Experience of family caregivers of breast cancer–related lymphedema patients participating in lymphedema management: a phenomenological study

Abstract

Background

Home-based maintenance treatment is necessary for patients with breast cancer–related lymphedema even after their treatment regimen is finished. There is limited understanding regarding the involvement and experiences of family caregivers in effectively managing lymphedema. Therefore, this study aims to explore the daily experiences of family caregivers in order to enhance their home care plans for lymphedema management.

Methods

Employing phenomenological research methods, semi-structured interviews were conducted with 12 family caregivers responsible for the care of breast cancer–related lymphedema patients. The content of the interviews was transcribed and analyzed using Nvivo12.0 software and Colaizzi’s 7-step method.

Results

A total of three themes and eight subthemes were extracted from this study: (1) a fragmented understanding of lymphedema; (2) contradictory caregiving behaviors; and (3) systemic challenges in daily care.

Conclusions

By qualitatively exploring the caregiving experiences through interviews with these 12 family caregivers, this study offers valuable insights to medical professionals involved in patient care services. It is recommended that a family-centered empowerment model (FCEM) be employed as a basis for developing and implementing a comprehensive family management program aimed at equipping family caregivers with professional knowledge, enhancing their ability to manage lymphedema effectively, promoting patients’ health recovery, and improving their overall well-being.

Introduction

The incidence of breast cancer in China has been steadily increasing over the years. Research data indicates that the number of newly diagnosed cases of breast cancer reached a staggering 416,000 in 2020, accounting for 9.1% of all new cancer cases and 19.9% among female patients, making it the highest prevalence of cancer among Chinese women [1]. From a clinical perspective, comprehensive treatment is primarily employed to treat breast cancer, encompassing surgical intervention, radiotherapy, chemotherapy, and endocrine therapy, with surgery being the primary modality. However, it should be noted that such treatments can potentially impact the lymphatic system, leading to lymph fluid reflux obstruction and subsequent accumulation of high protein fluid within soft tissues. Consequently, patients may develop breast cancer–related lymphedema (BCRL) either shortly after surgery or even up to two decades later [2]. It is estimated that approximately 14 to 40% of breast cancer survivors will develop this complication [3, 4]. For many breast cancer survivors, the development of BCRL is a prevalent concern, second only to the fear of disease recurrence [5]. BCRL can result in stiffness, numbness, heaviness, pain, and reduced upper limb function in the affected arm, which leads to a decrease in quality of life. Psychological issues such as pain, depression, and anxiety often accompany BCRL [6].

The treatment principles of BCRL are mainly aimed at reducing limb swelling, restoring function, and delaying the further development of edema [7]. The widely used treatment method is complex decongestive therapy, namely CDT, which is the current standard treatment method for lymphedema [8]. In phase 1, the initial stage, lymphedema therapists assist patients with BCRL through manual lymphatic drainage (MLD) until a significant reduction in edema is achieved. In phase 2, the maintenance stage, BCRL patients must prioritize following the guidance of their lymphedema therapist and diligently carry out self-care practices, including MLD, functional exercises, skin care, and consistent use of compression garments at home. CDT does not restore normal function of the lymphatic system, but it can effectively impede the progression of lymphedema and mitigate adverse health outcomes. The treatment of CDT necessitates the utilization of costly medicine and equipment, as well as the provision of costly professional care, resulting in significant financial burdens for patients. Some patients are unable to afford the full course of CDT treatment. When patients possess sufficient self-management skills for lymphedema, they can reduce or eliminate hospital visits, thereby alleviating pain and other symptoms associated with lymphedema while also reducing the financial burden. Currently, lymphedema is a chronic disease that cannot be cured [9]. Breast cancer survivors should receive timely and lifelong self-management to effectively prevent the occurrence and progression of lymphedema [10]. However, patients may discontinue adhering to self-care when they perceive the tasks as time-consuming or overly complex [11]. Research has indicated that only one-fifth of individuals with BCRL are able to fully adhere to self-management practices, including MLD and utilization of pressure cuffs [12]. The study utilizing the international classification of functioning disability and health revealed that patients with lymphedema encountered challenges concerning bodily functions, activities, and participation, as well as environmental factors [13].

