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Experiences and perspectives of ethnocultural breast cancer survivors in the interior region of British Columbia: A descriptive cross-sectional approach

Open AccessPublished:June 20, 2022DOI:https://doi.org/10.1016/j.cegh.2022.101095

      Abstract

      Background

      Breast cancer is the most common form of cancer in Canadian ethnocultural survivors. There is little information on the psychosocial impact of experiences and perspectives among ethnocultural survivors.

      Objective

      The purpose of this study was to examine the experiences and perspectives of ethnocultural breast cancer survivors in the interior region of British Columbia.

      Methods

      A descriptive cross-sectional approach was used. A research ethics board approval was obtained. A purposive sample of 115 ethnocultural breast cancer survivors was recruited in the interior region from August 2020 to March 2021. Written and verbal consent was obtained from the participants who completed a survey questionnaire.

      Results

      Patient engagement in care and total satisfaction scores were significantly associated with younger age, higher schooling, living a marital life, being employed, having extended health benefits, having a family history of breast cancer, decreased number of years with the first breast cancer diagnosis, and lesser severity of symptom distress. Participants of a younger age expressed receiving better consultation and advice from health care practitioners for cancer treatment-related distress, building patient-physician communication, relationship and trust.

      Conclusion

      A deeper understanding the cancer-related experiences of ethnocultural breast cancer survivors lies in its importance of integrating return to work, health benefits and extended insurance policies within the framework of cancer supportive care. This research lays a foundation for future work to develop specific supportive care interventions that reduce psychosocial distress, improve work productivity and longevity leading to better quality of life.

      Keywords

      1. Introduction

      Over the last few centuries, the prevalence of cancer has doubled, making it an enormous health burden for Canadian society. Additionally, the empirical evidence regarding the same is undeniable; currently, the burden of cancer care is escalating in all national regions and across wide-ranging socio-economic categories.
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      Consequently, lung, breast, colorectal, and prostate cancers are the most diagnosed cancers in Canada, accounting for approximately half (48%) of all new cancer cases.
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      Projected estimates of cancer in Canada in 2020.
      Data suggest that in 2018, there were 26735 new cancer cases in British Columbia (BC), with a cancer incidence rate of 533.6/100000 representing all ages, genders, and primary cancer sites in BC. Recent figures, based on the 2020 census, show that more than 115 800 Canadian men were diagnosed with cancer, with 44100 dying from the disease; among women, 110000 were estimated to have received a cancer diagnosis, with 39300 dying from it. A patient can expect deterioration in physical, psychological, emotional, and social well-being throughout a cancer illness, from the initial diagnosis to the treatment and follow-up.
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      The diagnosis, treatment, and side effects of cancer affect quality of life. Hence, cancer care is complex, with significant coordination required to ensure quality and continuity of care throughout the entire disease trajectory.
      Ethnocultural group is defined by the shared characteristics such as cultural traditions, ancestry, language, national identity, country of origin, and physical traits unique to and recognized by that group. An extensive body of research has documented that some ethnocultural women lack emotional support and support from families. Previous studies on breast cancer reported that participants had a lack of knowledge about breast cancer and its treatment and tried to seek information from peers.
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      Information needs of breast cancer patients: theory-generating meta-synthesis.
      A review of qualitative studies found that ethnocultural women had limited access to care, which contributed to their diagnosis of more advanced disease,
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      Reconceptualising rural cancer inequalities: time for a new research agenda.
      causing anxiety related to perceived severity and disengagement coping.
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      Predicting general and cancer-related distress in women with newly diagnosed breast cancer.
      Studies have suggested a need for continuity of care and support to help survivors cope with changes in cancer treatment and their everyday life.
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      Perspectives of survivors: coping with lifestyle adjustments following cancer diagnosis and treatment.
      ,
      • Tompkins C.
      • Scanlon K.
      • Scott E.
      • Ream E.
      • Harding S.
      • Armes J.
      Survivorship care and support following treatment for breast cancer: a multi-ethnic comparative qualitative study of women's experiences.
      Breast cancer is stressful and life-altering, leading to poor psychosocial outcomes,
      • Dobson C.
      • Rubin G.
      • Murchie P.
      • Macdonald S.
      • Sharp L.
      Reconceptualising rural cancer inequalities: time for a new research agenda.
      and difficulty in communicating with health care providers due to cultural factors, lack of familiarity, and language barriers.
      • Fitch M.I.
      Perspectives of survivors: coping with lifestyle adjustments following cancer diagnosis and treatment.
      ,
      • Sun Y.
      • Shigaki C.L.
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      Return to work among breast cancer survivors: a literature review.
      Therefore, ethnocultural breast cancer survivors have more unmet needs regarding information and support after the completion of treatment for breast cancer.
      • Singh-Carlson S.
      • Wong F.
      • Oshan G.
      Evaluation of the delivery of survivorship care plans for South Asian female breast cancer survivors residing in Canada.

