THE LIVED EXPERIENCE OF BREAST CANCER SURVIVORSHIP OF SAUDI ARABIAN WOMEN Thesis submitted for the degree of Doctor of Philosophy by Wafa Almegewly Cardiff University
 School of Healthcare Sciences 2017 Declaration This work has not been submitted in substance for any other degree or award at this or any other university or place of learning, nor is being submitted concurrently in candidature for any degree or other award. Signed .......Wafa Al-megewly.............................. (candidate) Date ....22/5/2017........................ Statement 1 This thesis is being submitted in partial fulfilment of the requirements for the degree of PhD. Signed .......Wafa Al-megewly.............................. (candidate) Date ....22/5/2017........................ Statement 2 This thesis is the result of my own independent work/investigation, except where otherwise stated. Other sources are acknowledged by explicit references. The views expressed are my own. Signed .......Wafa Al-megewly.............................. (candidate) Date ....22/5/2017........................ Statement 3 I hereby give consent for my thesis, if accepted, to be available online in the University’s Open Access repository and for inter-library loan, and for the title and summary to be made available to outside organisations. Signed .......Wafa Al-megewly.............................. (candidate) Date ....22/5/2017........................ Statement 4: previously approved bar on access I hereby give consent for my thesis, if accepted, to be available online in the University’s Open Access repository and for inter-library loans after expiry of a bar on access previously approved by the Academic Standards & Quality Committee. Signed .......Wafa Al-megewly.............................. (candidate) Date ....22/5/2017........................ ii Summary Background: There is a debate in the literature about how breast cancer survivors perceive themselves and make sense of their experiences. This conflict has emerged from cancer advocacy communities who attach positive meaning to breast cancer survivorship, and women with breast cancer that do not always share this positive view. Women who have had breast cancer often face difficulties as to how to make sense and understand their breast cancer experiences, and specifically, the ways in which cul tural sensitivities impact and shape their perceptions about breast cancer survivorship. In Saudi Arabia, the increased length of survival of breast cancer patients, the younger age at diagnosis, and the unique cultural norms and values all suggest how imp ortant is to explore the experience of breast cancer survivorship lived by young Saudi Arabian women. Methods : This is a qualitative interpretive phenomenological study. Narrated data include s 18 interviews with Saudi women aged between 30 -50 years who had completed their treatment 6 -47 months prior to the semi -structured interview. The data that reflect women’s experiences begin with diagnosis through treatment and afterwards. The data were then articulated and translated into the English language. The ver batim transcripts were analysed using the Interpretive Phenomenological Analysis (IPA). The lifeworld framework and its fractions ( embodiment, social, selfhood, discourse, project and time perspectives) were used to gain a sense of what women encounter during their lived experiences . Findings : The analysis produced five superordinate themes. These were : survivorship experience; cancer change me; identity, faith and belief; and health care experience. These themes showed most of the women perceived breas t cancer as a deadly disease. Some participants tried to keep their diagnosis hidden from the public and even from their families. Women often had difficulties with psychological adjustment to the physical side effects of breast cancer treatment. Infertili ty and post-menopausal symptoms were the main reported physical issues. They expressed feelings of fear of recurrence, living with loss, and being lonely; they had concerns for maintaining personal and social relationships. Women faced challenges in carryi ng out their roles as mothers, wives , and daughters and in keeping the family systems functioning. They constructed their illness experience, restructured their ways of living to accommodate breast cancer’s cultural perception, their fear of the devil’s ey e and their sense of body and self. Their attitudes towards being defined by their illness were varied. Some women embraced being fighters against cancer and the cultural norms. On the other hand, most believed that surviving breast cancer was a result of God’s will and viewed their experience as a ‘test’ and ‘wake-up call’ to what was important in life . Survival was linked to normality and resuming their activities previous to their breast cancer diagnosis. Some women shared needs concerning health care practice, communication and patient preparation and information. While some participants felt that there was a need for shared decision making in their care, some healthcare providers were obligated to follow cul tural norms in involving male relative when breaking bad news and discussing the patient’s care plan. Conclusion: This study helps to raise the awareness of Saudi women’s experience and highlights the need to develop a cultural model of breast cancer survivorship. iii Acknowledgements This study would not have been possible without the active participation of the women who agreed to participate in the study and take the time to explore personal, sensitive and complex experiences. Special thanks go to the supervisors who initially engaged with the development of the thesis, Prof. Dinah Gould and Dr. Sally Anstey. They have supported, challenged and guided me especially when the PhD journey became a struggle. Both made me be lieve that studying for and completing this thesis was possible. Thank you to Princess Nora bint AbdulRahamn University presented by the Saudi Arabian Cultural Bureau in London who have financially supported my PhD study. Prof. Yassir Bahader and Dr. Sayed Karim who generously shared their understanding and experience of Oncology with me and supported me during the data collection phase in Saudi Arabia. Thanks to Mrs. Fatima Akber (breast cancer survivor) and the Saudi Cancer Foundation. My deepest appreciation belongs to my family for their patience and understanding. I dedicated this dissertation to who I am indebted to for my success in my PhD journey, and who passed away while this thesis was on its way to see the light and being completed. To my beloved sister Haia, who encouraged me and believed in my dreams. Also, to my beloved brother Bader who has always been in my prayers asking God to have mercy on him. iv Preface I began my PhD journey with an interest in the cancer experience and became aware of survivorship through meeting Dr. Samiah Almoudi, the first Saudi woman to speak publicly about her experience with breast cancer, during my BSc nursing studies, and reading newspaper articles about her personal experiences and her key messages to women. Initially, I was interested in studying the quality of life among breast cancer patients in Saudi Arabia. This was a subjective investigation, determined from the patient’s view of breast cancer experience from different perspectives, such as physical, social. psychological and spiritual, indicative of treatment outcome. This helped me to gain an extensive background in breast cancer in general. The theme of quality of life was my initial thought for my PhD’s scope. However, I did not pursue this theme because it was essential for me to understand the lived experience of breast cancer survivorship and culture’s impact on it, uncover ing any hidden issues