Families have an important influence on health and related outcomes. Family caregivers, also referred to as informal caregivers, encompass family members who provide unpaid and non-professional emotional support, informational assistance, and undertake care tasks for patients with chronic diseases [14]. Family members are actively engaged and closely connected to the patient, assuming a compassionate role. In the domestic setting, familial caregivers assist patients in monitoring and managing their illness, maintaining disease stability, and improving health status. This includes regularly applying bandages to arms, undertaking household tasks, as well as changing jobs to meet the needs of the survivor [15]. The provision of family support constitutes a fundamental aspect of social support, which serves to enhance both the economic and spiritual assistance provided to patients. By means of synchronized education for patients’ family caregivers, these individuals can actively engage in the entire process, effectively perceive emotional fluctuations experienced by patients, offer increased comfort and care, and jointly confront the rehabilitation journey to enhance treatment adherence. Therefore, it is essential to actively encourage the engagement of family members in the self-management plan for survivors of BCRL. Previous qualitative studies have shown the experience of the self-management of lymphedema by healthcare professionals and BCRL patients, while limited research has been conducted on the experiences of family caregivers in managing lymphedema [16, 17]. The objective of this article is to examine the experiences and requirements of family caregivers in China who are engaged in the management of lymphedema. By gaining a comprehensive understanding of these experiences, clinical healthcare professionals can effectively enhance family members’ involvement in lymphedema management, assist patients with BCEL in mitigating symptoms and delaying progression, develop positive health behaviors, and collaboratively address this issue based on scientific principles.

Materials and methods

Study design

An exploratory descriptive phenomenological approach was utilized to explore and describe the experiences of the participants [18]. Phenomenology, as used in nursing research, emphasizes elucidating the meanings of experiences or phenomena within a group, specifically focusing on individuals’ experiences, emotions, and opinions regarding a particular phenomenon [19]. This approach enables researchers to gain profound insights into daily life and obtain more comprehensive research findings. Findings were reported with references to the Consolidated Criteria for Reporting Qualitative Research Checklist (COREQ) [20].

Recruitment and participants

A purposive sampling strategy was employed in collaboration with a lymphedema care clinic at a large tertiary hospital. With the assistance of a clinic nurse familiar with the patient cohort, family caregivers of BCRL patients from September 2023 to January 2024 were recruited. Acknowledging that caregiving experiences vary by relationship, we specifically sought relationship-based variation by actively recruiting spouses, siblings, and parents, facilitated by offering additional incentives. Family caregivers were eligible for the study if they met the following criteria: (1) were caring for patients diagnosed with breast cancer–related lymphedema who were 18 years of age or older, (2) had patients who had been seen in the outpatient lymphedema clinic of a large city hospital in the last 2 years, (3) lived at the same residence as the patients, (4) able to understand and express oneself in Chinese, and (5) had provided informed consent. Family caregivers and patients were excluded if they had mental and/or psychological disorders. The determination of sample size primarily adhered to the principle of information saturation.

Data collection

A lymphedema therapist with a nursing bachelor’s degree was trained by a qualitative research expert to conduct the one-to-one, semi-structured interviews. Following the research objectives and literature review, a semi-structured interview outline was developed through a group discussion with lymphedema therapists, and three family caregivers underwent pre-interviews. The final interview guide is presented in Table 1. Once interviewees agreed to be interviewed, individual interviews were conducted in a tranquil clinic setting. During the interview, one researcher assumed the role of interviewer, while the other researcher employed a recording device to capture both verbal and non-verbal behaviors simultaneously (e.g., eyes, facial expressions and body language). Each interview lasted approximately 20 to 30 min. Participant names were anonymized as F1~12, and their basic information collected accordingly.

Table 1.

Interview guide

Reflect on and describe your experience in managing breast cancer-related lymphedema
1. Kindly elaborate on your understanding of breast cancer-related lymphedema;
2. Please describe the impact of breast cancer-related lymphedema on the daily life of the family;
3. Share your assistance and emotions when managing the patient’s lymphedema;
4. What challenges have you encountered while accompanying and/or aiding in managing lymphedema?
5. In your opinion, what aspects need improvement in terms of patient management for lymphedema?

Data analysis

Within 24 h of each interview, two trained, independent researchers transcribed the audio recordings and organized the written data, verifying its authenticity with participants within the following 48 h before importing it into NVivo 12 for analysis. We employed Colaizzi’s 7-step method for content analysis: becoming familiar with the original interview data, identifying significant statements, formulating meanings, clustering themes, developing an exhaustive description, deriving the fundamental structure, and finally validating the findings with the participants [21].

