Open-access Effect of stigma on family relationship and loneliness in breast cancer patients

Abstract

Objective:  To explore the mediating effect of stigma between family relationship and loneliness in breast cancer patients.

Methods:  A total of 339 breast cancer patients were selected using a convenience sampling method from eight hospitals in Anhui Province and surveyed using the Family Caring Index questionnaire, Social Impact Scale, and UCLA Loneliness Scale from December 2021 to July 2022.

Results:  Univariate analysis showed significant differences in family relationship scores according to age (years), body mass index (BMI), education, work status, marital status, time since surgery (years), and adherence to functional exercise of the affected limb after surgery (all P < 0.05). Pearson correlation analysis showed that family relationship was significantly negatively correlated with stigma and loneliness (P < 0.01), and loneliness and stigma were significantly positively correlated (P < 0.01). There was a partial mediating effect of stigma between family relationship and loneliness, and its mediating effect accounted for 34.63% of the total effect.

Conclusion:  Family relationship indirectly affects loneliness in breast cancer patients through stigma. This suggests that care workers should pay attention to family relationship due to its importance for patients’ recovery, increase intra-family resources to enhance the level of family resilience, and seek to reduce stigma related to patients’ illness, thereby reducing the experience of loneliness.

Resumo

Objetivo:  Explorar o efeito mediador do estigma entre o relacionamento familiar e a solidão em pacientes com câncer de mama.

Métodos:  Um total de 339 pacientes com câncer de mama foram selecionadas usando um método de amostragem de conveniência em oito hospitais na província de Anhui e pesquisados usando o questionário Family Caring Index, Social Impact Scale e UCLA Loneliness Scale de dezembro de 2021 a julho de 2022.

Resultados:  A análise univariada mostrou diferenças significativas nas pontuações de relacionamento familiar de acordo com a idade (anos), Índice de Massa Corporal (IMC), educação, situação de trabalho, estado civil, tempo desde a cirurgia (anos) e adesão ao exercício funcional do membro afetado após a cirurgia (todos P < 0,05). A análise da correlação de Pearson mostrou que o relacionamento familiar foi significativamente correlacionado negativamente com o estigma e a solidão (P < 0,01), e a solidão e o estigma foram significativamente correlacionados positivamente (P < 0,01). Houve um efeito mediador parcial do estigma entre o relacionamento familiar e a solidão, e seu efeito mediador foi responsável por 34,63% do efeito total.

Conclusão:  O relacionamento familiar afeta indiretamente a solidão em pacientes com câncer de mama por meio do estigma. Isso sugere que os profissionais de saúde devem prestar atenção ao relacionamento familiar devido à sua importância para a recuperação dos pacientes, aumentar os recursos intrafamiliares para aumentar o nível de resiliência familiar e buscar reduzir o estigma relacionado à doença dos pacientes, reduzindo assim a experiência de solidão.

Descritores
Neoplasias da mama; Solidão; Relações familiares; Estigma social

Resumen

Objetivo:  Estudiar el efecto mediador del estigma entre el relación familiar y en la soledad de pacientes con cáncer de mama.

Métodos:  Fueron seleccionadas 339 pacientes con cáncer de mama utilizando un método de muestro por conveniencia en ocho hospitales de la provincia de Anhui. Para la investigación se utilizó el cuestionario Family Caring Indexy las escalas Social Impact Scale y UCLA Loneliness Scale de diciembre de 2021 a julio de 2022.

Resultados:  El análisis univariado mostró diferencias significativas en el puntaje de la relación familiar de acuerdo con la edad (años), el índice de masa corporal (IMC), la educación, la situación laboral, el estado civil, el tiempo desde la cirugía (años) y la adhesión al ejercicio funcional del miembro afectado después de la cirugía (todos P<0,05). El análisis de la correlación de Pearson demostró que la relación familiar tuvo una correlación significativa negativa con el estigma y la soledad (P<0,01), y la soledad y el estigma tuvieron una correlación significativa positiva (P<0,01). Hubo un efecto mediador parcial del estigma entre el funcionamiento familiar y la soledad, y su efecto mediador fue responsable del 34,63 % del efecto total.

