Stigma of upper limb lymphoedema following breast cancer surgery: A qualitative study

Stigma of upper limb lymphoedema following breast cancer surgery: A qualitative study | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Stigma of upper limb lymphoedema following breast cancer surgery: A qualitative study fengxia wang, yufan wang, qihao yang, yuxiao wang, meng liu, jinyan li, and 2 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-6581286/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 6 You are reading this latest preprint version Abstract Objective This qualitative study investigated stigma experienced by patients with upper limb lymphedema after breast cancer surgery, aiming to develop effective intervention programs. Methods Fifteen patients with upper limb lymphedema after breast cancer surgery were selected from five third- grade hospitals in Henan Province, China. We conducted semi-structured interviews. Interview data were analyzed using NVivo software after theme extraction by Colaizzi’s seven-step method for data analysis. Results Three main themes and nine subthemes were identified. Theme One encompassed patient experiences of stigma, including self-blame, guilt, low self-esteem, heightened sensitivity, anxiety, worry, and a diminished sense of self-worth. Theme Two considered sources of stigma, including self-related and environmental factors. Theme Three explored additional aspects of patient experiences related to stigma, such as treatment-seeking behaviors, self-acceptance, concealment, and avoidance. Conclusions Stigma faced by patients with upper limb lymphedema following breast cancer surgery primarily stems from alterations in self-perception, poor limb functionality, and emotional experiences of discrimination and isolation from others. Healthcare providers should be attentive to the stigma that their patients may experience. This awareness should guide the implementation of positive strategies to alleviate and manage patients’ experiences of stigma. Breast cancer Upper limbs lymphedema Stigma Qualitative study 1. Introduction Stigma surrounding a specific condition stems from feelings of shame and rejection associated with the illness as well as a sense of societal blame for having a specific condition (Nyblade et al., 2019 ). Research shows that stigma worsens social difficulties for patients, and adversely affects their mental health and overall quality of life (Rewerska-Juśko and Rejdak 2020 ; Economou et al., 2020 ; Oexle et al., 2018 ). Patients with cancer frequently experience stigma. Cross-sectional studies have investigated stigma in postoperative cancer patients, both in China and internationally. These patients faced stigma due to concerns about their bodies, public discrimination, and insufficient social support (Wu et al., 2023 ; Tang et al., 2022 ; Gershfeld-Litvin et al., 2023 ). This stigma was experienced to a moderate degree and seriously affected patients’ quality of life. Breast cancer is the most common malignant tumor in women, with an annual incidence of 2.79 million cases (Katsura et al., 2022 ). It represents 11.7% of new cancer diagnoses globally and poses a significant risk to women’s health and lives. Surgery is one of the primary treatments for breast cancer. Although surgery can prolong life, 4 − 70% of patients who undergo axillary lymph node dissection may develop upper limb lymphedema (Zhang et al., 2021 ). This condition can lead to deformities, swelling, and dysfunction of the affected limbs. Additionally, physical limitations and changes in appearance can lead to negative emotions and social isolation, potentially resulting in stigma. Therefore, studies of stigma in breast cancer patients have analyzed the origins of stigma, patients’ lived experiences, and patients’ coping strategies (Jin et al. , 2021; Park et al. , 2018; Tsaras et al., 2018 ). In particular, studies of stigma have considered breast cancer patients who have undergone surgery. Notably, lymphedema patients face more serious issues such as poor limb functionality, limitations of daily activities, and changes in their physical appearance (Melhem et al., 2023 ; Nyblade et al., 2017 ). Knowledge of the stigma experienced by patients with upper limb lymphedema after breast cancer surgery is very limited. Therefore, this qualitative study explored the characteristics of stigma in patients with upper limb lymphedema following breast cancer surgery. It is anticipated that these insights may contribute to intervention strategies for stigma in this patient population. 2. Design and methods 2.1 Ethics statement 1.1 This study was conducted in accordance with the ethical principles outlined in the Declaration of Helsinki. The protocol was reviewed and approved by the Institutional Ethics Committee of Pingdingshan University (Approval No. ERB2024-0155). Prior to participation, all patients provided written informed consent after receiving a detailed explanation of the study objectives, procedures, and their rights as participants. 2.2 Sample Patients with upper limb lymphedema following breast cancer surgery were selected from five hospitals in Henan Province between August and December 2023. Participants were intentionally selected by purposive sampling. For inclusion in the study, patients were required to be at least 18 years old and to be diagnosed with upper limb lymphedema following breast cancer surgery. Additionally, patients were required to be capable of clear cognitio n and capable of expressing their feelings. Patients had to consent to participate. Patients with a history of psychiatric or psychological conditions were excluded from the study, as well as patients with malignant tumors, infections, or other major chronic illnesses. Data saturation was achieved once no new themes were identified for the patient. However, for the final participant, data saturation was achieved because no further topics could be researched. The participant characteristics are summarized in the following tables.Table 1 . Table 1 General information of patients with upper limb lymphoedema after breast cancer surgery NO gender age marital status No of children Education Surgical procedure postoperative course N1 female Thirty -five Married two Undergraduate Total mastectomy of the left breast + ALND Twenty-four N2 female Fifty Married one Junior High School Breast-conserving surgery for right breast cancer + ALND twenty N3 female Thirty -nine Married Two College Breast-conserving surgery for right breast cancer + ALND Twenty-one N4 female Fifity -one Married one Primary School Total mastectomy of the left breast + ALND twenty N5 female Fifty Married one Junior college Total mastectomy of the left breast + ALND twenty N6 female Forty -eight Married three Primary School Breast-conserving surgery for right breast cancer + ALND twenty N7 female Twenty-nine Single zero Postgraduate Breast-conserving surgery for right breast cancer + ALND twenty N8 female Fifity-five Married two College double mastectomy + ALND nineteen N9 female Fifty Married Two Junior High School Breast-conserving surgery for right breast cancer + ALND Twenty-one N10 