examined the aspects of the physical care when living with breast cancer where participants mostly need information on, by indicating the extent to which information need is: not 64 University of Ghana http://ugspace.ug.edu.gh important, slightly important, moderately important, very important and extremely important. The findings are presented in Table 4.11. Table 4. 11: Physical Care Information Needs Physical Care NI SI MI VI EI Information Needs f % f % f % f % f % When should the breast 10 13.3 9 12.0 16 21.3 22 29.3 18 24.0 be examined after surgery How to care for my - - 16 21.3 33 44.0 8 10.7 18 24.0 wound or incision When should I - - 13 17.3 30 40.0 24 32.0 8 10.7 commence my usual physical activities Any additional therapies - - 16 21.3 30 40.0 18 24.0 11 14.7 required to improve recovery after surgery. How long will it take to 6 8.0 6 8.0 21 28.0 17 22.7 25 33.3 heal Source: Field data (2018) Findings showed that the patients had higher information needs on physical care when it comes to: how long wounds take to heal 63 (84%), when to commence their usual physical activities 62 (82.7%), how to care for wounds or incisions 59 (78.7%), additional therapies required to improve recovery after surgery 59 (78.7%) and when breast should be examined after surgery 56 (74.6%). 65 University of Ghana http://ugspace.ug.edu.gh 4.4.5 Psychosocial Care Information Needs Breast cancer treatment, care and management also involves deeply psychological and social adjustments that patients need to make. This sub-section examined the aspects of the psychosocial care when living with breast cancer where participants mostly need information on, by indicating the extent to which information need is: not important, slightly important, moderately important, very important and extremely important. The findings are presented in Table 4.12. Table 4. 12: Psychosocial Care Information Needs Psychosocial Care NI SI MI VI EI Information Needs f % f % f % f % f % How to tell if the cancer 10 13.3 10 13.3 22 29.3 18 24.0 15 20.0 has come back. How to manage mental 3 4.0 14 18.7 20 26.7 15 20.0 23 30.7 stresses successfully What are the symptoms - - 9 12.0 22 29.3 36 48.0 8 10.7 to get admitted, after treatment? How to face the society 6 8.0 6 8.0 17 22.7 35 46.7 11 14.7 successfully To be aware other family 4 5.3 6 8.0 31 41.3 22 29.3 12 16.0 members about their risk for breast cancer 66 University of Ghana http://ugspace.ug.edu.gh What are the symptoms 3 4.0 16 21.3 17 22.7 31 41.3 8 10.7 to come to the clinic immediately? Detail of the places 12 16.0 10 13.3 23 30.7 23 30.7 7 9.3 where they offer counselling services Detail of the places 6 8.0 12 16.0 32 42.7 17 22.7 8 10.7 where we are able to buy brassieres & the cost Telephone numbers for 22 29.3 3 4.0 27 36.0 12 16.0 11 14.7 public (hotline) which can be used to get information on Breast Cancer How often should be 9 12.0 9 12.0 30 40.0 13 17.3 11 14.7 followed up in respect to treatment mode? How should family 9 12.0 12 16.0 31 41.3 18 24.0 8 10.7 members discuss about the disease with the patient at an initial level of diagnosis Information on financial 16 21.3 15 20.0 26 34.7 14 18.7 4 5.3 support Where my family can go 6 8.0 21 28.0 34 45.3 6 8.0 8 10.7 if they need help to deal with my illness Importance of continued 9 12.0 14 18.7 24 32.0 10 13.3 18 24.0 treatment and care Behaviour of newly 6 8.0 10 13.3 25 33.3 17 22.7 17 22.7 diagnosed women 67 University of Ghana http://ugspace.ug.edu.gh Source: Field data (2018) The findings as shown in Table 4.12 show that participants rated high psychosocial care needs on: what symptoms require admission after treatment 66 (88.2%), knowing risk of other family members 65 (86.6%), how to face society successfully 63 (84.4%), how to behave when newly diagnosed 59 (78.7%)managing mental stress 58 (77.4%), places of acquiring befitting brassieres 57 (76.1%), symptoms that require reporting to the clinic 56 (74.7%), how to discuss the condition with family members 54 (72%) and places where counselling services are offered 53 (70%). 4.4.6 Comparison of Domains of Information Needs After examining each of the components of information needs, composite scores were derived in order to compare the relative importance of each of the five domains of information needs. Each of the domains had different number of questions. Because of this, mean ranks was calculated for each by divided the mean of each domain by the number of questions (Fidell & Tabachnick, 2003). This is to help produce a standard mean scores for each of the domains so that their relative importance can be compared by ranking their new standard means (Bryman, 2015). The results are summarised in Table 4.13 and Figure 1. Table 4. 13: Comparisons of Domains of Information Needs Information Need Mean SD No. of items Mean Ranks Diagnostic Information Need 31.40 6.64 9 3.49 Physical Care Information Need 17.09 3.94 5 3.42 Treatment Information Need 48.03 12.59 15 3.20 Psychosocial Care Information Need 47.88 11.42 15 3.19 68 University of Ghana http://ugspace.ug.edu.gh Disease-Specific Information Need 44.47 7.87 14 3.18 Source: Field data (2018) As shown in Table 4.12, diagnostic information need was ranked as highest, followed by physical care information needs, treatment information needs, psychosocial information needs and disease- specific information needs in that order. This is further shown on Figure 1 to provide pictorial view of how the domains are ranked. Comparison of Information Needs 3.489 3.418 3.202 3.192 3.176 Diagnostic Physical Care Treatment Psychosocial Disease-Specific Information Information Information Care Information Information Domains of Information Needs Figure 4: Bar Graph Showing Comparison of Information Needs 4.4.7 Educational Level and Information Needs Information needs were also compared among patients with different educational levels. The patients were grouped into two categories of education: non-tertiary (for those who had up to basic and SHS education) and tertiary (for those who had diploma, first degree and master’s degree). 69 Average Mean Score University of Ghana http://ugspace.ug.edu.gh The mean scores of those with high education and those with low education were compared on all the five domains of information needs. The analysis was conducted using independent t test. The results are summarised in Table 4.14. Table 4. 14: Educational Level and Information Need Information Need Education_ Mean SD t p Disease-Specific Information Non-tertiary 42.04 5.79 29.106 .000 Need Tertiary 51.63 8.91 Diagnostic Information Need Non-tertiary 29.21 5.62 34.884 .000 Tertiary 37.84 5.11 Treatment Information Need Non-tertiary 44.01 10.28 31.658 .000 Tertiary 59.84 11.48 Physical Care Information Non-tertiary 15.58 3.13 56.308 .000 Need Tertiary 21.53 2.43 Psychosocial Care Information Non-tertiary 43.48 7.08 58.050 .000 Need Tertiary 60.84 12.06 Source: Field data (2018) The findings showed that patients with higher education reported higher information need on all the five domains compared to those with low education. This is shown by the higher mean scores 70 University of Ghana http://ugspace.ug.edu.gh recorded by those with tertiary education compared to the non-tertiary education. For instance, patients with tertiary education scored significantly higher on all five domains: disease-specific information need (tertiary = 51.65, non-tertiary = 42.04, t = 29.106, p < .001), diagnostic information need (tertiary = 37.84, non-tertiary = 29.21, t = 34.884, p < .001), treatment information needs (tertiary = 59.84, non-tertiary = 44.01, t = 31.658, p < .001), physical care information need (tertiary = 21.53, non-tertiary = 15.58, t = 56.308, p < .001) and psychosocial care needs (tertiary = 60.84, non-tertiary = 43.48, t = 58.050, p < .001). 4.5 Sources of Information among the Participants The second objective examined sources of information for the breast cancer patients. They were required to respond to different sources they obtained information on their breast cancer treatment and management from. Participants had to respond to how often they obtained information from the sources by selecting these options; 1 = Not at all, 2 = Sometimes, 3 = Often, 4 = Very often. The results are presented in Table 4.15. Table 4. 