Jul 29, This enquired about their worst experiences during the breast cancer episode, positive aspects of the illness and any advice they would give to.
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All women discussed decreasing fats and red meats. The Latinas and Asians decreased pork, and some Chinese women described beliefs about avoiding certain foods e. Exercise was also an important lesson for African Americans and Asian Americans. However, some women questioned whether certain traditional beliefs or behaviors might have contributed to cancer or the severity of the illness. For example, Latinas cited the common view of preferring overweight to thin bodies:. As children we were encouraged to eat well, and back then that signified to eat everything without any limitations.
The heavier you were, the healthier you were considered to be. Now I think all that possibly has something to do with getting the disease. Some Latinas felt that ambivalent or negative attitudes toward screening exams and religious beliefs about seeking healing from God rather than from medicine contributed to the late detection or worsening of their cancer. Some African Americans also spoke of the hazards of self-medication practices, such as herbal remedies:.
Down in Texas where I was raised, a lot of people used to try to cure things with a lot of… herbs. Women from all groups spoke of difficulties in adjusting to physical changes from cancer. Several Caucasian survivors expressed anger and disappointment of developing cancer despite a healthy lifestyle:. I felt like my body let me down. I took herbs and vitamins for years. Many survivors described negative feelings about their bodies after breast cancer and its treatments.
You know you get your hair back, but your body is missing something. It makes you not as pretty as you used to be. I have a deformity on my chest. Cancer to me, is like a stigma. And then I always have the scar to remind me of that. Further, some Asians avoided looking in the mirror and dressed to disguise their bodies e. Weight gain was particularly problematic for Latinas in affecting their body image. However, some Asian Americans reported that cancer did not negatively affect their body image, and some African American women expressed particularly self-affirming comments:.
My breast cancer has nothing to do with my femininity. And nobody can take that from me. I walk the same walk today that I did then. I feel better about myself now, because I take better care of myself now. You keep going on. My husband still loves me, he still wants me. African American, Asian American, and Latina survivors noted that self-acceptance is more difficult for younger women, as there is more emphasis on physical appearance and concern about breast reconstruction. Effect on body image for older women was less problematic:.
We tend to have more courage. In general, older women 50 years and older experienced less or no negative impact on their sex life and relationships compared to younger women. Latinas and Asian Americans attributed this in part to abstinence before diagnosis. Decreased or lack of sexual desire after treatment was a common problem for the Caucasians, African Americans and Asian Americans. Seven were abandoned after being diagnosed:. Latino men are brought up as machos…. They consider us only as the mother of their children or a housekeeper, but not as a wife, and end up leaving us alone.
Before cancer, I had long hair and lost it during chemo. I was worried that my husband would not find me attractive anymore after my hair fell out, but he told me that I was still pretty. My husband is very nice, I have all these other conditions, diabetes, cancer, high blood, everything! But my husband just says it comes with the package. I felt bad and cried a lot, not only because of my missing breast, but also because I looked huge. I avoided my husband…the only thing I was expecting from him was rejection but he turned out to be the most understanding person. He consoled me and told me he loved me for the person who I am and not for my physical appearance.
Reservations about dating were discussed by single African American, Latina and Asian American survivors. Disclosure to potential partners was a major concern for some African Americans and Asian Americans. An Asian American survivor expressed feeling hesitant about dating because of uncertainty about cancer recurrence and not wishing to be a burden to someone. Another survivor described the challenges in dating relationships:. Some of the men that I have gone out with—you really find out the people who are really in your corner…One friend of mine, after I told him I was diagnosed, I seldom heard from him.
I told him, cancer is not contagious, and I hung up the phone. Latinas whose spouses had left them after the cancer diagnoses and treatments expressed lack of interest in getting involved in another relationship to avoid rejection and betrayal. These BCS discussed both negative and positive impact of breast cancer. Many survivors reported experiencing significant anxiety about recurrence around the time of their annual exams.