female Fifty-three divorcee one Junior High School Breast-conserving surgery for left breast cancer + ALND Twenty-one N11 female Fifty-two Married Two Primary School Breast-conserving surgery for right breast cancer + ALND Twenty-four N12 female Sixty Married Two Junior High School Breast-conserving surgery for right breast cancer + ALND Twenty-three N13 female Sixty-five Widowed three Primary School Total mastectomy of the left breast + ALND Twenty-three N14 female 43 Married Two College Total mastectomy of the left breast + ALND Twenty-nine N15 female 50 Married one Primary School Total mastectomy of the right breast + ALND nineteen ALND: axillary lymph node dissection 2.3 Setting This study utilized a semi-structured interview approach to gather data. Based on a review of existing studies, the researcher formulated an initial interview plan, which was revised by three participants. The interview questions were as follows: (1) What were your reactions to the diagnosis of upper-extremity lymphedema after breast cancer surgery? (2) What were the life changes stemming from the effects of upper limb lymphedema? (3) What were the changes in the attitudes or behaviors of the people around you? and (4) How did you cope with these changes? Prior to the interviews, the researcher informed participants about the study’s purpose, methodology, content, and confidentiality measures. After obtaining the participants’ consent, interviews were conducted in a quiet and private room. Interview content was recorded and transcribed. The interviews lasted between 30 and 60 minutes. 2.4 Data collation Within 24 hours of each interview, the contents were transcribed and organized. Interview recordings were listened to twice. After the first listen, interview content was transcribed. After the second listen, intonation, pauses, and emotional expressions of the participants were noted. Finally, the data were analyzed using the NVivo software and Colaizzi’s seven-step method for data analysis. Participants’ demographic information was organized using Microsoft Excel. 3. Results 3.1 Theme One: Experience of stigma 3.1.1 Self-blame and guilt Most participants reported that lymphedema treatment had a serious economic impact on their family. Family members had to invest more time and energy into participants’ care because of their physical limitations caused by lymphedema. These phenomena contributed to a sense of being a burden for the family, cultivating feelings of self-blame and guilt. Participant N3: “I have spent a lot of money on breast cancer surgery. Now, I still face treatment for upper limb lymphedema. Therefore, I have to continue spending my own money. But, I do not have income. I spend my family’s finances, although the economic conditions are already challenging. This puts salt on an injury. I feel very guilty for my family.” Participant N6: “I not only can’t do anything for my family, but I also depend on family care. I really feel good for nothing.” 3.1.2 Low self-esteem and sensitivity Patients with upper limb lymphedema show noticeable limb asymmetry. Upper limbs require ongoing dressing with compression bandaging, which further contributes to this limb asymmetry. Therefore, patients are more prone to low self-esteem and are sensitive to others’ perceptions. Participant N14 said, “The swollen arm is like an elephant’s leg; it’s quite ugly. I’m hesitant to wear short sleeves in the summer.” Participant N4 stated, “My arm has become bulky since my surgery. Considering this, I’m hesitant to go out. When people look at me, I involuntarily get an impression that they are gossiping about me. It makes me uncomfortable and I feel like a freak.” Participant N7 stated, “When someone asks about my arm, I become tense. I attempt to hide my arm as much as possible. It is like a secret that cannot be exposed.” 3.1.3 Anxiety and concern After breast cancer surgery, physical differences and functional impairments associated with upper limb lymphedema caused anxiety. In particular, patients became excessively worried about functional recovery and the potential risk of stares from others. Participant N1: “I don’t want to go out or meet people because I’m afraid that they will ridicule me upon seeing my arm.” Participant N15, “I can’t stop thinking about whether my hand can recover to its original state. Currently, I cannot do several things in ordinary life, which makes me very fidgety and anxious.” 3.1.4 Reduced sense of personal value Several participants described an impaired ability to fulfill their usual roles because of upper limb lymphedema, including family obligations and professional tasks. Therefore, they cannot function as proper members of the family or realize their personal values. Participant N1: “I go to hospital every day since upper limb lymphedema. I have no time to care for my children. That makes me feel be a good-for-nothing in the family.” Participant N10: “I cannot do anything, not for family or society. I cannot find the meaning of life.” 3.2 Theme Two: origins of stigma 3.2.1 Personal factors The breast, an important secondary sexual characteristic, is resected during surgical breast cancer interventions. Post-mastectomy, patients experience feelings of stigma because of the removal of this physical attribute. Additionally, limb deformity and edema caused by upper limb lymphedema after breast cancer surgery exacerbate stigma. Participant N4: “After the surgery, I lost my breast, I was still able to live healthily. Now, I feel very ugly with the swollen arm.” Participant N7:’ I can’t lift my arm. It is difficult to dress and comb my hair. I feel good-for-nothing.’ 3.2.2 Environmental factors Several participants disclosed that they had encountered discrimination and social exclusion from acquaintances, family members, and work colleagues. Participant N9: “I liked to attend parties in the past, but now I’m afraid to go because some friends chose to distance themselves from me.” Participant N3: “I am unemployed because my workplace believes that I am not capable of performing current job.” Participant N11 revealed, “In work, I try to hide my arm with clothing to avoid my colleagues’ attention. I am fearful of facing their sympathy or stares.” 3.3 Theme Three: m echanisms for stigma 3.3.1 Active treatment engagement Most participants demonstrated that comprehensive treatment of lymphedema not only significantly reduced limb edema but also accelerated the restoration of their physical capabilities. This restoration mitigated negative emotions. Participant N13: “I notice that my arm is less swollen than the initial stage after a period of treatment. I am able to do some household work My mood increasingly improves.” Participant N7: “The nurses provide photographs of other patients’ recovery, which inspires my confidence to diligently persist with treatment. Eventually, I believe I will obtain an optimum recovery. 