Conclusion:  La relación familiar afecta indirectamente a la soledad de pacientes con cáncer de mama por medio del estigma. Esto sugiere que los profesionales de la salud deben prestar atención a la relación familiar debido a su importancia para la recuperación de las pacientes, aumentar los recursos intrafamiliares para aumentar el nivel de resiliencia familiar y buscar reducir el estigma relacionado con la enfermedad de los pacientes, y así reducir la experiencia de soledad.

Descriptores
Neoplasias da la mama; Soledad; Relaciones familiares; Estigma social

Introduction

According to the most recent global cancer statistics, female breast cancer has become the most common cancer worldwide, with about 2,261,000 new cases (11.6%) and accounting for over 685,000 deaths (6.9%).(1) China recorded approximately 416,000 female breast cancer cases in 2020, accounting for 18.6% of the global breast cancer population.(2)

Studies have shown that individuals often experience negative emotions, such as loneliness and stigma, after being diagnosed with cancer. Loneliness is defined as a subjective, negative experience resulting from discrepancies between expected and actual perceived social relationships or expectations.(3, 4) Stigma is an internal experience of shame related to illness and an attribute that conveys negative stereotypes and psychological stress. Thus, patients often feel shame due to altered body image caused by surgery and radiotherapy, leading them to withdraw both psychologically and socially.(5) This tendency is more pronounced in the Chinese culture, where people are often subtle and introverted. Therefore, female breast cancer patients often feel hesitant to openly express their true emotions about their cancer diagnosis, exacerbating their sense of isolation.(6) Family relationship can provide more assistance, encouragement, and support among family members, creating an environment conducive to healthy physical, mental, and social development.(7) Studies have shown that improving patients’ family relationship is a priority strategy for improving mental health, which can influence individual health status and disease onset and regression, reduce the experience of stigma and isolation, and promote full recovery.(8, 9) However, little is known about the relationship between family relationship, stigma, and loneliness in breast cancer patients, and the pathways of action between the factors remain unclear.

Therefore, this study aimed to investigate the levels of family relationship, stigma, and loneliness in breast cancer patients and to further explore the mediating effect of stigma in the relationship between family relationship and loneliness in breast cancer patients.

Methods

A total of 339 breast cancer patients attending eight hospitals in Anhui Province were selected as the study population using a convenience sampling method from December 2021 to July 2022.The inclusion criteria were as follows: (1) breast cancer patients who had undergone unilateral or bilateral mastectomy in accordance with the Guidelines and Norms for the Diagnosis and Treatment of Breast Cancer of the Chinese Anti-Cancer Association (2021 edition)(10); (2) age ≥ 18 years; (3) the ability to speak and read Mandarin; (4) patients who gave informed consent and voluntarily participated in this study. The exclusion criteria were as follows: (1) those with other malignant tumors; (2) those with severe cardiopulmonary abnormalities.

The cover page of the questionnaire explained the research purpose and procedure. Participants signed an informed consent form before filling out the questionnaire. The participants personally completed the questionnaires in a quiet place, and the investigators provided any necessary explanations. The questionnaires were checked at the study site for completeness by the investigators. A total of 339 eligible breast cancer patients were invited to participate, and 12 questionnaires were excluded (questionnaire with inconsistent answer options and more than 2/3 missing answers). Overall, 327 (96.46%) valid questionnaires were analyzed.

Participants’ demographic and disease-related characteristics included in the study were age, body mass index (BMI), education level, family residence, per capita monthly household income, work status, marital status, time since surgery, mode of payment for medical expenses, whether a prosthesis had previously been worn, the location of the mastectomy, adherence to functional exercise after the surgery, and presence of lymphoedema in the upper limb of the affected side.

In 2000, a scale was developed by Fife and Wright to evaluate stigma among cancer patients and AIDS patients, with a Cronbach’s alpha coefficient of 0.850∼0.900 for each dimension. In 2007, Pan et al. (scholars in Taiwan and China), translated it into Chinese to assess patients with depression, schizophrenia, and AIDS, showing a scale Cronbach’s alpha coefficient of 0.990. Jin et al. surveyed 103 breast cancer patients using this scale, with a Cronbach’s alpha coefficient of 0.954.

