Digital illness narratives, commoning, and identity reconstruction among breast cancer survivors in post-pandemic China

Little is known about sexual dysfunction and sexual distress in Chinese female breast cancer survivors (BCSs), and their associations with physical variables, psychological factors, body image, and sexual attitudes. A cross-sectional study of 341 BCSs was performed with the Female Sexual Function Index (FSFI) and Female Sexual Distress Scale-Revised (FSDS-R). Associations between physical variables, psychological factors, body image, sexual attitudes, sexual dysfunction, and sexual distress were evaluated using logistic regression, adjusted for confounding factors. We found that 75.37% and 18.48% of BCSs reported sexual dysfunction and sexual distress during the past month, respectively. Attitudes toward sexual behavior such as "sexual activity may impede disease recovery," "sexual activity may cause cancer recurrence or metastasis," and "sexual activity may weaken treatment effects" were significantly associated with an increased likelihood of reporting sexual dysfunction and sexual distress. Body image disruption such as "felt physically less attractive as a result of your disease or treatment" was significantly associated with the experience of sexual distress. Sexual dysfunction and sexual distress are common issues in Chinese BCSs. Sexual misconception likely contributes to sexual dysfunction and sexual distress, and body image has a significantly negative association with sexual distress in BCSs. Interventions targeting sexual attitudes and body image might be important to address BCSs' sexual issues and improve their overall sexual health.

Physical distress and cancer care experiences among Chinese-American and non-Hispanic White breast cancer survivors

Dietary decision-making in Chinese breast cancer survivors: A qualitative study

Ambivalence over emotional expression (AEE) is the inner conflict of desiring emotion expression and fearing consequence of emotion expression. Few studies to date have examined the effects of AEE within an ethnic group that prioritizes emotional self-control. The present study examined the associations between AEE and well-being (viz., quality of life and depressive symptoms) as a function of acculturation among a sample of Chinese American breast cancer survivors. Ninety-six Chinese breast cancer survivors (M age=54.64years old, SD=7.98) were recruited from Southern California. Participants filled out a paper-pen questionnaire containing the Ambivalence over Emotional Expression Questionnaire (AEQ), the Functional Assessment of Cancer Therapy-Breast (FACT-B), and the Center for Epidemiologic Studies Depression Scale-Short Form (CESD-10). Acculturation was a statistically significant moderator of the relations between AEE and depressive symptoms, and a statistically marginally significant moderator of the relations between AEE and quality of life. Simple slopes revealed that AEE was negatively associated with quality of life (B=-.45, p<.001) and depressive symptoms (B=.20, p<.001) for women with high acculturation, but not associated for women with low acculturation (Bs=-.15 and .04, ps>.05, for quality of life and depressive symptoms, respectively). These results suggest that less acculturated Chinese breast cancer survivors are protected by Chinese cultural values of emotional self-control and restraint, and thus do not experience the detrimental effects of AEE on their depressive symptoms and quality of life. Implications are discussed.

Due to successful public health campaigns, breast cancer has successfully transformed from a highly stigmatized illness to a philanthropically supported disease in the United States. However, Chinese American breast cancer survivors continue to experience high levels of self-stigma and associated negative mental health outcomes. In the present study, we examined the relations between self-stigma and depressive symptoms, and further tested individual difference variables such as ambivalence over emotional expression and intrusive thoughts that may exacerbate the harmful effects of self-stigma among this population. One hundred and twelve foreign-born Chinese breast cancer survivors living in the United States completed questionnaires measuring self-stigma, depressive symptoms, AEE, and intrusive thoughts. We found significant AEE × self-stigma and intrusive-thought × self-stigma interaction effects in predicting depressive symptoms. Specifically, the relationships between self-stigma and depressive symptoms were exacerbated among individuals with high levels of AEE and intrusive thoughts. Self-stigma represents a significant predictor of depressive symptoms among Chinese breast cancer survivors, and particularly so for individuals with higher levels of AEE and intrusive thoughts. The findings suggest that for interventions designed to reduce the negative mental health outcomes associated with self-stigma, targeting risk factors such as AEE and intrusive thoughts might be promising.