Researcher reflexivity and trustworthiness

The study’s trustworthiness was evaluated based on the criteria established by Lincoln and Guba, encompassing credibility, transferability, dependability, and confirmability. To ensure credibility, caregivers who had close relationships with the patients and could articulate their thoughts clearly were purposively selected. Data collection continued until saturation was achieved to enhance transferability. To ensure dependability, the researchers maintained prolonged engagement with the field and conducted consistent observations throughout the interview process. To ensure consistency, all researchers involved received rigorous training in qualitative methods and conducted the research under the guidance of experienced nursing experts.

Ethical consideration

This study was conducted in accordance with the Declaration of Helsinki. The Ethics Committee of the Affiliated Hospital of Jiangnan University has granted approval for this study (Approval No. LS2024047). Prior to the interview, participants were adequately informed of the aims and methods regarding the study and were given the autonomy to withdraw or decline answering any questions during the interview process. All collected and recorded data will be handled in a strictly confidential manner. After obtaining consent from family caregivers, we will request their signature on a written informed consent form.

Results

A total of 12 interviewees were interviewed based on the criteria of content repetition, with no new thematic information emerging. General information regarding the family caregivers and BCRL patients is presented in Table 2. The interview results were categorized into three themes and eight subthemes to comprehensively investigate the experiences of family caregivers who manage lymphedema. Quotations from caregivers will be included in the article to support the argument.

Table 2.

Characteristics of interviewees

Variable	Frequency (%)
Family caregivers of breast cancer–related lymphedema patients’ characteristics (n = 12)
Age (years)	Mean 48.6, SD (11.9), range (30–65)
Gender
Male	9 (75.0)
Female	3 (25.0)
Residence
Urban	8 (66.7)
Rural	4 (33.3)
Education level
Primary school	4 (33.3)
Middle school	2 (16.7)
High school	2 (16.7)
College or above	4 (33.3)
Occupational status
Employed	6 (50.0)
Unemployed	6 (50.0)
Relationship of patient
Spouses	7 (58.3)
Children	2 (16.7)
Siblings	3 (25.0)
Lymphedema side of patient
Left	4 (33.3)
Right	6 (50.0)
Both	2 (16.7)
Lymphedema stage of patient
Stage I	5 (41.7)
Stage II	6 (50.0)
Stage III	1 (8.3)

A fragmented understanding of lymphedema

Limited disease-specific knowledge

The lack of comprehension of BCRL and insufficient knowledge about its etiology, clinical manifestations, and classification among family caregivers contribute to treatment delays [22]. F1: “At first her arm swelled like a pig’s trotter and hurt so much that she didn’t know which department to see. Later, a friend introduced us to Dr. Cheng.” F3: “She ran around for treatment and even went to the US to see a doctor, but the problem was never solved.” F6: “I came to see you once last year, but this time I forgot which department to go to. I thought for a long time before I remembered the lymphedema clinic.” F10: “She has been undergoing surgery for more than ten years and has always felt fine. The doctor who did the surgery said this was a normal complication and she didn’t need to see another doctor.”

Unawareness of treatment pathways

In cases of lymphedema in the upper extremities, mild edema may resolve within months, while severe edema can impede the spontaneous restoration of the limb to its normal size. Both surgical and nonsurgical interventions demonstrate limited efficacy, with no discernible optimal treatment strategy [23]. Once the limb infection occurs, it can easily lead to recurrence and pose challenges for family caregivers. F5: “Doctor, is there any medicine to treat this disease? We choose to take medicine.” F8: “No bandages for the fingers were available, so she wrapped her hand in her silk scarf at home.” F9: “I searched the Internet for this disease, and it was said that it cannot be cured and there is no medicine to take.” F10: “We went to see a traditional Chinese doctor before and are now taking Chinese medicine for treatment, but it seems to have no effect.”