This questionnaire contains the following four domains: economic discrimination (3 items), social exclusion (9 items), internal shame (5 items), and social isolation (7 items), with a total of 24 items. A 4-point Likert scale was used, with scores from 1 to 4 indicating “strongly agree,” “agree,” “disagree,” and “strongly disagree,” respectively. The higher the score, the greater the perceived social influence and the stronger the sense of shame.

The APGAR was developed by Gabriel in 1978 and introduced to China by Lv et al. in 1999. It was used for assessing family relationship in all age groups above adolescence, with a Cronbach’s alpha coefficient of 0.830. The questionnaire included five items, including family adjustment, cooperation, length, emotionality, and closeness. Each item was scored on a 3-point scale, in which “often” was scored as 2, “sometimes” as 1, and “almost never” as 0. The overall scale scores ranged from 0 to 10, and the higher the score, the better the family function.

Russell et al. developed the UCLA Loneliness Scale in 1988. In this study, the Chinese version of this scale by Wang et al. was used to assess loneliness caused by the discrepancy between individuals’ desire for social interaction and their real situation. The scale consists of 20 items on a 4-point Likert scale, with scores from 1 to 4 indicating “never,” “rarely,” “sometimes,” and “always,” respectively. The total score range is 20-80, with higher scores indicating higher levels of loneliness.

SPSS for Windows 10, version 25.0 (IBM Corp., Armonk, NY, USA) was used for data analysis. Continuous variables were summarized as mean ± standard deviation and categorical variables number and percentages. Pearson correlation test was used for correlation analysis. Independent samples t-test and ANOVA analysis were used for continuous data that followed a normal distribution, and chi-squared test for categorical data. The Bootstrap method of SPSS was used to verify the mediating effect of stigma between family relationship and loneliness in breast cancer patients, and a significant difference was considered at P < 0.05.

The study protocol was approved by the ethics committees of Fuyang City People’s Hospital [2022-22 & 2022-71]. Before enrolment in the study, eligible participants signed a consent form. After the survey was completed, all data were stored anonymously (without names or identifying information) to protect participants’ confidentiality. Participants had the right to decide whether to participate in the study and could withdraw from the study at any time.

Results

A total of 327 breast cancer patients were included in this study, with a mean age of 48.67± 9.64 years. There were significant differences in family function scores by age, BMI, education level, work status, marital status, time since surgery, and adherence to functional exercise of the affected limb after surgery (all P < 0.05). Patients who were young and in middle age, currently employed, had a high education level, and those within 1–3 years after surgery had poor family relationship. Patients with high BMI, those who were married, and those with regular exercise had better family relationship (Table 1).

Table 1
Univariate analysis of family relationship in breast cancer patients with different characteristics (n=327)

The mean family relationship score in breast cancer patients was 7.24 ± 3.48. The mean total stigma score was 60.30 ± 12.25, with economic discrimination dimension score of 8.42 ± 1.88, social exclusion dimension score of 21.36 ± 4.96, internal shame dimension score of 12.65 ± 2.94, and social isolation dimension score of 17.87 ± 4.02. The mean loneliness score was 44.76 ± 8.22. Pearson correlation analysis showed a significant negative correlation between family relationship and stigma (economic discrimination, social exclusion, internal shame, social isolation) (r = −0.169, −0.206, −0.220, −0.237, P < 0.01); a significant negative correlation between family relationship and loneliness (r = −0.298, P < 0.01); and a significant positive correlation between loneliness and stigma (economic discrimination, social exclusion, internalized shame, and social isolation) (r = 0.290, 0.457, 0.438, 0.436,p < 0.01) (Table 2).