15: Information Sources among the Participants How often do you seek Not at all Sometimes Often Very often information from these sources: f % f % f % f % Doctors 14 18.7 - - 26 34.7 35 46.7 Nurses 13 17.3 16 21.3 16 21.3 30 40.0 Pharmacists 16 21.3 33 44.0 16 21.3 10 13.3 Television stations 22 29.3 15 20.7 18 24.0 20 26.6 71 University of Ghana http://ugspace.ug.edu.gh Radio stations 31 41.3 17 22.7 11 14.7 16 21.3 Family 43 57.3 20 26.6 8 10.7 4 5.3 Friends 38 50.7 28 37.3 9 12.0 - - Co-workers 45 60.0 23 30.7 3 4.0 4 5.3 Other community members 41 54.7 9 12.0 14 18.7 11 14.7 Fellow breast cancer patients 34 45.3 23 30.7 10 13.3 8 10.7 Religious leaders (e.g. 14 18.7 44 58.7 10 13.3 7 9.3 Pastors, Imams, Priest) Counsellors 31 41.3 20 26.7 10 13.3 14 18. Religious places (e.g. church, 27 36.0 31 41.3 6 8.0 11 14.7 Mosque, Shrine) Newspapers 33 44.0 35 46.7 3 4.0 4 5.3 Health magazines 26 34.7 24 32.0 18 24.0 7 9.3 Research publications 30 40.0 16 21.3 29 38.7 - - Internet (e.g. website of 32 42.7 15 20.0 17 22.7 11 14.7 cancer associations, health websites) Social media (e.g. Facebook, 41 54.7 19 25.3 12 16.0 3 4.0 WhatsApp, twitter etc.) Community centres 46 61.3 3 4.0 10 13.3 16 21.3 Herbalists 30 40.0 13 17.3 20 26.7 12 16.0 Source: Field data (2018) 72 University of Ghana http://ugspace.ug.edu.gh Findings showed that the dominant sources of information on breast cancer treatment and care among the patients were biomedical practitioners and religious leaders. As shown in Table 4.15, majority of the participants indicated that their main sources of information were: doctors 61 (81.4%), nurses 62 (82.3%) and pharmacists 59 (78.6%). Apart from these dominant sources of information, other sources that are somehow utilised included: religious leaders 61 (81.3%), television stations 53 (70.6%), religious places 48 (60%), and radio station 44 (58.7%). Significant number of the participants indicated never seeking information from informal sources including; community centres 46 (61.3%), co-workers 45 (60%), family members 43 (57.3%) and friends 38 (50.7%). 4.6 Evaluation of Information Content and Sources The third objective sought to examine how the breast cancer patients usually evaluated the information they got to determine whether or not they should use it in the treatment and management of their breast cancer condition. Participants were required to indicate how often they used selected ways in evaluating the information they get on breast cancer treatment and care. The results are summarised in Table 4.16. Table 4. 16: Evaluation of Information among Participants How often do you engage Not at all Sometimes Often Very often in any of these to evaluate authenticity of information: 73 University of Ghana http://ugspace.ug.edu.gh f % f % f % f % Discuss with health 22 29.3 23 30.3 15 20.0 15 20.0 professionals Discuss with my partner for 22 29.3 25 33.3 18 24.0 10 13.3 second opinion Discuss with my family for 16 21.3 35 46.7 10 13.3 14 18.7 second opinion Discuss with my friends for 33 44.0 27 36.0 8 10.7 7 9.3 second opinion Discuss with other breast 24 32.0 25 33.3 22 29.3 4 5.3 cancer patients for their opinion Compare it with what I know 24 32.0 22 29.3 11 14.7 18 24.0 already Read more on it 30 32.0 23 30.7 7 9.3 15 20.0 Ask someone to read more on 27 36.0 24 32.0 24 32.0 - - it for me Pray over it 20 26.7 18 24.0 13 17.3 24 32.0 Take information from only 16 21.3 30 32.0 18 24.0 11 14.7 sources I trust Verify it from people who are 21 28.0 23 30.7 21 28.0 10 13.3 more educated Source: Field data (2018) 74 University of Ghana http://ugspace.ug.edu.gh The findings showed that participants use diverse ways of evaluating information they get on breast cancer before using or not using it. These diverse ways range from formal medical ways and informal interpersonal ways. The formal medical ways mainly included discussing with health professionals 53 (70.7%). The informal interpersonal ways included; discussing with family members for second opinion 59 (79.7%), praying over it 55 (73.3%), verifying from people who are more educated 54 (72%), taking information from only sources they trust 59 (79.7%) and discussing with partner for second opinion 53 (70.6%). 4.7 Information needs and coping with breast cancer among the participants The fourth objective examined how information the patients receive help them to cope with their breast cancer condition. Participants were required to indicate how often the information they receive help them to engage in selected positive ways of coping with cancer. The results are summarised in Table 4.17. Table 4. 17: Information and Coping with Breast Cancer How often does Not at all Sometimes Often Very often information you receive help you to: f % f % f % f % Engage in proper self-care 3 4.0 10 13.3 27 36.0 35 46.7 and management Distract yourself from 6 8.0 23 30.7 31 41.3 15 20.0 worrying thoughts? Know that aches and pains 10 13.3 12 16.0 39 52.0 14 18.7 could be caused by things other than the cancer spreading? 75 University of Ghana http://ugspace.ug.edu.gh Make a list of priorities for 10 13.3 16 21.3 28 37.3 21 28.0 the week so that you got important things done? Look for what strengths you 7 9.3 18 24.0 32 42.7 18 24.0 have to cope with cancer? Cope with frustration by 7 9.3 19 25.3 27 36.0 22 29.3 channelling it into other things (e.g. physical activity like housework or gardening)? Organise your day so that you 22 29.3 14 18.7 23 30.7 16 21.3 got the most out of it, despite cancer? Practice relaxation? 13 17.3 10 13.3 26 34.7 26 34.7 Make sure you think of some 21 28.0 9 12.0 30 40.0 15 20.0 of the positive aspects of your life? If you are in a close relationship, how often does information help to: Involve your partner in an 14 18.7 18 24.0 23 30.7 20 26.7 activity that helped you cope with cancer? Try to see cancer as a 3 4.0 10 13.3 27 36.0 35 46.7 challenge that you and your partner have to face together? Discuss how your partner 13 17.3 15 20.0 27 36.0 20 26.7 could help support you? Talk to your partner about 14 18.7 22 29.3 14 18.7 25 33.3 how you could organise 76 University of Ghana http://ugspace.ug.edu.gh things to take some pressure off you? Source: Field data (2018) Findings showed that access to information has helped the patients profoundly in managing their breast cancer conditions. The information they receive help them both in managing the condition and in managing their day-to-day activities successfully. For instance, majority of them indicated that information helped them to: engage in proper self-care and management 72 (96%), distract themselves from worrying thoughts 69 (92%), knowing that general aches and pains may not be as a result of the cancer spreading 65 (90%), make priorities to get things done 65 (90%), focus on strengths in managing the breast cancer 70 (93%). For those in close relationships, they indicated that information helps them to: involve their partners in coping and managing the condition 61 (86%), see cancer as a challenge that they face with their partners 72 (97%), have discussions with their partners on the help they need 62 (87%). 4.8 Challenges and Barriers to Information Seeking The last objective sought to examine the challenges and barriers that patients encounter in their information seeking behaviour for the treatment and management of their breast cancer condition. Participants were required to respond to how often they face these challenges and barriers in their day-to-day information seeking behaviours. The results are summarised in Table 4.18 Table 4. 