Hidden voices: an interpretative phenomenological analysis of the experience of surviving breast cancer in Saudi Arabia

Abstract

Background

Women with breast cancer often have difficulties in making sense of and understanding their experiences, specifically the ways in which cultural sensitivities impact on and shape their lifeworlds.

Aims

The aim of this study is to explore the experience of being a breast cancer survivor in Saudi Arabia.

Methods

Qualitative, in-depth, semi-structured interviews were conducted with 18 Saudi breast cancer survivors aged between 30 and 50 years who had finished treatment 6–47 months before data collection. The data were transcribed verbatim, translated from Arabic into English and analysed using interpretative phenomenological analysis.

Results

Three themes emerged: the meaning of cancer; hidden survival; and the cultural meaning of survival. For women in Saudi, breast cancer has a cultural stigma linked to death. It changes the sense of self and of society, leading some women to hide their diagnosis from the public and their families. The meaning of survival in a Muslim context has a cultural and religious base, linked to God's will, normality and resumption of activities.

Conclusions

The study helps give Saudi women a ‘voice’ through the understanding of their experiences of surviving breast cancer. The unique cultural perspectives provide new insights, which can guide healthcare practice and inform the development of programmes to support women who survive breast cancer.

Introduction

Breast cancer is the most common cancer in Saudi women, accounting for 27.4% of all newly-diagnosed female cancers (5378) in 2010. Of the cases that presented in an advanced stage, 39.6% were regional (stage III) and 16.9% were distant (stage IV), and the median age at diagnosis was 49 years (Kingdom of Saudi Arabia Ministry of Health Saudi Cancer Registry, 2014), contrasting with 63 years in developed nations (El Saghir et al., 2007). Although breast cancer survivors of different ages might experience common treatment side effects, younger women reported low levels of quality of life (Bantema-Joppe et al., 2015; Champion et al., 2014), including psychological distress, sexual functioning and body image concerns, and relationship problems.

Lack of knowledge about breast cancer prevents Saudi women from practising early detection and they are deterred from seeking medical help because they perceive that doing so is against God's will (Ide and Sanli, 1992). Studies have reported that the reluctance of Muslim women to attend breast screening is rooted in their belief that touching the breast, even in private, is not acceptable, together with an unwillingness to be examined by a male doctor and shyness (Banning et al., 2010; Kucukkaya, 2010). The stigma of breast cancer is associated with high risk of death and its occurrence in a private area of the body such as the breast – a body part that is not openly spoken about in Saudi culture. This is explained by modesty, an important element of Islam, which requires women to cover their bodies (Yosef, 2008).

As breast cancer survival rates have improved, discourse surrounding the disease has become more complex. There is a debate in the literature about how breast cancer survivors perceive themselves and make sense of their experiences. In Western societies, hope is a central element adopted by many cancer organisations; they try to send a reassuringly clear message to inform the public that breast cancer is a chronic disease that can be managed with medical, psychosocial and educational support (American Cancer Society, 2014). However, the word ‘survivor’ does not appear to be favoured by women with breast cancer (Kaiser, 2008; Sabo and Thibeault, 2012; Williams and Jeanetta, 2016). Some cancer survivors recover developing a renewed sense of life and purpose (Allen et al., 2009; Davis et al., 2014), while for others the toll taken by cancer and its effects on health, functioning, sense of security and well-being is more problematic (Khan et al., 2011; Smith et al., 2016).

The above Western phenomenological literature on breast cancer often describes the formation of personal and life events without referencing the role of culture and the ways in which women interpret their lifeworlds. Through gender, culture, ethnicity, religion, relationships and language people are connected in co-creating an understanding and reconstruction of the meanings of their experiences (Van Manen, 1990). In social constructivism, meaning is a product of cultural, social, linguistic, discursive and symbolic practices (Cojocaru et al., 2012). For Saudi women, the meaning-making process might be influenced by religious, social and gender factors. Therefore, this study explored whether the experiences of women in Saudi resonate with the Western concept of survival and identified the unique experiences of Saudi Arabian women.

Design and methods

The aim of this study was to explore the experience of being a breast cancer survivor in Saudi Arabia, using interpretative phenomenological analysis (IPA), which is an established methodological approach in health and psychology research (Smith, 1996). IPA seeks to understand how people make sense of events, relationships and experiences within their specific lifeworld context (Larkin et al., 2011). IPA helps to achieve more than a description of experience; it contributes to the inductive development of individual meanings of that experience.

