Chronic Lymphedema

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Supporting Someone With Lymphedema 

So you want to support someone in your life who is living with chronic lymphedema? Not sure where to start? The first key idea is to develop empathy and be an advocate for your loved one. Be patient with the pain and frustration that comes along with the physical symptoms, while also helping them with comfort. Realize that those affected are not overreacting and be aware of their limitations. As much as you want to help and understand, sometimes you just cannot. Instead, the best thing to do is give the gift of time and unconditional support. There will be good days and bad days, and being there for someone living with lymphedema can make a big difference.

 

Daily Living Challenges

In a study conducted to explore the lived experiences for those living with lymphedema, in-depth interviews revealed some of the biggest daily challenges included: physical (caused by difficulties in performing household chores, limitations in performing self-care activities, and challenges in shopping), psychosocial (uncertainty about the future, social, and religious support), healthcare systems and information (attention from healthcare professionals, education and lifestyle advices, and access to healthcare sources), and financial supportive care needs (1). With this in mind, recognize what you can offer, and where you can respectfully assist your loved one with chronic lymphedema. 

 

Individuals living with lymphedema have major coping strategies that can be used ranging from friends, family, peers in structured support groups as well as spiritual/religious groups or practices (2). These groups help facilitate an increase in the individual’s hope, strength, comfort, and also provides an outlet to vent frustrations. A study found that those living with lymphedema found that their friends’ concern and helpful actions increased their overall sense of well being (2). Knowing that someone is there to listen to your thoughts and your feelings is an important aspect that truly benefits the individual. Due to the physical limitations caused by this disease, there are also non-medical sources of support in which one can do in efforts of helping individuals living with lymphedema such as completing house household duties, caring for children, and participating in hobbies. 

 

Also important to note would be other non-medical sources of support which can include giving massages, coming along to medical appointments, acting as interpreters for the individual, checking on swelling, as well as paying for the medical bills. Many participants in this study said that their immediate family members  were the most consistent providers even if the family dynamic may change and roles need to be redistributed (2).

 

Supporting Youth and Adolescents with Lymphedema

While more uncommon, youth and adolescents can also develop chronic lymphedema. Treating and managing lymphedema is challenging for anyone, however in a younger population this provides new challenges for both the youth and the parents. The cornerstones of lymphedema management have been traditionally defined as a set of techniques involving care of the skin, exercise, compression, and manual lymphatic massage (3). Treatment has been split into two phases, with the first is done by a health professional to rapidly remove fluid and stabilize the skin. The second phase is defined as maintenance and often the responsibility of the parents. 

 

For youth, the goal is to promote self-management of their condition, but depending on age and maturity this can be a challenge. As parents and caretakers, it is important checking in to ensure at-home treatment protocols are being followed. It has been found that there was an overall concern that introducing self-management strategies too quickly could easily overwhelm families who were already facing anxiety and uncertainty over their child's condition (3). If this was the case, it often subsequently led parents to feel an emotional burden by not pursuing treatment sooner before it progresses (3). If you ever feel worried about this, please contact your doctor. You are not alone in this, and securing a great care team is critical!

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Support and education-- You are not alone! 

Having open and caring lines of communication can facilitate better collaboration between patients and their health care providers (4).In examining the format and types of education favored by patients with lymphedema, dedicated lymphedema websites were there preferred choice to access information (76%) (4).Second to this were direct contact with physicians and primary health care providers (56%), support groups on the internet (34%), and family and friends (32%) (4). From this information, we can glean that information access is quite varied, and that many support systems, including the emotional and physical help from family, is crucial for the management of lymphedema. 

 

The lymphatic network provides a platform and safe space for those living with lymphedema and their loved ones to share their stories (5). Feelings of vulnerability, insecurity, strength, and perseverance come out. This helps humanize the condition, and in addition to providing hope and community support, can be a valuable learning tool. 

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Website for the Lymphatic Network: https://lymphaticnetwork.org/your-stories/living-with-lymphedema 

 

 

References:

 

(1) Dönmez, A. A., Alici, N. K., & Borman, P. (2020). Lived Experiences for Supportive Care Needs of Women with Breast Cancer-Related Lymphedema: A Phenomenological Study. Clinical Nursing Research, 105477382095811. doi:10.1177/1054773820958115

 

This article was a valuable tool to highlight the lived experience of someone with chronic lymphedema. The methodology of using a mixed-method in-person interview was a strength, and provided excellent details on daily struggles of someone living with lymphedema, as well as provide ways in which loved ones can support. 

 

 

(2) Buki, L. P.; Rivera-Ramos, Z. A.; Kanagui-Muñoz, M.; Heppner, P. P.; Ojeda, L.; Lehardy, E. N.; Weiterschan, K. A. “I never heard anything about it”: Knowledge and psychosocial needs of Latina breast cancer survivors with lymphedema. Women’s Health.2021, 17, 174550652110024. https://doi.org/10.1177/17455065211002488

 

This journal article highlights the psychosocial needs of Latina breast cancer survivors living with lymphedema. It also outlines the challenges that many Latina women face in terms of managing the condition, as well as the overall affect lymphedema plays over the individual’s household.

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(3) Moffatt, C., Aubeeluck, A., Stasi, E., Macsweeney, M., Mourgues, F., Pourquier, H., Quéré, I. (2019). A Study to Explore the Professional Conceptualization and Challenges of Self-Management in Children and Adolescents with Lymphedema. Lymphatic Research and Biology, 17(2), 221-230. doi:10.1089/lrb.2018.0076

 

This source was a valuable primary article using mixed methods to detail and account for the challenges faced by parents who have children diagnosed with chronic lymphedema. This source was great in providing the perspective of the caregiver and what their major worries were. 

 

(4) Ostby, P. L.; Armer, J. M.; Smith, K.; Stewart, B. R. Patient Perceptions of Barriers to Self-Management of Breast Cancer–Related Lymphedema. Western Journal of Nursing Research. 2017, 40(12), 1800–1817. https://doi.org/10.1177/0193945917744351 

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This journal article summarizes the importance of understanding the barriers associated with living with lymphedema. It emphasized the need for familial support as well as outlining a variety of sources in supporting individuals living with this condition.  

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(5) Your Stories- Lymphedema Education and Research Network. (2021). https://lymphaticnetwork.org/your-stories/living-with-lymphedema

 

This source served as a great community tool to show the value and empowerment that comes with sharing one’s story living with lymphedema. The LERN is across North America, and represents a diverse range of human experiences related to lymphedema. Valuable tool to engage the community and develop a sense of community and empowerment over one’s condition.

 

Media References:

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(6) What is Lymphedema?--Lymphedema Education and Research Network https://lymphaticnetwork.org/living-with-lymphedema/lymphedema 

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(7) Get the facts about Lymphedema--Sigvaris https://www.sigvaris.com/en-us/stories/get-the-facts-about-lymphedema 

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(8) Lymphedema Support-- How to be Lymphedema Ally https://www.lymphcareusa.com/patient/your-life/blog/lymphedema-support-how-to-be-a-lymphedema-ally.html 

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