3.3.2 Embracing self-acceptance Most patients underwent chronic treatment. They constantly adjusted their inner worlds and accepted their current imperfect state. Nevertheless, they expressed optimism for the future. Participant N3: “Initially, it was difficult to accept this situation. Over a longer period of time, I have learned to accept reality and strive to live every day for the future.” Participant N5: “Many difficulties have been experienced. I have accepted the result. I believe there is also hope for my life as long as I live.” 3.3.3 Concealment and evasive behavior Some participants chose to conceal their upper limb lymphedema diagnosis. Participant N14: “No one knows of my condition besides my family. I prefer not to receive their pity or sympathy.” Participant N9: “I am reluctant to participate in social activities because I am fearful that others will discover my illness.” Participant N4:”I rarely leave my house except for necessary hospital visits for treatment.” 4. Discussion Participants who underwent breast cancer surgery and developed upper limb lymphedema were prone to a sense of stigma and negative emotional responses. The condition manifests as limb heaviness, pain, numbness, and stiffness. There are also visible physical changes due to swelling and deformity, which can lead to anxiety, depression, shame, and self-blame (Zhang et al. 2021 ; Torgbenu et al., 2020 ). These emotional responses can result in social isolation and a sense of stigma. This can negatively impact patients’ treatment, overall well-being, and quality of life (Meacham et al. , 2016; Kalemikerakis et al. , 2021). Patients conceal their condition and avoid social activities because of this sense of stigma, which then exacerbates psychological distress and delays recovery. For patients with post-mastectomy upper limb lymphedema, healthcare staff should pay attention to experiences of stigma. Stigma prevention and intervention strategies should be implemented in the early stages of the disease to reduce the incidence of stigma and mitigate its adverse effects. These measures will support functional recovery and enhance the quality of life of patients. This study showed that patients face more discrimination and social alienation in daily life when living with a visible condition like upper limb lymphedema. Patients with HIV/AIDS, diabetes, and mental illnesses cannot be as easily physically distinguished from healthy individuals. However, post-mastectomy upper limb lymphedema produces noticeable physical changes that attract public attention. This can potentially lead to discrimination. With the development of social interventions, healthcare staff should expand the array of communication channels to disseminate positive information about post-mastectomy upper limb lymphedema. This would contribute to correcting misconceptions, reducing discrimination, and creating more accepting social environments for patients. Additionally, it is important to enhance patients’ confidence to manage stigma (Anderson and Fenton, 2022). Healthcare staff should collaborate with family members to implement family based interventions and improve family support to reduce stigma. Furthermore, it is essential to foster a conducive social environment in which the government and healthcare institutions establish policies to safeguard the rights and interests of patients with post-mastectomy upper limb lymphedema (Brunton, 2022 ) The study demonstrated that many patients with post-mastectomy upper limb lymphedema employ active strategies to deal with stigma, including concealment and avoidance. Concealment and avoidance often reduce social activity, leading to increased isolation. This can boost negative emotions such as depression, self-blame, anxiety, and shame. These negative emotions promote stigma and create a vicious cycle. Therefore, healthcare staff should adjust for errors in cognition and assist patients in developing balanced attitudes. Targeted interventions should be designed to eliminate stigma by creating opportunities for patients who have effectively managed stigma to share successful coping strategies. It is necessary to encourage patients to open up about their negative emotions to alleviate their psychological stress and reduce the impact of stigma. 5. Conclusion In patients with post-mastectomy upper limb lymphedema, the experience of stigma is associated with self-related and environmental factors. Most patients adopted positive coping strategies. However, some use concealment and avoidance to cope with the illness, which can increase their psychological burden, postpone functional recovery, and diminish their quality of life. In clinical nursing, healthcare staff should identify stigma in its early stages and develop personal interventions to manage it. Additionally, to alleviate stigma, it is important to create a harmonious social environment, promoting the recovery of limb function, and improving quality of life. Declarations Acknowledgments The authors would like to thank all participants who took part in the interviews, as well as the many individuals who assisted with facilitating the study. Funding This work was supported by Henan Province Medical Education Research Project (WJLX2023155);Research Project on Ideological and Political Work at Pingdingshan College (PXY-SZYJ-202008);2021 Pingdingshan Smart Nursing Key Laboratory Conflict of interests: The authors declared no conflict of interests. Authors ’ contributions Both the authors contributed equally to this study and reviewed the manuscript. Funding The authors received no financial support for the research, authorship, and/or publication of this article. Ethics approval and consent to participate Not applicable. Consent for publication Not applicable. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-6581286","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":468031670,"identity":"67193791-af24-4567-b7d4-6b84c05db789","order_by":0,"name":"fengxia wang","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAAzUlEQVRIiWNgGAWjYBACfvb+B8Z//9jYMbY3EKlFsucMQwFvQ1oyc88BIrUYzMhh+MDbcJixfUYCsVoYcg9ukNyRxsw78/HGGww1NtEEtZgznEs2MDxjwyc5O63YguFYWm4DIS2WjQ1mBglsacyGs3PMJBgbDhPWYnCYwfzHAbbDjPtvniFWyzEeA8PGtsOMjTN4iNQi2cOWYMxwJi2ZsQfolwRi/MIv//iAMUMFKCoPb7zxocaGsBYUR0okkKIcooVUHaNgFIyCUTAyAACqT0KY5rRXnAAAAABJRU5ErkJggg==","orcid":"","institution":"Pingdingshan University","correspondingAuthor":true,"prefix":"","firstName":"fengxia","middleName":"","lastName":"wang","suffix":""},{"id":468031671,"identity":"394093fc-7c63-475b-8141-11a0e10a60a0","order_by":1,"name":"yufan wang","email":"","orcid":"","institution":"Pingdingshan University","correspondingAuthor":false,"prefix":"","firstName":"yufan","middleName":"","lastName":"wang","suffix":""},{"id":468031672,"identity":"aae7eb9c-b1c5-4655-9514-f1593aafb44b","order_by":2,"name":"qihao yang","email":"","orcid":"","institution":"Pingdingshan University","correspondingAuthor":false,"prefix":"","firstName":"qihao","middleName":"","lastName":"yang","suffix":""},{"id":468031673,"identity":"3bbcddd0-da4d-42d0-953c-375f129d6461","order_by":3,"name":"yuxiao wang","email":"","orcid":"","institution":"Pingdingshan University","correspondingAuthor":false,"prefix":"","firstName":"yuxiao","middleName":"","lastName":"wang","suffix":""},{"id":468031674,"identity":"7f20663f-f494-46cb-be94-77d0f2b864d6","order_by":4,"name":"meng