18: Challenges and Barriers to Information Seeking Challenges and Barriers Not at all Sometimes Often Very often f % f % f % f % 77 University of Ghana http://ugspace.ug.edu.gh I don’t know where to seek 7 9.3 16 21.3 23 30.7 29 38.7 for information I do not have time to seek for 6 8.0 16 21.3 34 44.3 19 25.3 information I don’t have what it takes to 6 8.0 23 30.7 31 41.3 15 20.0 seek for information I don’t have the physical 10 13.3 12 16.0 39 52.0 14 18.7 strength to look for information I don’t have the emotional 10 13.3 16 21.3 28 37.3 21 28.0 and psychological strength to do so Usually feel lazy to look for 7 9.3 13 17.3 42 56.0 13 17.3 information I usually don’t seek for 7 9.3 16 21.3 23 30.7 29 38.7 information because I don’t want others to know I get all the information I 6 8.0 16 21.3 34 44.3 19 25.3 need from the hospital It is more difficult doing so 41 54.7 9 12.0 14 18.7 11 14.7 looking at where I live Source: Field data (2018) 78 University of Ghana http://ugspace.ug.edu.gh The findings showed that the patients face several challenges and barriers in seeking information on breast cancer. Majority of them indicated barriers including g: not having time to look for information 69 (94%), not having what it takes to look for information 69 (94%), not having the physical strength to look for information 69 (90%), not having the emotional and psychological strength to look for information 65 (86.3%), feeling too lazy to seek information 68 (93%) and not knowing where to look for information 67 (90.7%). CHAPTER FIVE DISCUSSION OF FINDINGS 5.1 Introduction The broader purpose of the study was to investigate the information needs and sources of breast cancer patients in the treatment and management of breast cancer and make recommendations based on the findings. This chapter presents a synthesis and discussion of the major findings. The discussion is organised around the main objectives of the study, and situated within the context of existing literature. The discussion is, therefore, organised around these themes; information needs of breast cancer patients, information sources for breast cancer patients, evaluation of information content and sources, information needs and coping with breast cancer and challenges and barriers in information seeking. After discussing the findings based on the key objectives, the theoretical interpretations of the findings are provided. Lastly, based on the findings, recommendations are made for improving information needs and information seeking behaviours. 79 University of Ghana http://ugspace.ug.edu.gh 5.2 Information Needs of Breast Cancer Patients The first objective of the study was to examine information needs of the breast cancer patients. This is based on the fact that information is critical to the care and management of breast cancer due to the chronic nature of the condition which requires long term self-care. Five main dimension of information needs were assessed. The domains that were assessed were diagnosis information needs, treatment information needs, disease-specific information needs, psychosocial care information needs and physical care information needs. The findings of the study showed that the participants had high information needs on all domains of information needs. The information needs were also ranked to identify the domain where the patients’ have higher needs. The patients ranked diagnostic information as the highest needs, followed by physical care information needs, treatment information needs, psychosocial information needs and disease-specific information needs in that order. The diagnostic information needs of the patients cohered around understanding the need for confirmatory tests, different stages of the breast cancer, the meaning of positive and negative confirmatory tests, the reasons for additional tests and how they should prepare for additional confirmatory tests. The physical care information needs cohered management of wounds and when to resume normal physical activities after surgery. The treatment information needs of the patients’ had to do with the need for hospitalisation, side effect of treatment and how to manage it. The patients’ psychosocial information needs of the patients were mainly on concerns for family members and how to face society in stress-free manner. The disease-specific information of the patients centred on information on treatment and prognosis and lower needs for information on prevention. Educational level was also assessed to find out how it affects their information needs. The findings showed that patients with higher education reported higher information need on all the five 80 University of Ghana http://ugspace.ug.edu.gh domains compared to those with low education. These findings, put together, show that the patients have severe information needs in their care and management of their breast cancer condition. The information needs are more severe for breast cancer patients with higher education. This means that apart from the fact that the patients report high information deficit in managing their conditions, those who are educated need more information because they can read and write. The findings from the study are in line with some previous studies. For instance, some previous studies have reported that patients’ undergoing treatment and management of cancer in general and breast cancer in particular face several health informational needs. The fact that cancer patients have high needs for information in managing their condition has been reported both in developed countries (e.g. Playdon et al. 2016; Ramsey et al. 2017) and in developing countries as well (Gyedu et al. 2017; Thomas et al., 2017; Zaidet al., 2016). Ramsey et al. (2017) for instance argue that apart from general health information needs, cancer patients have higher needs of information when it comes to cancer-specific information, treatment- , information on side-effects of treatment and management practices, prognosis, psychological support information, nutritional information, alternative treatment information or availability of new experimental treatments, information on exercise and physical activities, information on general body image and sexuality, information on finances as well as medication prescription and over the counter drugs. The findings of this study, however, contradict some other previous studies, especially when it comes to topmost priorities of information needs. There is a general observation that the priorities of informational needs of patients in high income countries differs to some extent among patients in high low-income countries (Playdon et al. 2017; Zaidet al. 2016). The literature generally 81 University of Ghana http://ugspace.ug.edu.gh provides evidence to the effect that patients in high income countries report vast categories of information needs compared to those in Africa. Even when it comes to the dynamics in Africa, there seems to be some country-specific differences of information needs of cancer patients in Africa. Mekuria et al. (2016) for instance reported among patients in Ethiopia were cancer-specific information, information on side-effects of treatment options and information on prognosis and survival. Zaidet al. (2016) in a study in Nigeria also reported that information to help them understand breast cancer was rated as the most important need, followed by other information such as side effects of the treatment option, medication and prognosis and survival. Breast cancer patients in Ghana however lack information on certain aspects. The patients in Ghana reported diagnostic information as the most important informational needs. Unlike those reported in other countries, the participants in this study also ranked psychosocial needs as critical areas they need more information on. This is in line with some previous studies in Ghana that reported that the psychosocial aspects of breast cancer management is barely cared for in Ghana. Clegg-Lamptey et al. (2009) in a study in Ghana for instance argued that there were a lot of information gaps in the treatment processes. Majority of the patients reacted in negative ways including being frightened or terrified, shock, weeping, depression and fear of death due to lack of information and communication. However, these psychosocial information is seldom provided to patients. It is therefore imperative that providing information to patients is made integral in breast cancer treatment and care so that they can engage in self-management practices. 