One African American noted a distrust of mammograms:. They tell the women, go get the mammogram. While the survivors did not minimize their painful experiences, they reported that overall breast cancer had a positive effect on their lives. They identified improvements in the quality of relationships with loved ones and a heightened appreciation and purpose of life:.
First, I was depressed, but later when I accept it, I see things differently. I enjoy my son and I talk to him, spend time with him. And I am nicer to my husband. Before we argue a lot. But now, just let it go. Then when my life was threatened with this disease, it hit me that I love my life and I want to live. It kind of make me realize, appreciate life more than before. So now, I become more positive. The way I see life now has changed a lot. Now I appreciate my family, parents, children, more. Cancer has shown me to value what I have. My kids used to stress me out. Breast cancer has made me change my whole life priority.
I am very selective and particular about how I spend my time. After my diagnosis, I learned to see things different. Now I have learned to appreciate and value life and others more. I thank God for that and also because it was me who was diagnosed and not my children or other members of my family.
As a result, some women have changed their lifestyles, such as decreasing stress levels and workload, and taking better care of themselves:. I used to be a stressful person, I used to worry about everybody but myself. I used to go to work, come home, have dinner, cook, clean. My children have told me that I have become very selfish. I manage my life in a relaxed way since the most difficult part had passed. Every day I live my life happily. Breast cancer made me re-evaluate and slow down my life a lot. Gave me more empathy for what people might be going through.
It was like a wake-up call. Among most survivors, current neighborhood did not impact stress levels or ability to cope with cancer. However, two Caucasians reported that loud noise in their neighborhood was stressful. One African American survivor also acknowledged the neighborhood where she lived prior to diagnosis was stressful. Some Asians and Latinas felt uncomfortable and stressed when neighbors asked questions after noticing the side effects of treatment, such as hair loss and fatigue.
The majority of Asian American survivors did not report receiving support from their neighborhoods, primarily because they did not know their neighbors very well. A few of the Korean women indicated that their mostly Korean neighborhood had a positive impact:. The neighborhood has been so kind. I feel so thankful. They care about my health. Each time, they tell me that I look better. Additionally, although some Latinas reported that they had disclosed their diagnoses and received support from their neighbors, many preferred to keep their diagnosis within their family:. As Latinos we have learnt from our parents to respect privacy and keep personal issues within the family.
The less people know about it the better. That prevents people from asking questions and getting into your business. Most Caucasian survivors either were not working at the time of diagnosis or had stopped working due to residual pain from treatment. Self-employed Asian American survivors did not have concerns about employment.
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Most Asians who disclosed their diagnosis in their work environment reported receiving support from employers and co-workers, while others received no support and felt pressured to leave their job. Many reduced their workload. African American women reported side effects such as low energy and difficulties focusing on the work, but also continued employment. The majority of African Americans disclosed their condition to supervisors and co-workers, and all who disclosed received support. Some attempted to educate co-workers as well:. I work with a bunch of ladies.
In contrast, employment was a major concern for Latinas. Few maintained their positions, six lost their jobs as a result of missing work or change in performance due to the cancer and treatment, another eight changed or lost their jobs after treatment due to inability to continue functioning at the same level. Unfortunately, some did not attend all treatment in order to avoid termination. These women worried about being unable to financially support their families, and felt that cancer had a significant effect on their employability.
A few who disclosed their diagnoses to their employer reported receiving support, but some expressed much discomfort in their supervisor or co-workers finding out about their diagnosis.
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Several women chose instead to change jobs or stop working to avoid disclosure of their cancer diagnosis:. If I would have chosen to stay and not tell anyone I would have had to take time off to go to treatment and its side effects are pretty obvious. Then I would feel obligated to tell them, so it was better for me to move on and I did. I work in sales, but after the mastectomy I decided to stop working. Cancer has affected me emotionally and physically and I think my appearance will affect my dividends.
Besides, that is not the image I want to present to my clients. This study accomplishes many goals: More importantly, the study addressed areas that have not been adequately studied before.
