Lymphedema is a clinical expression caused by the block of lymphatic circulation, often due to the consequence of trauma, radiation damage, or surgical intervention. Breast cancer is the most common etiology of lymphedema [1, 2], contributing to breast cancer-related lymphedema (BCRL). Although it is difficult to estimate the precise incidence of BCRL, axillary surgery undoubtedly plays a significant role [2, 3], with the incidence increasing from 6–8% to 13–15% [3, 4]. According to the consensus of the International Society of Lymphology [5], the classification of BCRL is described as four stages (from Stage 0 to Stage III). In Stage II, changes occur in solid structures, which remain spontaneously irreversible, with pitting becoming evident. Treatment for BCRL is recommended to be initiated as early as possible, as the condition becomes irreversible in its advanced stages. It should be noted that the treatment of BCRL often requires strict adherence to lifelong care and ongoing therapy, as BCRL often develops into a chronic condition. Therefore, as breast cancer survivors live longer, the issue of BCRL should not be overlooked. Additionally, breast cancer survivors with lymphedema (BCSWL) require more psychosocial support to alleviate suffering associated with BCRL and improved their quality of life. However, there is a lack of adequate study on this topic.

Social factors are increasingly recognized as being associated with various diseases, particularly chronic conditions, and the nature of social relationships has been linked to cancer outcomes, including quality of life and survival. In general, social relationships contribute to health by providing support, fostering a sense of belonging, and enhancing personal identity. Specifically, the Women’s Health Initiative has highlighted an association between social relationships and breast cancer outcomes [6]. A longitudinal study by Shrout et al. [6] demonstrated that satisfaction with social support can significantly affect breast cancer survivorship, a finding consistent with the cohort study by Vaz et al. [7]. In this way, understanding the psychosocial challenges faced by breast cancer survivors is essential for providing comprehensive healthcare. Furthermore, psychosocial factors are particularly relevant for BCSWL. A review of 23 articles by Fu et al. [8] reported a strong association between psychosocial factors and BCRL, particularly in terms of survivorship and self-management. This finding aligns with the results of a qualitative review [9].

Currently, existing literature addressing the concept of social elements in BCSWL primarily focuses on aspects such as body image, social support, and stigma, while rarely exploring the relevant experiences associated with social relationships. Besides, according to social exchange theory, the concept of social relationships extends beyond social support, which is defined as a reciprocal relationship in which individuals collaborate to achieve mutual or personal goals. The notion of reciprocity is particularly emphasized within social relationships and is crucial for the BCSWL population as they reintegrate into everyday life. This is especially important considering that BCRL is a lifelong condition, and BCSWL are relatively younger than other cancer survivors. Many BCSWL express a strong desire to return to a normal life, particularly concerning work and sexual behavior. Research indicates that BCSWL who wish to return to work face both direct and indirect barriers [10, 11]. Indeed, approximately 58% report difficulties in their sexual relationships, which negatively affects women’s perceptions of their body image and contributes to low self-esteem. Therefore, it is essential to understand the experiences of BCSWL, explore the nuanced differences among them, and provide necessary support to facilitate their transition to regular life within diverse social relationships. The aim of this qualitative review is to systematically integrate the experiences of BCSWL across various social contexts, analyze their feelings to inform future healthcare services, and provide a reference for developing effective self-management strategies for BCSWL.

The qualitative systematic study followed the meta-aggregation approach of the Joanna Briggs Institute [12]. The study protocol was registered in PROSPERO (registration number: CRD42024541249) and meta-synthesized the available evidence on the experiences of patients with BCRL.

In the 14 included studies [11, 13, 14, 15, 16, 17, 18, 19, 20, 21, 22, 23, 24, 25], 54 findings were identified and classified. These findings were aggregated into 12 categories based on similar meanings and further synthesized into 4 overarching findings, as presented in Table 2. The final synthesized findings were graded according to the ConQual summary of the findings shown in Table 3.

This review revealed four conceptual themes that provide a comprehensive overview of the experiences of BCSWL within various social relationships, providing valuable qualitative evidence. The following four synthesized findings were identified: the influence of role conflict on social interactions, the triggering of negative emotions, the feeling of being cared for, and the resolution to move forward. Our findings partly align with earlier qualitative reviews [26].