      2. Background

      In recent years, a small number of studies with breast cancer survivors have reported peer support
      • Tompkins C.
      • Scanlon K.
      • Scott E.
      • Ream E.
      • Harding S.
      • Armes J.
      Survivorship care and support following treatment for breast cancer: a multi-ethnic comparative qualitative study of women's experiences.
      ,
      • Singh-Carlson S.
      • Wong F.
      • Oshan G.
      Evaluation of the delivery of survivorship care plans for South Asian female breast cancer survivors residing in Canada.
      and family support can have an effect on depression and anxiety of cancer survivors'.
      • Gibbons A.
      • Groarke A.
      • Sweeney K.
      Predicting general and cancer-related distress in women with newly diagnosed breast cancer.
      ,
      • Ashing K.T.
      • George M.
      • Jones V.
      Health‐related quality of life and care satisfaction outcomes: informing psychosocial oncology care among Latina and African American young breast cancer survivors.
      Past literature has documented that Latina breast cancer survivors' wellbeing is negatively affected by their inability to engage with their care.
      • Dobson C.
      • Rubin G.
      • Murchie P.
      • Macdonald S.
      • Sharp L.
      Reconceptualising rural cancer inequalities: time for a new research agenda.
      ,
      • Singh-Carlson S.
      • Wong F.
      • Oshan G.
      Evaluation of the delivery of survivorship care plans for South Asian female breast cancer survivors residing in Canada.
      For example, breast cancer survivors complained of not knowing what to expect at the end of their treatment, causing an unfavorable emotional response during the transition to follow-up in the United Kingdom.
      • Tompkins C.
      • Scanlon K.
      • Scott E.
      • Ream E.
      • Harding S.
      • Armes J.
      Survivorship care and support following treatment for breast cancer: a multi-ethnic comparative qualitative study of women's experiences.
      Psychosocial network support may increase the sense of wellbeing among women with breast cancer and tailor a care plan that is likely to be more effective than generic interventions. Peer-support resources would be helpful for cancer diagnosis within the community.
      • Singh-Carlson S.
      • Wong F.
      • Oshan G.
      Evaluation of the delivery of survivorship care plans for South Asian female breast cancer survivors residing in Canada.
      Some women with newly diagnosed cancer expressed a more significant reduction in depressive symptoms when receiving emotional support.
      • Moon T.J.
      • Chih M.Y.
      • Shah D.V.
      • Yoo W.
      • Gustafson D.H.
      Breast cancer survivors' contribution to psychosocial adjustment of newly diagnosed breast cancer patients in a computer-mediated social support group.
      In addition, there were no existing support groups for ethnocultural, immigrant, and African women with breast cancer.
      • Warmoth K.
      • Cheung B.
      • You J.
      • Yeung N.C.
      • Lu Q.
      Exploring the social needs and challenges of Chinese American immigrant breast cancer survivors: a qualitative study using an expressive writing approach.
      While there is a limited, albeit growing body of research exploring this phenomenon, there is a need for highlighting the relevance of socio-cultural behaviors in shaping the experiences of ethnocultural breast cancer survivors. These psychosocial concerns associated with breast cancer treatment suggest that experiences of survivors' impact their well-being.
      Breast cancer survivors' role as caregivers, alongside the stress of potentially burdening their families, adds to the challenges they face such as lack of insurance, unfamiliarity with the healthcare system, and lack of available social support.
      • Warmoth K.
      • Cheung B.
      • You J.
      • Yeung N.C.
      • Lu Q.
      Exploring the social needs and challenges of Chinese American immigrant breast cancer survivors: a qualitative study using an expressive writing approach.
      The available comparative studies showed that breast cancer experiences differed among ethnocultural breast cancer survivors where most women were given written information solely in English and did not consider their cultural influences on post-treatment recommendations.
      • Tompkins C.
      • Scanlon K.
      • Scott E.
      • Ream E.
      • Harding S.
      • Armes J.
      Survivorship care and support following treatment for breast cancer: a multi-ethnic comparative qualitative study of women's experiences.
      Navigating the health care system is a challenge faced by many participants that has consequences such as symptom distress, financial burden, and potential health consequences.
      • Warmoth K.
      • Cheung B.
      • You J.
      • Yeung N.C.
      • Lu Q.
      Exploring the social needs and challenges of Chinese American immigrant breast cancer survivors: a qualitative study using an expressive writing approach.
      Cancer treatment distress may reflect illness-related perceptions about cancer, decreased physical health due to fatigue, irritability, memory loss, and recurring pain, with emotional health being directly associated with the physical quality of life.
      • Warmoth K.
      • Cheung B.
      • You J.
      • Yeung N.C.
      • Lu Q.
      Exploring the social needs and challenges of Chinese American immigrant breast cancer survivors: a qualitative study using an expressive writing approach.
      This suggests that a return to everyday life is difficult, and having side-effects has a significant distressing and emotional impact on breast cancer experience.
      • Fitch M.I.
      Perspectives of survivors: coping with lifestyle adjustments following cancer diagnosis and treatment.
      This experience therefore elicits a need for more professional translational services to be available in cancer-related treatment.
      • Tompkins C.
      • Scanlon K.
      • Scott E.
      • Ream E.
      • Harding S.
      • Armes J.
      Survivorship care and support following treatment for breast cancer: a multi-ethnic comparative qualitative study of women's experiences.
      A recent study revealed that patients' caregiver and peer mentor support is beneficial for women's medical adherence, and counselling services addressing concerns about stigma and communication among family members may benefit patients' adjustments.
      • Warmoth K.
      • Cheung B.
      • You J.
      • Yeung N.C.
      • Lu Q.
      Exploring the social needs and challenges of Chinese American immigrant breast cancer survivors: a qualitative study using an expressive writing approach.
      There is, however, limited focus on understanding psychosocial wellbeing, supportive care, and the increasing complexity of experiences among immigrants, refugees, minority and racialized populations.