IPA was used in this study because it emphasises individuals' meaning of living with an experience and their understandings of that experience, which are influenced by the social and psychological discourses related to the event (Smith et al., 2009). IPA was used in an attempt to demonstrate the role of culture impacting on the experience of breast cancer through intersubjective inquiry and analysis. It is gaining importance as an approach seeking to uncover information and culturally embedded concepts and practices that could not be simply analysed by thematic analysis (Larkin et al., 2011). Thematic analysis allows flexibility in coding and categorising themes and measuring their frequency, but does not support individuality in understanding the complexity of meanings which are central in my work. It does not accord with my ontological position as a Saudi woman valuing the unique experience of Saudi women surviving breast cancer.

My participants were female Saudi breast cancer survivors aged between 30 and 50 years, who had been diagnosed with stage I or II cancer, and had finished treatment 6–47 months before data collection. They were recruited purposively from oncology outpatient clinics in a single large urban hospital. Ethical approval was granted by Cardiff University and the hospital in Saudi Arabia. Women were given verbal and written information, and informed consent was obtained. Semi-structured face-to-face interviews were conducted in Arabic. Questions addressed women's experiences of diagnosis, treatment and post-treatment. Different types of questions were used to structure the interviews with logical transitions between events: narrative – ‘please tell me about your experience with breast cancer beginning with how you came to be diagnosed with cancer’, and evaluative – ‘How was it for you, when your treatment ended?’.

In IPA, researchers tend to use small sample sizes, typically 6 to 10 participants (Smith et al., 2009). In this study 18 women were recruited, and their voices differed in their willingness and ability to describe difficult experiences. Thus, the duration of each interview varied from 30 minutes to 2 hours, with some providing much more data than others.

Analysis

Data were transcribed and translated into English. Notes describing the initial thoughts and themes that influenced each woman's experience were recorded in Arabic to preserve meaning. The verbatim transcripts were analysed using IPA, which has flexible stages (Smith et al., 2009), starting with a close interpretative reading of the first case from which the initial notes were transformed into emerging themes. These themes were connected, clustered to detect patterns and transformed into a table of superordinate themes. After analysis had been conducted on each case, generating this table of superordinate themes, patterns were established across tables documented in a master table of themes for all participants, supported by verbatim extracts from each participant. IPA thus moves from individual to shared experiences and from the descriptive to the interpretative level (Smith et al., 2009).

Results

The results are presented to describe the unique perspectives of the lived experience of breast cancer survivorship among 18 Saudi Arabian women. Their names have been changed to protect their identities. Each superordinate and subordinate theme reflects the essence of participants' experiences during diagnosis and treatment and beyond. All of the women here revealed their negative thoughts about breast cancer and how they live with its treatment consequences. They shared common cultural discourse related to survival experience described as hidden. There was variation in the meaning of survival for the participants, therefore the most common examples are presented.

Confronting breast cancer diagnosis

Meaning of cancer

At the time of breast cancer diagnosis, most women described their distress and difficulty accepting their illness. They expressed shock at having breast cancer at such a young age, and fear of death and leaving their loved ones:

I am the first and the only person in my family who has been diagnosed with breast cancer at this young age. (Shatha)

I thought that I would die. I said to myself that it was our God's will. (Asera)

I thought about my children, life and death, but mostly about my children. (Nourah)

In terms of the meaning of cancer held by the community, some participants claimed that people perceived them as patients who would die or had caught a contagious disease:

One woman asked me about how many children I have, and said to me in a tone filled with sorrow: ‘Oh, I hope you have enough time to live and raise them.’ It felt like I was going to die tomorrow! (Shatha)

He [husband] thought that I had an infectious disease and he would catch it. It felt that I was not good to him. (Asma)

Living with breast cancer

Hidden survival

Having breast cancer led to most participants living in silence. They hid their disease to protect themselves from feelings of pity and negative comments, became less social and limited their circle of friends:

You know, sometimes I share my experience with others, without saying that it was in fact my story and that I was the patient … just telling them that I knew a woman who had breast cancer and who is now alive and living her life normally. (Ohoud)