Deficits in self-management practices

The management of lymphedema is a long-term commitment that requires ongoing self-care. Depending on the severity of symptoms, most programs for BCRL typically consist of 3 to 12 components that need to be acquired and mastered over time. Family caregivers can play a crucial role as care providers by actively participating in the self-management of lymphedema, providing supervision and assistance. F2: “The doctor recommended exercise. I watch her exercise every day at home. How come the swelling hasn’t gone down? Is it because we exercise in the wrong way?” F4: “I got my mother a membership card of a health club and let her go there for sweating and steaming, which can reduce the swelling.” F5: “My wife mentioned that her arm was slightly swollen. I heard that using a compression pump could help alleviate this condition. At home, I used a blood pressure cuff to apply pressure on the swollen area for half an hour.” F6: “I took her to a traditional Chinese medicine clinic for acupuncture the other day, thinking that it could relieve the edema and promote the accumulation of water in the body to be dis-charged.”

Contradictory caregiving behaviors

Competence without capacity: the time-scarce caregiver

The interview revealed that the caregiving behaviors exhibited by the 12 family caregivers towards the patients encompassed daily life assistance, facilitation of treatment procedures, emotional support, and medical care. The time conflicts during caregiving give rise to inconsistencies in the caregivers’ behaviors. One third of family caregivers perceived lymphedema as having little impact on their patients and faced challenges in providing adequate support due to their demanding work schedules. F2: “I have to leave for work at 7 am. I wanted to help her with MLD, but I was in a hurry and it was too late.” F3: “When her arm was swollen, she was not allowed to do housework. But over time, she needs to return to normal life and may need to share some housework.” F6: “I am im-patient and sometimes I would help her with MLD quickly for a while and then stop.” F7: “My mother can self-MLD from other parts of her body, but she cannot reach her back. I wanted to help, but she refused because she was too embarrassed.”

Availability without proficiency: the unprepared caregiver

Due to the lack of professional training and unfamiliarity with treatment-related procedures among most family caregivers, their ability to provide patients with professional support is limited, resulting in minimal alleviation of lymphedema symptoms. F1: “I help her do MLD at home, back and right arm, about half an hour. Sometimes my son will help do half an hour, but there is no doctor’s strength and time control.” F5: “Every night I will help do MLD, about an hour. Because I am busy at work during the day, there is no time.” F8: “Recently, I experienced a recurrence of shoulder periarthritis. While assisting with her MLD, she felt that I had no strength.” F10: “Although I offered to assist, she felt that I was exerting too much pressure and moving too quickly while helping her with MLD.”

Capacity and competence without support: the unsupported caregiver

Prior to treatment, patients and their family caregivers may need to prepare themselves for the acquisition of imported compression garments and low-stretch bandages, which are necessary for optimal treatment. However, 50% of family caregivers exhibit a lack of clarity regarding the appropriate purchasing channels for these items. F4: “Doctor, this is the compression garment, I bought online. Can you see if it works?” F8: “Can I buy these therapeutic bandages and compression garments in hospital? The pharmacy outside doesn’t have the kind of bandages you mentioned. I don’t know where to buy them.” F9: “I asked my son to buy the cuffs, but he couldn’t find them in several drugstores. After that, he didn’t tell us, which delayed the time, so I bought them online by myself. This hospital doesn’t have them for sale.” F10: “I haven’t had time to get the finger bandages! Last time Dr. Cheng didn’t tell me where to buy finger bandages.”

Systemic challenges in daily care

Deficiencies in healthcare system support

Most family caregivers believe that hospitals should improve their support by extending the operating hours of lymphedema clinics, providing state-of-the-art equipment, and offering expert guidance from medical professionals. F1: “As the number of breast cancer patients increases, so does the number of people who have this disease. In fact, your hospital should pay more attention to the lymphedema clinic. It is open too rarely, only once a week, and only for half a day each time. I hope to bring my sister to have MLD every day.” F3: “Doctor Cheng, after you have done manual lymphatic drainage for my wife, she was comfortable in her affected arm for several days. Does your hospital have home treatment service?” F4: “When the lymphedema clinic is not open, it is really troublesome to find Dr. Cheng for treatment in the ward. Every time I have to make an appointment.”

Inadequacies in socioeconomic safety nets

Most family caregivers have an inadequate comprehension of lymphedema, which contributes to insufficient support for patients. This exacerbates the challenges associated with self-care and necessitates frequent medical visits. In addition, limited reimbursement for lymphedema-related treatment and the need to purchase treatment items out-of-pocket add to the burden of managing the condition. F5: “The previous treatment costs were already expensive, and now the treatment for lymphedema is not reimbursed. We don’t know if we have enough money to complete the treatment. It would be nice if the treatment costs were cheaper.” F7: “The family already lost one working person, and now we have to spend money on bandages and compression garments made abroad to treat lymphedema. There is no cheap and effective treatment in our country.” F9: “Last time I went for a check-up, the director said my arm was OK, not too swollen. This disease can only be treated in the outpatient department, and the medical insurance does not re-imburse the cost, so I did not go to the outpatient department for treatment.”

