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

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.

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
                                                  

The findings highlight the importance of positive coping styles (religious and spiritual coping, gratitude and social support) that not only aid BCS and RTRs in the acceptance of their condition, but also helped them deal with the initial fearsome impact of the diagnosis but eventually alter their entire outlook towards life and making it more optimistic and directed towards the health and well-being of self and others while promoting the self-growth post-trauma. Despite living with different chronic conditions, similar themes were emerged for both BCS and RTRs with reference to their perceptions and experiences of their condition, indicating that though their journey might be different, but the trauma made both cohorts equally vulnerable to psychological distress.

Table 2
Description of the Emerged Subordinate and Superordinate Themes

Discussion

Living with a life-threatening condition significantly impacts not only the individuals but their families and overall quality of life. The experiences and perceptions of BCS and RTRs provided an in-depth understanding of how they went through the experience of
life-threatening condition and the emerged as survivors. The themes for both groups shared some common themes including acceptance, adaptive coping styles, altered life orientation and future concerns after facing a chronic life condition. Both BCS and RTRs reported acceptance of the condition and the initial impact of the condition on their emotional, physical and financial aspects of life.  BCS appeared to experience more fear, anxiety and uncertainty as compared to RTRs. However, both groups went through an overwhelming initial impact and apprehensions of the diagnosis. Both BCS and RTRs reported re-conceptualizing and accepted their condition and its consequences to cope more adaptively using religious and spiritual coping, gratitude and social support. They shared similar future concerns about living a healthy and normal life with their loved ones. This positive approach indicated a trend of post-traumatic growth in both BCS and RTRs.
Diagnosis of a life-threatening illness is like a death sentence for the individuals with little hope of recovering. Both groups of BCS and RTRs experienced an emotional upheaval and distress during the difficult time of treatment that made them lose interest in life. Looming progression of the disease and unpredictability of life induces fear in the patients. They are concerned about the adverse effects of chemotherapy as well as the possibility that the disease will spread to other places of the body. A woman's sense of femininity and body image are seriously threatened by the combination of the consequences of a mastectomy and the side effects of chemotherapy, which include hair loss, diminished libido, and early menopause
(Al-Azri et al., 2014). Similarly, RTRs also experienced adverse side effects of immunosuppressant medications, making them experience similar psychological distress as those of BCS.
Both RTRs and BCS reported that they desperately sought second, and third opinion, in search of hope and due to lack of trust on the medical system in Pakistan. Concerns about the medical system and availability of treatment make cancer patients seek more information about their condition and are often pressured by family members and friends to travel abroad. Like other Gulf nations, some patients went abroad (to Thailand, India, or Iran, for example) to have their diagnoses confirmed, while others went in search of alternative therapies (Al-Azri et al., 2014). One may go overseas in the hopes of finding a cancer cure, or one may look for alternative forms of treatment. patients may choose to travel to protect their privacy from the cancer stigma because it allows them to spend time away from their familiar faces (Inhorn & Shrivastav, 2010). However, due to issues of affordability and high cost of treatment abroad, financial constraints seem to be a prominent concern of BCS and RTRs in Pakistan.
To deal with the initial overwhelming impact of the diagnosis of the condition, to manage the fears and anxiety it brought along, and for the acceptance of the persisting health condition, coping is essential and most of the participants in both groups appear to have adaptive coping styles and realistically explored their strengths to rely upon. On long term basis. Religious and Spiritual coping is found to be the most significant coping mechanism for both BCS and RTR to manage the stress and anxiety of their condition. By strengthening their faith in Allah and destiny, participants reported an improved connection with the God Almighty after their diagnosis. The belief that it’s the testing time from Allah and the ordeal will purify their sins and will be rewarded in life after death aid in calming down their anxiety and they were in a better position to deal with the emotional distress.