      3. Literature

      Many cancer survivors viewed surviving cancer as an improvement in wellness, giving them a sense of thriving, build resilience, and the confidence and satisfaction of having “beat cancer” without “falling and giving up”.
      • Davis C.M.
      • Nyamathi A.M.
      • Abutatiq A.
      • Fike G.C.
      • Wilson A.M.
      Abstract C01: understanding supportive care factors among African American breast cancer survivors.
      Sharing survivorship experiences among women was important and interfaced with shared ethnicity and language for African American and Latina breast cancer survivors.
      • Dyer K.E.
      • Coreil J.
      Meanings of breast cancer survivorship among members of ethnically-identified support groups.
      Experiences of racialized women are different from Euro-American women's experiences, further supporting existing research that has examined ethnic group differences among cancer survivors.
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      • Harcourt D.
      • Rumsey N.
      • Naqvi H.
      • White P.
      The psychosocial experiences of breast cancer amongst Black, South Asian and white survivors: do differences exist between ethnic groups?.
      Current evidence on South Asian women reported higher anxiety, depression, internal and fatalistic beliefs about cancer, and a poorer body image than white women.
      • Patel-Kerai G.
      • Harcourt D.
      • Rumsey N.
      • Naqvi H.
      • White P.
      The psychosocial experiences of breast cancer amongst Black, South Asian and white survivors: do differences exist between ethnic groups?.
      Latina and Chinese breast cancer survivors reported loss of self-esteem resulting from bodily changes caused by breast cancer treatment and the importance of treatment satisfaction in predicting quality of life outcomes.
      • Yanez B.
      • Maggard Gibbons M.
      • Moreno P.I.
      • Jorge A.
      • Stanton A.L.
      Predictors of psychological outcomes in a longitudinal study of Latina breast cancer survivors.
      Low-to-middle-income Chinese immigrant survivors could not afford cancer care services at convenient locations and were preoccupied with concerns about costs and harming their productivity at work.
      • You J.
      • Wang C.
      • Yeung N.C.
      • Lu Q.
      Socioeconomic status and quality of life among Chinese American breast cancer survivors: the mediating roles of social support and social constraints.
      Quantitative studies reported that university graduates and occupation groups showed a significantly higher level of empowerment, with the survivors of breast cancer showing significant differences in their quality of life, based on self-help group participation.
      • Shin S.
      • Park H.
      Effect of empowerment on the quality of life of the survivors of breast cancer: the moderating effect of self-help group participation.
      A positive attitude helped participants during their survivorship journey; a positive outlook was described as “living stress-free” and gaining information from the American Cancer Society website to help them during their ongoing survivorship.
      • Davis C.M.
      • Nyamathi A.M.
      • Abutatiq A.
      • Fike G.C.
      • Wilson A.M.
      Abstract C01: understanding supportive care factors among African American breast cancer survivors.
      These previous findings were also coupled with the empirical evidence of inadequate support and lack of follow-up services regarding transparency, support, and patient-provider communication from the survivors' perspective. Another study indicated that self-efficacy in patient-physician communication was significantly correlated with satisfaction with being cured, suggesting a relationship between self-efficacy in patient-physician communication and psychological outcomes post-surgical treatment.
      • Yanez B.
      • Maggard Gibbons M.
      • Moreno P.I.
      • Jorge A.
      • Stanton A.L.
      Predictors of psychological outcomes in a longitudinal study of Latina breast cancer survivors.
      Fatigue, cognition, upper body limitation, and pain were reported as most likely to diminish the functional ability of performing activities among African American breast cancer survivors.
      • Sun Y.
      • Shigaki C.L.
      • Armer J.M.
      Return to work among breast cancer survivors: a literature review.
      Comparing ethnocultural breast cancer survivors’ experiences can help identify whether changes to practice and policy are needed to ensure that they receive appropriate care. The recent health policy has highlighted a gap in understanding patient stories, culturally appropriate care and ethnocultural experiences.
      • Patel-Kerai G.
      • Harcourt D.
      • Rumsey N.
      • Naqvi H.
      • White P.
      The psychosocial experiences of breast cancer amongst Black, South Asian and white survivors: do differences exist between ethnic groups?.
      ,
      • You J.
      • Wang C.
      • Yeung N.C.
      • Lu Q.
      Socioeconomic status and quality of life among Chinese American breast cancer survivors: the mediating roles of social support and social constraints.

      4. Methods

      4.1 Human ethical considerations

      Ethical approval was obtained through the Research Ethics Board of Thompson Rivers University, BC Cancer and Interior Health Research Information Systems.

      4.2 Research aim

      This study aimed to examine the experiences and perspectives of ethnocultural breast cancer survivors in the interior region of British Columbia.

      4.3 Design and approach

      This study used a cross-sectional descriptive design as part of the larger community-based participatory research (CBPR) approach to provide a study conceptualization, dissemination of findings, being grounded in socio-cultural orientations and provide a deep understanding of the experiences.
      • Tremblay M.C.
      • Martin D.H.
      • McComber A.M.
      • et al.
      Understanding community-based participatory research through a social movement framework: a case study of the Kahnawake Schools Diabetes Prevention Project.
      Cross-sectional approach emphasizes experience and its relationship to power analysis and examines ethnocultural challenges from the point of view of breast cancer survivors who experience them.

      4.4 Sample and setting

      A sampling framework of all eligible ethnocultural women diagnosed with, treated for, and surviving breast cancer was obtained through purposive sampling. Caucasian women included British, French, Dutch, German, Polish, Italian, Portuguese, Spanish etc. Racialized women included Arabs, African, Chinese, Japanese, Korean, Filipino, Vietnamese, East Asian, Southeast Asian etc. A purposive sample was used to select participants from Thompson-Nicola, Cariboo, Kootenay, Okanagan and Columbia-Shuswap in the interior region. The sample size was decided based on G*Power 3.1 statistical software's one-way ANOVA, an effect size of 0.35, α error prob = .05, a power (1-β err prob) of 0.80, thus, a minimum sample size of 105 was required. A total of 115 samples were taken, considering 10% attrition in the study. Eligible criteria included English-speaking/literate adults, aged eighteen and above, diagnosed with primary breast cancer and having completed more than one year post-diagnosis; treated with surgery, radiation, chemotherapy, hormonal therapy, and immunotherapy; and capable of providing informed consent. Women who were not English speaking/literate, were not willing to consent, had advanced breast cancer, were diagnosed with a different primary cancer, and palliative care were excluded.

      4.5 Measurements and outcomes

      A survey questionnaire was developed based on a literature review, discussions with breast cancer survivors, and validation by oncology nurses and key informants. The survey questionnaire (See Table 1) consisted of 15 items on patient engagement in care addressing the following: consultation, side effects of treatment, supportive cancer services, navigating cancer care services, complementary and alternative care, knowledge and awareness about breast cancer, psychosocial health and wellness and survivorship. Self-reported demographic and clinical information included age, ethnicity, school, marital status, income, employment, extended health care benefits, family history of breast cancer, regular family practitioner, first breast cancer diagnosis, second breast cancer diagnosis, and health problems after breast cancer treatment. The survey instrument was validated with a nurse educator, a physician, a nurse practitioner and a clinician. Reliability of the survey was assessed with an internal consistency of total satisfaction score and dimensions, as measured by Coefficient of Cronbach's alpha, was 0.74.
      Table 1Survey questionnaire items on dimensions of experiences and perspectives.
      1. Consultation and advice availed from health care practitioners for cancer treatment-related distress
      2. Informed and aware of side effects of treatment and patient role expectations
      3. Informed about cancer supportive services and follow up from health care practitioners
      4. Building patient-physician communication, relationship and trust
      5. Language translation through family interpreters
      6. Access and use of cancer supportive services, health and wellness resources
      7. Ease to navigate cancer care services and community health and wellness resources
      8. Availability and use of complementary and alternative care approaches
      9. Use of patient voice for advocacy in cancer care
      10. Knowledge and awareness about breast cancer diagnosis, treatment, survivorship and palliatives care
      11. Use of psychosocial health and wellness services
      12. Use of peer support groups and peer mentors
      13. Psychosocial support to cope with diagnosis, treatment, survivorship
      14. Access to survivorship to cope and self-manage after completion of treatment

