Research Article | Open Access

Lived Experiences of Breast Cancer Survivors and Renal Transplant Recipients: A Comparative Phenomenological Study

    Zunera Tariq

    University of the Punjab

    Fatima Kamran

    University of the Punjab



The number of Breast Cancer Survivors (BCS) and Renal Transplant Recipients (RTRs) is growing due to advances in biomedical technology that lead to increase in early diagnosis and treatment. Research on survivorship has focused mainly on treatment aspects of the diseases. The goal of this study was focused on exploring and comparing the lived experiences of BCS and RTRs as both groups had a near death experience and live a closer to normal life post-recovery. The research was conducted using a phenomenological approach, and participants were selected via criterion sampling. In total, 12 women (6 BCS and 6 RTRs) were selected aged 44-63 years. Data were collected via semi-structured interviews and were analyzed using Interpretative Phenomenological Approach (IPA). The analysis gave meaningful insights as reflected by three major themes and eight categories that revolved around Acceptance (Initial Impact of Illness, Fear and Anxiety), Coping Styles (Religious and Spiritual Coping, Gratitude, Social Support and Relationships), and Altered Life Orientation and Future Concerns (Adaptation, Future Concerns about Health and Well-being, Post-traumatic Growth). Findings highlight the post-recovery concerns of BCS and RTRs and implicate the role of health psychologists in devising appropriate management plans to improve their quality of life after recovery.

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Chronic illnesses have significantly increased today because of worldwide demographic changes that occurred in the 20th century, including aging and longer life expectancies. Specifically, chronic illnesses are now the primary cause of health-related problems. A process of long duration and generally slow progression that requires ongoing management over years or decades is what is meant to be understood when one refers to a chronic illness. Numerous studies demonstrate that living with one or more chronic illnesses affects a person's emotional and social well-being in addition to their physical health (Portillo et al., 2012). To treat the full person defined as a bio-psychosocial and spiritual entity healthcare providers must consider this and adopt a holistic approach (Ambrosio et al., 2015; Portillo et al., 2012).
Globally as well as in Pakistan, cancer and organ failure are two of the major chronic illnesses which if not treated on time may lead the individuals towards death (Ain et al., 2022; Ali et al., 2020). Tobacco-related malignancies and breast cancer are the most common cancers in Pakistan (Badar & Mahmood, 2021) whereas, among organ failures, chronic kidney disease or kidney failure is progressively increasing in south Asian countries like Pakistan (Ullah et al., 2015). However, the diagnostic advancement and latest treatment modalities have resulted in successful treatment of breast cancer and renal failure, resulting in increased lifespan of survivors, and making it possible for them to live a closer to normal life (Sajjad et al., 2021; Sheldon, 2021).
Survivorship comes with its own challenges and Williams and Jeanetta (2016) in their study explored the lived experiences of the breast cancer survivors. The survivors expressed their dissatisfaction with their physical changes and diagnoses. Their friends and family's support enabled them to get through their treatment. But after the treatment phase ended, they felt abandoned and didn't know what it meant to be a survivor. Rajagopal et al. (2019)  highlighted that the key areas of lived experiences of BCS revolve around emotional burden and their early response towards their diagnosis. During their therapy, they faced issues related to decision-making, social distress, symptoms beyond physical changes, fertility concerns, and their role as moms. Women were able to manage and adapt to these obstacles with the help of their families and medical professionals. Making decisions about their lives following treatment led to a stronger sense of empowerment for women. For single women, making decisions in life like entering a new relationship was difficult.
The challenges and emotional support needs are also widely experienced by RTRs, as was highlighted by Been‐Dahmen et al. (2018). Following kidney transplantation, recipients face a range of difficulties managing medical, psychological, and social responsibilities. These included developing into knowledgeable patients, modifying daily activities, adhering to a medical regimen, building relationships with nurses, coping with social fallout, managing feelings regarding the donor and the transplant, and enhancing self-perception. To overcome these obstacles, RTRs requested positive reinforcement in the form of encouraging remarks, disease-specific education and knowledge, the opportunity to discuss medical, emotional, and social issues with healthcare professionals, and the opportunity to share personal experiences with other patients. It was believed that a one-size-fits-all education would not adequately address their demands.
Research on survivorship has focused majorly on the treatment aspects of the diseases revolving around treatment modalities and recovery rate. Post-recovery psychological impacts of such life-threatening chronic condition and the lived experiences of the survivors are not much of a focus of indigenous researchers and to fill the gap in literature and to explore the struggles of BCS and RTRs, this research was carried out. Literature has highlighted different concerns and coping strategies of BCS and RTRs. To get a deeper understanding of the lived experiences of these two cohorts and how their experiences were similar or different in nature, this phenomenological study was carried out. Therefore, the following research questions are phrased that how do breast cancer survivors and renal transplant recipients perceive their experiences of going through a life-threatening condition? In addition, how do both groups differ in their perceptions and experiences post recovery?