Discussion

In this study, we explored the experiences of family caregivers of patients with BCRL, offering unique insights into the field. Rather than analyzing the management experiences solely from the perspective of patients with BCRL, our findings highlight that focusing on the viewpoint of family caregivers empowers them to actively engage in lymphedema management. However, due to the lack of comprehensive social and professional medical support, they often find themselves isolated. In numerous countries, including China, medical insurance rarely provides coverage for lymphedema treatment.

The study’s findings indicate that although family caregivers have a positive attitude towards lymphedema management, their knowledge of self-management is inadequate. Additionally, they hold misconceptions regarding lymphedema-related information. This lack of understanding about lymphedema significantly hampers the involvement of family caregivers in patient management [24]. The greater the number of symptoms recognized by family caregivers, the higher their likelihood of adhering to risk management behaviors for BCRL [25]. Lymphedema therapists play a crucial role in promoting effective lymphedema management [26]. However, healthcare professionals who are not specialized in lymphedema therapy often lack the necessary knowledge and skills for managing this condition, which aligns with previous research findings [27]. Therefore, it is imperative to offer additional lymphedema education programs, such as workshops conducted by certified lymphedema therapists, in order to enhance the awareness of family caregivers and healthcare providers regarding effective management strategies for lymphedema. Several studies have demonstrated that empowering health education for family caregivers can enhance their understanding of patient self-care knowledge and practical problem-solving strategies, thereby improving their knowledge level, self-efficacy, and the daily life abilities of patients [28]. The caregivers are encouraged to impart health knowledge to patients and provide guidance on functional exercise. Enhancing the bond between patients and their families can optimize the role of family care, thereby positively impacting the physical and mental well-being of patients and enhancing their quality of life. In the study, approximately 60% of cancer survivors’ family caregivers motivated patients to engage in exercise either by participating alongside them or through verbal reminders, assisting them in maintaining or adopting a healthy lifestyle [29]. A study has indicated that individualized exercise is a safe and feasible method for the prevention of lymphedema and may even delay the onset of this condition [30]. Healthcare professionals should emphasize the significance of self-management techniques as a crucial means to slow down the progression of this condition. However, this study revealed a low level of engagement among doctors in promoting lymphedema management. The 2021 guidelines from the American Society of Oncology Nursing propose that Complex Decongestive Therapy is internationally recognized as the gold standard for treating lymphedema. Similarly, in the same year, the Chinese Nursing Association issued a group standard for preventing and caring for postoperative lymphedema in breast cancer patients, which recommends immediate referral to a qualified lymphedema therapist (nurses with certification as lymphedema therapists) for complex decongestive treatment upon detection of lymphedema [31]. The standardized management of lymphedema in China remains incomplete, necessitating further enhancements to the management standards [32]. The support provided by current policies and implementation guidelines to family caregivers is insufficient [33]. Most physicians prioritize the treatment of breast cancer itself rather than addressing BCRL. Nevertheless, existing literature has demonstrated that active involvement from primary care doctors plays a beneficial role in managing BCRL and contributes towards providing universal and equitable care for patients with lymphedema [34]. Consequently, it becomes essential to provide BCRL education and training specifically tailored for primary care providers. The study found that family caregivers often prioritize medical expenses over the importance of active learning in MLD during treatment. This can result in inadequate support for patients at home. Therefore, it is recommended that family caregivers acquire adequate disease management skills and knowledge in MLD to better comprehend the patient’s condition, provide appropriate care for swollen limbs, and facilitate self-care [35].