before assessing the impact on the patient’s quality of life. Reading in the context of cancer survivorship alerted me to the fact that the number of people living with and beyond cancer was rising and that they were concluding that the treatment was not the last phase of their journey. Around this time, I read a study by Kaiser (2008), who found that some American women do not want to be identified as survivors. I was surprised to read this because I thought that American women, or Western women in general, embraced the positive feminist image that honoured them for having courage in fighting breast cancer, which is part of the reason why I watch and listen to the media. Several questions can be posed about the experience of breast cancer survivorship in Saudi women. What is the breast cancer survivorship experience? Why do women either reject or accept being referred to as survivors? Is this associated with culture? Is there something unique about the lived experience of breast cancer survivorship among younger Saudi women? Would the aspects that apply in the Western sphere also be transferable to Eastern culture? All these initial questions led me to think about how women perceive their lived experience after undergoing breast cancer treatment. v Through talking with 18 women about their experiences with breast cancer, I have come to comprehend the cultural impact in the women’s life-world. Certainly, breast cancer is about screening, diagnosis, treatment and follow-up, but it is also about how culture defines these matters and makes them practical for women. Although I do not have breast cancer, I have been diagnosed with a long-term health condition and conducting this research triggered my experience, letting me be more involved in these women’s worlds. I understand the feelings when your body lets you down, the experience of being vulnerable and dealing with public perceptions of sick women as insufficiently good wives and mothers. These women have been thrown into the context of breast cancer, which involves being obligated to live in/with/beyond it . I thought that my life-world and those of the participants were different until I experienced hiding the news of my elder brother’s medical condition from my mother when I knew how critical it was. My intention was to protect her from pain and I assumed that she would not be able to endure this news given the deaths of my sister and her husband in a car accident on the same day that my brother had his accident. I could not believe that some health care providers showed negative attitudes towards women with breast cancer as they revealed the bad news until I experienced this situation myself when the doctor stated that it would be a miracle if my brother lived. I mentally and physically re-lived this experience during the interviews with the participants, but this mental exercise facilitated a deeper understanding of the women’s life-worlds. Overall, this research project has been an educating, enriching and challenging journey, especially for an international student like m, eand I have gained a deeper understanding of my cultural issues. The researchh as helped me to acknowledge the impact of my personal and professional experiences andt o interpret the survivorship experience amongst pre-menopausal Saudi breast cancer survivors .My PhD study presented the opportunity for me, as a Saudi woman, nurse and lecturer, to explore and describe the experience of being a breast cancer survivo r. vi Contents table Chapter 1 Introduction .................................................................................................. 1 1.1 Introduction to the thesis .................................................................................. 1 1.2 Research problem ............................................................................................. 1 1.3 Significance of the study .................................................................................. 3 1.4 Research aim: ................................................................................................... 4 1.5 Research questions: .......................................................................................... 4 1.6 Research objectives: ......................................................................................... 4 1.7 Theoretical consideration ................................................................................. 4 1.8 Research approach ............................................................................................ 5 1.9 Structure of thesis ............................................................................................. 6 Chapter 2 Background to the study: setting the scene .................................................. 7 2.1 Breast cancer epidemiology.............................................................................. 7 2.2 Breast cancer screening and diagnosis ............................................................. 9 2.3 Breast cancer treatment .................................................................................. 11 2.4 Breast cancer survival and surveillance.......................................................... 14 2.5 Development of the concept of cancer survivorship ...................................... 16 2.6 The contemporary position of cancer survivorship ........................................ 17 2.7 The debate about the words ‘survivorship’ and ‘survivor’............................. 18 2.8 Linguistic and cultural interpretations of the word ‘survivor' ........................ 21 2.9 Healthcare in Saudi Arabia ............................................................................. 23 2.9.1 The Saudi healthcare system .................................................................. 23 2.9.2 Breast cancer screening .......................................................................... 25 2.9.3 Breast cancer care service and its challenges ......................................... 26 2.10 Life of women in Saudi Arabia ...................................................................... 28 2.11 Conclusion ...................................................................................................... 31 Chapter 3 Literature review......................................................................................... 32 vii 3.1 Introduction .................................................................................................... 32 3.2 Search strategy ................................................................................................ 32 3.3 Inclusion and exclusion criteria ...................................................................... 33 3.4 Quality assessment of the studies ................................................................... 34 3.5 Study characteristics ....................................................................................... 35 3.6 Study methodologies ...................................................................................... 36 3.7 Study methods ................................................................................................ 37 3.8 Perception of breast cancer survivorship ........................................................ 40 3.9 Survivor identity ............................................................................................. 41 3.10 Women’s experiences following curative breast cancer treatment ................ 44 3.11 Cultural perspectives on living with and beyond breast cancer ..................... 53 3.11.1 Health promotion behaviours ................................................................. 53 3.11.2 Beliefs about the causes of breast cancer ............................................... 