This study offers important contributions to the literature, however there are important limitations that affect external validity, particularly generalizability: Overall, we found this diverse group of BCS were satisfied with overall recovery, felt purposeful in their role functioning and optimistic about their health. These survivors enjoyed a fairly good HRQOL because they benefitted from cultural healing practices e. Many women revealed that they did not want to burden their families and children with their cancer. Moreover, regarding work and employment, many Latinas experience serious job disruptions e.
These findings corroborate a multi-ethnic study that found that women endorsed greater self-care independence, worry about burdening family members, and financial concerns as a result of their cancer Greimel et al. Moreover, most women accepted their cancer diagnosis as well as the pain and suffering that may accompany this fate. Thus, their coping responses illustrate common human characteristics, yet there were profound cultural differences.
Spirituality was essential to all women and the use of spiritual or religious practices were very common. The African American and Latinas relied heavily on their prayers and the prayers and support of their faith community, and the Asian and Latinas on faith. These prayers offered intercession for healing and strength in response to the cancer and increased faith in their relationship with God. The women of color primarily relied on religion-based spirituality while many of the Caucasian women used various spiritual practices.
All women in this study embodied resilience; many of the African American women drew from the long legacy of resilience and survivorship history of African Americans; the majority of the Asians and Latinas relied on inner strength and an emotional response of displacement e. Many women across ethnicities believed that the illness is caused in part by a stressful life chronic distress and is contained by having a positive attitude. This positive attitude is essential to overcoming the cancer, and has various cultural manifestations.
Additionally, many women reflected some dissatisfaction with the quality of the relationship with their doctors. Moreover, these women expressed concerns about their inclusion in the treatment decision-making process and expressed desire for greater involvement. Treatment decision-making issues are complex, the interaction among personal e. SES, cancer knowledge, individual choice , sociocultural e. Future studies must examine cultural, family, and the health care system in addition to individual-level factors to address treatment options and quality of care.
Finally, regarding body image and sexual health concerns—a number of women expressed trauma, loss of body esteem, a sense of flawed femininity, as well as negative relational effects. Caucasians and Latinas were particularly vulnerable to experiencing a sense of damaged womanhood. Furthermore, many women revealed significant decreases in sexual desire and activity. This preliminary, qualitative study has resulted in some important discoveries regarding the relationship between breast cancer and sexual health for all women including women of color.
These findings draw attention to the fact that Asian and Latino women are affected by body image and sexuality concerns after breast cancer. The relationship between breast cancer and sexual health is multifarious, involving personal as well as partnership issues. Therefore, studies should include women and their partners to decrease body image and relational issues among BCS. The major themes are presented in Table 3. National Center for Biotechnology Information , U.
Author manuscript; available in PMC Oct See other articles in PMC that cite the published article. Abstract Breast cancer is the most common form of cancer in American women across most ethnic groups. The key informant interviews The purpose of the key informant interviews was to gather information about the breast cancer experiences from knowledgeable, community health professionals and advocates working with diverse populations. Focus groups interviews The focus group interview provides a facilitative, non-threatening group environment in which to explore the perceptions and personal experiences regarding a specified issue or topic.
Table 1 Focus group interview domains. Domain Sample question Health beliefs What are things that have helped your recovery or coping the most? What is the best way or ways to handle a major illness? Health socialization Thinking back to childhood, what were some of the things you learnt about health? Relationships Who gave you the most support to help cope with breast cancer? Quality of care Tell me about your relationship with your breast cancer doctors. What did your doctors tell you to do to get well? Socio-economic status What are things that may affect the quality of treatment a person gets from the medical staff or doctor?
Socio-ecological factors How has your local neighborhood or community affected your coping with breast cancer? What type of support do you receive from your supervisor? Open in a separate window. Key informant demographics Twenty female key informants participated: Summary of key informant interviews The informants stressed the need for more affordable and accessible care. Focus group participant demographics A total of BCS participated in 11 focus group interviews: Table 2 Focus group demographics.