liu","email":"","orcid":"","institution":"Pingdingshan University","correspondingAuthor":false,"prefix":"","firstName":"meng","middleName":"","lastName":"liu","suffix":""},{"id":468031677,"identity":"5b176b28-5ae2-4746-908b-66e812f53f98","order_by":5,"name":"jinyan li","email":"","orcid":"","institution":"Pingdingshan University","correspondingAuthor":false,"prefix":"","firstName":"jinyan","middleName":"","lastName":"li","suffix":""},{"id":468031678,"identity":"f9878766-0caa-403a-b087-c3842f5d244d","order_by":6,"name":"jihong wang","email":"","orcid":"","institution":"Pingdingshan University","correspondingAuthor":false,"prefix":"","firstName":"jihong","middleName":"","lastName":"wang","suffix":""},{"id":468031679,"identity":"7656fe85-fde2-49fd-8f9c-90e7f7ba2381","order_by":7,"name":"xichao xia","email":"","orcid":"","institution":"Pingdingshan University","correspondingAuthor":false,"prefix":"","firstName":"xichao","middleName":"","lastName":"xia","suffix":""}],"badges":[],"createdAt":"2025-05-03 01:23:12","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-6581286/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-6581286/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":84214167,"identity":"5e2dc38b-86a0-4c80-b80f-53907d338194","added_by":"auto","created_at":"2025-06-09 10:25:45","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":766889,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6581286/v1/f292eaf9-fc1f-466b-aaab-f713b0858e54.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"\u003cp\u003eStigma of upper limb lymphoedema following breast cancer surgery: A qualitative study\u003c/p\u003e","fulltext":[{"header":"1. Introduction","content":"\u003cp\u003eStigma surrounding a specific condition stems from feelings of shame and rejection associated with the illness as well as a sense of societal blame for having a specific condition (Nyblade et al., \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e2019\u003c/span\u003e). Research shows that stigma worsens social difficulties for patients, and adversely affects their mental health and overall quality of life (Rewerska-Juśko and Rejdak \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e2020\u003c/span\u003e; Economou et al., \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e2020\u003c/span\u003e; Oexle et al., \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e2018\u003c/span\u003e). Patients with cancer frequently experience stigma. Cross-sectional studies have investigated stigma in postoperative cancer patients, both in China and internationally. These patients faced stigma due to concerns about their bodies, public discrimination, and insufficient social support (Wu et al., \u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e2023\u003c/span\u003e; Tang et al., \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e2022\u003c/span\u003e; Gershfeld-Litvin et al., \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e2023\u003c/span\u003e). This stigma was experienced to a moderate degree and seriously affected patients\u0026rsquo; quality of life.\u003c/p\u003e \u003cp\u003eBreast cancer is the most common malignant tumor in women, with an annual incidence of 2.79\u0026nbsp;million cases (Katsura et al., \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e2022\u003c/span\u003e). It represents 11.7% of new cancer diagnoses globally and poses a significant risk to women\u0026rsquo;s health and lives. Surgery is one of the primary treatments for breast cancer. Although surgery can prolong life, 4 \u0026minus;\u0026thinsp;70% of patients who undergo axillary lymph node dissection may develop upper limb lymphedema (Zhang et al., \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e2021\u003c/span\u003e). This condition can lead to deformities, swelling, and dysfunction of the affected limbs. Additionally, physical limitations and changes in appearance can lead to negative emotions and social isolation, potentially resulting in stigma. Therefore, studies of stigma in breast cancer patients have analyzed the origins of stigma, patients\u0026rsquo; lived experiences, and patients\u0026rsquo; coping strategies (Jin \u003cem\u003eet al.\u003c/em\u003e, 2021; Park \u003cem\u003eet al.\u003c/em\u003e, 2018; Tsaras et al., \u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e2018\u003c/span\u003e). In particular, studies of stigma have considered breast cancer patients who have undergone surgery. Notably, lymphedema patients face more serious issues such as poor limb functionality, limitations of daily activities, and changes in their physical appearance (Melhem et al., \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e2023\u003c/span\u003e; Nyblade et al., \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e2017\u003c/span\u003e). Knowledge of the stigma experienced by patients with upper limb lymphedema after breast cancer surgery is very limited. Therefore, this qualitative study explored the characteristics of stigma in patients with upper limb lymphedema following breast cancer surgery. It is anticipated that these insights may contribute to intervention strategies for stigma in this patient population.\u003c/p\u003e"},{"header":"2. Design and methods","content":"\u003cp\u003e \u003cb\u003e2.1 Ethics statement\u003c/b\u003e \u003c/p\u003e \u003cp\u003e1.1 This study was conducted in accordance with the ethical principles outlined in the Declaration of Helsinki. The protocol was reviewed and approved by the Institutional Ethics Committee of Pingdingshan University (Approval No. ERB2024-0155). Prior to participation, all patients provided written informed consent after receiving a detailed explanation of the study objectives, procedures, and their rights as participants.\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003c/ol\u003e\u003c/p\u003e \u003cp\u003e \u003cb\u003e2.2 Sample\u003c/b\u003e \u003c/p\u003e \u003cp\u003ePatients with upper limb lymphedema following breast cancer surgery were selected from five hospitals in Henan Province between August and December 2023. Participants were intentionally selected by purposive sampling. For inclusion in the study, patients were required to be at least 18 years old and to be diagnosed with upper limb lymphedema following breast cancer surgery. Additionally, patients were required to be capable of clear cognitio\u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003en\u003c/span\u003e and capable of expressing their feelings. Patients had to consent to participate. Patients with a history of psychiatric or psychological conditions were excluded from the study, as well as patients with malignant tumors, infections, or other major chronic illnesses.\u003c/p\u003e \u003cp\u003eData saturation was achieved once no new themes were identified for the patient. However, for the final participant, data saturation was achieved because no further topics could be researched. The participant characteristics are summarized in the following tables.Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eGeneral information of patients with upper limb lymphoedema after breast cancer surgery\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"8\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c7\" colnum=\"7\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c8\" colnum=\"8\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNO\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003egender\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eage\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003emarital status\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003eNo of children\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c6\"\u003e \u003cp\u003eEducation\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c7\"\u003e \u003cp\u003eSurgical procedure\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c8\"\u003e \u003cp\u003epostoperative course\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eN1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003efemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eThirty -five\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003etwo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eUndergraduate\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eTotal mastectomy of the left breast\u0026thinsp;+\u0026thinsp;ALND\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eTwenty-four\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eN2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003efemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFifty\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eone\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eJunior High School\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eBreast-conserving surgery for right breast cancer\u0026thinsp;+\u0026thinsp;ALND\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003etwenty\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eN3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003efemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eThirty -nine\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eTwo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eCollege\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eBreast-conserving surgery for right breast cancer\u0026thinsp;+\u0026thinsp;ALND\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eTwenty-one\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eN4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003efemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFifity -one\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eone\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003ePrimary School\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eTotal mastectomy of the left breast\u0026thinsp;+\u0026thinsp;ALND\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003etwenty\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eN5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003efemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFifty\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eone\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eJunior college\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eTotal mastectomy of the left breast\u0026thinsp;+\u0026thinsp;ALND\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003etwenty\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eN6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003efemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eForty -eight\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003ethree\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003ePrimary School\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eBreast-conserving surgery for right breast cancer\u0026thinsp;+\u0026thinsp;ALND\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003etwenty\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eN7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003efemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eTwenty-nine\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eSingle\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003ezero\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003ePostgraduate\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eBreast-conserving surgery for right breast cancer\u0026thinsp;+\u0026thinsp;ALND\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003etwenty\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eN8\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003efemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFifity-five\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003etwo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eCollege\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003edouble mastectomy\u0026thinsp;+\u0026thinsp;ALND\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003enineteen\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eN9\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003efemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFifty\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eTwo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eJunior High School\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eBreast-conserving surgery for right breast cancer\u0026thinsp;+\u0026thinsp;ALND\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eTwenty-one\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eN10\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003efemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFifty-three\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003edivorcee\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eone\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eJunior High School\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eBreast-conserving surgery for left\u003c/p\u003e \u003cp\u003ebreast cancer\u0026thinsp;+\u0026thinsp;ALND\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eTwenty-one\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eN11\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003efemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFifty-two\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eTwo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003ePrimary School\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eBreast-conserving surgery for right breast cancer\u0026thinsp;+\u0026thinsp;ALND\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eTwenty-four\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eN12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003efemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eSixty\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eTwo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eJunior High School\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eBreast-conserving surgery for right breast cancer\u0026thinsp;+\u0026thinsp;ALND\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eTwenty-three\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eN13\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003efemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eSixty-five\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eWidowed\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003ethree\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003ePrimary