Lived Experiences of Women with Breast Cancer and Their Care Givers

Abstract

This research is ethnographic in nature and provides a “holistic” perspective on the lived experiences of the women with breast cancer and their care givers. This qualitative study made an attempt to explore the answers of some key questions that, what types of the enduring mechanisms are used by the breast cancer sufferers and their care givers to cope with this illness? What are the major obstacles in treatment seeking process? How significant is the role of care givers? The role of caregivers remained the focus of this study with references to the financial and social changes occurring in the life of breast cancer patient, hence the account of inter-subjectivities of patients and caregivers is provided to shed light on the trajectory of illness and its social influences. The trajectory is phasic in nature where diagnosis, chemotherapy, radiations, surgery and medications are chronological phases, each phase have a different kind of expectation from caregiver. Faith and belief of patients is also an integral and highlighted part of this study that provides reflections on praxis. Belief is at play in reactions and responses to the illness; multiple treatment venues including traditional healers and magico-religious practices are the playground for interplay of belief and illness. Moreover, this research provides insights about socio-cultural or socio-psychological significance and of the alternative treatment, like folk and faith healing. What are the common responses of the breast cancer sufferers to the hospital treatment? What type of body image a breast cancer sufferer imagines about herself with the impacts of social, cultural, religious and environmental factors and how the care givers influence on the breaking of negative body image in the mind of breast cancer sufferer about herself? These questions are answered in this study. In addition to this, this study attempted to understand the belief, knowledge, attitude, practices and body image of breast cancer women. It also observed the transformation of roles and identities of breast cancer women in maintaining social relationships. Major attention was given to describe the roles and behavior of the primary, secondary and tertiary care givers (i.e. family members, nursing staff and domestic servants) during the treatment seeking process of the breast cancer women. Hope and struggle are the primary focus when it comes to comprehend the experiential narrative of breast cancer patients and their caregivers, details about health seeking practices and a continuous struggle is reflected in this study. Finally, to collect the folk narratives on the alternative treatments, particularly spiritual treatment, availed by the breast cancer women was also one of the major objectives. This research was multi-locale ethnography, therefore, the hospitals of Lahore, Islamabad and Rawalpindi and the families of the selected patients at their homes to observe the domestic life of the patients and their primary caregivers were frequently visited. Majority of the selected patients or interlocutors were from Attock, Rawalpindi, Lahore, Islamabad and Chakwal. The study used interpretative phenomenological analysis (IPA) and thematic inductive analysis to explore the observed data and narratives to seek deeper insights. Although the body of literature on the social, physical and psychological health of women with breast cancer is increasing, only a few researches have concentrated on the lived experiences of women with breast cancer and their care-networks. Informal and semi-structured interviews and group discussions were conducted with the patients of breast cancer and their care givers. Transcriptions of the interviews were analysed using interpretative phenomenological analysis. Discovered themes bring forth the significance of relationships and resources. The study explored the belief, knowledge, attitude, practices and body image of breast cancer women. The study explored roles and behaviors of the care givers during the treatment seeking the process of the women with breast cancer and its outcomes on treatment seeking the process. This study revealed the obstacles in the way of hope and struggle for treatment among women with breast cancer and their care givers and its outcomes on treatment seeking process. The study collected the folk narratives on the alternative treatments, particularly spiritual treatment, availed by the women with breast cancer. The present study revealed that the increase of a discourse on patients’ care and care-givers is an intriguing area of research in the social sciences. In the previous researches, little attention was given to framing relationships between patients and their care givers. Therefore, this study addresses the gap of ‘seeing’ the experience in ‘holistic’ perspective. In addition, a dynamic relationship of reciprocity was observed during the fieldwork between the care takers and care givers. It identifies the difference between religious and spiritual treatments and documents the prevalent local ritual and spiritual healing methods. The present research establishes that the care givers, particularly family members as primary care givers play an important role in making breast cancer patients strong, talking about stress in family and renegotiating the roles of relationships within the family. Secondary care givers include nursing staff of the hospitals and clinics. Tertiary care givers include domestic servants. The present research also focuses on medical, folk and faith healers, who also have crucial medico-cultural role. This study brings forth the answers to the questions that how interpretations and explanations of sickness and health are perceived, shaped and reviewed in the light of psychological, social and cultural dynamics. The present research revealed that the lack of awareness and late diagnosis are major reasons of bad outcomes of breast cancer. The study provided suggestions in the furtherance of improving outcomes of this illness, and early detection is very critical. Countries with weak health mechanism and limited resources, where most of the women are detected in the late stages of their breast cancer, should put great attention on early detection schemes based on awareness of early manifestation and referral to detection and cure. Shame, shyness, and stigmatization about ‘breast’ in the cultural frame is significant aspect that creates hindrance for promotion of awareness, accessibility to diagnostic and treatment facilities and bringing forth the issue in routine vernacular among families. Using the phenomenological approach, illness experiences of breast cancer women and the roles of their care givers were studied. To understand the roles of care givers, family members as primary carers, nurses as secondary and paid servants as tertiary were classified into three units of observation. The beliefs, knowledge, attitudes and practices were extracted from interactive instances, narratives, and dialogues or verbatim of breast cancer women and their care givers regarding breast cancer. Analysis used the apprehensions and motivations about the body image, spiritual healing, faith in divinity, obstacles and struggle in the treatment seeking process. Folk narratives on the alternative treatments were collected particularly spiritual treatment, availed by the breast cancer women. All the collected interactive instances, narratives, dialogues or verbatim were units of analysis. In the findings of part one, major themes were: beliefs and knowledge about breast cancer, a collective experience, spirituality, concerns of body image, loss of control, and healthcare experiences. Second part deals with the role of care givers within the framework of the treatment of the breast cancer women. Third part deals with the exploration of diverse socio economic statuses of the breast cancer women and their care givers and its upshots on treatment seeking process. 13 out of 27 breast cancer women, and their family members, were greatly impacted by the financial burden due to the expensive treatment. Fourth part deals with the folk narratives of the breast cancer women and their care givers regarding treatments of spiritual, homeopathic and bio-medical. Spiritual, ritual, bio-medical treatments and support of care givers are enduring mechanisms to cope with the illness. Social and economic conditions create obstacles in the way of hope and struggle for treatment. Care givers play key role in whole illness phase. Faith and beliefs of the women and their care givers provide reflections on praxis that regulates the multiple treatment venues including traditional and magico-religious practices. This study also found that social, cultural, religious and environmental factors put negative effects on woman with breast cancer to imagine her body image a negatively. This study calls for attention to study of the exchange relationship between a sufferer and her caregivers. Anthropological observation is implied as an attempt to bring forth a ‘holistic perspective’. Through this research a trajectory of feelings, reflections, reactions and effects associated to breast cancer experiences are comprehended among the sufferers and their care givers. A study is required influencing outer and inner factors which incite negative and positive body image in the minds of breast cancer sufferers. Cross-disciplinary discussions and conversations are possible and necessary to attain effective medicine, humane healing, and ethical science to bring an atmosphere equal for the rich and the poor patients. By observing the ways, this research has explored that how faith, folk and spiritual healings are interrelated and how the non-materials become very real for the people in sense of practicing spiritual healing. Furthermore, several ancient, spiritual and folk healing practices of the people of remote areas of Pakistan have been documented for the future researches in this account. There is need to think of plausible coping mechanisms for dealing with aggression and pessimism among the breast cancer sufferers, for example services of psycho-therapists should be provided to the breast cancer sufferers and their care givers. This research is the passage to many new inquiries that will open up the phenomenological details for better understanding and management of breast cancer patients and their care-network.