Family support Family support was identified as important for all women. Ethnic minority women discussed the salience of support from immediate and extended family to emotional well-being and treatment adherence: African American For many Latinas and Asians, family was the main source of support; their roles included accompanying the women to medical visits.
They expressed concern about disclosing their illness and burdening family: Armenian As a parent, it is very hard to express your feelings when you see your children are getting affected. African American A Caucasian survivor compensated for lack of family support by attending support groups. Korean Since I decided to stop working, my husband pressures me to get a job and tells me he is not going to provide for me while I just stay home being lazy. Latina A number of Chinese survivors reported that they performed daily chores themselves even during treatments, rather than receiving help from their families.
Social support Support groups provided women with an additional resource, specifically the theme of feeling understood and encouraged by other survivors. In addition, support groups provided a means of obtaining valuable information regarding treatment and recovery: African American One day someone invited me to come to the support group.
Latina It is most important to be with people with same disease.
Korean Asian American and Latina survivors also considered health care providers to be important sources of support. Spirituality Spirituality was highlighted as a fundamental component of the healing process. Caucasian Mental stability was frequently described as a spiritual awakening or reconnection by women in the African American groups: African American Ethnic minority women stressed the significance of spirituality and prayer on their recovery.
A number of Asian American and Latina survivors felt that the outcome of the illness and their fate was ultimately controlled by God, regardless of their actions: Latina We all know cancer is a non-curable disease, if we follow up treatment we can get better, but not cured. Latina I just trust God. Asian American While spirituality offered women a great deal of support, some survivors were disappointed in the lack of conjunctive support from those around them. For example, one African American referred to the historical cultural mistrust of doctors: Handling a major illness, participation in medical treatments African Americans and Caucasians attributed having an overall attitude of survival and the need to fight the illness: Caucasian A cultural tradition of surviving severe obstacles was noted by one African American survivor as a testimony of having the strength to also fight cancer: African American Religious beliefs that influence health practices were deemed essential to handling an illness by African Americans, Latinas and less acculturated Asian American survivors.
African American A few Latinas and Caucasians, however, were disillusioned by the failure of their healthy lifestyles to prevent cancer: Latina I watched my food for many years, considered myself very fit, walked 4 miles every day. Caucasian Some women also discussed the importance of minimizing stress: Asian American The more acculturated Asian American women cited avoidance of isolation, avoidance of dwelling on the illness, and having a positive attitude.
Educating oneself by seeking additional information and asking questions, timely follow-up with medical treatment, documenting physical response to medical treatment, obtaining a second opinion, and engaging in a healthy diet and taking exercise were emphasized: Caucasian Ask for a second opinion. African American However, the less acculturated Asian Americans indicated that while they participated in the decision-making, they depended on their doctors for the final treatment decision.
Fear and anxiety Across ethnicity, survivors expressed similar fears regarding recurrence, death, pain, and suffering often identified as a larger fear than dying , but focused on specific areas. For several Caucasians, apprehensions about incapacitation and loss of autonomy were greater than fears about death: Caucasian Well, you know, just lying there, being ill for a long time. Armenian Women from different groups discussed the uncertainty about recurrence and survival: Latina It is not the pain, but it is the anxiety, the fear of it becoming positive. African American Concerns about the illness affecting their roles as caregivers and the impact on their families were mentioned by African American, Asian American and Latina women: African American I feared the most the pains that I have seen others suffering.
Korean African American and Latina survivors also held fears that female relatives will also develop with breast cancer. This was a major concern for many Latinas who felt that doctors often favored performing more radical surgeries: Overall, Caucasian, Latina, and Asian American BCS characterized their doctors as providing sufficient support for following recommendations: Several of these women felt the doctors really did not care about them and noted that they were treated disrespectfully for asking questions: African American One African American, however, spoke of receiving good support: African American Overall, Asian American, Latina and Caucasian survivors described positive relationships with their doctors.
However, these survivors also expressed concern over insufficient time with their doctors: Asian American It could be better if they could only spend more time talking to us or answering any questions we may have either about breast cancer or any other medical concerns we may have at the time. Latina The doctor was too busy to talk to me, but there is a responsible person who talked to me before my surgery.