School\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eTotal mastectomy of the left breast\u0026thinsp;+\u0026thinsp;ALND\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eTwenty-three\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eN14\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003efemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e43\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eTwo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eCollege\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eTotal mastectomy of the left breast\u0026thinsp;+\u0026thinsp;ALND\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eTwenty-nine\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eN15\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003efemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e50\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eone\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003ePrimary School\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eTotal mastectomy of the right breast\u0026thinsp;+\u0026thinsp;ALND\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003enineteen\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"8\"\u003eALND: axillary lymph node dissection\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003e2.3 Setting\u003c/h2\u003e \u003cp\u003eThis study utilized a semi-structured interview approach to gather data. Based on a review of existing studies, the researcher formulated an initial interview plan, which was revised by three participants.\u003c/p\u003e \u003cp\u003eThe interview questions were as follows: (1) What were your reactions to the diagnosis of upper-extremity lymphedema after breast cancer surgery? (2) What were the life changes stemming from the effects of upper limb lymphedema? (3) What were the changes in the attitudes or behaviors of the people around you? and (4) How did you cope with these changes?\u003c/p\u003e \u003cp\u003ePrior to the interviews, the researcher informed participants about the study\u0026rsquo;s purpose, methodology, content, and confidentiality measures. After obtaining the participants\u0026rsquo; consent, interviews were conducted in a quiet and private room. Interview content was recorded and transcribed. The interviews lasted between 30 and 60 minutes.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003e2.4 Data collation\u003c/h2\u003e \u003cp\u003eWithin 24 hours of each interview, the contents were transcribed and organized. Interview recordings were listened to twice. After the first listen, interview content was transcribed. After the second listen, intonation, pauses, and emotional expressions of the participants were noted. Finally, the data were analyzed using the NVivo software and Colaizzi\u0026rsquo;s seven-step method for data analysis. Participants\u0026rsquo; demographic information was organized using Microsoft Excel.\u003c/p\u003e \u003c/div\u003e"},{"header":"3. Results","content":"\u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003e\u003cb\u003e3.1 Theme One: Experience of stigma\u003c/b\u003e\u003c/h2\u003e \u003cdiv id=\"Sec7\" class=\"Section3\"\u003e \u003ch2\u003e3.1.1 Self-blame and guilt\u003c/h2\u003e \u003cp\u003e \u003col\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003eMost participants reported that lymphedema treatment had a serious economic impact on their family. Family members had to invest more time and energy into participants\u0026rsquo; care because of their physical limitations caused by lymphedema. These phenomena contributed to a sense of being a burden for the family, cultivating feelings of self-blame and guilt.\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003eParticipant N3: \u0026ldquo;I have spent a lot of money on breast cancer surgery. Now, I still face treatment for upper limb lymphedema. Therefore, I have to continue spending my own money. But, I do not have income. I spend my family\u0026rsquo;s finances, although the economic conditions are already challenging. This puts salt on an injury. I feel very guilty for my family.\u0026rdquo;\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003eParticipant N6: \u0026ldquo;I not only can\u0026rsquo;t do anything for my family, but I also depend on family care. I really feel good for nothing.\u0026rdquo;\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003c/ol\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec8\" class=\"Section3\"\u003e \u003ch2\u003e3.1.2 Low self-esteem and sensitivity\u003c/h2\u003e \u003cp\u003ePatients with upper limb lymphedema show noticeable limb asymmetry. Upper limbs require ongoing dressing with compression bandaging, which further contributes to this limb asymmetry. Therefore, patients are more prone to low self-esteem and are sensitive to others\u0026rsquo; perceptions.\u003c/p\u003e \u003cp\u003eParticipant N14 said, \u0026ldquo;The swollen arm is like an elephant\u0026rsquo;s leg; it\u0026rsquo;s quite ugly. I\u0026rsquo;m hesitant to wear short sleeves in the summer.\u0026rdquo;\u003c/p\u003e \u003cp\u003eParticipant N4 stated, \u0026ldquo;My arm has become bulky since my surgery. Considering this, I\u0026rsquo;m hesitant to go out. When people look at me, I involuntarily get an impression that they are gossiping about me. It makes me uncomfortable and I feel like a freak.\u0026rdquo;\u003c/p\u003e \u003cp\u003eParticipant N7 stated, \u0026ldquo;When someone asks about my arm, I become tense. I attempt to hide my arm as much as possible. It is like a secret that cannot be exposed.\u0026rdquo;\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec9\" class=\"Section3\"\u003e \u003ch2\u003e3.1.3 Anxiety and concern\u003c/h2\u003e \u003cp\u003eAfter breast cancer surgery, physical differences and functional impairments associated with upper limb lymphedema caused anxiety. In particular, patients became excessively worried about functional recovery and the potential risk of stares from others.\u003c/p\u003e \u003cp\u003eParticipant N1: \u0026ldquo;I don\u0026rsquo;t want to go out or meet people because I\u0026rsquo;m afraid that they will ridicule me upon seeing my arm.\u0026rdquo;\u003c/p\u003e \u003cp\u003eParticipant N15, \u0026ldquo;I can\u0026rsquo;t stop thinking about whether my hand can recover to its original state. Currently, I cannot do several things in ordinary life, which makes me very fidgety and anxious.\u0026rdquo;\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec10\" class=\"Section3\"\u003e \u003ch2\u003e3.1.4 Reduced sense of personal value\u003c/h2\u003e \u003cp\u003eSeveral participants described an impaired ability to fulfill their usual roles because of upper limb lymphedema, including family obligations and professional tasks. Therefore, they cannot function as proper members of the family or realize their personal values.\u003c/p\u003e \u003cp\u003eParticipant N1: \u0026ldquo;I go to hospital every day since upper limb lymphedema. I have no time to care for my children. That makes me feel be a good-for-nothing in the family.