82 University of Ghana http://ugspace.ug.edu.gh 5.3 Information sources of breast cancer patients The second objective examined sources of information on breast cancer treatment and management available to the patients. This objective was examined because information sources are argued to be integral part of information literacy when it comes to treatment and management of chronic health conditions in general and cancers in particular. The main issue addressed here therefore was the dominant sources where cancer patients in general and breast cancer patients in particular obtain or access health information from. From the study showed that the dominant sources were biomedical practitioners and religious leaders. The biomedical practitioners from whom patients sought information from were nurses, doctors and pharmacists. The other sources were religious leaders, television stations, religious places, herbalists and radio station. These findings mean that the patients rely on professional health workers (such as doctors, pharmacists and nurses) as their dominant source of information. This means that the patients are more passive in their information seeking behaviours. Instead of relying on some extent of self-led sources for information, they depend solely on the prescription of the biomedical practitioners for information. A possible reason could be that because of the high technicalities in breast cancer treatment, the patients depend on the biomedical experts as their source of credible information. The findings from the current study deviate from other studies in high income countries. Most studies in high income countries report that cancer patients use technology-mediated avenues as major sources of information (Engqvist Boman et al., 2017; Playdon et al., 2016; Ramsey et al., 2017). For example, Playdon et al. (2016) reported that cancer patients relied on internet, health magazines and health applications as sources of information. Engqvist Boman et al., (2017) also reported similar findings in America where breast cancer patients use more internet platforms as 83 University of Ghana http://ugspace.ug.edu.gh their major source of information. This can be explained from the point of view of education. Because most breast cancer patients in high income countries have relatively higher education, they are able to access information for themselves rather than completely rely on health practitioners. The findings of the patients in the current study is not making use of technology-mediated sources aligns with some findings in Africa. For instance, WHO’s (2017) report on health information literacy shows that majority of patients in general in Africans rely less and less on technology- mediated sources. The report suggest further that most Africans prefer face-to-face sources of health information as against self-reliant sources such as reading health books or internet articles. However, part of the findings also deviated a little from other studies in low income countries. Several empirical studies and review reports show that patients in Africa use informal places as their sources of information on medication and treatment options. For instance, Osamor and Grady (2016) have reported that majority of women in Africa rely on others such as family members and community neighbours as their main source of information on health. They reported that this is more prevalent in West and East African countries. The WHO (2017) report actually suggests that patients who are managing chronic health conditions such as stroke, hypertension, diabetes and all forms of cancer rely more on family and friends for information on treatment options and medicines. Agbokey (2014) has also reported in Ghana that family and friends are dominant source of information for breast cancer patients. He argues that the patients depend on their families and significant others as much as they depend on professional health workers for their health information. The findings in the current study however deviated from the other studies in Ghana and other African countries. The participants in the current study rely mainly on biomedical practitioners 84 University of Ghana http://ugspace.ug.edu.gh and less on other informal sources of information on treatment and management of their breast cancer condition. The reason for this could be several. It could be that due to the technical nature of breast cancer condition, the participants believe that biomedical health practitioners are the best people to provide information. It could also mean that they have tried informal sources of information but did not find it helpful so now decide to use only health professionals as the source of information. Nonetheless, participants overly reliance of biomedical health professionals as their source of information, even though helpful, also shows signs of passivity in their information seeking behaviours. 5.4 Evaluation of information content and sources The study also investigated how participants assessed or evaluated the content of the information they get. This is imperative because in order to understand people’s information seeking behaviours, it is imperative to understand how they evaluate and judge information quality. The WHO’s (2017) health literacy report for instance indicates that all patients, whether literate or illiterate engage in the process of evaluating the health information they receive in one way or another. However, it is worth noting that different patients evaluate their health information differently. The fundamental interest here was therefore to assess how the breast cancer patients evaluate the content of the health information they receive from the various sources. Findings showed that the patients made use of both formal and informal ways of evaluating information. The formal ways included mainly discussing it with biomedical health practitioners to seek their professional advice. The informal ways were mainly interpersonal routes where they sought second opinion from people close to them including; discuss with family members for second opinion, verifying from 85 University of Ghana http://ugspace.ug.edu.gh people who are more educated, taking information from only sources they trust and discuss with partner for second opinion. Synthesising how they evaluate their information with their sources of information, two patterns emerge. They relied on health professionals for source of information and that constitutes quality for them. However, when it comes to informal sources, they do not depend on them as source of information but only seek their second opinion when evaluating information they have received. This means that health professionals serve as the main pillars in their information seeking behaviours while their interpersonal relations such as family and friends only constitute sources for second opinion. 5.5 Information needs and coping with breast cancer The study also examined how information helped the patients in coping with their breast cancer condition. This is imperative because before a strong case can be made for the importance of information literacy in health management, there is the need to understand how information help patients to manage their health conditions. The findings from the study mainly showed that information plays a very pivotal role in helping the patients manage various aspects of their condition. Information mainly assisted the patients when it comes to not just managing the medical side of their breast cancer condition, but also the psychological and social sides in terms successfully negotiating their activities of daily living. When it comes to managing the medical side of their condition, the patients indicated that information helped them to proper self-management practices in terms of for instance medical adherence, care of wounds and knowing what bodily symptoms 86 University of Ghana http://ugspace.ug.edu.gh are associated with the breast cancer condition. When it comes to the psychological side, the patients indicated that information helped to manage stress in various ways including distracting themselves from worrying thoughts, making priorities to get things done, focusing on strengths in managing the breast cancer. When it comes to the social side, the participants indicated that information helped them in negotiating their close relationships by involving their partners in coping and managing the condition, seeing cancer as a challenge that they face with their partners and have discussions with their partners on the help they need. These findings are critical in a sense that by helping in the management of medical, psychological and social sides of their condition, information plays a significant role in ensuring a holistic well- being among the patients, which is in line with WHO’s guidelines for improved health and well- being. The WHO’s (2017) report on health literacy advocates that adequate information need to be provided to all patients because diseases and illness permeates all aspects of a person’s life including physical, psychological, social, religious and spiritual life. Breast cancer for instance does more than affecting a woman’s body. More importantly, it affects a woman’s identity, thereby disrupting not just the physical life but also psychosocial and religious lives (Engqvist Boman et al., 2017). All these aspects of affected lives cannot be taken care of by medical team alone. It is therefore imperative that adequate information is provided to patients on how to manage their conditions better for a holistic health. 