The first synthesized finding in our review was ‘negotiating health and role expectations’. A role set is integral to the socialization process, and role conflict arises when incompatible expectations exist regarding role-relevant behaviors [27]. The BCSWL must manage a series of chronic symptoms, such as hand swelling, tenderness, numbness, pain, and other severe complications associated with lymphedema [4, 5]. Once diagnosed with BCRL, survivors must commit to lifelong treatment. Examples of these treatments include complete decongestive therapy, which involves specialized massages administered by trained therapists, and regular compression bandaging to reduce and control swelling in the affected arm [3, 4, 5]. These treatments can significantly hinder the range of motion, leading to restricted daily functionality. Consequently, it becomes challenging for survivors to fulfill their socialized duties and responsibilities as previously [15, 18, 19, 28]. Similar renegotiations of social roles and functions are observed in other chronic conditions such as asthma or diabetes [29, 30]. According to Karkkola et al. [31], role conflict strongly correlates with autonomy, which involves a sense of volition and self-endorsement.

A lack of autonomy undermines survivors’ self-management ability. In other words, survivors may prioritize fulfilling their family or social roles rather than adopting the overarching role of a survivor, which reflects their current health condition [32]. Moreover, as noted by the National Lymphedema Network [33] and the American Physical Therapy Association [34], self-management plays a crucial role in preventing and controlling lymphedema [35].

Poor adherence to self-management in BCRL can negatively impact prognosis and quality of life [36, 37]. Workplace and family relationships are the most frequently discussed social connections in this context. BCRL also affects work activities, requiring adjustments influenced by financial constraints, functional limitations, and the challenges of managing a chronic illness. These factors play a critical role in survivors’ ability to return to work. Research by Lee et al. [38] found that attitudes toward cancer patients and survivors returning to work vary across professional groups. Negative perceptions were primarily related to concerns about work efficiency, rather than the survivors themselves. This suggests that cancer survivors can receive workplace support if assigned roles that match their capabilities. For women, traditional gender roles often prioritize family responsibilities [39], and most BCSWL are female. Thus, addressing social factors is essential to improving outcomes, as women frequently encounter role conflicts due to these stereotypes. Given the long survivorship period associated with BCRL, these issues are particularly significant. Jiang and Chen [40] demonstrated that lower levels of social support correlated with poorer self-management ability. Ridner et al. [41] further emphasized the need for education at both the survivor and family levels, as well as gender role-based self-management strategies within complex social contexts.

The second synthesized finding was ‘instilling psychosocial pressure and stigmatization’. BCSWL experience increased insecurity about the future as well as psychological pressure as the disease progresses, particularly regarding the stigma associated with gender. After breast cancer, survivors undergo numerous physical and psychological changes. Research by Dominick et al. [42]revealed that 48.9% of women with BCRL reported moderate to extreme distress, classified as lymphedema-related distress, with 73% experiencing poor mental health. Additionally, BCSWL reported higher rates of clinical-level distress compared to those without lymphedema (37.0% vs. 14.1% [43]), with noticeable effects persisting for up to seven years [44, 45]. Poor psychological health also negatively impacts physical outcomes and overall quality of life [42, 43]. Fu et al. [8] highlighted that BCRL leads to negative self-identity, emotional disturbances, and psychological distress among survivors. These psychological factors contribute to low adherence to lymphedema self-management, emphasizing the importance of addressing survivors’ emotional well-being [46]. Our findings reveal that survivors most often encounter psychosocial pressure in their romantic relationships. Alcorso and Sherman [47] found that body image disturbances and related beliefs contribute to psychological distress in BCSWL. Body image is defined as an individual’s perception, thoughts, and feelings about their own body [48]. Physical changes, such as the asymmetrical body shape caused by lymphedema, often lead to a negative body image. This perception can heighten concerns about sexuality, an essential aspect of self-perception closely linked to mental health [49]. The specific quality of life domains most affected in BCSWL—body image and psychological functioning—were not correlated with a reduction in lymphedema size [38, 50]. Alcorso and Sherman’s study [47] revealed that older BCSWL are more likely to experience anxiety and depression due to body image disturbances. However, there were also reported that younger survivors reported greater challenges related to mental functioning [51] and experiencing more sexual difficulties compared to their partners [52]. This discrepancy may be attributed to differences in social networks [53, 54], underscoring the importance of educating BCSWL on mapping their social connections and fostering a self-care mindset. Such initiatives can empower survivors to build sufficient social support tailored to their unique needs and circumstances. A randomized controlled trial by Hummel et al. [55] highlighted that improving sexual health among patients with breast cancer requires the involvement of both the patients and their romantic partners. Cognitive-behavioral therapy (CBT) has been shown to enhance sexual health and strengthen relationships, suggesting that sexual counseling could be an effective intervention for addressing sexual challenges faced by BCSWL. Moreover, psychosocial pressure among BCSWL stems not only from the disease itself but also from the prolonged treatment journey, which often requires significant financial resources [56]. Research by Hens et al. [57] indicated that intangible costs are strongly associated with psychosocial suffering. However, in many countries, treatment costs for BCRL are not covered by national insurance, increasing the financial burden on survivors. Therefore, it is crucial to identify cost-effective strategies, particularly through social organizations, to alleviate this economic strain and improve the overall well-being of BCSWL.