Breast cancer survivors report persistent psychological and physical symptoms, which affect their quality of life and may challenge the recovery process. Due to social, cultural, and linguistic barriers, culturally sensitive care is largely unavailable for Chinese Americans, and their psychological needs are not often addressed. We aimed to investigate whether the Joy Luck Academy (JLA), a psychosocial intervention providing both information and peer support, was associated with positive adjustment among Chinese American breast cancer survivors. Thirty-nine Chinese American breast cancer survivors participated in a pilot psychosocial intervention. The educational materials and lectures were delivered in the participants’ native language of Chinese. All of the educators and mentors shared the same linguistic and cultural background with the participants. The program utilized a community-based participatory research (CBPR) approach to further enhance the cultural sensitivity of the intervention. Participants’ post-traumatic growth and positive affect were assessed before and after the intervention. The JLA showed an improvement in positive affect, and they had a greater appreciation for life. The intervention was found to be feasible, well-accepted, and beneficial for this population. Chinese American breast cancer survivors reported improved psychological health after attending the intervention. These findings encourage the development and implementation of psychosocial interventions for Chinese breast cancer survivors. Similar programs could be integrated into other ethnic or cultural communities.

The link between ambivalence over emotional expression and depressive symptoms among Chinese breast cancer survivors

Evaluation of the Psychometric Properties of the Translated Physical Self-Perception Profile Among Chinese Breast Cancer Survivor

Posttraumatic stress symptoms (PTSS) are common among breast cancer survivors. However, the association and the underlying mediating mechanism between psychosocial factors and PTSS were rarely investigated among breast cancer survivors. Previous studies have suggested the importance of emotional expression in cancer survivors' PTSS. This study examined the association between ambivalence over emotional expression (AEE; defined as the conflict between the desire to express feelings and the fear of its consequences) and PTSS, and proposed intrusive thoughts as the mediators in such an association. We tested this proposed mediation model among Chinese breast cancer survivors whose culture discourages emotional expression. Participants were 118 Chinese-speaking breast cancer survivors in the USA, who were diagnosed with breast cancer of stages 0-III within the past 5years. They completed questionnaires measuring their levels of AEE, PTSS, and intrusive thoughts. AEE was positively associated with intrusive thoughts (r=0.43, p<01), which were positively associated with the arousal and avoidance subscales of PTSS (r=0.68 and r=0.62, respectively, p<.01). Path analysis supported a partial mediation model with an indirect effect from AEE to the latent variable of PTSS (with both arousal and avoidance as indicators) via intrusive thoughts (β=0.29; 95% CI= 0.18, 0.42) and the direct effect from AEE to the latent variable of PTSS (β=0.21, 95% CI = 0.07, 0.35), all p<.001. Those who are highly ambivalent about emotion expression tend to have higher PTSS, and this may be partially due to the lack of opportunities to discuss emotional events, thereby increasing the repetitive cancer-related negative thoughts. Intervention for PTSS should consider helping cancer patients to develop adaptive emotional regulation strategies to reduce the detrimental effects of cancer-related intrusive thoughts.

Purpose: Little is known about the psychosocial barriers among immigrant Chinese American breast cancer survivors. The aim of the present study was to explore the psychosocial needs and challenges of Chinese American immigrant breast cancer survivors, and to develop and test culturally sensitive interventions to overcome these challenges. Methods: Study one used the expressive writing approach to explore the experiences among Chinese immigrant breast cancer survivors. The participants were recruited through community-based organizations in Southern California, most of whom were diagnosed at Stages I and II (33% and 48%, respectively). Participants, on average, had been living in the USA for 19 years. Participants were asked to write three 20-minute essays related to their experience with breast cancer (in 3 weeks). Participants' writings were coded with line-by-line analysis, and categories and themes were generated. Study two used the expressive writing approach as an intervention among this population. Results: Study one found that emotion suppression, perceived stigma about being a breast cancer survivor, and concerns about fulfilling multiple roles were reflected in the writings. Participants indicated their reluctance to disclose cancer diagnosis to family and friends and mentioned barriers of communicating with their husbands. Participants felt unfamiliar with the health care system and encountered language barriers. On the other hand, post-traumatic growth was also reflected in the writings. Study two found that expressive writing intervention facilitated post-traumatic growth and increased quality of life among this population. Conclusions: Counseling services addressing concerns about stigma and communication among family members may benefit patients' adjustments. Tailor-made information in Chinese about diagnosis and treatment for breast cancer and health insurance in the USA as well as interventions to facilitate finding benefits and to reduce stress and stigma may also help patients go through the course of recovery. Citation Format: Qian Lu, Qiao Chu, Krystal Warmoth, Nelson Young, Lucy Young, Alice Loh, Carol Wang. Understanding the unique experience among Chinese immigrant breast cancer survivors [abstract]. In: Proceedings of the Eleventh AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2018 Nov 2-5; New Orleans, LA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl):Abstract nr IA22.