      4.6 Data collection procedures

      One hundred fifteen breast cancer survivors were screened and were deemed to be eligible. Oral and written informed consent was obtained from the survey. The adult survivors were free to withdraw their participation from the study at any time during the study and would continue to receive their health care services. Participants were recruited through announcement posters and brochures in hospitals, clinics, support groups and social media. Interested participants contacted the researchers and were briefed about the study information, purpose, procedures, human ethics, and informed consent. We recruited participants for eight consecutive months in the interior region from August 2020 to March 2021. Participants who volunteered for the study completed the surveys in paper format, through survey monkey, and/or electronic mail. The participants took 40–45 min to complete the study and received a voucher. Each participants’ survey was assigned a unique code.

      4.7 Data analysis

      Data were entered and analyzed using the SPSS-25 statistical software (IBM Corporation, Armonk, NY, USA). Descriptive statistics and Pearson Chi-square tests were used to examine the relationships between socio-demographic variables and the total satisfaction score.
      Categorical variables such as socio-demographic variables and numerical variables such as experiences and perspectives were covariables. Statistical analysis was performed at a 0.05 level of significance.

      5. Results

      Of the 115 breast cancer survivors, six survivors did not return the surveys, five survivors chose not to participate, and four survivors submitted partly-completed surveys after three reminders. One hundred survivors completed the survey, giving a response rate of 87%.

      5.1 Demographic characteristics of women survivors with breast cancer

      Forty-six percent of the participants were older than 60 years, 43% had trade and vocational education, 73% were married, and 44% were retired (Table 2). Women belonged to British, French, Dutch, German, Polish, Italian, Portuguese, Spanish (74%); Middle East, African, Pakistan, Syrian (6%), Chinese, Japanese, Filipino, Vietnamese (9%) and East Asian, Bangladesh, Sri Lankan, Afghanistan (11%) ethnocultural groups.
      Table 2Demographic characteristics of Women Survivors with Breast Cancer N = 100.
      Determinant categoriesValid PercentCumulative Percent
      Age (years)
      Below 4023.023.0
      40–6031.054.0
      Above 6046.0100.0
      School education
      High school18.018.0
      Trade and vocational43.061.0
      Undergraduate and above39.0100.0
      Marital status
      Married, Common law partner73.073.0
      Widow, Single10.083.0
      Divorced, Separated17.0100.0
      Income
      Less than $35,000 CAD17.017.0
      $35,000–69,999 CAD25.042.0
      $70,000 CAD and more58.0100.0
      Employment
      Full time employment34.034.0
      Part time employment22.056.0
      Retirement44.0100.0
      Ethnicity and culture
      British, French, Dutch, German, Polish, Italian, Portuguese, Spanish74.074.0
      Middle East, African, Pakistan, Syrian6.06.0
      Chinese, Japanese, Filipino, Vietnamese9.09.0
      East Asian, Bangladesh, Sri Lankan, Afghanistan11.011.0

      5.2 Clinical characteristics of women survivors with breast cancer

      Twenty percent of the participants had a family history of breast cancer, 86% had a family general practitioner, 32% were diagnosed with breast cancer for less than three years, and 40% had major symptom distress from cancer related treatment (Table 3).
      Table 3Clinical characteristics of Women Survivors with Breast Cancer N = 100.
      Determinant categoriesValid PercentCumulative Percent
      Extended Health care benefits and insurance
      Yes65.065.0
      No35.0100.0
      Family history of breast cancer
      Yes27.027.0
      No73.0100.0
      Having a regular medical practitioner
      General family practitioner86.086.0
      Nurse practitioner3.089.0
      Oncologist, Specialist11.0100.0
      First diagnosis of breast cancer
      Less than 3 years32.032.0
      3–5 years28.060.0
      6–10 years13.073.0
      More than 10 years27.0100.0
      Cancer related treatment distress
      No distress 0 score18.018.0
      Minor symptom distress 1–3 score7.025.0
      Moderate symptom distress 4–6 score35.060.0
      Major symptom distress >7 score40.0100.0

      5.3 Association between total satisfaction scores and demographic characteristics

      Age: There was a highly significant association between age and total satisfaction scores and consultation and advice available from health care practitioners for cancer treatment-related distress (78%; p < .003); use of psychosocial health and wellness services (62%; p < .049); building patient-physician communication, relationship, and trust (58%; p < .003); language translation through a family interpreter (49%; p < .001); and psychosocial support to cope with diagnosis, treatment, or survivorship (47%; p < .012) (Table 4).
      Table 4Association between Total Satisfaction Score and Demographic characteristics N = 100.
      Social determinantsHealthcare dimensions of wellbeing and satisfactionFeeling Uninformed