5.6 Challenges and barriers to information seeking The study also assessed the challenges and barriers that the patients experience in their information search process. This is to provide understanding into factors that undermine their information seeking behaviours. The findings showed that the patients faced several challenges and barriers in 87 University of Ghana http://ugspace.ug.edu.gh seeking information on breast cancer including; not having time to look for information, not having the capacity to seek for information, not having the physical strength to seek information, not having the emotional and psychological strength to look for information, feeling too lazy to seek information and not knowing where to look for information. The challenges and barriers identified ranged from personal challenges to institutional challenges. For instance when patients indicate not having the physical, emotional and psychological strength to look for information, they feel restricted due to their health condition. However, when they indicate not having the capacity to seek for information and not knowing where to look for information, they invariably are referring to the restriction they face in accessing information even if they wanted to. This speaks to the fact that some relevant information is barely made available to the patients and they also do not know where to access such information. It is imperative that the health system in general and health institutions in particular dealt with the capacity aspects by breaking down technical health information on breast cancer into simple languages and making it available for patients to access them. Given the several constraints (e.g. physical, emotional, psychological) that the breast cancer condition put on the patients, it is good to remove all the barriers that are institutional in nature so that patients, with little efforts can access information. This would ensure that information is always readily available for the breast cancer patients to incorporate into the treatment and management of their condition. 88 University of Ghana http://ugspace.ug.edu.gh CHAPTER SIX SUMMARY, CONCLUSION AND RECOMMENDATIONS 6.1 Introduction This is the concluding chapter and it presents information on summary of findings, conclusion from the findings, practical and theoretical implications of the study, limitations of the study and suggestions for future studies. 6.2 Summary of Findings This section presents a summary of the findings based on the objectives of the study. The summary is provided on these; information needs of breast cancer patients, sources of information among the patients, evaluation of information, information needs and coping with breast cancer and challenges and barriers in their information seeking behaviours. 6.2.1 Information Needs of Breast Cancer Patients The first objective of the study was to assess information needs of the breast cancer patients. Five main domains of information needs (i.e. disease-specific information needs, diagnosis information needs, treatment information needs, physical care information needs and psychosocial care information needs) were examined. 89 University of Ghana http://ugspace.ug.edu.gh Findings showed that the patients ranked diagnostic information as the highest needs, followed by physical care information needs, treatment information needs, psychosocial information needs and disease-specific information needs in that order. The details of each of the domains of information needs were then assessed and summarised below: Diagnostic information needs Findings showed that diagnostic information needs of the patients cohered around understanding the need for confirmatory tests, different stages of the breast cancer, the meaning of positive and negative confirmatory tests, the reasons for additional tests and how they should prepare for additional confirmatory tests. Physical care information needs The patients’ physical care information needs centred around how long their wounds will take to heal, when patients can resume their usual physical activities, how to care for wounds and incisions, additional therapies required to improve recovery after surgery and when breast should be examined after surgery. Treatment information needs The patients’ treatment information needs centred on whether there is the need for hospitalisation, side effect of treatment and how to manage it. Their major concerns cohered around; understanding the need for hospitalisation, dealing with side effects, knowing duration of treatment, side effects to report to doctor/nurse and possible side effects of treatment. 90 University of Ghana http://ugspace.ug.edu.gh Psychosocial care information needs Psychosocial information needs of the patients were mainly on concerns for family members and how to face society in stress-free manner. The information needs were mainly on knowing the risk, how to face society successfully, what symptoms require admission after treatment, how to manage mental stress, how to deal with symptoms, knowing places where counselling services are offered, places of acquiring befitting brassieres, how to discuss the condition with family members and how to behave when newly diagnosed. Disease-specific information needs When it comes to disease-specific information, patients’ reported higher needs for information on treatment and prognosis and lower needs for information on prevention. Their main concerns for information on the disease manifested in knowing what to do when abnormality is detected in the breast, information on mammography services and other relatively significant concerns were also on making sense of changes in the breast, what to do to minimise adverse treatment risks among others. Educational level and information needs Differences in information needs based on educational level of patients were also examined. Findings showed that patients with higher education reported higher information need on all the five domains compared to those with low education. 91 University of Ghana http://ugspace.ug.edu.gh 6.2.2 Information Sources of Breast Cancer Patients The second objective assessed sources of information on breast cancer treatment and management among the patients. Findings showed that the dominant sources were biomedical practitioners and religious leaders. The biomedical practitioners from whom patients sought information from were nurses, doctors and pharmacists. The other sources were religious leaders, television stations, religious places, herbalists and radio station. 6.2.3 Evaluation of Information The third objective of the study assessed how the patients evaluated information they received on breast cancer treatment and management before deciding whether or not to use such information. Findings showed that the patients made use of both formal and informal ways of evaluating information. The formal ways included mainly discussing it with biomedical health practitioners to seek their professional advice. The informal ways were mainly interpersonal routes, including; discuss with family members for second opinion, praying over it, verifying from people who are more educated, taking information from only sources they trust and discuss with partner for second opinion. 