This study investigates how Chinese breast cancer survivors reconstruct damaged identities and negotiate cultural norms to build resilience within a specific socio-cultural context. Using narrative inquiry and a life-course perspective, in-depth interviews were conducted with 15 female breast cancer survivors in Beijing. The study employed thematic narrative analysis to identify cross-cutting patterns while preserving individual story integrity. Rigor was ensured through data saturation and member checking. Resilience is manifested as a transformative narrative practice across three dimensions: (1) body narrative, survivors transition from chaos narratives to quest narratives, reclaiming identities by ascribing meaning to physical scars; (2) relational narrative, survivors negotiate the tension between Confucian gender expectations and self-care, shifting from stoic endurance to accepting vulnerability; and (3) social narrative, survivors bridge the gap between "silent island" of isolation and collective empowerment by establishing narrative communities that challenge social stigma. These findings reveal a duality of resilience-constrained by cultural structures yet empowered with agency. This study proposes a tripartite social work interventions framework, recommending that social workers act as narrative witnesses, cultural mediators, and community architects. By integrating local cultural wisdom with narrative techniques, social workers can effectively facilitate identity reconstruction and the social integration of breast cancer survivors.

This study aimed to explore the experiences and factors associated with insomnia in Chinese breast cancer survivors. Insomnia is a common and significant symptom in breast cancer survivors. Quantitative studies are unable to describe the experience of insomnia and the sleep-associated factors from a personal point of view. A profound understanding of the experience of insomnia in breast cancer survivors can provide information for health workers and caregivers to allow them to provide more effective support. A descriptive qualitative research was adopted. In-depth interviews were conducted with 22 insomniac breast cancer survivors. A qualitative content analysis was used to analyse the data. Three themes emerged concerning the experiences of insomnia, including sleep neglect, insomnia perception and insomnia anxiety. Participants reported their own opinions on three insomnia-associated factors, including factors associated with hospitalisation, factors associated with breast cancer and the therapies and too much attention placed on sleep. Survivors would neglect their sleep problems in the early stage after diagnosis. When they became aware of their sleep problems, they were inclined to worry too much and sought help from traditional Chinese medicine. Anticipatory sleep anxiety, excessive negative cognitive activities and insomnia became a vicious circle for insomniac breast cancer survivors. The findings provide detailed information to help nurses understand the experiences of breast cancer survivors with insomnia. Nurses could provide proper care to help prevent insomnia or improve sleep.