      0
      Satisfaction

      1
      Pearson Chi-Square, ValueChi-Square Tests, dfAsymptotic Significance (2-sided) p-value
      AgeConsultation and advice availed from health care practitioners for cancer treatment-related distress227811.668a20.003
      Informed and aware of side effects of treatment and patient role expectations4654.570a2.752
      Informed about cancer supportive services and follow up from health care practitioners5248.264a2.876
      Building patient-physician communication, relationship and trust425811.899a2.003
      Language translation through family interpreters514913.076a2.001
      Access and use of cancer supportive services, health and wellness resources62383.657a2.161
      Ease to navigate cancer care services and community health and wellness resources59412.887a2.236
      Availability and use of complementary and alternative care approaches4753.762a2.683
      Use of patient voice for advocacy in cancer care75253.506a2.173
      Knowledge and awareness about breast cancer diagnosis, treatment, survivorship and palliatives care36641.275a2.529
      Use of psychosocial health and wellness services38626.038a2.049
      Use of peer support groups and peer mentors38622.085a2.353
      Psychosocial support to cope with diagnosis, treatment, survivorship53478.791a2.012
      Access to survivorship to cope and self-manage after completion of treatment51491.863a2.394
      SchoolingConsultation and advice availed from health care practitioners for cancer treatment-related distress22781.546a2.462
      Informed and aware of side effects of treatment and patient role expectations465410.964a2.004
      Informed about cancer supportive services and follow up from health care practitioners52483.130a2.209
      Building patient-physician communication, relationship and trust42586.981a2.030
      Language translation through family interpreters51498.180a2.017
      Access and use of cancer supportive services, health and wellness resources62383.767a2.152
      Ease to navigate cancer care services and community health and wellness resources59415.540a2.050
      Availability and use of complementary and alternative care approaches47533.381a2.184
      Use of patient voice for advocacy in cancer care7525.152a2.927
      Knowledge and awareness about breast cancer diagnosis, treatment, survivorship and palliatives care36649.754a2.008
      Use of psychosocial health and wellness services38622.892a2.235
      Use of peer support groups and peer mentors3862.639a2.727
      Psychosocial support to cope with diagnosis, treatment, survivorship53477.882a2.019
      Access to survivorship to cope and self-manage after completion of treatment51492.215a2.330
      Marital StatusConsultation and advice availed from health care practitioners for cancer treatment-related distress22782.871a2.238
      Informed and aware of side effects of treatment and patient role expectations4654.162a2.922
      Informed about cancer supportive services and follow up from health care practitioners5248.423a2.809
      Building patient-physician communication, relationship and trust42581.451a2.484
      Language translation through family interpreters51496.451a2.040
      Access and use of cancer supportive services, health and wellness resources6238.896a2.639
      Ease to navigate cancer care services and community health and wellness resources5941.804a2.669
      Availability and use of complementary and alternative care approaches47531.317a2.518
      Use of patient voice for advocacy in cancer care75253.687a2.158
      Knowledge and awareness about breast cancer diagnosis, treatment, survivorship and palliatives care36646.304a2.043
      Use of psychosocial health and wellness services38626.231a2.044
      Use of peer support groups and peer mentors38623.837a2.147
      Psychosocial support to cope with diagnosis, treatment, survivorship53471.128a2.569
      Access to survivorship to cope and self-manage after completion of treatment51495.398a2.050
      EmploymentConsultation and advice availed from health care practitioners for cancer treatment-related distress22788.030a2.018
      Informed and aware of side effects of treatment and patient role expectations46542.300a2.317
      Informed about cancer supportive services and follow up from health care practitioners5248.504a2.777
      Building patient-physician communication, relationship and trust425812.470a2.002
      Language translation through family interpreters51495.342a2.050
      Access and use of cancer supportive services, health and wellness resources62387.456a2.024
      Ease to navigate cancer care services and community health and wellness resources59416.102a2.047
      Availability and use of complementary and alternative care approaches47532.955a2.228
      Use of patient voice for advocacy in cancer care7525.898a2.638
      Knowledge and awareness about breast cancer diagnosis, treatment, survivorship and palliatives care36644.746a2.050
      Use of psychosocial health and wellness services38624.868a2.050
      Use of peer support groups and peer mentors3862.192a2.908
      Psychosocial support to cope with diagnosis, treatment, survivorship53473.771a2.152
      Access to survivorship to cope and self-manage after completion of treatment51493.432a2.180
      Schooling: There was a highly significant association between schooling and total satisfaction scores and knowledge and awareness about breast cancer diagnosis, treatment, survivorship, and palliative care (64%; p < .008); building patient-physician communication, relationship, and trust (58%; p < .030); information and awareness of the side effects of treatment and patient role expectations (54%; p < .004); language translation through family interpreters (49%; p < .017); psychosocial support to cope with the diagnosis, treatment, or survivorship (47%; p < .019); and ease of navigating cancer care services and community health and wellness resources (41%; p < .05) (Table 4).
      Employment: There was a significant association between employment and total satisfaction scores and consultation and advice available from health care practitioners for cancer treatment-related distress (78%; p < .018); knowledge and awareness about breast cancer diagnosis, treatment, survivorship, and palliative care (64%; p < .050); use of psychosocial health and wellness services (62%; p < .050); building patient-physician communication, relationship, and trust (58%; p < .002); language translation through family interpreters (49%; p < .050); ease in navigating cancer care services and community health and wellness resources (41%; p < .047); and access and use of supportive cancer services and health and wellness resources (38%; p < .024) (Table 4).

      5.4 Association between total satisfaction score and clinical characteristics

      Extended health care benefits: There was a significant association between extended health care benefits and total satisfaction scores and knowledge and awareness about breast cancer diagnosis, treatment, survivorship, and palliative care (64%; p < .005); use of psychosocial health and wellness services (62%; p < .022); patient-physician communication, relationship, and trust (58%; p < .050); ease in navigating cancer care services and community health and wellness resources (41%; p < .016); and access and use of supportive cancer services and health and wellness resources (38%; p < .002) (Table 5).
      Table 5Association between Total Satisfaction Score and Clinical characteristics N = 100.
      Social determinantsDimensions of experiences and perspectives of well-being and satisfactionFeeling Uninformed