6.2.4 Information needs and coping with breast cancer The fourth objective explored how information helped the patients in coping with their breast cancer condition. Findings showed that information plays avery pivotal role in helping the patients manage various aspects of their condition. For instance, information helps them both in managing 92 University of Ghana http://ugspace.ug.edu.gh the condition and in managing their day-to-day activities successfully. The information they get help them in terms of engaging in proper self-care and management, managing stress by distracting themselves from worrying thoughts, knowing what bodily symptoms are associated with the breast cancer condition, making priorities to get things done, focusing on strengths in managing the breast cancer. Information also helped them in negotiating their close relationships by: involving their partners in coping and managing the condition, seeing cancer as a challenge that they face with their partners and have discussions with their partners on the help they need. 6.2.5 Challenges and barriers to information seeking The last objective of the study assesses the challenges and the barriers the patients face in accessing information in relation to breast cancer treatment and care. Findings showed that the patients faced several challenges and barriers in seeking information on breast cancer. The barriers and challenges included; not having time to look for information, not having the capacity to seek for information, not having the physical strength to seek information, not having the emotional and psychological strength to look for information, feeling too lazy to seek information and not knowing where to look for information. 6.3 Conclusion Health information literacy is fundamental to proper self-management practices among patients living with chronic health conditions. However, there are limited studies on information needs and sources among patients in Ghana in general and among breast cancer patients in particular. The 93 University of Ghana http://ugspace.ug.edu.gh current study therefore constitutes one of the few studies that have examined information needs and sources among women living with breast cancer in Ghana. The findings from the study indicate that information needs of the patients cohere around treatment and management information and less around preventive information. Their main source of information is biomedical health practitioners, notably doctors, nurses and pharmacists. This means that the patients tend to be very passive in their information seeking behaviours as they depend mainly on health professionals. Majority of them indicated that information helps them in coping with both the medical and the psychosocial aspects of their breast cancer condition. Nonetheless, they face several challenges and barriers in their information seeking behaviours. The situation calls for the need to make health information literacy an integral component of treatment and management of breast cancer. 6.4 Implications and Recommendations of the Study The findings from the current study have several implications both in practice and in theory. The practical implications of the study lie in how the findings have relevance on breast cancer treatment, care and management. The theoretical implications of the study lie in how the findings advance knowledge and contribute to theory and research. These implications are discussed below. 6.4.1 Implications and recommendations for practice on breast cancer care The findings from the current study have several implications on breast cancer treatment, care and management. The following recommendations are therefore made to guide practice: 94 University of Ghana http://ugspace.ug.edu.gh i. Findings from the study have shown that information is critical in managing and coping with breast cancer. It is therefore recommended that there is the need to make information literacy in general and health information literacy in particular an integral part of the treatment and management of breast cancer. Introduction of information literacy in health promotion, especially within the context of managing chronic health conditions like breast cancer will encourage patients in ways that can contribute to managing the condition through proper self-management practices. ii. Findings from the study also showed that patients depend on biomedical health practitioners, mainly doctors, nurses and pharmacists as their dominant source of information on breast cancer treatment and management. While this has good side in the sense that they get scientifically proven information, it also has its down side in a sense that it makes patients too dependent on health practitioners which therefore encourage passivity in their health information literacy (WHO, 2017). It is therefore recommended that there is the need to promote and encourage active information seeking among patients. Patients need to be educated on health information literacy so that they know all avenues of getting access to scientifically proven information on breast cancer treatment and care. For instance, health talk shows on television and radio, reading on information on breast cancer in accredited health magazines and websites are good places patients can seek information without becoming too dependent on medical practitioners who are already overburdened with high number of patients and so may be overstretched in their duties. iii. In terms of challenges and barriers to information seeking, findings from the study show that participants indicated lacking the capacity to seek for information. This 95 University of Ghana http://ugspace.ug.edu.gh situation might be the case as information on breast cancer might be provided in technical terminologies in medical journals and hospital facilities. There is the need for health systems and organisations to find ways of breaking such technical information down to lay language so that patients (without medical training) but who can read have the capacity to understand what is being communicated. Some important information can be provided in leaflets and brochures in non-technical languages and made available to patients for free. This way, patients can believe in their capacity to read and understand such critical information so that they can make informed self-care management decisions. iv. The study showed further that patients depend on health facilities as their source of knowledge. This means that patients need to go to hospitals or health facilities before they can get access to information on breast cancer. It is recommended that there is the need to decentralise information from medical facilities and make it available to individuals in their homes and communities. Thus, information on breast cancer should be made available to patients in their communities and places of work so that they can constantly familiarised themselves with proper self-care practices. v. Lastly, the study showed that psychosocial care information needs is equally important to the patients. It is therefore recommended that information on breast cancer care and management should be broadened beyond medical treatment information to include psychosocial information. This will help patients to be able to manage their social and psychological stresses in their everyday life to improve on the quality of life of patients living with breast cancer (Clegg-Lamptey et al. 2009). 96 University of Ghana http://ugspace.ug.edu.gh 6.4.2 Implications for Theory on Breast Cancer Care Findings from the study also have implications for theory. More specifically, the findings broaden the theoretical understanding of information literacy in general and health information literacy in particular. The traditional models of information seeking behaviours mainly look at information seeking in terms of individuals in no distress conditions (Afsal, 2017; Parker et al. 2018). The findings in the current study show that individuals in distress conditions (such as patients living with breast cancer) might have different approach and orientation towards the whole information seeking process. It is imperative to expand models, especially on health informal literacy, which are mainly orientation towards seeking health information for prevention needs to be expanded to reflect the realities of patients living with chronic health conditions. In this study, the patients’ information needs mainly cohere around information for managing condition rather than information for prevention. They also see health facilities and health practitioners as the one-stop-shop for all their information needs. It is important to know therefore that chronic health conditions impact on information seeking process differently and therefore that need to be incorporated into models on health information seeking models. 