‘Experiencing support from social networks’ is the third synthesized finding. Social support is a multidimensional and reciprocal concept that refers to the relationships individuals maintain with others. It is often classified into four subtypes: emotional, instrumental, informational, and appraisal support. The role of social support has been widely studied, especially in its connection to health outcomes. Research on chronic conditions such as dementia, diabetes, and heart disease highlights its significant impact on patient well-being. Similarly, the progression and outcomes of BCRL are shaped by social factors. Studies show that individuals with BCRL face more severe social challenges than those without the condition, resulting in reduced social well-being [14, 58, 59]. While self-management is vital for BCRL management, social support is equally important, particularly in complex and demanding situations [32, 60, 61]. This suggests that exploring social support is beneficial for disclosing BCRL. Our synthesized findings reveal that while survivors receive support from their romantic and family relationships, these are perceived as the least significant sources of support. Interestingly, although women generally access more social support than men in the general population [62, 63], female cancer survivors report receiving less spousal support—a key element of social support—compared to male cancer patients [64]. Although this disparity remains unexplained, women’s self-sacrificing behaviors, especially in familial settings, may offer a potential explanation [65]. Based on the synthesized findings, support from family and romantic relationships is the least perceived by BCSWL. This may be explained by the fact that women often serve as the primary provider of informal care within families or partnerships [66]. Moreover, BCSWL may feel more uncomfortable disclosing sensitive issues when they pertain to intimacy. As such, it is important to note that the impact of BCSWL, particularly on domestic or intimate relationships, may be underestimated or obscured [17]. Survivorship care plans for BCRL should focus on building survivors’ self-awareness and providing educational resources for those in close social or professional relationships.

The final synthesized finding, ‘adaptive resilience and identity reconstruction’, highlights how both BCSWL and their close relations collaboratively develop strategies to rebuild their lives. After diagnosis, BCSWL undergo a series of physical and mental transformations, with their perception of the disease significantly influencing the progression of BCRL. This phenomenon relates to illness perception, which is defined as a survivor’s cognitive and emotional representation of the disease. It encompasses aspects such as perceived life impact, emotional burden, experienced symptoms, personal control over the illness, and trust in the treatment. Notably, the process of illness perception varies greatly among individuals [27]. A study by González-Fernández et al. [28] reported that BCSWL often experience a sense of transition and transformation, adapting to a new life both physically and psychologically. Illness perceptions play a pivotal role in shaping health behaviors. In the context of BCRL, Chen et al. [32] identified illness perception as a critical factor influencing self-management capabilities, serving not only as an interrelated variable, but also as an independent determinant. The family environment is another significant factor affecting illness perceptions. Sociocultural influences, such as traditional notions of femininity, also shape the outcomes of illness perceptions among BCSWL. Consequently, survivorship care plans should integrate considerations of illness perceptions, particularly for managing chronic conditions like BCRL. Furthermore, social engagement programs can strengthen coping strategies and resilience, alleviate social isolation, and contribute to improvements in both physical and psychological health [33]. Focused clinical education is essential, targeting both survivors and their close support networks to foster adaptive resilience and effective identity reconstruction [28, 34].

The symptoms of BCRL often result not only in physical pain but also in social discomfort, leading to dysfunction in the lives of BCSWL, affecting them both physically and mentally. Although these dysfunctions typically manifest as chronic and non-fatal, they significantly impact the daily lives of BCSWL, often resulting in role conflict or role shifts. Influenced by stereotypical gender roles, women are expected to contribute more to family responsibilities. Consequently, BCSWL may experience increased pressure and a tendency to make compromises, which can hinder effective self-management of BCRL. However, when BCSWL perceive support from their various social relationships in daily life, they can develop resilience and the ability to rebuild their lives, regardless of the objective severity of their BCRL condition. Numerous experimental studies have explored the association between psychosocial factors and the quality of life in BCSWL. However, most interventional programs focus on physiotherapy or self-management and are short-term, with limited emphasis on long-term, specific psychosocial treatments, particularly regarding social relationships. A group-based randomized controlled clinical trial by Omidi et al. [35] highlighted the importance of incorporating social elements into BCRL self-management education, demonstrating that group-based education was more effective. Despite this, further research on diverse educational methods and cost-effectiveness remains insufficient, which is essential for implementing practical clinical strategies. With advances in modern medical technology, disease mortality rates are declining, and the survivorship of patients with chronic symptoms has gained increased attention. However, the interpretation and application of strategies for managing BCSWL within various social relationships remain unclear, especially among clinical professionals. Therefore, further research is recommended to investigate the biopsychosocial elements of BCSWL, aiming to develop advanced interventions that improve their quality of survivorship.