      0
      Satisfied with Care

      1
      Pearson Chi-Square, ValueChi-Square Tests, dfAsymptotic Significance (2-sided) p-value
      Extended health care benefitsConsultation and advice availed from health care practitioners for cancer treatment-related distress2278.023a1.879
      Informed and aware of side effects of treatment and patient role expectations4654.214a1.644
      Informed about cancer supportive services and follow up from health care practitioners5248.571a1.450
      Building patient-physician communication, relationship and trust42583.336a1.050
      Language translation through family interpreters5149.127a1.721
      Access and use of cancer supportive services, health and wellness resources62389.942a1.002
      Ease to navigate cancer care services and community health and wellness resources59415.801a1.016
      Availability and use of complementary and alternative care approaches4753.371a1.542
      Use of patient voice for advocacy in cancer care7525.718a1.397
      Knowledge and awareness about breast cancer diagnosis, treatment, survivorship and palliatives care36647.814a1.005
      Use of psychosocial health and wellness services38625.241a1.022
      Use of peer support groups and peer mentors3862.987a1.320
      Psychosocial support to cope with diagnosis, treatment, survivorship5347.053a1.817
      Access to survivorship to cope and self-manage after completion of treatment51491.429a1.232
      Family history of breast cancerConsultation and advice availed from health care practitioners for cancer treatment-related distress22782.768a1.050
      Informed and aware of side effects of treatment and patient role expectations4654.510a1.475
      Informed about cancer supportive services and follow up from health care practitioners5248.220a1.639
      Building patient-physician communication, relationship and trust42583.923a1.048
      Language translation through family interpreters5149.636a1.425
      Access and use of cancer supportive services, health and wellness resources62384.838a1.028
      Ease to navigate cancer care services and community health and wellness resources5941.001a1.974
      Availability and use of complementary and alternative care approaches47531.474a1.225
      Use of patient voice for advocacy in cancer care7525.829a1.363
      Knowledge and awareness about breast cancer diagnosis, treatment, survivorship and palliatives care3664.651a1.420
      Use of psychosocial health and wellness services38623.012a1.050
      Use of peer support groups and peer mentors38621.617a1.204
      Psychosocial support to cope with diagnosis, treatment, survivorship53472.773a1.050
      Access to survivorship to cope and self-manage after completion of treatment5149.120a1.729
      First breast cancer diagnosisConsultation and advice availed from health care practitioners for cancer treatment-related distress22788.189a3.042
      Informed and aware of side effects of treatment and patient role expectations46543.065a3.382
      Informed about cancer supportive services and follow up from health care practitioners52487.221a3.050
      Building patient-physician communication, relationship and trust42587.946a3.047
      Language translation through family interpreters51493.750a3.290
      Access and use of cancer supportive services, health and wellness resources62386.218a3.101
      Ease to navigate cancer care services and community health and wellness resources59411.328a3.723
      Availability and use of complementary and alternative care approaches47537.539a3.050
      Use of patient voice for advocacy in cancer care75256.200a3.102
      Knowledge and awareness about breast cancer diagnosis, treatment, survivorship and palliatives care36641.587a3.662
      Use of psychosocial health and wellness services386213.427a3.004
      Use of peer support groups and peer mentors38623.718a3.294
      Psychosocial support to cope with diagnosis, treatment, survivorship53477.769a3.050
      Access to survivorship to cope and self-manage after completion of treatment51495.652a3.130
      Symptom distressConsultation and advice availed from health care practitioners for cancer treatment-related distress22786.480a3.050
      Informed and aware of side effects of treatment and patient role expectations46543.605a3.307
      Informed about cancer supportive services and follow up from health care practitioners52485.977a3.113
      Building patient-physician communication, relationship and trust42585.993a3.112
      Language translation through family interpreters51493.962a3.266
      Access and use of cancer supportive services, health and wellness resources623815.548a3.001
      Ease to navigate cancer care services and community health and wellness resources59411.625a3.654
      Availability and use of complementary and alternative care approaches47532.564a3.464
      Use of patient voice for advocacy in cancer care75253.179a3.365
      Knowledge and awareness about breast cancer diagnosis, treatment, survivorship and palliatives care36646.538a3.050
      Use of psychosocial health and wellness services38626.680a3.050
      Use of peer support groups and peer mentors3862.819a3.845
      Psychosocial support to cope with diagnosis, treatment, survivorship53476.538a3.050
      Access to survivorship to cope and self-manage after completion of treatment51494.908a3.179
      First diagnosis of breast cancer: There was a significant association between first diagnosis of breast cancer and total satisfaction scores and consultation and advice available from health care practitioners for cancer treatment-related distress (78%; p < .042); use of psychosocial health and wellness services (62%; p < .004); building patient-physician communication, relationship, and trust (58%; p < .047); availability and use of complementary and alternative care approaches (53%; p < .050); information about cancer support services and follow-up from health care practitioners (48%; p < .050); and psychosocial support to cope with diagnosis, treatment, and survivorship (47%; p < .050) (Table 5).
      Symptom distress: There was a significant association between symptom distress and total satisfaction scores and consultation and advice available from health care practitioners for cancer treatment-related distress (78%; p < .050); knowledge and awareness about breast cancer diagnosis, treatment, survivorship, and palliative care (64%; p < .050); use of psychosocial health and wellness services (62%; p < .050); psychosocial support to cope with diagnosis, treatment, and survivorship (47%; p < .050); and access and use of supportive cancer services and health and wellness resources (38%; p < .001) (Table 5).