6.5 Limitations of the study The current study had some limitations that need to be taken into consideration in the interpretations and or applications of the findings i. First of all, the sample size used for the study should guide interpretation and application of findings. Because patients with breast cancer constitute a hard to reach 97 University of Ghana http://ugspace.ug.edu.gh population, it was very difficult getting participants for the study. Therefore, even though the sample of 75 used for the study is relatively high due to the nature of the target population, it is still relatively limited for the purposes of generalisation. Therefore any attempt to generalise the findings should be done with caution. ii. Secondly, the study used mainly institutional sample. All the participants used were sampled from two health institutions. In Ghana, as in many African countries, managing chronic health conditions using health facilities is mainly influence income levels, especially when the condition is not covered by health insurance. Given that treatment procedures of breast cancer in Ghana are not covered by health insurance, it is possible that the sample used are of relatively higher income status. There are ample evidence in Ghana that low-income patients with chronic conditions sometime resort to prayer camps and other community-based herbal or spiritual healing centres (Atobra, 2013; Wiafe et al. 2014). This category of patients, most times do not end up in health institutions (Atobra, 2013). Therefore, the sample used are all institutional based and does not include community samples. Attempt to generalise findings to all patients with breast cancer should therefore be done with caution. iii. Lastly, the study was purely quantitative, through the use of survey. While this research approach has the potential of capturing large research sample, it also limited in a sense that participants do not have the option to explain themselves. It is therefore possible that there are deeper information needs issues that this methodology was not able to tap. 98 University of Ghana http://ugspace.ug.edu.gh 6.6 Suggestions for Future Studies The limitations notwithstanding, findings from the current study gives insightful understanding of information needs and sources among women living with breast cancer in Ghana. It is therefore imperative that future studies build on this study to advance knowledge. In view of this, the following suggestions are made for future study: i. Future studies should consider exploring the issues using different methodological approaches. Such studies can use for instance, qualitative or mixed-method approach to delve deeper into participants’ explanations of their informational needs and why they have those needs. Using different methodological approaches will provide methodological triangulations where findings from different methods can throw more light on the others. ii. Future studies should also consider using non-institutional samples. For instance, women with breast cancer in prayer camps and communities can be the focus of such studies to provide understanding of the informational needs and sources of these patients as well. iii. Further research is also needed on information needs of breast cancer patients who seek herbal treatment. iv. Lastly, there is the need for a longitudinal study to be conducted to understand how the informational needs and sources for patients with breast cancer in Ghana change overtime. 99 University of Ghana http://ugspace.ug.edu.gh REFERENCES Adusei-Poku, P., Opoku, S. 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Information Development, 32(2), 175-185. 105 University of Ghana http://ugspace.ug.edu.gh APPENDICES A: ETHICAL APPROVAL FROM 37 MILITARY HOSPITAL 106 University of Ghana http://ugspace.ug.edu.gh B: INFORMED CONSENT FORM UNIVERSITY OF GHANA DEPARTMENT OF INFORMATION STUDIES CONSENT FORM Study Title: Information Needs and Sources for Women undergoing Treatment and Management of Breast Cancer: A Study of 37 Military Hospital and Accra Regional Hospital Principal Investigator: Benedicta Boadi Department of Information Studies, University of Ghana, Legon General Information about Research The study examines information needs and sources for women undergoing breast cancer treatment and management. The study is for academic purposes (even though findings can improve policies on breast cancer care). Please your consent is being sought to take part of the study. Should you choose to participate, you will be required to fill this questionnaire (which will last for about 25 to 30 minutes) that examines information needs, sources of information, evaluation of information sources and coping strategies with breast cancer. 107 University of Ghana http://ugspace.ug.edu.gh Benefits/Risk of the study There are no physical risks or benefits involved in the study. However, recall of some past experiences as may be required by some of the questions posed may be discomforting. Participants who experience such discomfort can contact the researcher for appropriate referral or assistance. Benefit from this study may be indirect where findings of the study will inform policies on holistic breast cancer care and management. Study participants will not be compensated. Participants will only be given GHC 5 worth of phone recharge credit as an incentive for participating. Confidentiality and Privacy Ethical principles of privacy and confidentiality will be ensured. Participants will NOT be required to give information that will reveal their identity. All records and data collected will be highly protected and used for academic purposes and so apart from the student investigator, only supervisors, research assistants at the point of data collection or data entry. No other person or institution will have access to the data without following the proper channels. Withdrawal from Study Participation is voluntary and participants may withdraw at any time without penalty. Participation will be terminated when and if a participant indicates the will to withdraw from the study under any circumstances and/or reasons pertinent to the participant. Contact for Additional Information Should you have any concerns for further clarifications, you can contact the researcher on 0502988830 or through the mail at bbbnner@gmail.com. You can also write to the Department of Information Studies, University of Ghana, Legon. If you have any questions about your rights as 108 University of Ghana http://ugspace.ug.edu.gh a research participant in this study you may also contact the 37 Military Hospital Institutional Review Board (37MH-IRB) through landline 0302-769667 or email: irb37milhosp@hotmail.com. Section C-VOLUNTEER AGREEMENT "I have read all of the above, asked questions, received answers regarding participation in this study, and am willing to give consent to participate in this study. I will not have waived any of my rights by signing this consent form. Upon signing this consent form, I will receive a copy for my personal records." ________________________________________________ Name of Volunteer ______________________________________________ _______________________ Signature or mark of volunteer Date 109 University of Ghana http://ugspace.ug.edu.gh C: QUESTIONNAIRE A. Demographic Information Age (Please state your age in years):___________________________________ Marital Status (Please indicate your current marital status): 1. Single [ ] 2. Married [ ] 3. Divorced [ ] 4. Widowed [ ] 5. Separated [ ] Occupation (Please indicate the work you do): __________________________ Level of Education (highest attained): 1. Basic [ ] 2. SHS [ ] 3. Diploma [ ] 4. Degree [ ] 5. Masters [ ] 6. PhD [ ] Religion: 1. Christian [ ] 2. Muslim [ ] 3. Traditional Religion [ ] 4. Other [ ]…………… B. Information Needs This sub-section examines the aspects of the breast cancer treatment and management where you mostly need information on. Respond by ticking against a number. The meaning of the numbers are given as: 1 = not important (NI), 2= slightly important (SI), 3 = moderately important (MI), 4 = very important (VI), 5= extremely important (EI). No. Disease-specific Information Needs NI SI MI VI EI 1 The changes that can be seen on breast 1 2 3 4 5 110 University of Ghana http://ugspace.ug.edu.gh 2 Detail of the places where they offer breast screening 1 2 3 4 5 services (whether they are free of charge, such services in my residence, is a referral or an appointment needed) 3 What one should do, if a breast abnormality is detected 1 2 3 4 5 4 Who are at high risk of getting breast cancer 1 2 3 4 5 5 What causes breast cancer 1 2 3 4 5 6 The age at which the women should get screened for 1 2 3 4 5 cancer 7 How to detect whether I have any other cancer 1 2 3 4 5 8 Ways of detecting the cancer early 1 2 3 4 5 9 About breast lumps- why they occur, where they occur, 1 2 3 4 5 how to recognise 10 Whether all women with risk get the cancer 1 2 3 4 5 11 Information about mammography screening 1 2 3 4 5 12 Common breast pathologies 1 2 3 4 5 13 What can women do to minimise their risk of getting 1 2 3 4 5 breast cancer 14 Detail of the places where they offer mammography 1 2 3 4 5 services (whether they are free of charge, such services in my residence, is a referral or an appointment needed) No. Diagnosis Information Needs NI SI MI VI EI 111 University of Ghana http://ugspace.ug.edu.gh 1 Why each of the confirmatory tests are necessary 1 2 3 4 5 2 How to prepare for such test 1 2 3 4 5 3 Whether there are different stages of breast cancer and 1 2 3 4 5 what do they mean 4 Whether the tests can identify the stage of it 1 2 3 4 5 5 How women will act in response of either positive or 1 2 3 4 5 negative result in each of the above tests. 