My plan was to get the treatment in the US and stay there for 2 years and then come back, because I didn't want people to know and then start to feel sorry for me. (Shahad)

Others concealed feelings to protect their loved ones. They used an avoidant or suppressive coping style that inhibits the experience and the expression of negative feelings, because their sense of being there for others was dominant:

It's expected for me as a daughter to make my mother happy, not to upset her with my disease, especially when my extended family link it with death. (Sara)

My sister had breast cancer; she was on the second cycle of chemotherapy when I had started the chemo. I couldn't tell her that I had it too. She is my younger sister and I was supporting her, while the reality was that I needed someone to support me too. (Azizah)

Socially, coping with other people's curiosity was difficult, especially issues considered to be important for the image of women in the Saudi community, such as getting married and becoming pregnant.

Who would marry a girl who has had breast cancer and is infertile in our community! (Anoud)

Failure to adapt to a life with infertility prompted concerns about the future related to marriage, especially in a male-dominated society where husbands' desire to father male children is very important:

I only have two daughters and my husband wants a boy and I can't give him that. You know, I didn't tell him that I was infertile. I told him that I was having hormonal changes and that it would take time to get back to normal. I can't tell him the truth … he will go and find another woman. (Lama)

The stigmatised perception of breast cancer and fear of the ‘devil's eye’, which is perceived to be the cause of breast cancer, caused many women to limit their social life and hide their identities as breast cancer survivors. They felt obliged to hide this stigmatising illness and to be less social in order to accommodate others’ expectations:

One woman asked me if I had recovered from cancer, and I answered, ‘Yes, thank God’. She said: ‘You were lucky, because the cancer came back for a woman I knew, and she died.’ I wasn't sure if I heard her saying ‘Whatever Allah Wills, Blessed is Allah’, you know, just to protect me. (Amar) [This is a saying in Islam to seek protection from the evil eye.]

Faith and belief

The cultural meaning of survival

The Islamic faith is central in women's experience with breast cancer. They accepted their disease as part of their rigorous obligation towards Allah to obey God's will:

I was meant to have a cancer; this is our God's will and God gives me a second chance to live. (Aisha)

This is God's will. I wasn't the one who caused it to myself! (Shahad)

Women's strong belief in God's will has influenced their thoughts about breast cancer and the way they perceived it from religious, peaceful perspectives, for example, as a test from God. Many women believed that surviving breast cancer is a result of God's will and using other alterative medical-religious options rather than a treatment outcome:

I don't think that a survivor is one who finished the medical treatment, because I heard stories about people who took alternative medicine like herbs, or were treated by religious practices like reading the holy book and drinking holy water (Zamzam), and they survived. (Shatha)

I perceived this experience as a test from God. (Haia)

Participants rarely used the term ‘survivor’ to describe their identity; some used terms such as ‘someone who had cancer’, which related to the passage of time, and others refused to be called ‘survivor’ because it acted as a reminder of an experience that they would rather forget:

I prefer ‘someone who had cancer’ because cancer is no longer present. (Shamas)

What I have gone through was something temporary and I don't like to talk about it. Because if I talk, it feels as if I'm still living it. (Nourah)

Others linked being a survivor to returning to normality, which was associated with performing their roles, resuming their usual activities and no longer being ill enough to warrant the title of survivor:

Now, my life is normal and the hard memories have faded away. I'm a normal person and don't like my identity to be linked to a disease. (Ohoud)

Surviving is to get rid of the disease, to be healthy and to reach a stage where you feel safe and normal. (Lama)

I would call myself a victim if I got it in a late stage, but, also, I don't think that I'm a survivor until I pass 2 years of being cured with no signs of cancer returning. (Nourah)

Many women called themselves survivors from a physical perspective, but not psychologically. For them, the impact of living with psycho-social consequences of breast cancer treatment, such as fear of cancer recurrence, lack of support, and disturbance of the marital relationship, rank higher than any physical issues:

Yes, I survived cancer medically, but I'm a victim at the same time. Cancer took away many things from me … my happiness, my husband … (Asera)

I do believe that I'm cured, but sometimes the negative thoughts about cancer recurrence jump into my mind, and I can't control that. (Amar)

Discussion

This study has illuminated the unique cultural aspects of the lived experience of breast cancer survival from the personal, emotional, familial, social and religious perspectives experienced by Saudi women. The following section shows how they contrast with the experiences of women from other cultures.