According to the data from this study, although healthcare providers offer recommendations for lymphedema management to family caregivers, some caregivers either do not actively participate in lymphedema management activities or are unable to manage daily tasks due to time constraints. These findings are consistent with previous reports [36]. In a study of 166 patients with lymphedema, participants reported adhering to an average of five out of seven prescribed treatment measures, while 19.5% participants strictly adhered to all seven measures prescribed in their regimens [12]. The Chinese communication habit of “bao xi bu bao you”—highlighting the positive while omitting the negative—has a direct impact on care-seeking. When patients conceal the onset of lymphedema, it creates a situation where family members remain unaware and thus unable to offer any support. In a qualitative investigation, it was revealed that 33.3% of patients reported an absence of familial or social support, with their family members being unaware of their lymphedema condition, thereby exacerbating the challenges associated with self-management of lymphedema [37]. In clinical practice, it has been observed that family caregivers tend to prioritize early clinical treatment over later rehabilitation and exhibit a reduced emphasis on providing humanistic care for patients. The lack of sufficient supervision in home care leads to inadequate compliance. Family members, as potential facilitators, can enhance self-management compliance. However, work responsibilities may create conflicts between their roles as family caregivers and therapeutic caregivers [38]. Therefore, it is crucial for family caregivers to strive towards achieving a balance between work and family obligations while effectively fulfilling their role as support providers, health educators, and monitors [39]. Regular follow-up assessments by healthcare professionals should be conducted to ensure that patients and their caregivers are actively engaging in lymphedema self-management activities since long-term maintenance interventions play a pivotal role in minimizing the risk of BCRL [40]. Specifically, the network advantage was employed to facilitate ongoing lymphedema education during follow-up. By supervising the behavior of primary family caregivers, the supervision over patients’ daily functional exercises can be strengthened. Caregivers accompany and guide patients in exercising, creating a more relaxed atmosphere that leads to higher patient acceptance and compliance. Joint exercise strengthens communication between patients and caregivers, increasing opportunities for daily communication content which helps patients find pleasure in otherwise tedious exercise routines, ultimately improving their overall effectiveness. Modifications to the self-management plan should only be made when the treatment management plan effectively controls lymphedema symptoms in patients. Personalized plans should adhere to evidence-based nursing principles, while establishing a standardized lymphedema management plan to provide scientific guidance for patients. In outpatient settings, one-to-one teaching guidance should be provided to patients and their family caregivers, focusing on training related technical operations such as assisting with MLD and wearing compression garments [41]. Additionally, appropriate instructional videos should be disseminated through online WeChat groups or public accounts for home learning.

Existing research emphasizes that robust social support is a key component of empowerment [42]. However, our study found that family caregivers commonly experience a lack of such support. This finding underscores that an empowerment model must focus not only on internal family dynamics but also on linking caregivers to external resources. In numerous countries, including China, medical insurance rarely provides coverage for lymphedema treatment. Research has indicated that the cost of treatment does not align with its technical aspects, particularly the labor-intensive MLD procedures [43]. The financial burden on families can be significant when considering the long-term nature of this treatment [44]. These expenses impose a financial burden on patients and their families, particularly those who are unable to work or lack a stable income due to BCRL, thereby hindering their ability to afford the necessary medical expenses. Consequently, governmental provision of insurance coverage for and access to lymphedema treatment could be considered as a means to reduce economic burden; for instance, health insurance coverage could be expanded to cover lymphedema-specific materials. The issue of patients purchasing their own importing treatment supplies, such as elastic bandages and compression garments, requires attention. Relevant departments should enhance supervision, establish efficient purchasing channels, and set reasonable prices to keep co-pays low on patients. Within China’s healthcare system, formal support systems like professional in-home care are severely limited. This places the caregiving burden squarely on the family and intensifies the caregivers’ sense of isolation. Healthcare institutions can opt for specialized nurses with extensive experience in lymphedema care to establish online lymphedema care clinics and provide on-site services, thereby contributing positively towards mitigating the current imbalanced distribution of medical resources and effectively managing lymphedema. Chinese lymphedema therapists should be granted limited prescribing authority, which includes the ability to prescribe vascular ultrasound examinations and blood tests. The provision of appropriate prescription authority empowers nurses to take on a decision-making role in their practice, which holds significant implications for chronic disease management and caregiver support. Granting nurses prescription authority can effectively reduce medical costs while ensuring patients receive timely, convenient, and efficient healthcare services. The limited availability of a half-day outpatient service per week may be attributed to the lower patient volume of lymphedema. From a patient treatment perspective, it is evident that most patients are referred through various channels such as physicians, self-referrals, and hospital wards. Additionally, only 8.33% of outpatient services exceed 50 cases per week, further indicating the lower patient volume which could be linked to insufficient awareness regarding lymphedema treatment and inadequate promotion of lymphedema nursing outpatient services [45]. Collaborative clinics and wards established by doctors can increase the number of patients and enhance awareness about lymphedema treatment, improving regional publicity. In conclusion, self-lymphatic management is crucial for preserving arm functionality and preventing complications in patients with lymphedema. Collaborative efforts are imperative in order to ultimately accomplish the objective of enhancing the quality of life for patients afflicted with lymphedema.