Table 2
Correlation analysis of family relationship, stigma, and loneliness in breast cancer patients

The mediating effect between family function, stigma, and loneliness in breast cancer patients is shown in table 3, and the model of mediating effect is shown in figure 1. The results showed a partial mediating effect of stigma between family function and loneliness, and that the ratio of the mediating effect to the total effect was 34.63% [a × b/c = (−0.240) × 0.430/(−0.298) × 100% = 34.63%]. This indicates that the predicted effect of family function on 34.63% of the predicted effect of loneliness was indirectly influenced through stigma.

Table 3
Mediating effect model test of stigma

Figure 1
Mediating effect model of stigma

Discussion

In this study, the family relationship score of breast cancer patients was found to be 7.24 ± 3.48, which is slightly lower than the findings of He et al.(12) Patients who were young or middle-aged, currently employed, had a high education level, and those within 1–3 years after surgery had poor family relationship. The reason may be that young and middle-aged women are often advancing in their careers, and highly educated patients tend to have higher-paid job. It is evident that young and middle-aged women, as well as highly educated patients, often serve as the main breadwinners of their family. They bear the responsibility of sustaining stable family dynamics and providing the things needed for family survival and development. Thus, when these individuals become ill, their family economic situation tends to deteriorate.(13) Patients within 1 to 3 years after surgery have a fear of cancer recurrence because they have to continuously undergo chemotherapy and radiotherapy as part of their follow-up.(14) Moreover, patients’ families may not fully understand the importance of caring for patients at home in the short term, thus leading to a lower level of family relationship. Patients with a high BMI, those who are married, and those who engage in regular exercise had better family relationship. This may be related to the fact that they have more opportunities to eat and communicate with their families and are more willing to perform physical exercise.(15) A good marital relationship is the basis for maintaining good family relationship, as patients can obtain help from their spouses when they encounter difficulties and receive support when they intend to pursue new activities or jobs.(16)

In this study, we found that the mean loneliness score of the 327 breast cancer patients (44.76 ± 8.22) was negatively correlated with family relationship (r < 0.01), and that patients’ family relationship could directly contribute to loneliness. Breast cancer patients (especially those in active treatment after mastectomy) often present with poor physical imagery, such as missing asymmetrical breasts and breast cancer-related lymphedema (BCRL). When combined with the fear of cancer recurrence throughout survival, this can lead to a shift in patients’ family roles and behaviors, resulting in imbalance in the family system and weakened family relationship.(17, 18) The family relationship systems model theory suggests that family relationship is closely related to interfamilial relationships and interaction styles.(19) In a dysfunctional family environment, individuals may exhibit doubts about themselves and the world around them due to unmet psychological needs, develop anxiety, and exhibit behaviors changes such as avoidance and withdrawal, which can hinder their development of good interpersonal relationships and individual socialization and generate a sense of isolation.(20) Therefore, it is recommended that nursing workers should fully understand the patient’s family relationship structure (work status, marital status, etc.), promptly assess the patient’s family relationship status, and provide targeted care for their shortcomings and weaknesses in order to enhance the level of family relationship and reduce individual loneliness in breast cancer patients.

In this study, we found that 327 breast cancer patients had an overall moderate-to-high stigma score of 60.30 ± 12.25. As a chronic disease, breast cancer has a relatively long treatment period, and the high cost of treatment tends to compromise the living standards of the patients’ family. Thus, patients are prone to having feelings of guilt and self-blame, which triggers a sense of shame. Also, the differences in behavioral awareness and economic level resulting from the differences in education level leads to the lack of resources for communication with the outside world, which, in turn, leads to loneliness among patients. This study showed that stigma partially mediated the effect between family relationship and loneliness in breast cancer patients, with the mediating effect accounting for 34.63% of the total effect. Patients with good family relationships can receive more encouragement and support from their families, and the emotional comfort and emotional guidance among family members will diminish the stigma associated with the patient’s disease treatment, thus prompting the patient to develop self-confidence and positive coping strategies, actively seek belonging resources, and thus reduce the feeling of loneliness.(21) Studies have shown that stigma, a negative psychological phenomenon, has an adverse impact on patients’ body and mind.(5) Reducing the experience of stigma does not only strengthen patients’ understanding of the disease but also helps them to adapt to the change of family roles, establish a new family division of labor and responsibility sharing pattern,(7) and to improve family functions. It can also improve the level of social participation, enhance social adaptability, and reduce loneliness.(4) Therefore, it is recommended that the state appropriately adjusts relevant policies to provide patients with more financial support and subsidies, while calling on the community to pay attention to breast cancer patients as a vulnerable group and form a support network between the hospital, family, and society.(22) Patients are encouraged to be bold in expressing themselves when they need more support. This will enable them to have a sense of security and belonging, identify better emotional self-regulation strategies, and thus reduce the sense of shame and isolation.(23)

