Breast cancer-related lymphedema, a chronic condition affecting approximately 30% of breast cancer survivors, leads to significant physical and psychosocial challenges. This study explored the lived experiences of women with breast cancer-related lymphedema, focusing on occupational engagement and healthcare system interactions.
Method:
A phenomenological study was conducted with 18 female participants diagnosed with breast cancer-related lymphedema. Semistructured interviews were used to gather participant experiences, and reflexive thematic analysis to develop key themes.
Findings:
Five main themes emerged: Navigating the Psychosocial Challenges, Enduring Physical Constraints and Dependence on Others, Inconsistencies and Barriers in the Healthcare Journey, The Quest for Knowledge and Accessible Support, and Insights and Recommendations for Comprehensive Care. Findings revealed a significant mental health impact, physical limitations, inconsistent healthcare, and the need for additional supports. Participants emphasized improved mental health support, accessible lymphedema therapy, and increased societal awareness.
Conclusion:
This study highlights the mental, physical, and social challenges faced by women with breast cancer-related lymphedema, emphasizing the need for a comprehensive approach to care. Occupational therapists are well-positioned to provide holistic care, including mental and physical health interventions and advocacy for improved healthcare access and resources. Future research is needed on care standardization and comprehensive interventions to address the occupational needs of individuals with breast cancer-related lymphedema.
AcebedoJCHaasBKHermannsM (2021) Breast cancer-related lymphedema in Hispanic women: A phenomenological study. Journal of Transcultural Nursing32: 41–49.
2.
American Occupational Therapy Association (2020) Occupational therapy practice framework: Domain and process (4th ed.). American Journal of Occupational Therapy74(Suppl. 2): 7412410010.
3.
BaxterMFNewmanRLongpréSM, et al. (2017) Occupational therapy’s role in cancer survivorship as a chronic condition. The American Journal of Occupational Therapy71: 7103090010P7103090011–7103090010P7103090017.
4.
BazykSArbesmanM (2013) Occupational Therapy Practice Guidelines for Mental Health Promotion, Prevention, and Intervention for Children and Youth. Bethesda, MD: AOTA Press.
5.
BlackMHMilbournBDesjardinsK, et al. (2019) Understanding the meaning and use of occupational engagement: Findings from a scoping review. British Journal of Occupational Therapy82: 272–287.
6.
BraunVClarkeV (2022) Thematic Analysis: A Practical Guide. London: Sage Publications.
7.
BrayFLaversanneMSungHFerlayJ, et al. (2024) Global cancer statistics 2022: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA: A Cancer Journal for Clinicians74: 229–263.
8.
BukiLPRivera-RamosZAKanagui-MuñozM, et al. (2021) “I never heard anything about it”: Knowledge and psychosocial needs of Latina breast cancer survivors with lymphedema. Women’s Health17: 1–11.
9.
CreswellJWCreswellJD (2023) Research Design: Qualitative, Quantitative, and Mixed Methods Approaches, 6th edn. Los Angeles, CA: Sage Publications.
10.
CreswellJWPothCN (2018) Qualitative Inquiry and Research Design: Choosing Among Five Approaches, 5th edn. Los Angeles, CA: Sage Publications.
11.
DeanLTMossSLRansomeY, et al. (2019) “It still affects our economic situation”: Long-term economic burden of breast cancer and lymphedema. Support Care Cancer27: 1697–1708.
12.
DibleyLDickersonSDuffyM, et al. (2020) Doing hermeneutic phenomenological research: A practical guide, 1st edn. Thousand Oaks: Sage Publications.
13.
DominickSANatarajanLPierceJP, et al. (2014) Patient compliance with a health care provider referral for an occupational therapy lymphedema consult. Supportive Care in Cancer22: 1781–1787.
14.
DonahuePMacKenzieAFilipovicA, et al. (2023) Advances in the prevention and treatment of breast cancer-related lymphedema. Breast Cancer Research and Treatment200: 1–14.
15.
DönmezAAAliciNKBormanP (2021) Lived experiences for supportive care needs of women with breast cancer-related lymphedema: A phenomenological study. Clinical Nursing Research30: 799–808.
16.
EatonLHNarkthongNHulettJM (2020) Psychosocial issues associated with breast cancer-related lymphedema: A literature review. Current Breast Cancer Reports12: 216–224.
17.