Chinese The majority of the African American survivors described negative relationships, such as doctors discounting their concerns: African American African Americans and Latinas also mentioned the lack of doctor sensitivity in listening to their concerns or in relaying the diagnosis: The more acculturated Asians expressed worries about trust and disclosure of information: Economic-related discrimination was a major concern for many of the African Americans: African American Over half of the Latinas and some of the monolingual Asian Americans found it difficult to follow and meet requirements for treatment-related financial assistance.
Thus, many have significant medical debts: Chinese I had to pay my doctor fee at one time. Latina We are aware that there are clinics and hospitals that…offer free care for low income, but the problem is not getting there, or not speaking the language, the problem is to qualify for the program….
Latina Several African American and Latina survivors also mentioned disparate treatment due to ethnicity: African American At the time of diagnosis, I had to deal with an insensitive translator who was in a hurry and did not take the time to explain to me what cancer was. Latina Insurance status was another factor resulting in discriminatory treatment mentioned by Caucasians and Latinas. For example, a survivor described suffering in relation to not being able to afford procedures and prescriptions: Caucasian Additionally, two Caucasian survivors described difficulties in enrollment e.
Language barriers by Latinas and Armenians were cited as interfering with obtaining information and care: Barriers to quality health care Women from all ethnic groups felt that financial status was an important determinant in the quality of care received. Asian American Educational level is not as important as how willing and able a person is to take charge and find out information for themselves.
Caucasian The women noted that the quality of care received is based upon assumptions that others make about education level. Monolingual Asian American and Armenian women were also concerned that brochures were not available in their native language: Armenian Further, monolingual Asian Americans and Latinas expressed the difficulties experienced in obtaining or utilizing interpreters in the health care system: African American Some of the Asian Americans and Armenians felt that had they been in their native country, the outcome of their disease would probably have been worse.
Health socialization; traditions and values affecting cancer Most women recalled that cancer was not openly discussed in the family during their childhood. The silence and shame regarding cancer was particularly more common in the past and in certain cultures: African American During childhood, people died, but we had never heard of cancer…. Latina Chinese people like to hold everything inside. Chinese Women recalled learning primarily about practices and beliefs related to general health. In particular, Caucasians emphasized laughter and having patience, and the mind-body connection was discussed by the Asian Americans: Korean Healthy eating practices and nutrition was also mentioned by women from the different groups as having a strong link to well-being.
For example, Latinas cited the common view of preferring overweight to thin bodies: Latina Some Latinas felt that ambivalent or negative attitudes toward screening exams and religious beliefs about seeking healing from God rather than from medicine contributed to the late detection or worsening of their cancer. Some African Americans also spoke of the hazards of self-medication practices, such as herbal remedies: Body image Women from all groups spoke of difficulties in adjusting to physical changes from cancer.
Several Caucasian survivors expressed anger and disappointment of developing cancer despite a healthy lifestyle: Caucasian Many survivors described negative feelings about their bodies after breast cancer and its treatments.
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Caucasian It makes you not as pretty as you used to be. Asian American Further, some Asians avoided looking in the mirror and dressed to disguise their bodies e. However, some Asian Americans reported that cancer did not negatively affect their body image, and some African American women expressed particularly self-affirming comments: African American I feel better about myself now, because I take better care of myself now.
African American You keep going on. African American African American, Asian American, and Latina survivors noted that self-acceptance is more difficult for younger women, as there is more emphasis on physical appearance and concern about breast reconstruction. Effect on body image for older women was less problematic: Intimate relationships In general, older women 50 years and older experienced less or no negative impact on their sex life and relationships compared to younger women.
Seven were abandoned after being diagnosed: Latina However, a number of women across ethnicity had supportive and accepting partners: Caucasian Before cancer, I had long hair and lost it during chemo. Asian American …After treatment I gained a lot of weight. Another survivor described the challenges in dating relationships: African American Latinas whose spouses had left them after the cancer diagnoses and treatments expressed lack of interest in getting involved in another relationship to avoid rejection and betrayal. Overall effect of breast cancer These BCS discussed both negative and positive impact of breast cancer.
