Religion and Spirituality: their Role in the Psychosocial Adjustment to Breast Cancer and Subsequent Symptom Management of Adjuvant Endocrine Therapy.

Abstract

Purpose

Distress from being diagnosed with breast cancer can impact a woman’s decision to continue taking adjuvant endocrine therapy (AET). The purpose of this study is to explore how religion and/or spirituality influence women’s psychosocial adjustment to breast cancer and subsequent symptom management among women on active AET.

Methods

Semi-structured in-depth interviews were conducted with breast cancer survivors (n=19) from California and Texas. Interview questions prompted discussion about AET and how women adjusted to a breast cancer diagnosis and treatment with AET. Interview transcripts were analyzed with a deductive grounded theory approach, and an inductive constant comparison approach was used to identify the sources of religion and spirituality.

Results

Religion supported women in their psychosocial adjustment to breast cancer by offering them a sense of purpose and meaning in life. It helped women make sense of their AET treatment as they persisted with it despite experiencing adverse side-effects. Spirituality played a prominent role in women’s mental and physical wellbeing by facilitating positive and calm attitudes, which lessened women’s fear during their cancer diagnosis and treatment.

Conclusion

We identified that religion and/or spirituality helps women with their adjustment to breast cancer and influences their continued use and management of side-effects from AET.

Introduction

In the United States, nearly two-thirds of breast cancer cases are diagnosed with hormone receptor-positive breast cancer and are indicated to take adjuvant endocrine therapy (AET) for at least 5 years. [1–3] Treatment with AET, depending on menopausal status, reduces the risk of cancer recurrence by up to 50 percent. [4] However, despite these benefits, adherence to AET remains suboptimal. [5–7] Non-adherence to AET has been associated with a reduced survival benefit for women who discontinue treatment before the 5-year recommended duration. [8–10] The American Society of Clinical Oncology published guidelines that recommended AET be taken for up to 10 years for high risk women instead of the standard treatment of five years. [11] To date, research has identified out-of-pocket costs, [12] side-effects, [13], co-morbidities, [8, 14] and type of breast surgery as predictors for AET non-adherence. [13]However, few studies have explored the influence of personal factors--such as religion and spirituality--on AET adherence, despite previous research illustrating their importance in women’s psychosocial adjustment to breast cancer and it’s treatment. [15]

Many women experience some level of psychosocial distress during the course of their cancer journey, which can have a lasting impact on their psychosocial adjustment to cancer, quality of life, and ability to make appropriate treatment decisions and adhere to treatment. [16] Psychosocial adjustment is broadly defined as the psychosocial accommodation of a person to a life-altering event, [17] with psychosocial referring to mental, social, and spiritual effects of disease, such as cancer. [18] Women’s resilience and coping with cancer are critical elements of psychosocial adjustment, as they are mechanisms of positive adaptation, which change over time and protect patients from psychosocial distress. [19] The cancer continuum represents a period of potentially distressing events, where patients have to adapt during their treatment and face challenges with the adjustment to their new lifestyles. [19] Understanding factors that influence women’s resilience and coping mechanisms, and therefore psychosocial adjustment, is particularly relevant in this context given the benefits of AET.

Religion and spirituality may play a role in women’s psychosocial adjustment to a breast cancer diagnosis, as these constructs are associated with better mental and physical health among cancer patients, which can later influence patients’ adherence and management of AET. [20, 21] Religion is multidimensional and focuses on a person’s public behavior, private behavior, beliefs and coping; these constructs can have both positive and negative impacts on an individual’s health. [22] Positive religious coping [23] is by far the most common construct and may influence long-term adjustment to illness by providing emotional comfort, hope, and sense of meaning and purpose. [24] Spirituality [25] is seen as the subjective and emotional side of religious experience that can include “an inner resource or an inner aspect of a person” that is used to cope with major stressors such as breast cancer. [24, 26] Religion and spirituality may be interrelated constructs for some individuals, as spirituality can be perceived as “a search for the sacred”. This is a process that motivates individuals to find, keep hold of, or transform what they perceive as sacred in their lives, which may take place in larger religious environments. In the context of health, the “the sacred” refers to unique objects or events that individuals harness as coping strategies and perceive as separate from the ordinary and deserving of recognition. [27–29] A study by Myto and Knight suggests religion and spirituality contribute to a person’s psychosocial adjustment to cancer, treatments, and quality of life after diagnosis, [30] which is important for patients as treatment advances extend the length of survival. [31] Other research has found patients tend to increase their focus on religion and connection to God as cancer progresses, [21] which is also related to various aspects of symptom management. Studies have shown spiritualty helps patients have a positive attitude for coping with a diagnosis, [32] increased hope for treatment outcomes, [33] and higher life satisfaction. [34] Together, these constructs may positively influence women’s psychosocial adjustment during the cancer continuum, which may have positive implications on women’s ability to adhere to and manage AET.