      6. Discussion

      This study showed that younger age, higher education, living with a spouse, and full-time employment significantly correlated with total satisfaction scores among the ethnocultural breast cancer survivors. Other studies showed that Latina women had limited access to care
      • Dobson C.
      • Rubin G.
      • Murchie P.
      • Macdonald S.
      • Sharp L.
      Reconceptualising rural cancer inequalities: time for a new research agenda.
      and felt less satisfied with their care.
      • Ashing K.T.
      • George M.
      • Jones V.
      Health‐related quality of life and care satisfaction outcomes: informing psychosocial oncology care among Latina and African American young breast cancer survivors.
      Financial and economic disadvantages influenced satisfaction with care and patient-provider communication.
      • Ashing K.T.
      • George M.
      • Jones V.
      Health‐related quality of life and care satisfaction outcomes: informing psychosocial oncology care among Latina and African American young breast cancer survivors.
      While Chinese women are expected to be patient's caregivers, which becomes an essential part of their identity and a priority in their lives.
      • Warmoth K.
      • Cheung B.
      • You J.
      • Yeung N.C.
      • Lu Q.
      Exploring the social needs and challenges of Chinese American immigrant breast cancer survivors: a qualitative study using an expressive writing approach.
      Our study showed that extended health benefits, family history of breast cancer, first breast cancer diagnosis, and symptom distress were significantly associated with total satisfaction scores among the ethnocultural breast cancer survivors. Other studies showed that culture was associated with physical well-being and experiences of difficulties with patient-physician communication,
      • Dobson C.
      • Rubin G.
      • Murchie P.
      • Macdonald S.
      • Sharp L.
      Reconceptualising rural cancer inequalities: time for a new research agenda.
      with less access to written information in their native language regarding treatment side‐effects.
      • Liska T.M.
      • Kolen A.M.
      The role of physical activity in cancer survivors' quality of life.
      Some ethnocultural breast cancer survivors expressed that they were partly aware of cancer-related treatment distress and expected physicians to be more open about symptom distress related to treatment. These women felt that they were not adequately prepared for emotional distress due to fear, weight gain, and radiation marks. Some ethnocultural breast cancer survivors were more likely to consult for symptom distress, take advice from their physicians and oncologists, and perceive their physician as necessary in their treatment care. These results reflect previous research, which showed that participants were eager for information but were uncertain about which questions to ask their doctor, mainly due to a lack of understanding about concepts of prognosis, diagnosis, and cancer stage/grade.
      • Liska T.M.
      • Kolen A.M.
      The role of physical activity in cancer survivors' quality of life.
      The gaps were noted along with the continuity of care and cancer patient navigation from early diagnosis to treatment, survivorship, and palliative care. Consultation and advice from physicians were helpful and a primary source of information for treatment decision-making; participants reported a lack of decision-making support tools, tracking outcomes, and collaboration among health care providers. Only 50% of the ethnocultural breast cancer survivors who reported cancer treatment distress consulted their physicians. This shows that continuity of care or follow-up care requires attention for developing a cost-practical care framework to promote health and wellness for meeting survivors’ needs.
      The data obtained in this study provided insight into the experiences of ethnocultural breast cancer survivors who expressed being informed and aware of the side effects of cancer-related treatment, with patient role expectations being significantly associated with the schooling level. These findings can be explained by the diverse cultural and language differences that exist among ethnocultural breast cancer survivors. Women reported difficulties managing the side effects of treatment and found it to be a distressing element of women's cancer experience,
      • Fitch M.I.
      Perspectives of survivors: coping with lifestyle adjustments following cancer diagnosis and treatment.
      which was also seen in South Asian women.
      • Singh-Carlson S.
      • Wong F.
      • Oshan G.
      Evaluation of the delivery of survivorship care plans for South Asian female breast cancer survivors residing in Canada.
      This perspective can aid in understanding how ethnocultural breast cancer survivors view the intent to be informed and being aware of the side effects of cancer-related treatment, with differing capacity to obtain information. Survivors who reported receiving information tended to ask questions, have conversations, and express concerns compared to those who could not assert their decision-making preferences with their family physicians, specialists, or oncologists. This shows that survivors should receive information about continuity of care and transition to self-care after treatment is completed to help them understand the importance of cancer treatment distress and seeking health care.
      Ethnocultural women stated that physicians provided valuable information about breast cancer treatment options and follow-up care to their cancer-related treatment distress until they were satisfied. But some ethnocultural breast cancer survivors who were partly engaged in shared decision-making, more passive and more accepting of how physicians responded to their concerns and had less than moderate satisfaction. Additionally, research found that women did not know what to expect at the end of treatment or the structure and content of follow-up care, thereby feeling unprepared for life after treatment.
      • Tompkins C.
      • Scanlon K.
      • Scott E.
      • Ream E.
      • Harding S.
      • Armes J.
      Survivorship care and support following treatment for breast cancer: a multi-ethnic comparative qualitative study of women's experiences.
      Participants expressed inadequate follow-up appointments with physicians, questioning how well they knew their medical history. Appointments with an unknown need further deterred women from asking questions,
      • Tompkins C.
      • Scanlon K.
      • Scott E.
      • Ream E.
      • Harding S.
      • Armes J.
      Survivorship care and support following treatment for breast cancer: a multi-ethnic comparative qualitative study of women's experiences.
      which led to distress, financial burden, and potential health consequences.
      • Warmoth K.
      • Cheung B.
      • You J.
      • Yeung N.C.
      • Lu Q.
      Exploring the social needs and challenges of Chinese American immigrant breast cancer survivors: a qualitative study using an expressive writing approach.
      Patient-physician communication and relationship was an essential expectation at the time of breast cancer treatment among ethnocultural breast cancer survivors. Medical care and information sharing was necessary; physicians were expected to be knowledgeable about breast cancer and its prognosis and trustworthy in providing diligent care. Consistent with the literature, appointments were hurried and not long enough to discuss post-treatment concerns, leaving the women uncomfortable or unable to ask questions, thereby inducing practical and emotional concerns.
      • Tompkins C.
      • Scanlon K.
      • Scott E.
      • Ream E.
      • Harding S.
      • Armes J.
      Survivorship care and support following treatment for breast cancer: a multi-ethnic comparative qualitative study of women's experiences.
      Latinas were most likely to report that no counsellors could speak their language or understand their cultural values.
      • Bonilla J.
      • Escalera C.
      • Santoyo-Olsson J.
      • et al.
      The importance of patient engagement to quality of breast cancer care and health-related quality of life: a cross-sectional study among Latina breast cancer survivors in rural and urban communities.
      Other studies have shown that interaction may be presented as a choice, but some Chinese cancer survivors were unable to make an informed decision.
      • Liska T.M.
      • Kolen A.M.
      The role of physical activity in cancer survivors' quality of life.
      Black women expressed a lack of contact with breast cancer nurses, less opportunity to talk, and a lack of post-treatment visits.
      • Tompkins C.
      • Scanlon K.
      • Scott E.
      • Ream E.
      • Harding S.
      • Armes J.
      Survivorship care and support following treatment for breast cancer: a multi-ethnic comparative qualitative study of women's experiences.
      Ethnocultural women in rural areas reported ease in engaging with physicians compared to urban women, and hence, better emotional and physical well-being.
      • Dobson C.
      • Rubin G.
      • Murchie P.
      • Macdonald S.
      • Sharp L.
      Reconceptualising rural cancer inequalities: time for a new research agenda.
      This can result in ethnocultural breast cancer survivors reporting a lack of knowledge about cancer support services and a lack of follow-up from health care practitioners regarding recognizing and managing cancer treatment distress, impacting the quality of life. The findings highlight the concerns and needs expressed by survivors for best practice recommendations and health promotion strategies to improve their quality of life.
      Participants believed that their family and friends would not be able to offer much help.
      • Fitch M.I.
      Perspectives of survivors: coping with lifestyle adjustments following cancer diagnosis and treatment.
      There was a lack of available social support in a foreign country, with other family members still living in their home countries.
      • Warmoth K.
      • Cheung B.
      • You J.
      • Yeung N.C.
      • Lu Q.
      Exploring the social needs and challenges of Chinese American immigrant breast cancer survivors: a qualitative study using an expressive writing approach.
      ,
      • D'Souza M.S.
      • O'Mahony J.
      • Karkada S.N.
      Effectiveness and Meaningfulness of Breast Cancer Survivorship and Peer Support for Improving the Quality of Life of Immigrant Women: A Mixed Methods Systematic Review Protocol.
      Furthermore , the findings of this study showed that less psychosocial support to cope with the cancer continuum was significantly associated with age, school, family history of breast cancer, and symptom distress. Family and friends played a significant role in providing participants with emotional support, reassurance, information, and practical assistance.
      • Fitch M.I.
      Perspectives of survivors: coping with lifestyle adjustments following cancer diagnosis and treatment.
      The family and community also provided transportation and acted as interpreters when there were language barriers.
      • Singh-Carlson S.
      • Wong F.
      • Oshan G.
      Evaluation of the delivery of survivorship care plans for South Asian female breast cancer survivors residing in Canada.
      Family support was associated with better understanding and coping by reducing symptom distress and cancer treatment related distress. This study had some limitations. First, there is a need to include larger heterogeneous samples from different sites in the interior region, which will allow for appropriate statistical comparison between ethnocultural breast cancer survivors. The inclusion of non-English speaking ethnocultural groups to look at experiences and language translations, assessment of the objective measures’ and psychometric properties. Second, the surveys were conducted in English and the samples were not representative of Indigenous, Inuit and Metis people. Third, cause and effect relationships, recall bias and mental fatigue were not explored in this study.
      The study innovation highlight how participants of a younger age expressed receiving better consultation and advice from health care practitioners for cancer treatment-related distress; building patient-physician communication, relationship, and trust; using a family interpreter for language translation; using psychosocial health and wellness services; and receiving psychosocial support to cope with diagnosis, treatment, and survivorship. The findings suggest that undergraduate education enabled better awareness of the side effects of treatment and patient role expectations; more knowledge and awareness about breast cancer diagnosis, treatment, survivorship, and palliative care; and psychosocial support to cope with cancer care compared to older age groups. The data suggested that participants living with a spouse had better access to language translation through family interpreters; had knowledge and awareness about breast cancer diagnosis, treatment, survivorship, recurrence and palliation; used psychosocial health and wellness services; and had access to survivorship to cope after completion of treatment.
      The novelty of the study will help to interpret social justice and equity policies for ethnocultural women seeking cancer supportive care that require navigation to cope with breast cancer treatment-related distress. The inability to attain appropriate social support through health services can cause psychosocial distress, increased sick days and negatively impact their quality of life. The findings regarding better access to psychosocial wellness among the ethnocultural breast cancer survivors may be influenced by younger age, higher education, living with a spouse, full-time employment, extended health benefits, family history of breast cancer, the first diagnosis of breast cancer, and symptom distress. This psychosocial perspective can affect the feeling of being informed and satisfaction with care that enhances patient-physician communication and decision-making choices. This study is a groundwork to understand how complexity of experiences in ethnocultural breast cancer survivors influence their navigation with cancer care services.
      A deeper understanding the cancer-related experiences of ethnocultural breast cancer survivors lies in its importance of assimilating return to work, health benefits and extended insurance policies within the cancer care framework. The findings can be translated into practice through digital applications and care co-ordination to enhance patient-oriented outcomes, thus enabling an opportunity to produce data-driven measures. This research lays a foundation for future work to develop cancer supportive care interventions that reduce psychosocial distress, improve work productivity and increase longevity leading to better quality of life. This study raises awareness for academia, clinical and research coalition between health care providers, researchers, decision-makers, health planners and policymakers to streamline cancer navigation in the health care system.