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One African American noted a distrust of mammograms: African American While the survivors did not minimize their painful experiences, they reported that overall breast cancer had a positive effect on their lives. They identified improvements in the quality of relationships with loved ones and a heightened appreciation and purpose of life: Asian American The way I see life now has changed a lot. African American Breast cancer has made me change my whole life priority. Caucasian After my diagnosis, I learned to see things different.
Latina As a result, some women have changed their lifestyles, such as decreasing stress levels and workload, and taking better care of themselves: African American I manage my life in a relaxed way since the most difficult part had passed. Chinese Breast cancer made me re-evaluate and slow down my life a lot. Effect of neighborhood Among most survivors, current neighborhood did not impact stress levels or ability to cope with cancer.
A few of the Korean women indicated that their mostly Korean neighborhood had a positive impact: Korean Additionally, although some Latinas reported that they had disclosed their diagnoses and received support from their neighbors, many preferred to keep their diagnosis within their family: Some attempted to educate co-workers as well: African American In contrast, employment was a major concern for Latinas. Several women chose instead to change jobs or stop working to avoid disclosure of their cancer diagnosis: Latina I work in sales, but after the mastectomy I decided to stop working.
Limitations This study offers important contributions to the literature, however there are important limitations that affect external validity, particularly generalizability: Acknowledgments This study was supported by a grant from the Department of Defense References American Cancer Society.
Ashing-Giwa K, Ganz P. Understanding the experience of breast cancer in African-American women. Quality of life in African American and White long-term breast cancer survivors. Understanding the breast cancer experience of Asian American women. Fatigue in breast cancer survivors: Occurrence, correlates, and impact on quality of life. Quality of life in cancer: Definition, purpose and method of measurement. Long-term quality of life after breast cancer: Comparison of 8-year survivors with population controls. Crabtree B, Miller W, editors.
Sage Publications; Newbury Park: Gender differences in outcomes among patients with cancer. Influence of culture on cancer pain management in Hispanic patients. Perceptions of quality of life in Hispanic patients with cancer. Impact of breast cancer on Asian American and Anglo American women.
Interpreting and reporting qualitative research. A plan and budget proposal for fiscal year Voices of a broken system: Real people, real problems. The excess burden of breast carcinoma in minority and medically underserved communities. Concerns about breast cancer and relations to psychosocial well-being in a multiethnic sample of early stage patients.
Basics of Qualitative Research: Grounded Theory, Procedures and Techniques. Conceptualizing disease impact and treatment outcomes. The use of qualitative methods to strengthen psychosocial research on cancer. Curbow B, Somerfield M, editors. Psychosocial Resource Variables in Cancer Studies.
Haworth Medical Press; New York: An exploratory study of social support: A cross-cultural comparison of Chinese-, Japanese-, and Anglo-American breast cancer patients. Support Center Support Center. Please review our privacy policy. What are things that have helped your recovery or coping the most? Thinking back to childhood, what were some of the things you learnt about health?
Who gave you the most support to help cope with breast cancer? Tell me about your relationship with your breast cancer doctors. What are things that may affect the quality of treatment a person gets from the medical staff or doctor? How has your local neighborhood or community affected your coping with breast cancer? Spirituality, prayer Family support Emotional support lacking. Faith, prayer Family support spouse, kids, siblings, in-laws. Support groups Partners and friends Spirituality. Survivor instinct in African American ancestry Self-care affects quality of life, longevity Changes in diet, drinking Participate in care.
Accept illness God ultimately in control Attitude affects recovery Participation important; less acculturated prefer doctor to make decisions. God has ultimate control Healthy diet, no excess Vulnerability to illness due to unhealthy habits Participation in health care important. Some view the mastectomy site as a deformity Ugliness of scar. Embarrassed, sad, frustrated Feel incomplete Feel ugly, self-conscious Afraid partners may not consider them complete women. Some feel doctors do not provide support or care about them Concern about doctor sensitivity.