Religion and spirituality are recognized as important facilitators of women’s adjustment to cancer and its treatment. Although research has identified various predictors of AET adherence, a gap exists in our understanding of how personal factors, particularly religion and spirituality, may influence women’s psychosocial adjustment to breast cancer and management of AET. It is therefore essential to explore beyond these predictors to have a more comprehensive understanding of women’s experiences. Therefore, the aim of this study is to explore how religion and spirituality influence women’s psychosocial adjustment to breast cancer and subsequent symptom management among women on active AET treatment.

Methods

Study Design

We conducted semi-structured in-depth interviews with breast cancer survivors to gain a better understanding of their experiences while taking AET. This study design has been published elsewhere in greater detail. [7, 35] The University of Washington’s Institutional Review Board approved this study.

Participant Recruitment

Eligible women were identified as breast cancer patients who had filled at least one prescription for tamoxifen, exemestane, letrozole, or anastrozole (various types of AET regimens) in the last 12 months. We used convenience sampling to recruit women from survivorship groups using informational flyers via list serves and placed in oncologist’s office. Women were recruited in Los Angeles, California, and Houston, Texas, from September 2014 to April 2015.

Study procedure

Women interested in the study contacted research staff and were screened via telephone to ensure they satisfied the study criteria. Eligible women were interview in study rooms at public libraries and at the participant’s workplace. We collected signed informed consent forms from each participant. Interviews lasted 35–60 minutes and women were given a $25 gift card at the end of their interview. All interviews were conducted in English by AJF until thematic saturation was reached.

Interview topics discussed the history of breast cancer diagnosis, treatment, experiences and management of AET. The full in-depth interview guide and demographic questionnaire is published elsewhere. [7] While we did not explicitly ask about religion/spirituality, rather in a similar method as our other studies, the themes of religion and spirituality emerged organically as an important theme. [35]

Analysis

A total of 19 interviews were conducted and recorded using a digital audio device and later professionally transcribed. Transcripts were uploaded into Dedoose Qualitative Data Analysis Software, version 4.12. The first author developed an initial list of codes using data collection memos, overall study goals, and literature on religion and spirituality. To explore the role of religion/spirituality, we used a deductive approach to organize the description of religion, spirituality, psychosocial adjustment, and symptom management into separate themes that emerged from the interviews. We then used an inductive, constant comparison approach to identify additional concepts or themes related to treatment, side-effects, adherence, and coping strategies. The first two transcripts were coded by the first and second author to check for reliability and consistency, and then the remaining transcripts were coded by the first author. In this study, we explored emergent themes concentrated on how religion and spirituality helped women on active AET with (1) psychosocial adjustment and (2) symptom management.

Results

Participant demographics

Table 1 provides participant characteristics. Most women were white, under the age of 55, and interviewed in Los Angeles, California. About half of the women were on active Aromatase Inhibitor and the other half were on active Tamoxifen. Most women were married and had a bachelor’s degree.

Table 1.

Summary of women’s characteristics (n=19).

Characteristics	N (%)
Age
<45	5 (26.3)
45–54	5 (26.3)
55–65	5 (26.3)
>65	4 (21.1)
Race/Ethnicity
White	10 (52.6)
African American	6 (31.6)
Asian	2 (10.5)
Hispanic	1 (5.3)
Adjuvant Endocrine
Therapy	8 (42.1)
Aromatase Inhibitor	11 (57.9)
Tamoxifen
Marital Status
Single	4 (21.1)
Married	10 (52.6)
Divorced	4 (21.1)
Widowed	1 (5.3)
Geographic Region
Houston, TX	6 (31.6)
Los Angeles, CA	13 (68.4)
Educational Attainment
High school or lower	1 (5.3)
Some college, technical	5 (26.3)
school	9 (47.4)
Bachelor’s degree	3 (15.8)
Master’s degree	1 (5.3)
Doctorate degree

Major Findings

This study identified two major themes common to all women in how religion and spirituality helped them cope with their experience of breast cancer, including (1) the psychosocial adjustment to breast cancer, and (2) subsequent continued use and management of side-effects from AET. In our research, we found religion and spirituality were often interrelated for women, although the most important unifying source of support was religion overall. These women experienced religion and spirituality in a number of ways, but mostly as a source of comfort and healing through their breast cancer diagnosis and treatment.