\u0026rdquo;\u003c/p\u003e \u003cp\u003eParticipant N10: \u0026ldquo;I cannot do anything, not for family or society. I cannot find the meaning of life.\u0026rdquo;\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003e\u003cb\u003e3.2\u003c/b\u003e Theme Two: \u003cb\u003eorigins of stigma\u003c/b\u003e\u003c/h2\u003e \u003cdiv id=\"Sec12\" class=\"Section3\"\u003e \u003ch2\u003e3.2.1 Personal factors\u003c/h2\u003e \u003cp\u003eThe breast, an important secondary sexual characteristic, is resected during surgical breast cancer interventions. Post-mastectomy, patients experience feelings of stigma because of the removal of this physical attribute. Additionally, limb deformity and edema caused by upper limb lymphedema after breast cancer surgery exacerbate stigma.\u003c/p\u003e \u003cp\u003eParticipant N4: \u0026ldquo;After the surgery, I lost my breast, I was still able to live healthily. Now, I feel very ugly with the swollen arm.\u0026rdquo;\u003c/p\u003e \u003cp\u003eParticipant N7:\u0026rsquo; I can\u0026rsquo;t lift my arm. It is difficult to dress and comb my hair. I feel good-for-nothing.\u0026rsquo;\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section3\"\u003e \u003ch2\u003e3.2.2 Environmental factors\u003c/h2\u003e \u003cp\u003eSeveral participants disclosed that they had encountered discrimination and social exclusion from acquaintances, family members, and work colleagues.\u003c/p\u003e \u003cp\u003eParticipant N9: \u0026ldquo;I liked to attend parties in the past, but now I\u0026rsquo;m afraid to go because some friends chose to distance themselves from me.\u0026rdquo;\u003c/p\u003e \u003cp\u003eParticipant N3: \u0026ldquo;I am unemployed because my workplace believes that I am not capable of performing current job.\u0026rdquo;\u003c/p\u003e \u003cp\u003eParticipant N11 revealed, \u0026ldquo;In work, I try to hide my arm with clothing to avoid my colleagues\u0026rsquo; attention. I am fearful of facing their sympathy or stares.\u0026rdquo;\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003e\u003cb\u003e3.3\u003c/b\u003e Theme Three: m\u003cb\u003eechanisms for stigma\u003c/b\u003e\u003c/h2\u003e \u003cdiv id=\"Sec15\" class=\"Section3\"\u003e \u003ch2\u003e3.3.1 Active treatment engagement\u003c/h2\u003e \u003cp\u003eMost participants demonstrated that comprehensive treatment of lymphedema not only significantly reduced limb edema but also accelerated the restoration of their physical capabilities. This restoration mitigated negative emotions.\u003c/p\u003e \u003cp\u003eParticipant N13: \u0026ldquo;I notice that my arm is less swollen than the initial stage after a period of treatment. I am able to do some household work My mood increasingly improves.\u0026rdquo;\u003c/p\u003e \u003cp\u003eParticipant N7: \u0026ldquo;The nurses provide photographs of other patients\u0026rsquo; recovery, which inspires my confidence to diligently persist with treatment. Eventually, I believe I will obtain an optimum recovery.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec16\" class=\"Section3\"\u003e \u003ch2\u003e3.3.2 Embracing self-acceptance\u003c/h2\u003e \u003cp\u003eMost patients underwent chronic treatment. They constantly adjusted their inner worlds and accepted their current imperfect state. Nevertheless, they expressed optimism for the future.\u003c/p\u003e \u003cp\u003eParticipant N3: \u0026ldquo;Initially, it was difficult to accept this situation. Over a longer period of time, I have learned to accept reality and strive to live every day for the future.\u0026rdquo;\u003c/p\u003e \u003cp\u003eParticipant N5: \u0026ldquo;Many difficulties have been experienced. I have accepted the result. I believe there is also hope for my life as long as I live.\u0026rdquo;\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec17\" class=\"Section3\"\u003e \u003ch2\u003e3.3.3 Concealment and evasive behavior\u003c/h2\u003e \u003cp\u003eSome participants chose to conceal their upper limb lymphedema diagnosis.\u003c/p\u003e \u003cp\u003eParticipant N14: \u0026ldquo;No one knows of my condition besides my family. I prefer not to receive their pity or sympathy.\u0026rdquo;\u003c/p\u003e \u003cp\u003eParticipant N9: \u0026ldquo;I am reluctant to participate in social activities because I am fearful that others will discover my illness.\u0026rdquo;\u003c/p\u003e \u003cp\u003eParticipant N4:\u0026rdquo;I rarely leave my house except for necessary hospital visits for treatment.\u0026rdquo;\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"4. Discussion","content":"\u003cp\u003eParticipants who underwent breast cancer surgery and developed upper limb lymphedema were prone to a sense of stigma and negative emotional responses. The condition manifests as limb heaviness, pain, numbness, and stiffness. There are also visible physical changes due to swelling and deformity, which can lead to anxiety, depression, shame, and self-blame (Zhang et al. \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e2021\u003c/span\u003e; Torgbenu et al., \u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e2020\u003c/span\u003e). These emotional responses can result in social isolation and a sense of stigma. This can negatively impact patients\u0026rsquo; treatment, overall well-being, and quality of life (Meacham \u003cem\u003eet al.\u003c/em\u003e, 2016; Kalemikerakis \u003cem\u003eet al.\u003c/em\u003e, 2021). Patients conceal their condition and avoid social activities because of this sense of stigma, which then exacerbates psychological distress and delays recovery. For patients with post-mastectomy upper limb lymphedema, healthcare staff should pay attention to experiences of stigma. Stigma prevention and intervention strategies should be implemented in the early stages of the disease to reduce the incidence of stigma and mitigate its adverse effects. These measures will support functional recovery and enhance the quality of life of patients.\u003c/p\u003e \u003cp\u003eThis study showed that patients face more discrimination and social alienation in daily life when living with a visible condition like upper limb lymphedema. Patients with HIV/AIDS, diabetes, and mental illnesses cannot be as easily physically distinguished from healthy individuals. However, post-mastectomy upper limb lymphedema produces noticeable physical changes that attract public attention. This can potentially lead to discrimination. With the development of social interventions, healthcare staff should expand the array of communication channels to disseminate positive information about post-mastectomy upper limb lymphedema. This would contribute to correcting misconceptions, reducing discrimination, and creating more accepting social environments for patients. Additionally, it is important to enhance patients\u0026rsquo; confidence to manage stigma (Anderson and Fenton, 2022). Healthcare staff should collaborate with family members to implement family based interventions and improve family support to reduce stigma. Furthermore, it is essential to foster a conducive social