Background: Socioeconomically disadvantaged and immigrant cancer survivors account for a significant and growing proportion of the breast cancer population in the US. Research on symptom burden and control among Chinese American (CA) breast cancer survivors (BCS) is scarce. Among all BCS, over 55% report treatment-related symptoms (e.g., fatigue and pain) and psychological stress (e.g., fear of recurrence). In our preliminary cross-sectional study, we found similar rates (~58%) but showed that CA (especially low-acculturated) BCS were particularly likely to report fatigue, pain, and poorer physical functioning relative to non-Hispanic White (NHW) BCS. We understand very little about whether CA and NHW BCS have different ways of managing symptoms, improving quality of life and decreasing risk for functional decline. We therefore propose a study to examine how CA and NHW BCS, two culturally distinct groups with divergent social resources, adapt to breast cancer. Study design: This longitudinal, prospective study will investigate sociocultural influences on individual coping behaviors and how they in turn affect racial differences in inflammation markers, symptom severity, and functional outcomes in breast cancer. This study will enroll 260 CA and 260 NHW female BCS to examine multifactorial pathways to breast cancer survivorship outcomes. The CA cases will be age- and stage-matched to the NHW cases. Utilizing a multilevel biobehavioral framework, we will investigate the dynamics of biological, sociocultural, and behavioral (diet and exercise) influences on symptom severity, physiologic status, and functional outcomes. Participants will complete telephone survey interviews and provide blood samples at baseline and 6- and 12-month follow-up. Pro-inflammatory cytokines (e.g., IL-1β, IL-1a, IL-6, IL8, IL10, TNFα, TNFꞵ, and CRP) and cortisol will be analyzed. In-depth individual interviews with a subset of participants will be conducted to investigate causal factors in order to develop individually and culturally appropriate interventions to improve future clinical care for targeted breast cancer survivor populations. This study is supported by NIH R01CA248413. Eligibility criteria: Eligible participants are CA and NWH women (age &amp;gt;= 18) who are diagnosed with invasive breast cancer (stage I, II, or III), are 1-5 years post diagnosis, and have completed primary treatment (e.g., surgery, radiation, chemotherapy, and/or targeted therapy). Patients currently on adjuvant endocrine therapy are allowed. Specific aims: Aim 1: Examine whether CA BCS’ symptom, functional, and physiologic outcomes (e.g., cytokines and cortisol), and trajectory of these outcomes differ from NHW BCS at baseline, 6- and 12-month follow-up, controlling for covariates. Aim 2: Examine to what extent social resources mediate BCS’ individual behavior (e.g., medical communication, diet, and physical activity) and to what extent such pathways explain outcome differences (Aim1) among BCS. Aim 3: Examine whether race and acculturation moderate the mediational pathways. Statistical methods: Multiple general linear mixed models will be performed to examine racial differences in the trajectory of symptom and biobehavioral outcomes across time, controlling for covariates (Aim 1). To examine mediation and moderation effects (Aims 2 and 3), we will use a cross-lagged path analysis model to simultaneously describe reciprocal relationships, or directional influences, between variables over time. Present accrual and target accrual: A total of 520 participants (260 CA and 260 NHW) will be enrolled at NYU Perlmutter Cancer Center, Columbia University Irving Medical Center, Georgetown University Medical Center, and Texas A&amp;M University community networks. Contact information: Judy Huei-yu Wang, PhD: jw235@gunet.georgetown.edu or 202-687-6306 Maryann Kwa, MD: maryann.kwa@nyulangone.org or 212-731-6364 Citation Format: Maryann Kwa, Marc Schwartz, Katherine D. Crew, Jeanine M. Genkinger, Roger L. Brown, Leena Hilakivi-Clarke, Joanna Kitlinska, Douglas W. Roblin, Michael Antoni, Sylvia Adams, Kathie-Ann Joseph, Lei-Shih Chen, Judy Huei-yu Wang. A longitudinal investigation of sociocultural and behavioral influences on symptom management, biological response, and functioning among Chinese American and White female breast cancer survivors [abstract]. In: Proceedings of the 2022 San Antonio Breast Cancer Symposium; 2022 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2023;83(5 Suppl):Abstract nr OT3-14-01.

To evaluate a social support intervention that was culturally tailored for Chinese Americans who face many challenges because of cultural and linguistic barriers. Intervention with a one-group pre- or post-test design, mixed methods, and a community-based participatory research (CBPR) approach. Southern California. 14 Chinese American breast cancer survivors post-treatment and eight breast cancer peer mentors. The intervention was a 10-week program to provide emotional and informational support through peer mentoring and education. Health outcomes were assessed before and after the intervention. Eight weekly process evaluations and two focus group interviews also were conducted. Depressive and anxiety symptoms. The program was associated with a decrease in depressive symptoms. Participants valued the program highly. Inductive analysis suggested possible mechanisms for effectiveness, such as reducing stigma, empowerment, and increased sense of belonging. The peer-mentoring and education program has the potential to serve as a model intervention for ethnic minorities. Mixed methods and CBPR are valuable in evaluating pilot interventions with minorities. Focusing on relationships may be fruitful for designing novel interventions for cancer survivors from collectivistic cultures. Peer-mentoring and education programs can be integrated into communities and clinics to improve care for underserved minority cancer survivors and to reduce health disparities.

The present study examined perceived social support as a mediator of the longitudinal link between ambivalence over emotional expression (AEE) and quality of life among a sample of Chinese breast cancer survivors. Ninety-six Chinese breast cancer survivors recruited from Southern California completed four surveys in total: (1) a baseline survey (T1), 1-month follow-up (T2), 3-month follow-up (T3), and 6-month follow-up (T4). Participants filled out a paper-pen questionnaire containing the Ambivalence over Emotional Expression Questionnaire (AEQ), the Functional Assessment of Cancer Therapy-General (FACT-G), and the Medical Outcomes Study Social Support Scale (MOS-SSS). Higher T1 AEE was associated with lower T1 social support (B = -0.01, SE = 0.004, p < 0.01) which in turn was associated with lower quality of life at T2 (B = 2.98, SE = 0.64, p < 0.01), T3 (B = 2.14, SE = 0.54, p < 0.01), and T4 (B = 2.08, SE = 0.68, p < 0.01). These results suggest that the harmful effect of AEE on quality of life is explained by reduced social support. Given the detrimental effects of AEE on social support and quality of life, future research on interventions that facilitate emotional disclosure is needed. Implications for the effects of Chinese culture on AEE are discussed.