As BCRL is a lifelong condition that affects not only the individual but also their family members, it is crucial for patients to have their family caregivers empowered. This is particularly important given that, similar to other chronic diseases, BCRL has a long-term impact. Empowering patients in healthcare means promoting self-regulation and self-determination to optimize maximum well-being and health. The adoption of a family-centered approach to disease prevention and treatment is deemed indispensable by healthcare providers [46]. Empowerment is a transformative process that facilitates the recovery of patients. The main purpose of the family-centered empowerment model (FCEM) is to empower the autonomy and agency of both patients and their family caregivers, thereby fostering improvements in their overall health outcomes. Drawing upon the FCEM, lymphedema therapists can devise and implement strategies for familial management, offering expert knowledge support to family caregivers and augmenting their capacity in self-managing lymphedema, thereby fostering patients’ recuperation and enhancing their overall well-being.

Limitation

Although this study enriches our knowledge of the lived experience of self-management of BCRL, it has some limitations. Firstly, the generalizability of conclusions from this single-site study is circumscribed by its particular cultural and institutional circumstances. The caregivers’ lived experiences are rooted in the specific ethos of Chinese filial culture, and the scope of support they can access is defined by the tiered diagnosis and treatment model and health insurance reimbursement policies. Therefore, the care challenges and response patterns uncovered are not directly transferable to societies operating under different cultural frameworks and medical service regimes. Secondly, the selection of family caregivers was limited to those whose family members had previously received outpatient treatment, potentially resulting in a lack of diversity in the information gathered. Consequently, the results of this study may not be applicable to patients with untreated BCRL. Future researchers can conduct dyadic assessments and interviews with patients suffering from BCRL and their family caregivers to gain insights into their experiences in disease management at home. This research is crucial for enhancing the capacity to manage lymphedema effectively and cope with the challenges posed by this condition.

Conclusions

This study has illuminated the experiences of family caregivers of BCRL patients in China. Furthermore, family caregivers were the primary agents for managing symptoms such as MLD, pain, and lymphedema in the home due to a lack of support services. This finding has significant implications for occupational therapists to consider in developing interventions. Additionally, the use of a family-centered empowerment model for the provision of care services is crucial. It is recommended that the National Health Insurance Scheme be expanded to fully cover lymphedema treatment for women and their families, as the current partial subsidization of lymphedema treatment is a challenge.

Relevance to clinical practice

The findings of this study highlight several critical avenues for enhancing clinical practice. Firstly, there is a pressing need for healthcare providers to intensify proactive and structured patient education regarding the risk and management of BCRL. Such initiatives should target both patients and their family caregivers from the peri-operative period onwards, aiming to improve literacy on BCRL and foster recognition of the importance of scientific, long-term management, thereby facilitating early detection and intervention. Secondly, the role of lymphedema therapists should evolve beyond direct patient care to include the empowerment of family caregivers. Therapists can employ specific empowerment strategies—such as collaborative goal-setting, shared decision-making in developing home-based care plans, and recognizing caregivers as integral partners in the care process—to actively encourage and sustain their involvement. Finally, at the health-system level, administrative bodies are urged to invest in the training and certification of a greater number of specialized lymphedema therapists to address the current shortage. Furthermore, delegating appropriate clinical autonomy to these therapists and exploring financial support mechanisms, such as insurance reimbursement for lymphedema care and supplies, are essential steps to improve service accessibility, enhance workflow efficiency, and ultimately alleviate the economic burden on families.

Author Contribution

Author Contributions: Conceptualization, Q.W. and Y.C.; methodology, Q.W.; software, X.S.; validation, L.X.K. and Y.C.; formal analysis, H.Q.; investigation, Q.W.; resources, X.C.; data curation, L.J.; writing—original draft preparation, Q.W.; writing—review and editing, L.J.

Funding

This study has no funding.

Data Availability

No datasets were generated or analysed during the current study.

Declarations

Competing Interests

The authors declare no competing interests.