54 3.11.3 Reframing the perception of cancer........................................................ 55 3.11.4 Being a breast cancer survivor................................................................ 57 3.11.5 Women’s role ......................................................................................... 59 3.11.6 Communication ...................................................................................... 60 3.11.7 Support services ...................................................................................... 61 3.12 Healthcare provision ....................................................................................... 63 3.12.1 Follow-up models ................................................................................... 64 3.12.2 Survivors’ preference for follow-up care providers and long-term care 66 3.12.3 Surveillance ............................................................................................ 67 3.12.4 The survivorship care plan (SCP) ........................................................... 69 3.12.5 Self-management .................................................................................... 70 3.13 Gaps in the literature....................................................................................... 71 3.14 Conclusion ...................................................................................................... 72 Chapter 4 Research design and methods ..................................................................... 82 viii 4.1 Introduction .................................................................................................... 82 4.2 Research aim: ................................................................................................. 82 4.3 Research questions: ........................................................................................ 82 4.4 Research objectives: ....................................................................................... 82 4.5 Research design .............................................................................................. 83 4.6 Research Paradigm ......................................................................................... 83 4.7 Using narratives in qualitative research.......................................................... 85 4.8 The social constructivist perspective in research ........................................... 86 4.9 Theoretical perspectives: ................................................................................ 87 4.9.1 Interpretive phenomenology ................................................................... 87 4.9.2 Interpretive phenomenological analysis (IPA) ....................................... 89 4.10 The use of language in IPA ............................................................................ 90 4.11 Why IPA in preference to other qualitative approaches ................................. 92 4.12 Philosophical framework: the life-world ........................................................ 93 4.13 Life-world fractions ........................................................................................ 95 4.14 Obtaining ethical approval.............................................................................. 97 4.15 Negotiating access .......................................................................................... 97 4.16 Sampling ......................................................................................................... 97 4.17 Inclusion and exclusion criteria ...................................................................... 98 4.18 Recruitment process: .................................................................................... 100 4.19 Data collection method ................................................................................. 101 4.20 Feasibility study ............................................................................................ 102 4.21 The interview process ................................................................................... 103 4.22 Practicalities.................................................................................................. 105 4.23 Researcher involvement: reflexivity ............................................................. 106 4.24 Conclusion .................................................................................................... 108 Chapter 5 Data management: principles and procedures .......................................... 110 ix 5.1 Introduction .................................................................................................. 110 5.2 Data management ......................................................................................... 110 5.3 Data analysis ................................................................................................. 111 5.4 Process .......................................................................................................... 111 5.5 Conclusion .................................................................................................... 118 Chapter 6 Their idiographic experiences .................................................................. 120 6.1 Introduction .................................................................................................. 120 6.2 Participant characteristics ............................................................................. 120 6.3 Breast cancer survivors’ idiographic experiences ........................................ 121 6.3.1 Nourah .................................................................................................. 121 6.3.2 Aisha ..................................................................................................... 121 6.3.3 Sahara ................................................................................................... 123 6.3.4 Shatha ................................................................................................... 124 6.3.5 Asma ..................................................................................................... 125 6.3.6 Anoud ................................................................................................... 125 6.3.7 Lama ................................ ................................ ................................ ..... 126 6.3.8 Asera ................................ ................................ ................................ ..... 127 6.3.9 Shahad ................................ ................................ ................................ .. 128 6.3.10 Leena ................................ ................................ ................................ .... 128 6.3.11 Ohoud ................................ ................................ ................................ ... 129 6.3.12 Shamas ................................ ................................ ................................ .. 130 6.3.13 Alaa ................................ ................................ ................................ ....... 131 6.3.14 Sara ................................ ................................ ................................ ....... 132 6.3.15 Amar ................................ ................................ ................................ ..... 133 6.3.16 Azizah ................................ ................................ ................................ ... 133 6.3.17 Haia ................................ ................................ ................................ ....... 134 6.3.18 Maha ................................ ................................ ................................ ..... 135 x