These conversations took place in Gujarati. Five women agreed to take part. They were all first generation immigrants and had been living in the UK for an average of 36 years. Three were from India and two from Kenya. Their ages at the time of interview ranged from 55 to 76 years mean 66 years. Age at initial diagnosis ranged from 29 to 69 years mean 51 years and time since initial diagnosis ranged from 4 to 32 years mean 15 years. All the women had a diagnosis of primary breast cancer.
Three had undergone a mastectomy and 2 had had a lumpectomy. At the beginning of each interview, participants were given an information sheet to read and the consent form to complete. The information sheet outlined the purpose of the research and nature of participation in detail. Both the information sheet and consent form were prepared in English. As many of the women were unable to read in English or Gujarati, the interpreter verbally went through the information sheet with them.
It was for this reason, that the information sheet was not translated into Gujarati and also due to the variation in dialects. On understanding the information sheet, participants were given the opportunity to ask any questions. They were reminded of the rationale of the study and their right to withdraw. The confidentiality of their responses was also emphasised. Once satisfied with the information provided, participants were required to sign the consent form before the interview commenced.
All the interviews were conducted in Gujarati, predominately by the researcher, with assistance from the interpreter to relay the interview questions, if necessary. The interviews were translated and transcribed into English by the researcher GP-K and checked for accuracy by the interpreter. Any discrepancies in the translations were discussed and amended accordingly. This method of analysis has become an established analytic method within the realms of health psychology; particularly when exploring illness experiences such as cancer, chronic pain and heart disease Smith, and is appropriate for use with a small sample size, ranging between 3 and 6 participants Smith and Osborn, Each transcript was read several times, noting interesting points in the left-hand margin.
The right hand margin was then used to document emergent theme titles. This was then studied in detail, modified and further developed until a master list of themes was created. A final table consisting of themes and sub-themes was constructed. The interpretations were verified by an independent researcher PV , who is familiar with researching populations drawn from BME groups and experienced in conducting IPA, to ensure the validity of the data Reid et al, Any concerns were discussed but on the whole, the independent researcher was in full agreement of the initial interpretations. Each theme is described in detail below with extracts from the data and using pseudonyms throughout.
All the women described their experiences of breast cancer as being very difficult and distressing. It was important for them to be able to understand the concept of cancer and make sense of it in order to accept and manage their experiences. They were unaware that a lump can be serious and potentially related to cancer or that cancer symptoms can be asymptomatic. Ignoring symptoms resulted in a delayed diagnosis for Deepa and Raksha:. Some also stated that they were unaware of an illness such as cancer which can vary in type and affect different parts of the body.
And there was purple marks on a man there. So I asked someone. I was shocked seeing that, that day. Before that I thought I was the only one. This was a commonly held view amongst all the women. However, many of the women acknowledged that over time, this has become less of a problem as information in their mother-tongue is now readily available, prompting them to understand their illness more.
The unexpected diagnosis led the women to want to understand why and how they had developed cancer. However, Manjula did not want to understand the cause and believed her diagnosis was out of her control. Some women also discussed their diagnosis in relation to karma, fate, and believed they had to endure the illness to make amends for bad deeds from their past lives. However, there were times when the treatments would get too much to bear, leaving some women temporarily feeling like the cancer was an act of punishment from God.
As the women told their stories, it became evident that support, particularly from their family members, was very important in helping them get through their experiences of diagnosis and treatment. Family members, particularly immediate family, were described as providing practical support such as taking participants to hospital appointments, helping with household chores, assisting with tasks such as bathing or brushing their hair, which the women found difficult after surgery, and caring for other family members.
So he was in hospital, I was in hospital and my eldest son would go to school. And my husband would go work, drop him to school, then come to see me and then go see the other son. So my husband was very supportive.