Method

Participants

The participants for qualitative interviews were selected by using the Criterion sampling strategy. Criterion sampling involves the identification of a particular criterion of importance, articulation of this criterion, and systematic review and study of cases that meet the criterion (Elmusharaf, 2016). Adult female BCSs and RTRs currently on a schedule of regular follow-up schedule were approached at public sector Oncology and Renal units of hospitals in Lahore. Initially 20 women were approached for the interviews, out of which, 12 (6 breast cancer survivors and 6 renal transplant recipients) finally completed the interviews. Most of the participants were aged between 40 to 60 years, 9 being married and 3 were widowed. The minimum education acquired by the participants was intermediate with 3 holding professional degrees and working as either a doctor, school teacher or an entrepreneur. All the participants reported their recovery of 2 to 5 years.

Information Tools for Background Data

Demographic Information Sheet

The demographic data included personal, familial and financial and social information about the participants (e.g. age, years of formal education, marital status, work status, Family income, number of dependents etc.).

Clinical Information Sheet  

Medical information about BCS included; approximate onset as well as duration of the breast cancer, time since complete recovery, type and duration of treatment and surgery, family history of the cancer and renal conditions, comorbidities, and current medications.

Semi-Structured Interview Protocol

A semi-structured interview protocol was devised on the basis of the research aim and psychological consequences of living with the said life altering conditions. Indicators for devising the interview questions were taken from the existing literature (Credle, 2020; Kamran & Ogden, 2016) and it was piloted on four participants (2 BCS & 2 RTRs) before finalizing and administering it on the recruited participants. Some of the questions of the interview protocol were:
“In light of your condition, what do you feel about your life?”
“How do you look at or perceive your life before, during and after the condition?”
“What were your experiences after suffering from this condition?”
The interview protocol was reviewed by two of the faculty members of the Institute of Applied Psychology, University of the Punjab. The selection of the faculty members was done on the basis of their expertise in the relevant field. They found the questions to be in line with the study’s aim and will help in exploring the lived experiences and perceptions of BCS and RTRs.

 Ethical Considerations

The ethical research codes by American Psychological Association set for conducting research involving humans were followed.  The issues including the right to withdraw from the study, obtaining consent for the audio recording of the interview, and the confidentiality of the participants' identities were taken into account. All participants received the required information about the purpose, procedure, and ethical rights, and all of them completed an informed consent.

Procedure

After taking the institutional permissions and consent from the participants, the interviews were carried out. Interviews were transcribed carefully and were checked again against the recordings to ensure none of the details is missing. In the first stage, transcribed data was read and re-read to note down the codes. In the second stage, coding of the emerging components of the data was done and relevant codes were counted and converted into subordinate themes that were distinctive yet internally consistent. These subordinate themes were then collated into superordinate themes. In the last stage, the superordinate themes were further categorized into master superordinate themes.

Findings

To analyze data extracted through the interviews, Interpretative Phenomenological Analysis (IPA) was utilized in the current study. IPA helps to comprehend how the participants understand themselves and the world (Giorgi, 2011) and the way they interpret their individual experiences. Put another way, it provides the researcher's interpretation of the participant replies in addition to analyzing them. The analysis was divided into three stages, which are breakdown, exploration, and integration of text (Ishaq & Rafique, 2021). This brought researcher closer to the subjective explanations of the struggles, perceptions, and experiences of the participants post-recovery.
This study outlines the understanding of the perceptions and lived experiences of the breast cancer survivors as well as renal transplant recipients as reflected by their self-reports of altered lifestyles post recovery using IPA. In the following section, results are discussed in terms of the superordinate themes that emerged. The following Master Table depicts the superordinate themes, superordinate and subordinate themes along with the supporting verbatim.

Table 1
Emerged Themes Regarding the Perceptions BCS RTRs