Firstly, future research is recommended to explore a broader range of social relationships to enrich the integrated structure of experiences for BCSWL. Future research can also discover extended strategies based on the findings of our study. With regard to biopsychosocial aspects, when BCSWL are discharged from hospital, it is important to examine how healthcare facilities offer relevant medical and psychological assistance to help them back to get their lived back on track, especially during the transition from hospital discharge. Secondly, the education of caregivers about BCRL should also be considered, as it plays an important role in influencing the outcomes of BCRL. Thirdly, for healthcare professionals, it is crucial to develop patient-centered care strategies that address the specific needs of BCRL population with diverse backgrounds. Therefore, future research should focus on advancing interventions that optimize the survivorship and quality of life for BCSWL as they transition to normal life.

This meta-synthesis review represents the first comprehensive examination of the experiences of BCSWL within various social relationships. While Burckhardt et al. [26] explored the living experiences of BCSWL, their focus was broader and did not specifically target the role of social relationships. The findings aggregated from qualitative research can complement results from quantitative reviews based on cross-sectional studies, addressing gaps in the literature. In addition, our study adheres to robust JBI-QARI guidelines, ensuring that the sample is sufficiently representative of similar experiences, even if the sample size is not particularly large, thereby providing valuable insights. However, several limitations warrant emphasis. Firstly, our findings reveal that relationships with family members are more frequently highlighted, indicating that the exploration of other relational partners may be somewhat limited. Additionally, the inclusion of only English-language studies restricts the cultural diversity of the data, as all the studies originate from developed Western countries. Furthermore, the stages of BCRL among participants in the included studies remain unclear, potentially affecting the precision of the findings. Future research should focus on exploring the psychosocial dynamics of younger survivors, as the current age range (average 52–63 years) is predominantly older adults. Studies could investigate how younger individuals navigate unique challenges, particularly in terms of role conflicts and sexual relationships, to provide a more comprehensive understanding of their experiences. The relatively small sample size may limit the generalizability of the current findings. Future studies should address this limitation by discussing how sample size might influence the results and considering strategies to enhance the robustness and representativeness of the data. These limitations underscore the need for more diverse, inclusive, and culturally representative research in this area.

Ous meta-synthesis revealed four conceptual themes that illustrate a series of experiences, providing an overview of qualitative evidence on the experiences of BCSWL within various social relationships. Synthesized findings reveal that BCSWL often face significant role conflicts both in workplace and within family settings. These challenges are exacerbated by insufficient support and increased psychosocial pressures, as well as stigmatization, particulalry in romantic relationships. Despite these challenges, BCSWL demonstrate remarkable resilience, effectively navigating and adapting to diverse relational contexts. The meta-synthesis highlights four key themes illustrating their experiences: the impact of role conflict on social interactions, the triggering of negative emotions, feelings of being cared for, and the determination to move forward. These positive and negative experiences coexist, shaping their health outcomes and overall well-being. Support from relational networks is critical throughout their lifelong treatment journey. For healthcare professionals, integrating social dimensions into patient-centered care is essential for developing targeted interventions and inclusive clinical practices. On a societal level, implementing supportive social policies and fostering an inclusive environment are equally important. Ultimately, cultivating strong and stable social relationships is fundamental to improving the health and quality of life for BCSWL.

All data points generated or analyzed during this study are included in this article and there are no further underlying data necessary to reproduce the results.

SG: conceptualization, methodology, formal analysis, data extraction, writing—original draft, writing—review and editing. YL: conceptualization, methodology, screening, data extraction, review and edits. PX: conceptualization, methodology, screening, data extraction, review and edits. XL: conceptualization, methodology, screening, data extraction, review and edits. YP: data extraction, review and edits. LL: overall supervision, project administration, formal analysis, revise important intellectual content. All authors read and approved the final manuscript. All authors have participated sufficiently in the work and agreed to be accountable for all aspects of the work.

Not applicable.

This work was funded by the Research on the Construction of a Lifestyle Evaluation System in the Context of Big Data, Hunan Provincial Department of Education (210SCZ002).

The authors declare no conflict of interest.

Supplementary material associated with this article can be found, in the online version, at https://doi.org/10.31083/CEOG26988.