Psychosocial adjustment to breast cancer

Religion

For many women, religion offered a sense of purpose and a meaning in life and helped them make sense of their cancer diagnosis. One woman described her strong faith in her path in life and rooted her confidence in God and His plan that her treatment would work.

“I’m a very faithful person, so I just pray my way through it. I just have to have faith. And I believe God left me here, you know, for a reason, because there are other ladies that I know who didn’t survive, you know, friends and I just believe He has a plan for me.”

– Participant 003

For several women, prayer was a way of finding comfort and confidence in God to care and protect them during the course of their breast cancer. Religion was also perceived as a cohesive force for women and their families, as one woman described her family being Catholic, and despite the distance between her family and the “hysteria” of her diagnosis, they prayed for her and that allowed them to collectively offer support during treatment. Some women experienced religion through others, such as volunteers at breast cancer organizations. One woman described the volunteers’ religious beliefs as “really supportive” and perceived their prayers as “positive energy” that empowered her adjustment to breast cancer.

Religious prayers from healthcare providers were a noteworthy source of support. For women who were not deeply religious, observing healthcare workers’ religious practice of praying for them provided a sense of hope and emotional comfort. It offered women the encouragement needed to adjust to and manage their new course of treatment and the psychosocial changes that came with it. For one woman, religion and spirituality in healthcare providers was interconnected, as she described how her medical provider led a prayer for her, and emphasized that their “spirituality” helped her feel more positive and relaxed about her treatment.

“They were really supportive and they pray a lot…I’m not religious myself… but they’re really, and that was nice…I could see people were praying…sending at least this positive energy… they have that spirituality.”

– Participant 016

The power of prayer proved to be very influential for many women in various ways, with one woman sharing that she would routinely pray and thank God as she tried out different treatments to help her manage the side-effects of AET, despite not being deeply religious.

“Thank you, God, so much. I was praying and praying. I believe in the power of prayer. I’m not deeply religious, but I believe in the power of praying…I think that helps people a lot.”

– Participant 014

Spirituality

Spirituality played an important role in women’s mental and physical wellbeing. Women described that a “positive mindset” or “being calm” could help them alleviate their distress about cancer recurrence. Women believed that a positive outlook would not overcome their cancer, but would help them adjust to the changes they were experiencing and the fear of their cancer diagnosis. For one participant, a positive outlook not only helped her uplift her mood, but also helped her believe her cancer was not going to come back, as she described:

“I’m in this position, just the mental and spiritual side of it… I think just that having a positive outlook can combat it… not alone, but can it help? I think absolutely… I think that a positive mindset or being calm could help [the cancer] not come back.”

– Participant 018

Exercise was a coping strategy for some women as they tried to comprehend the meaning of their cancer from a more positive standpoint. One woman shared how qi gong exercise helped her recognize that cancer was not a disease or illness but rather a source of energy that she began to embrace as “good energy”. She described qi gong as an outlet that allowed her to transform her disease and energy patterns in her body, which in turn helped her adapt physically to the changes her body was experiencing.

“It’s sort of like you would take that negative energy and envelope it in a positive energy, you would sort of change the energy patterns in your body…I’ve physically noticed changes in my body with qigong. I have physically noticed things, and I think, like anything, you got to see it or feel it… to believe it”.

– Participant 004

Another woman shared her experience with the many treatments she pursued to lower her estrogen levels and how spiritual exercises such as meditation and yoga helped her during her treatments. She also noted that none of her medical doctors recommended exercise, which is where she felt they were “failing” and contended that exercise should go hand-in-hand with AET to help overcome its mental and physical side-effects.

“I meditate. I think meditation is very important. Just five minutes in the morning... Makes a huge difference in how you greet the day… it’s meditative… It’s wonderful. And they’re finding out it’s a very positive thing for breast cancer patients. I think that and the hormone therapy are incredible ways to fight it.”