According to Freh and Chung (2021), some people find that a strong faith helps them deal with the traumatic life events they've experienced. Having confidence in a spiritual being was crucial for many, including those who did not identify as religious, to help them deal with the aftermath of the devastating incident. Furthermore, they contend that religion was more than just an abstract concept. Rather, faith requires taking deliberate action or engaging in deliberate behavior. Positive religious coping may serve as a buffer and foster beliefs that God is constructively working with the patient, according to Sharif et al. (2018). Additionally, elevated self-efficacy, feelings of positive reinforcement, and a sense of inner security may be indicators of adaptive religious coping (Krok et al., 2019). An increasing amount of research demonstrates the significance of evaluating patients' spiritual and religious coping strategies for their overall health and quality of life when dealing with chronic illnesses (Crane, 2009; Peteet & Balboni, 2013). Research has demonstrated that positive religious coping can enhance an individual's capacity to manage stressors, enhance psychological well-being and tranquility, and facilitate adaptability in those facing chronic illnesses like cancer and end-stage renal disease (Sharif et al., 2018).
Gratitude, or the state of being thankful or appreciative of things in life, has been extensively researched in the literature on end-stage renal disease and other life-threatening conditions. Hill et al. (2013), found that thankfulness is associated with improved physical health outcomes and has the potential to change an individual's physical health over time, partly because of improved psychological health that correlates with gratitude. Adorno and Wallace (2017) discovered that appreciation was the most important thing mentioned by cancer survivors. The fact that both the diagnosis and the treatment were less unpleasant than anticipated made the cancer survivors very grateful (Adorno et al., 2017). Similarly, RTRs have also demonstrated gratitude. Anand and Kumar (2014) discovered that patients with heart, lung, and liver transplants expressed gratitude mostly to the organ donor, the care staff, and their own lives.
Kamran et al. (2016) questioned RTRs about the transitions in their journey from illness to wellness and how they coped with the odds and evens then finally reported the phenomenon of post traumatic growth. One of the five major themes that reflected the opinions of the participants was gratitude. Other themes included optimism, self-identity, emotional problems and morbidity, fears and anxieties relating to transplants, and future worries. The individuals expressed gratitude to the healthcare personnel involved, their families, the donors, and themselves for their given kidneys. Having appreciation can significantly impact a person's experience with a chronic illness, at least in terms of managing the stressors that come with having the condition.
Availability and quality of social support and relationships has been found to be a major determinant of coping with their life altering physical conditions. In the present study, it was found that support from the immediate family and friends helped the participants in both groups deal with the physical pain and psychological distress of the chronic condition in a more effective way. Apart from the self, the most effected individuals following the diagnosis of a chronic condition are the immediate family members of the patients and they also experience several psychological distresses like depression, anxiety, and with spouses the most reported issues happen to be sexual problems, communication avoidance, separation or termination of the relationship (Al-Azri et al., 2014).
On the contrary, both BCS and RTRs in this study believed that the ties with their families and life partners were strengthened after the diagnosis of breast cancer and ESRD. The participants reported stronger bonds with their immediate family members and improved bonding with their spouses. Women with chronic diseases may have even closer relationships with their husbands because of their diagnosis that creates a fear of losing the life partner. Social support, especially at the workplace is found to be highly critical for the participants. Participants in both groups reported contrasting experiences of their workplace. Some reported unwavering support from their colleagues that facilitated their resumption and coping with work life while others faced either indifference or a negative attitude of their colleagues and superiors. This appeared to cause the consequent emotional distress accompanied by a feeling that things aren’t the same and they are less socially desirable.
Some societies have widespread negative views, stereotypes, and discrimination towards individuals living with chronic conditions. They are called victims who are unable to contribute to society, and some people even avoid working with them (Cho et al., 2013).  They have reported several difficulties, including losing their health insurance, being unemployed, having trouble going back to work following treatment, and finding it difficult to build rapport with coworkers (Alawneh, 2021; Fu & Rosedale, 2009; Scott et al., 2011)
In the present study, both BCS and RTRs appeared to have Adaptive coping styles resulting in changing their life orientation positively, irrespective of their future concerns and apprehensions. Sagi et al. (2021) emphasized that optimism, proactive coping, and social support are among the factors that contribute to more resilience and adaptability. Credle (2020) discovered in their review that hope and resilience can both serve as buffers against negative mental health outcomes, particularly when it comes to ailments like chronic sickness. Tian et al. (2016) observed that psychological distress and resilience in kidney transplant recipients were negatively correlated and that resilience may potentially function as a mediator between depression and social support.