This study not only demonstrated the mediating role of stigma between family function and loneliness of breast cancer patients and clarified the relationship between the three, but also provided a basis for developing practical scientific health guidance programs and interventions for improving the mental health and quality of life of breast cancer patients. However, this study had some limitations. First, the degree of family relationship was not grouped hierarchically, and it is important to determine family relationship hierarchy in the future to facilitate an in-depth study. Second, due to the limitations of the study population, the generalizability of the mediating effect model are also limited, and it is necessary to expand the study population and conduct multicenter and longitudinal studies in the future to explore the trajectory changes of loneliness in the breast cancer group. Third, stigma was not fully mediated between family relationship and loneliness in breast cancer patients, and the R2 value was not high. Thus, further analysis need to be conducted in the future taking into account depression, self-perceived burden, social isolation, and other factors.(24, 25)

Conclusion

Breast cancer patients have higher levels of stigma and loneliness, and family relationship negatively predicts stigma and loneliness. Our findings also confirmed that stigma plays a partially mediating role between family relationship and loneliness in breast cancer patients. It is recommended that nursing workers should pay attention to family relationship due to its importance for patients’ recovery, increase intra-family resources to enhance the level of family resilience, and reduce stigma related to patients’ illness, thus alleviating the experience of loneliness.

Acknowledgments

This project was supported by the Key Research and Development Program of Anhui Province in 2018 (Project no. 1804H08020269); 2019 Fuyang City Health Commission scientific research Project (project no. FY2019-044).