      Author contributions

      Melba Sheila D'Souza (MSD), Ehsan Latif (EL), Ann McCarthy (AM) and Subrahmanya Nairy Karkada (SNK) made substantial contribution to conception and design, acquisition of data, analysis, and interpretation of data findings; been involved in drafting the manuscript, revising it critically for important intellectual content; giving final approval of the version to be published and agreed to be accountable for all aspects of the work related to accuracy and integrity of the work.

      7. Declaration of conflict of interest statement

      The authors have no conflicts of interest to disclose. The views expressed in this study do not necessarily represent the views of the institutes and organizations.

      Sources of funding

      This work was funded by Thompson Rivers University , Interior Health, Kamloops Breast Cancer Support Group and The Spirit Warriors Society 102319/2903/2019.

      Code of ethics

      The study has been approved through University of British Columbia Research Information Systems and Research and Ethics Board of Thompson Rivers University, Interior Health and BC Cancer UBC H19-02099-A002/0305/2020.

      Copyright Transfer Agreement

      We agree to the copyright of the Author Licensing Service, Journal publishing agreement and all the authors will sign the Copyright Transfer Agreement.

      Submission declaration

      This article has not been submitted to any journal and the work described has not been published previously in any form and is not under consideration of publication elsewhere.

      Submission checklist

      We have adhered to the journal standards, scope, and author guidelines. We have uploaded Cover letter, Abstract and key words, Text and References, Tables, and Title Page (Separate).

      Acknowledgments

      We acknowledge partnership with Interior Health, BC Cancer, Royal Inland Hospital Foundation, Rae Fawcett Breast Health Clinic, Breast Cancer Survivorship, Thompson Division of Family Practice, Breast Cancer Support Group, The Spirit Warriors Society, Sensational Survivors Kamloops Cancer Supportive Care Society, Kamloops Massage Matters, Kamloops Immigrant Services and collaboration with community organizations.

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