– Participant 009

Symptom management of adjuvant endocrine therapy

Religion

Religion also offered a source of support for women who felt alone in their treatment. One woman described her mother was deceased and she had no siblings, so she looked to God who she felt she can trust to support and protect her. Another woman described religion as her “rock”, something she could depend on during adverse periods of her treatment, and described “praying” her way through cancer.

“I just believe He has a plan for me. So, for me, my faith is my rock. That’s my center, what helps me.”

– Participant 003

Other women turned to religion as a token of appreciation, describing how they “thanked God” for their “amazing doctors and nurses” who offered support every step of the way during treatment. Involvement with the church offered emotional support for patients during treatment; one woman described how church activities and her bible study fellowship helped her control her thoughts on cancer as well as the adverse side-effects of AET.

“What I do is Bible study fellowship, study my lessons, and then I’m very active in my church. I teach Sunday school and a mission, that’s all, here again, I’m in God’s Word.”

– Participant 006

Faith was also embedded in women’s doctors, especially for women who had no prior experience with cancer in their families. Women described this faith in their doctors as the reason why they initiated AET and continued their course of treatment. This faith was rooted in their belief in God. One woman described her strong faith in doctors and God who treated her and supported her every step of the way:

“I was the first person in my family to get cancer… My mom was deceased. I had no siblings. So my confidence, really, was in God and in the doctor.”

– Participant 005

Spirituality

Women described the severe side-effects of AET and how they would affect their daily lives both mentally and physically. For some, exercise offered a way to cope with these side-effects, which were described as a “big cloud of heaviness”. It was also a path to reconnect with inner aspects of themselves. For instance, one woman shared how she harnessed exercise as a coping strategy, and found it helped her transform how she perceived the severity and impact of AET-related side-effects on her life.

“When I first was on Arimidex, I swear to God, I felt like I was a hundred years old. I could barely get out of bed…I really did feel that way. I couldn’t, it’s like, I can’t get out…[I felt] I can’t do this. But if you force yourself to move and exercise, those side effects go away… fatigue is a big deal. It can be overwhelming.”

– Participant 014

This woman also described the physical benefits of exercising, and how it allowed her to breath, something she perceived as very meditative while she adjusted to her treatment and the side-effects. She explained that exercise helped her side-effects go away and improved her mental health.

“If you can go exercising on these drugs, you’ll feel so much better. Everything changes. You’re not like a hundred years old when you wake up in the morning”

– Participant 014

Discussion

This is one of the first studies, to our knowledge, that explores how religion and spirituality may be harnessed as coping strategies for women facing a breast cancer diagnosis and persisting on active AET treatment. In the context of breast cancer, treatment with AET may become a spiritual encounter and an emotional experience for cancer survivors, as they cope and adjust to the adverse side-effects, a primary reason for AET non-adherence. [7, 13] In this qualitative study, we found that religion and spirituality influence women’s psychosocial adjustment to breast cancer and consequential symptom management of AET.

In our study, religion supported women through their psychosocial adjustment to cancer by offering them a sense of purpose and meaning in life, which helped women make sense of their diagnosis. This resonates with other research that has found a strong relationship between patients’ religious beliefs/practices and their ability to cope with cancer. For example, Weaver and colleagues found that religion offers a suffering person a path for finding perspective and meaning. [31]

Religion was also a unifying power for women and their families as they faced the uncertainty of cancer. For some women, religious praying was a noteworthy and empowering source of support, even for women who were not deeply religious or women who did not pray themselves but observed others’ leading a prayer. This is consistent with studies that found religion influences patients’ ability to cope with illness, [36] and how the practice of praying may be an effective coping strategy for some patients. [37, 38]

Spirituality also helped women in the continuum of their psychosocial adjustment. It played a meaningful role in women’s mental wellbeing, as it helped facilitate a positive and calm attitude, which eased women’s fear of cancer and recurrence. Women also reconnected with their spirituality through exercise, which was an effective coping strategy for navigating and understanding their diagnosis from a more positive standpoint. This illustrates how spirituality may be an important dimension for cancer patients, whether religious or non-religious, as it helps them emanate positive feelings and attitudes towards their health and quality of life. This is particularly relevant, as poor coping can have adverse effects on later health outcomes, and has been associated with lengthening hospital stays and increasing mortality. [39] One study found religious and/or spiritual beliefs strongly influence medical decisions among those with advanced cancer. [40] Furthermore, they found spiritually can help facilitate how cancer patients perceive their illness, which can in turn influence their general health and wellness. For instance, one study found an impact of spirituality on general health perceptions which was fully mediated through mental health. [41]