References

  • 1 Sung H, Ferlay J, Siegel RL, Laversanne M, Soerjomataram I, Jemal A, et al. Global Cancer Statistics 2020: GLOBOCAN Estimates of Incidence and Mortality Worldwide for 36 Cancers in 185 Countries. CA Cancer J Clin. 2021;71(3):209–49.
  • 2 Cao W, Chen HD, Yu YW, Li N, Chen WQ. Changing profiles of cancer burden worldwide and in China: a secondary analysis of the global cancer statistics 2020. Chin Med J (Engl). 2021;134(7):783–91.
  • 3 Hill EM, Frost A. Loneliness and psychological distress in women diagnosed with ovarian cancer: examining the role of self-perceived burden, social support seeking, and social network diversity. J Clin Psychol Med Settings. 2022;29(1):195–205.
  • 4 Hawkley LC, Cacioppo JT. Loneliness matters: a theoretical and empirical review of consequences and mechanisms. Ann Behav Med. 2010;40(2):218–27.
  • 5 Hinzey A, Gaudier-Diaz MM, Lustberg MB, DeVries AC. Breast cancer and social environment: getting by with a little help from our friends. Breast Cancer Res. 2016;18(1):54.
  • 6 Sarkar S, Sautier L, Schilling G, Bokemeyer C, Koch U, Mehnert A. Anxiety and fear of cancer recurrence and its association with supportive care needs and health-care service utilization in cancer patients. J Cancer Surviv. 2015;9(4):567–75.
  • 7 Zhang Y. Family functioning in the context of an adult family member with illness: A concept analysis. J Clin Nurs. 2018;27(15-16):3205–24.
  • 8 Cheng Y, Zhang L, Wang F, Zhang P, Ye B, Liang Y. The effects of family structure and function on mental health during China’s transition: a cross-sectional analysis. BMC Fam Pract. 2017;18(1):59.
  • 9 Ahlberg M, Hollman Frisman G, Berterö C, Ågren S. Family health conversations create awareness of family functioning. Nurs Crit Care. 2020;25(2):102–8.
  • 10 Breast Cancer Expert Committee of National Cancer Quality Control Center; Breast Cancer Expert Committee of China Anti-Cancer Association; Cancer Drug Clinical Research Committee of China Anti-Cancer Association. [Guidelines for clinical diagnosis and treatment of advanced breast cancer in China (2022 edition)]. Zhonghua Zhong Liu Za Zhi. 2022;44(12):1262–87.
  • 11 Jin R, Xie T, Zhang L, Gong N, Zhang J. Stigma and its influencing factors among breast cancer survivors in China: A cross-sectional study. Eur J Oncol Nurs. 2021;52:101972.
  • 12 He C, Yang T, He Y, Guo S, Lin Y, Wu C, et al. Relationship between family functioning and self-transcendence in patients with breast cancer: A network analysis. Front Public Health. 2022;10:1028860.
  • 13 Bao J, Greder K. Economic pressure and parent acculturative stress: effects on rural midwestern low-income latinx child behaviors. J Fam Econ Issues. 2023;44(2):490–501.
  • 14 Utter J, Larson N, Berge JM, Eisenberg ME, Fulkerson JA, Neumark-Sztainer D. Family meals among parents: associations with nutritional, social and emotional wellbeing. Prev Med. 2018;113:7–12.
  • 15 Luigjes-Huizer YL, Tauber NM, Humphris G, Kasparian NA, Lam WW, Lebel S, et al. What is the prevalence of fear of cancer recurrence in cancer survivors and patients? A systematic review and individual participant data meta-analysis. Psychooncology. 2022;31(6):879–92.
  • 16 Wu ZB, Han XW, Lan LJ, et al. Analysis of family function status and influencing factors in young and middle-aged hemodialysis patients. Nurs Manag China. 2019;19(12):1816–21.
  • 17 Hoyle E, Kilbreath S, Dylke E. Body image and sexuality concerns in women with breast cancer-related lymphedema: a cross-sectional study. Support Care Cancer. 2022;30(5):3917–24.
  • 18 Veenstra CM, Braun TM, Abrahamse PH, Wittmann D, Hawley ST. Employment outcomes in family supporters of patients with early stage breast cancer and their association with patients’ health-related quality of life and financial burden. Cancer Med. 2022;11(5):1324–35.
  • 19 Beavers R, Hampson RB. The Beavers systems model of family functioning. J Fam Ther. 2000;22(2):128–43.
  • 20 Yang Y, Lin Y, Sikapokoo GO, Min SH, Caviness-Ashe N, Zhang J, et al. Social relationships and their associations with affective symptoms of women with breast cancer: A scoping review. PLoS One. 2022;17(8):e0272649.
  • 21 Nam B, Kim JY, DeVylder JE, Song A. Family functioning, resilience, and depression among North Korean refugees. Psychiatry Res. 2016;245:451–7.
  • 22 Stergiou-Kita M, Grigorovich A, Tseung V, Milosevic E, Hebert D, Phan S, et al. Qualitative meta-synthesis of survivors’ work experiences and the development of strategies to facilitate return to work. J Cancer Surviv. 2014;8(4):657–70.
  • 23 Pluta M. Online Self-Disclosure and Social Sharing of Emotions of Women with Breast Cancer Using Instagram-Qualitative Conventional Content Analysis. Chronic Illn. 2022;18(4):834–48.
  • 24 Zhang Y, Li X, Bi Y, Kan Y, Liu H, Liu L, et al. Effects of family function, depression, and self-perceived burden on loneliness in patients with type 2 diabetes mellitus: a serial multiple mediation model. BMC Psychiatry. 2023;23(1):636.
  • 25 He C, Wu C, He Y, Yan J, Lin Y, Wan Y, et al. Characteristics and influencing factors of social isolation in patients with breast cancer: a latent profile analysis. Support Care Cancer. 2023;31(6):363.

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Publication Dates

  • Publication in this collection
    28 Mar 2025
  • Date of issue
    2025

History

  • Received
    04 Jan 2024
  • Accepted
    28 Aug 2024
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