6 The investigations that confirm the diagnosis of breast 1 2 3 4 5 cancer 7 The reasons why doctors suggest certain additional 1 2 3 4 5 tests. Eg; X – rays, bone scans etc. 8 How my illness could affects my life in the future 1 2 3 4 5 9 what should a breast cancer victim discuss with family 1 2 3 4 5 / friends about the illness, if diagnosed No. Treatment Information Needs NI SI MI VI EI 1 What side effect I should report to the doctor / nurse 1 2 3 4 5 2 If I have side effects how to deal with them 1 2 3 4 5 3 If there are ways to prevent side effects / ease treatment 1 2 3 4 5 4 The possible side effects of treatment 1 2 3 4 5 5 The need to be in the hospital for treatment / if so, how 1 2 3 4 5 long 112 University of Ghana http://ugspace.ug.edu.gh 6 How long will I require treatment 1 2 3 4 5 7 Whether the treatment may give up any time duration. 1 2 3 4 5 8 About treatment for breast cancer 1 2 3 4 5 9 Mode of treatment is given 1 2 3 4 5 10 Whether treatment should do continuously 1 2 3 4 5 11 How to decide particular treatment plan 1 2 3 4 5 12 Any food restriction /important food, during treatment 1 2 3 4 5 13 Any restriction to take other drug (if any), during 1 2 3 4 5 treatment 14 Detail of the places where they offer treatment (whether 1 2 3 4 5 they are free of charge, such services in my residence, is a referral or an appointment needed) 15 Importance of mental preparation for treatment 1 2 3 4 5 No. Physical Care Information Needs NI SI MI VI EI 1 When should the breast be examined after surgery 1 2 3 4 5 2 How to care for my wound or incision 1 2 3 4 5 3 When should I commence my usual physical activities 1 2 3 4 5 4 Any additional therapies required to improve recovery 1 2 3 4 5 after surgery. 5 How long will it take to heal 1 2 3 4 5 113 University of Ghana http://ugspace.ug.edu.gh No. Psychosocial Care Information Needs NI SI MI VI EI 1 How to tell if the cancer has come back. 1 2 3 4 5 2 How to manage mental stresses successfully 1 2 3 4 5 3 What are the symptoms to get admitted, after 1 2 3 4 5 treatment? 4 How to face the society successfully 1 2 3 4 5 5 To be aware other family members about their risk for 1 2 3 4 5 breast cancer 6 What are the symptoms to come to the clinic 1 2 3 4 5 immediately? 7 Detail of the places where they offer counselling 1 2 3 4 5 services (whether they are free of charge, such services in my residence, is a referral or an appointment needed) 8 Detail of the places where we are able to buy brassieres 1 2 3 4 5 & the cost 9 Telephone numbers for public (hotline) which can be 1 2 3 4 5 used to get information on Breast Cancer 10 How often should be followed up in respect to 1 2 3 4 5 treatment mode? 11 How should family members discuss about the disease 1 2 3 4 5 with the patient at an initial level of diagnosis 12 Information on financial support 1 2 3 4 5 114 University of Ghana http://ugspace.ug.edu.gh 13 Where my family can go if they need help to deal with 1 2 3 4 5 my illness 14 Importance of continue treatment & care 1 2 3 4 5 15 Behaviour of newly diagnosed women 1 2 3 4 5 C. Sources of Information This sub-section examines the where you obtain information on breast cancer treatment and management from. Respond by ticking against a number. The meaning of the numbers are given as: 1 = Not at all, 2 = Sometimes, 3 = Often, 4 = Very often No. How often do you seek information from Not Sometimes Often Very these sources: at all often 1 Doctors 1 2 3 4 2 Nurses 1 2 3 4 3 Pharmacists 1 2 3 4 4 Television stations 1 2 3 4 5 Radio stations 1 2 3 4 6 Family 1 2 3 4 7 Friends 1 2 3 4 8 Co-workers 1 2 3 4 9 Other community members 1 2 3 4 10 Fellow breast cancer patients 1 2 3 4 115 University of Ghana http://ugspace.ug.edu.gh 11 Religious leaders (e.g. Pastors, Imams, 1 2 3 4 Priest) 12 Counsellors 1 2 3 4 13 Religious places (e.g. church, Mosque, 1 2 3 4 Shrine) 14 Newspapers 1 2 3 4 15 Health magazines 1 2 3 4 16 Research publications 1 2 3 4 17 Internet (e.g. website of cancer association, 1 2 3 4 health websites) 18 Social media (e.g. Facebook, WhatsApp, 1 2 3 4 twitter etc.) 19 Community centres 1 2 3 4 20 Herbalists 1 2 3 4 21 Other specify: 1 2 3 4 D. Evaluation of Information Content This sub-section examines how you evaluate information you get on breast cancer treatment and management. Respond by ticking against a number. The meaning of the numbers are given as: 116 University of Ghana http://ugspace.ug.edu.gh 1 = Not at all, 2 = Sometimes, 3 = Often, 4 = Very often No. How often do you engage in any of these Not at Sometimes Often Very to evaluate authenticity of information: all often 1 Discuss with health professionals 1 2 3 4 2 Discuss with my partner for second 1 2 3 4 opinion 3 Discuss with my family for second 1 2 3 4 opinion 4 Discuss with my friends for second 1 2 3 4 opinion 5 Discuss with other breast cancer patients 1 2 3 4 for their opinion 6 Compare it with what I know already 1 2 3 4 7 Read more on it 1 2 3 4 8 Ask someone to read more on it for me 1 2 3 4 9 Pray over it 1 2 3 4 10 Take information from only sources I trust 1 2 3 4 11 Verify it from people who are more 1 2 3 4 educated 12 Others: 1 2 3 4 E. Challenges and Barriers 117 University of Ghana http://ugspace.ug.edu.gh 1 = Not at all, 2 = Sometimes, 3 = Often, 4 = Very often Challenges and Barriers Not at all Sometimes Often Very often Usually don’t know where to seek for 1 2 3 4 information Usually do not have time to seek for 1 2 3 4 information I don’t have what it takes to seek for 1 2 3 4 information I don’t have the physical strength to look for 1 2 3 4 information I don’t have the emotional and psychological 1 2 3 4 strength to do so Usually feel lazy to look for information 1 2 3 4 I usually don’t seek for information because 1 2 3 4 I don’t want others to know I get all the information I need from the 1 2 3 4 hospital It is more difficult doing so looking at where 1 2 3 4 I live F. Coping with Breast cancer: 1 = Not at all, 2 = Sometimes, 3 = Often, 4 = Very often 118 University of Ghana http://ugspace.ug.edu.gh How often does information you receive Not at all Sometimes Often Very help you to: Often Engage in proper self-care and management 1 2 3 4 Distract yourself from worrying thoughts? 1 2 3 4 Remind yourself that aches and pains could 1 2 3 4 be caused by things other than the cancer spreading? Make a list of priorities for the week so that 1 2 3 4 you got important things done? Look for what strengths you have to cope 1 2 3 4 with cancer? Cope with frustration by channelling it into 1 2 3 4 other things (e.g. physical activity like housework or gardening)? Organise your day so that you got the most 1 2 3 4 out of it, despite cancer? Practice relaxation? 1 2 3 4 Make sure you think of some of the positive 1 2 3 4 aspects of your life? If you are in a close relationship, how 1 2 3 4 often does information help you to: Involve your partner in an activity that 1 2 3 4 helped you cope with cancer? 119 University of Ghana http://ugspace.ug.edu.gh Try to see cancer as a challenge that you and 1 2 3 4 your partner have to face together? Discuss how your partner could help support 1 2 3 4 you? Talk to your partner about how you could 1 2 3 4 organise things to take some pressure off you? END OF SURVEY – THANK YOU 120