Meaning of cancer

Saudi women described their shock, fear of death and having to leave their loved ones behind. This may be because their breast cancer was not discovered in the early stages and was commonly reported among young women raising their children. This is consistent with existing phenomenological studies (Liamputtong and Suwankhong, 2015; Patel-Kerai et al., 2015). Gujarati Indian women found it difficult to make sense of their experiences, because they lacked knowledge about breast cancer and did not expect it to occur. Furthermore, this unexpected diagnosis encouraged them to search for explanations, such as God's will (Patel-Kerai et al., 2015). By contrast, in Western culture, women's experiences with breast cancer are primarily shaped by notions of individual factors, such as age, genetics, obesity, smoking, alcohol and environmental risk factors, such as radiation (Williams and Jeanetta, 2016).

Hidden survival

The women in this study preserved the illusion of wellness to try to protect their families. They immersed themselves in hidden worlds, and distanced themselves from those who might treat or label them differently, many of whom made comments about their low risk of survival, negative marital relationships and plans for having children. Women in this study showed their fear of being separated from their loved ones. In a male-dominated society, women with breast cancer were often concerned that their relationship with their husbands would be affected due to their disease, especially in the case of Muslim countries where women largely depend on their husbands (Doumit et al., 2010). In Jordan, women diagnosed with breast cancer depend on their husbands financially and any change in their relationship could constitute a risk to the woman's security (Alqaissi and Dickerson, 2010). They often used avoidant or suppressive coping styles to suppress negative feelings (Moore and Spiegel, 2004). They were obliged to practise their roles, for example, involving ‘being there for others’ within their family, but not necessarily being survivors in their community. Similar results were reported by Brazilian women with breast cancer who made an effort to hide their illness (Da Costa Vargens and Berterö, 2007). Against this, Western women's ability to verbalise their needs and concerns is important in coping and meeting their supportive needs (Allen et al., 2009; Davis et al., 2014), which has not been reported in the present study. Western women create a new sense of life that involves embracing family, opportunities and their health (Kaiser, 2008; Sabo and Thibeault, 2012).

Some women in this study perceived the ‘devil's eye’ as the cause of their breast cancer, at the same time continuing to live in fear of the ‘devil's eye’ after treatment. In Saudi culture, the ‘devil's eye’ refers to a gaze associated with envy, jealousy and extreme admiration of one person by another, which may cause either physical or mental problems. This belief affects their mode of living, distancing them from unwanted social possibilities with people who may envy them. Bahraini women have reported the belief that the ‘devil's eye’ was the cause of cancer (Jassim and Whitford, 2014).

The cultural meaning of survival

In terms of the cultural meaning of survival in Saudi Arabia, women identified God's will as the reason for their survival of breast cancer and preferred to continue the same lifestyle they had always had. In Islam, it is believed that God has plans for each person, including death, and that, according to their deeds, the individual might be sent to heaven or hell (Silbermann and Hassan, 2011). In a qualitative study Latino women exhibited the same fatalistic belief; however, even though many participants perceived their destiny to be in God's hands, as in this study, they took an active role in personal health promotion, driven by the belief that ‘God helps those who help themselves’ (Flórez et al., 2009: 294). In contrast, studies in Europe and the USA did not address the religious or cultural influences shaping the meaning of breast cancer survival, but emphasised the individual's fighting spirit to beat breast cancer as the main factor in survival, in addition to receiving proper treatment (Davis et al., 2014; Documet et al., 2012; Khan et al., 2011). These cultural differences might propel health-care providers and policymakers to re-examine the current notion of breast cancer survivorship, which is very sensitive to specific cultures, such as in Saudi Arabia.

Other women choose to embrace normality; they want their life to be as it was before breast cancer, especially with regard to their families, plans and opportunities. This desire explains why these women identified themselves as someone who has had breast cancer but preferred to be the same person as pre-diagnosis. Little et al. (2002) claimed that cancer patients restore a sense of continuity in their lives after breast cancer by returning to their pre-cancer identities, drawing on past memories and finding ways to preserve continuity of past memories, present experience and constructions of the future. This is in contrast to the findings of the present study, where ‘survivor’ identity was unknown by many women and was linked only to physical well-being. To conclude, labelling women as survivors might help some adjust but leave others feeling uncomfortable. This diversity in women's responses to survival might present a challenge to healthcare providers seeking to address patients’ needs.