environment in which the government and healthcare institutions establish policies to safeguard the rights and interests of patients with post-mastectomy upper limb lymphedema (Brunton, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2022\u003c/span\u003e)\u003c/p\u003e \u003cp\u003eThe study demonstrated that many patients with post-mastectomy upper limb lymphedema employ active strategies to deal with stigma, including concealment and avoidance. Concealment and avoidance often reduce social activity, leading to increased isolation. This can boost negative emotions such as depression, self-blame, anxiety, and shame. These negative emotions promote stigma and create a vicious cycle. Therefore, healthcare staff should adjust for errors in cognition and assist patients in developing balanced attitudes. Targeted interventions should be designed to eliminate stigma by creating opportunities for patients who have effectively managed stigma to share successful coping strategies. It is necessary to encourage patients to open up about their negative emotions to alleviate their psychological stress and reduce the impact of stigma.\u003c/p\u003e"},{"header":"5. Conclusion","content":"\u003cp\u003eIn patients with post-mastectomy upper limb lymphedema, the experience of stigma is associated with self-related and environmental factors. Most patients adopted positive coping strategies. However, some use concealment and avoidance to cope with the illness, which can increase their psychological burden, postpone functional recovery, and diminish their quality of life. In clinical nursing, healthcare staff should identify stigma in its early stages and develop personal interventions to manage it. Additionally, to alleviate stigma, it is important to create a harmonious social environment, promoting the recovery of limb function, and improving quality of life.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eAcknowledgments\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors would like to thank all participants who took part in the interviews, as well as the many\u0026nbsp;individuals who assisted with facilitating the study.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis work was supported by\u0026nbsp;Henan Province Medical Education Research Project\u0026nbsp;(WJLX2023155);Research Project on Ideological and Political Work at Pingdingshan College (PXY-SZYJ-202008);2021 Pingdingshan Smart Nursing Key Laboratory\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConflict of interests:\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declared no conflict of interests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u003c/strong\u003e\u003cstrong\u003e\u0026rsquo; contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eBoth the authors contributed equally to this study and reviewed the\u0026nbsp;\u003c/p\u003e\n\u003cp\u003emanuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors received no financial support for the research, authorship, and/or publication of this article.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eANDERSON J, FENTON K.2022. 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Rev Breast Cancer Pathologigcal Image Process BioMed Res Int. 2021;1994764. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1155/2021/1994764\u003c/span\u003e\u003cspan address=\"10.1155/2021/1994764\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-womens-health","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bmwh","sideBox":"Learn more about [BMC Women's Health](http://bmcwomenshealth.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bmwh/default.aspx","title":"BMC Women's Health","twitterHandle":"","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Breast cancer, Upper limbs lymphedema, Stigma, Qualitative study","lastPublishedDoi":"10.21203/rs.3.rs-6581286/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-6581286/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eObjective\u003c/h2\u003e \u003cp\u003eThis qualitative study investigated stigma experienced by patients with upper limb lymphedema after breast cancer surgery, aiming to develop effective intervention programs.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eFifteen patients with upper limb lymphedema after breast cancer surgery were selected from five third- grade hospitals in Henan Province, China. We conducted semi-structured interviews. Interview data were analyzed using NVivo software after theme extraction by Colaizzi\u0026rsquo;s seven-step method for data analysis.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eThree main themes and nine subthemes were identified. Theme One encompassed patient experiences of stigma, including self-blame, guilt, low self-esteem, heightened sensitivity, anxiety, worry, and a diminished sense of self-worth. Theme Two considered sources of stigma, including self-related and environmental factors. Theme Three explored additional aspects of patient experiences related to stigma, such as treatment-seeking behaviors, self-acceptance, concealment, and avoidance.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e \u003cp\u003eStigma faced by patients with upper limb lymphedema following breast cancer surgery primarily stems from alterations in self-perception, poor limb functionality, and emotional experiences of discrimination and isolation from others. Healthcare providers should be attentive to the stigma that their patients may experience. This awareness should guide the implementation of positive strategies to alleviate and manage patients\u0026rsquo; experiences of stigma.\u003c/p\u003e","manuscriptTitle":"Stigma of upper limb lymphoedema following breast cancer surgery: A qualitative study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-06-09 10:09:36","doi":"10.21203/rs.3.rs-6581286/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"reviewerAgreed","content":"223714433766592325397049547446401698973","date":"2025-06-05T17:53:03+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-06-05T04:36:29+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2025-05-16T17:01:34+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-05-16T06:56:30+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-05-16T06:49:44+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Women's Health","date":"2025-05-03T01:14:11+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-womens-health","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bmwh","sideBox":"Learn more about [BMC Women's Health](http://bmcwomenshealth.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bmwh/default.aspx","title":"BMC Women's Health","twitterHandle":"","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"00f244ee-9288-400a-be43-29aa9a5ac528","owner":[],"postedDate":"June 9th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2025-06-09T10:09:36+00:00","versionOfRecord":[],"versionCreatedAt":"2025-06-09 10:09:36","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-6581286","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-6581286","identity":"rs-6581286","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}