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Hansa had very little family around to support her, yet still felt well supported as she reached out to her friends and community members. She used to visit me every day. Participants described how faith in God was an important source of support and engaging in religious activities, such as praying, helped them.
Healthcare professionals were also described as supportive, with nurses providing women with emotional support, reassurance and encouragement throughout the cancer journey. All of the women who took part in this study were very limited in their ability to understand and communicate in English.
For this reason, they relied heavily on others typically family members to accompany them to hospital appointments and act as interpreters. This often meant that healthcare professionals would communicate with the family members instead of talking directly to the patient, expecting the family member to pass the information on. But they did explain things to her. To some extent this enabled some women to feel involved in consultations and informed at each stage but others acknowledged that relying on family members to translate information meant they might not always get a detailed understanding and that information could be lost in translation if, for example, family members or children were unable to fully understand all the information themselves.
Nonetheless, women preferred to rely on family members or close friends who they knew and felt comfortable with, rather than relying on professional interpreters. While Raksha, Deepa and Manjula relied on fluent Englishspeaking family members to interpret information, Alpa and Hansa depended on people who did not speak the language very well.
This did not concern Alpa or Hansa because, even though their interpreters spoke only basic English, they still felt that they still understood the main information. Although the women in this study had had to rely on others to help them overcome language barriers, some voiced their concerns about burdening others with their problems as it often meant family members would need to take time off from work in order to be present.
This limited their understanding of the information they received and also prohibited them from asking for further advice and information. For example, when asking Deepa if the hospital staff had given her information about financial support that she might be eligible to receive, she replied by saying:. Relying on family members and other people to act as interpreters also meant that treatment decisions were often made as a family.
In these circumstances the family helped the women to make decisions about the best treatment for them. In many cases, the women were satisfied with this format as they felt they had been informed and involved in the decision making process and ultimately placed greater trust in literate and educated family members.
They [consultant] did say that it will take a couple of years for it to fill but after that it will be normal whereas if you do the other [mastectomy], then you could get an artificial one [reconstruction]. The extent and nature of appearance-related concerns were dependent on the type of treatments that women underwent and the side effects they had experienced. Three had undergone a mastectomy and these women spoke of the impact this had on their body image. Some women also expressed feeling body conscious, especially when going out in public and, as a result, limited their social activities.
Women felt that wearing a breast prosthesis helped them to overcome their body image concerns and helped them to regain their body shape. Such feelings were more prominent during the time the women underwent their treatments. However, over time and as the women accepted their altered appearance, these feelings became less of an issue. Hansa was the only participant who received chemotherapy treatment and concerns about losing her hair were evident as she took measures to avoid hair loss by wearing a cold cap to cool the scalp in order to prevent or minimise hair loss.
She also dealt with this issue positively by reassuring herself that the hair loss would be temporary. If they [hair] go they go, if they stay they stay [laughs]. All the women underwent changes to their appearance of some kind or another as a result of treatment, but Deepa and Raksha were not particularly concerned by the changes they experienced.
Instead, they placed greater emphasis on their health and being alive. They also felt that due to their age, appearance issues were not so important. They believed they were less bothered by the changes than younger women would be, as these women likely to be more invested in their appearance. This study has offered an insight into the experiences of Gujarati-speaking Indian breast cancer survivors living in the UK. The findings of the study show the importance of social support, body image concerns, cultural beliefs and the need for an awareness and understanding of breast cancer.
These findings support previous studies that have explored the experiences of South Asian women both English speaking and those with LEP who have been diagnosed and treated for the disease Bottorff et al, ; Howard et al, ; Gurm et al, ; Blows et al, ; Patel et al, The findings also concur with the results of research involving breast cancer survivors from other BME groups Ashing-giwa et al, ; Blows et al, ; Patel et al, The women in this study had very little knowledge of cancer before receiving their own diagnosis. There is evidence of a lack of knowledge and awareness about breast cancer amongst White and other BME populations Dein, but women with LEP are even less likely to know about this disease Bottorff et al, ; Howard et al,