FlickU (2022) The SAGE Handbook of Qualitative Research Design. London: Sage Publications.
18.
FuXLuQPangD, et al. (2023) Experiences of breast cancer survivors with lymphedema self-management: A systematic review of qualitative studies. Journal of Cancer Survivorship17: 619–633.
19.
GillespieTCSayeghHEBrunelleCL, et al. (2018) Breast cancer-related lymphedema: Risk factors, precautionary measures, and treatments. Gland Surgery7: 379–403.
20.
KwanMLYaoSLeeVS, et al. (2016) Race/ethnicity, genetic ancestry, and breast cancer-related lymphedema in the Pathways Study. Breast Cancer Research and Treatment159: 119–129.
McClureMKMcClureRJDayR, et al. (2010) Randomized controlled trial of the Breast Cancer Recovery Program for women with breast cancer–related lymphedema. American Journal of Occupational Therapy64: 59–72.
23.
Morehead-GeeAJPfalzerLLevyE, et al. (2012) Racial disparities in physical and functional domains in women with breast cancer. Support Care Cancer20: 1839–1847.
24.
Muñoz-AlcarazMNJiménez-VílchezAJ, et al. (2022) Activity-oriented antiedema proprioceptive therapy (TAPA) for shoulder mobility improvement in women with upper limb lymphedema secondary to breast cancer: A multicenter controlled clinical trial. Journal of Clinical Medicine11: 2234.
25.
Muñoz-AlcarazMNPérula-de-TorresLÁSerrano-MerinoJ, et al. (2020) Efficacy and efficiency of a new therapeutic approach based on activity-oriented proprioceptive antiedema therapy (TAPA) for edema reduction and improved occupational performance in the rehabilitation of breast cancer-related arm lymphedema in women: A controlled, randomized clinical trial. BMC Cancer20: 1074.
26.
OmidiZKheirkhahMAbolghasemiJ, et al. (2020) Effect of lymphedema self-management group-based education compared with social network-based education on quality of life and fear of cancer recurrence in women with breast cancer: A randomized controlled clinical trial. Quality of Life Research29: 1789–1800.
27.
OstbyPLArmerJMSmithK, et al. (2018) Patient perceptions of barriers to self-management of breast cancer-related lymphedema. Western Journal of Nursing Research40: 1800–1817.
28.
O’TooleJAFergusonCMSwaroopMN, et al. (2015) The impact of breast cancer-related lymphedema on the ability to perform upper extremity activities of daily living. Breast Cancer Research and Treatment150: 381–388.
29.
RenYKebedeMAOgunleyeAA, et al. (2022) Burden of lymphedema in long-term breast cancer survivors by race and age. Cancer128: 4119–4128.
30.
RidnerSHDietrichMSDavisAJ, et al. (2020) A randomized clinical trial comparing the impact of a web-based multimedia intervention versus an educational pamphlet on patient outcomes in breast cancer survivors with chronic secondary lymphedema. Journal of Women’s Health29: 734–744.
31.
SchmitzKHDiSipioTGordonLG, et al. (2015) Adverse breast cancer treatment effects: The economic case for making rehabilitative programs standard of care. Supportive Care in Cancer23: 1807–1817.
32.
SchmitzKHTroxelABDeanLT, et al. (2019) Effect of home-based exercise and weight loss programs on breast cancer-related lymphedema outcomes among overweight breast cancer survivors: The WISER survivor randomized clinical trial. JAMA Oncology5: 1605–1613.
33.
SilverJKGilchristLS (2011) Cancer rehabilitation with a focus on evidence-based outpatient physical and occupational therapy interventions. American Journal of Physical Medicine & Rehabilitation90(5 Suppl. 1), S5–S15.
34.
SunYShigakiCLArmerJM (2020) The influence of breast cancer related lymphedema on women’s return-to-work. Women’s Health16: 1–16. https://doi.org/10.1177/1745506520905720
35.
VuralSPAyhanFFSoranA (2020) The role of patient awareness and knowledge in developing secondary lymphedema after breast and gynecologic cancer surgery. Lymphatic Research and Biology18: 526–533.
36.
ZouLLiuFShenP, et al. (2018) The incidence and risk factors of related lymphedema for breast cancer survivors post-operation: A 2-year follow-up prospective cohort study. Breast Cancer25: 309–314.