Religion also played a prominent role in women’s symptom management and continued use of AET, despite the unfavorable side-effects they experienced. Religion was a source of support for women, as they described their strong faith in their religion and how they could depend on it during adverse events related to their treatment. For some women, connecting with religion was a way to express their appreciation for their doctors and the treatment that is available to them. Religion and faith were also closely connected; some women anchored their faith in medical providers, as sourced from their religious faith in God, and explained this was one of the reasons why they initiated AET and adhered to their course of treatment. These findings are very complimentary to research that shows women’s trust in their medical providers can either facilitate or hinder AET persistence. [15] Similarly to psychosocial adjustment, exercise facilitated a path for women to reconnect with their spirituality. It also improved their mental and physical wellbeing, which helped women overcome side-effects that would dampen how they felt emotionally and physically. This is consistent with a study by Yunfeng and colleagues, which found prostate cancer patients, that experience adverse side-effects from androgen deprivation therapy, benefitted from exercise which helped relieve side-effects and improve therapy-caused fatigue. [42] This demonstrates how exercise may be used to help mitigate the side-effects of AET and improve women’s quality of life.

Several studies of cancer patients have used The Transactional Model of Stress and Coping to frame how religion or spirituality are related to cancer survivors’ psychosocial adjustment to cancer. [43, 44] Developed by Lazarus and Folkman, the model distinguishes between emotion-focused coping (i.e. regulating the emotional response to stress) and problem-focused coping (i.e. manages or alters the problems causing stress). [45] Given this theoretical basis, in our study religion and/or spirituality among breast cancer survivors was a form of emotion-focused coping, as women trusted religion and/or spirituality to better understand and make sense of their breast cancer diagnosis and experiences with AET. Additionally, women turned to spirituality to help them maintain a positive attitude that lessened their fear, helping them manage their AET treatment and side-effects, a form of problem-focused coping.

Currently, most standardized symptom management strategies include telephone support lines, peer support groups, evidence-based websites and online support groups; however, these strategies sometimes fail to resonate with women facing challenges specifically related to AET. [15] Some research is exploring the potential of “benefit finding” which is a term that describes a strategy to help patients find some positive outlook or purpose on their diagnosis and treatment, with some programs combining it with cognitive behavioral stress management for the breast cancer population. [46–49] This shows that finding meaning/purpose can serve as a protective mechanism for patients, which is now being leveraged in the development of an evidence-based intervention. Breitbart and colleagues, have conducted feasibility and efficacy research on an intervention that is designed to assist patients in continuing to find meaning in their lives in the face of cancer. [50] For patients not religiously or spiritually inclined, existential psychotherapy may offer benefits for those seeking to explore the meaning and existential dimension of their being. [51–53] With the field of religion, spirituality, and health rapidly growing, strategies intervening on aspects of these constructs, such as one’s purpose or meaning in life, may offer the best benefits for women on active AET.

Specific strengths of this study include our focus on patient-centered perspectives on the psychosocial adjustment to breast cancer and symptom management of AET. This approach allowed us to understand women’s attitudes, beliefs, and behaviors which play an important role in AET persistence. A limitation of this study is the demographics of the women interviewed, as the majority were highly educated with an income at or above the United States median household income. As a result, we may have missed the perspectives of other important drivers for AET persistence from women with different sociodemographic backgrounds. Another limitation is that religious affiliation was not collected in this study. Despite this, the results of the study do offer insight into how interventions can be developed to help women better adjust and manage their experiences with AET.

Conclusion

Our study identified that religion and/or spirituality helps women with their adjustment to breast cancer and symptom management of AET. Given that AET-related side-effects are associated with AET non-adherence, [54, 55] this study illustrates the importance of developing interventions that harness religion and spirituality to help women cope with their AET treatment. For instance, clinicians can refer patients to spirituality/religious counseling to target psychological and health behaviors issues. On the other hand, clinicians can refer survivors that are not religious or spiritual to meaning-centered group psychotherapy or existential psychotherapy. Findings from this study can be used as evidence for the development of interventions that work to enhance AET persistence among breast cancer survivors.

Implications for breast cancer survivors.

This study illustrates the importance of developing meaning-centered interventions that harness religion and spirituality to help women cope with AET. Our findings support the development of interventions that work to enhance AET persistence among breast cancer survivors.