Although both groups of participants reported that the adaptation and the ability to bounce back helped them rise above the traumatic life experience of the chronic condition. However, RTRs perceived their life post-transplant more optimistically as compared to BCS who reported increased distress and anxiety about recurrence of cancer. Hoelterhoff and Chung (2017) argued that one strategy they used to deal with the pain they were feeling after the terrible incident was to remind themselves that a better future lies ahead of them. This may be the cause of the fact that, in the current study, most individuals spoke candidly about traumatic situations, and when they did, their language tended to be optimistic that is, to express hope for the future rather than the misery that came with the experience. Most participants in both groups shared the common theme of more positive future planning, prioritizing health over other aspects of life.
It is plausible to suggest that the motifs suggest that these participants underwent post-traumatic growth after their unpleasant experience with the chronic disease. They appear to believe that they can overcome obstacles, accomplish their objectives, and deal with stressful situations or their aftermath, including death preoccupation, death despair, and death anxiety. They support self-directed goal behavior and mastery over traumatic life experiences. There is very little evidence on the exact dynamics of posttraumatic growth in individuals living with life threatening conditions. Although post traumatic growth is a well-established phenomenon in both BCS and RTRs (Sheerazi & Kamran, 2020 ), there is further needed to explore the specific determinant of this construct. In their study, Kamran and Ogden (2016) discovered that the beneficiaries saw a positive change in their personalities. Their accounts of their transplant experiences demonstrate the close connection between posttraumatic growth and both mental and physical health. Participants talked about how their traumatic transplant experiences helped them grow psychologically and how they were able to adopt a more positive outlook on life and advance personally. Unlike the seemingly comparable ideas of resilience, feeling of coherence, optimism, and toughness, posttraumatic growth was discovered to involve a quality of transformation or a qualitative change in functioning. Scholars have also debated the nature of PTG, proposing that it is a dynamic process rather than merely a static result and that it interacts with both life satisfaction and the formulation of life objectives (Sheerazi & Kamran, 2020).
It seems that post-traumatic growth is a common phenomenon that promotes health. Considering this, in addition to acknowledging the improvements in psychological health and quality of life following breast cancer and transplantation, families and healthcare teams working with patients undergoing these chronic conditions must concentrate on interventions that support BCS and RTRs in maintaining a positive life orientation, an optimistic outlook, and positive health beliefs, all of which have the potential to alter health outcomes. If positive attitudes, optimistic life orientations and health promoting beliefs are not encouraged, it can adversely affect not only the physical health but overall quality of life of vulnerable individuals living with life threatening conditions.

Limitations and Future Recommendations

Since women made up the sample for both cohorts, it could be explored how men would report their perceptions of living with these conditions, specially in a sociocultural context. A more diverse sociodemographic group of participants including unmarried young adults can provide more meaningful insights into the sociocultural dynamics.        

Implications

The lived experiences of cancer survivors and renal transplant recipients do consolidate evidence of effective treatment outcomes and improved psychological well-being in these two groups. Health care professionals can gain useful information to identify psychosocial barriers and facilitating factors that play a crucial role in not only affecting treatment outcomes and adherence but ensuring a more improved quality of life in these groups.

Conclusion

Psychosocial environment and individual’s life orientation determine how they will accept, adapt, and cope with after experiencing life threatening condition such as breast cancer and kidney transplant. The coping mechanisms mitigated the initially terrifying and anxiety-inducing effects of receiving a life-threatening chronic illness diagnosis. Both BCS and RTRs were able to manage their distress brought on by illness because of their exploration of their inner strengths, the social support that was accessible, and their positive life orientation as a consequence of religiosity and spiritual strength that contributed to their post-traumatic growth.

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Received 3 February 2023
Revision received 5 March 2024