There are several limitations in this study: demographically, the qualitative data were collected from one care setting and region in Saudi Arabia. It was challenging to use IPA – which encourages the collection of deep personal data – from Saudi women, who are not publicly encouraged to speak openly about private issues, such as their bodies and marital relationships. Social norms discourage expressing and sharing negative emotions with others, especially when some women have difficulty recalling traumatic events or are unwilling to talk about them. Translation problems also arose because some colloquial Arabic words do not translate into English, therefore some meaning was lost through translation. This challenge was addressed by keeping records of different meanings, and the use of rich quotes could enhance the quality of the work rather than through more conventional ‘translation–back-translation’. Close engagement with the data generated personal bias, especially when IPA recommends that the analysis of one case should not influence subsequent analyses of subsequent stories. IPA recognises the researcher's role in establishing a balance between detachment and attachment with the participants’ world and experiences, and encouraging reflexivity (Shaw, 2010). Therefore, as the author, I reflected on my experiences during the study, as I am a young Saudi woman who originally shared similar cultural and religious beliefs with the participants. Also, I speak the Arabic language and recognise that the cultural background ensures rich insight into the data. I aimed to be as objective as possible, whilst also being sensitive and compassionate.

Conclusion

The findings of the present study revealed that there are differences between Western and non-Western cultures with regard to the experience of being a breast cancer survivor. Women in the present study struggled to hide their breast cancer identity in public, while continuing with their normal life. They perceived their experiences through different lenses including those of self, family, relationships, language, activity and religion.

The present study has contributed to knowledge about raising Saudi women's voices by understanding their experiences of breast cancer survival. It has helped to give Saudi women the opportunity for their stories to be told and their experiences with breast cancer diagnosis and treatment to be revisited. It has elucidated the process of building meaning around breast cancer and how the women modified cultural meanings (e.g. belief in the ‘devil's eye’, God's will) to fit their lives. Finally, it has highlighted the importance of being sensitive to the way that culture shapes breast-cancer survival and to whether or not women embrace the survivor identity.

Key points for policy, practice and/or research

• Policy makers need to acknowledge women's positions, social systems and cultural beliefs as important when designing a survival model, and allow them to inform appropriate health strategies. However, it might be challenging to change some religion-based cultural beliefs.

• Acknowledgement of the culture in cancer care and development of a cultural individual assessment competency tool may help to facilitate the development of breast cancer survival models.

• The concept of support needs to be adjusted according to cultural perspectives. For example, faith could be regarded as a tool that might help women cope with breast cancer, in addition to social, psychological and educational support.

• In assessments, healthcare providers should cover not only the physical concerns of their patients but also their social and psychological issues, as every woman has a different and unique belief, value and support system.

• Future longitudinal research considering mixed methods, including observational and interview approaches, is required to assess patients' needs throughout breast cancer diagnosis, treatment and survival, as well as to understand the dynamics of the interactions between patients and healthcare providers.

Biography

Wafa ALmegewly is a lecturer in community health nursing in the College of Nursing, Princess Nourah bint Abdulrahman University. The focus of much of her research to date has been on quality of life in patients with cancer, culture and patients' experience.

Dinah Gould is a professor of nursing in Cardiff University, School of Healthcare Sciences. She undertakes research to explore health need and innovations in health care using observational and intervention methodologies.

Sally Anstey is a senior lecturer of Adult Nursing in Cardiff University, School of Healthcare Sciences. She is actively involved in teaching, supervising and supporting undergraduate, post-registration, postgraduate and doctoral students. She holds primary responsibility for developing and delivering, across the undergraduate and postgraduate curriculum courses in end-of-life and palliative care, cancer, genetics, qualitative research, ethics and governance. Her research activities include cancer, end-of-life care, mental health and patient voices in education.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Ethics

Ethical approval of the study was obtained from Cardiff University, the School of Healthcare Sciences (HCARE) PGR Research Review and Ethical Screening Committee (RRESC) as well as the assigned hospital in Saudi Arabia. Participants were given verbal and written information and informed consent was obtained.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This work was supported by the Ministry of Higher Education, Saudi Arabia as part of the author s PhD scholarship.