Abstract
Purpose
Lymphedema is a frequent side effect from head and neck cancer and/or its treatment. As a chronic and progressive condition, it requires an individual’s long-term involvement in self-care for management of lymphedema. This study aimed to report head and neck cancer patients’ perceived lymphedema education, self-care practices, and suggestions related to self-care of head and neck lymphedema.
Methods
Twenty head and neck cancer patients who completed lymphedema therapy participated in semi-structured face-to-face interviews. Interviews were audio-recorded and transcribed. Content analysis was used to analyze the interview data.
Results
All participants reported that they were educated about self-care activities for lymphedema management by their lymphedema therapists. Although most participants (n = 16, 80 %) expressed positive comments about lymphedema self-care education, some participants (n = 7, 35 %) described issues related to lymphedema self-care education. A majority of the participants (n = 17, 85 %) reported that they were conducting some lymphedema self-care activities; nonetheless, more than half of the participants (n = 11, 55 %) delineated barriers for diminished lymphedema self-care activities over time. Participants further indicated suggestions for improving and ensuring consistency of lymphedema self-care.
Conclusions
Opportunities exist to improve lymphedema self-care in head and neck cancer patients. Healthcare professionals should focus on delivering high quality and targeted information about self-care for management of head and neck lymphedema. Interventional research is warranted to address gaps in long-term self-care of head and neck lymphedema.
Similar content being viewed by others
References
American Cancer Socieity (2015) Cancer fact & figures, http://www.cancer.org/acs/groups/content/@editorial/documents/document/acspc-044552.pdf. Accessed 23 Oct 2015
Deng J, Ridner SH, Murphy BA (2011) Lymphedema in patients with head and neck cancer. Oncol Nurs Forum 38(1):E1–E10. doi:10.1188/11.ONF.E1-E10
Deng J, Ridner SH, Dietrich MS, Wells N, Wallston KA, Sinard RJ, Cmelak AJ, et al. (2012) Prevalence of secondary lymphedema in patients with head and neck cancer. J Pain Symptom Manag 43(2):244–252. doi:10.1016/j.jpainsymman.2011.03.019
Smith BG, Lewin JS (2010) Lymphedema management in head and neck cancer. Curr Opin Otolaryngol Head Neck Surg 18(3):153–158. doi:10.1097/MOO.0b013e32833aac21
McGarvey AC, Osmotherly PG, Hoffman GR, Chiarelli PE (2014) Lymphoedema following treatment for head and neck cancer: impact on patients, and beliefs of health professionals. Eur J Cancer Care (Engl) 23(3):317–327. doi:10.1111/ecc.12134
Jeffs E, Huit M (2015) Treatment and outcomes of head and neck oedema referrals to a hospital-based lymphoedema service. Br J Community Nurs Suppl:S6-S13. doi: 10.12968/bjcn.2015.20.Sup4.S6
Tacani PM, Franceschini JP, Tacani RE, Machado AF, Montezello D, Goes JC, Marx A (2014) Retrospective study of the physical therapy modalities applied in head and neck lymphedema treatment. Head Neck. doi:10.1002/hed.23899
Deng J, Ridner SH, Dietrich MS, Wells N, Wallston KA, Sinard RJ, Cmelak AJ, et al. (2012) Factors associated with external and internal lymphedema in patients with head-and-neck cancer. Int J Radiat Oncol Biol Phys 84(3):e319–e328. doi:10.1016/j.ijrobp.2012.04.013
Földi M, Földi E, Strössenreuther RHK, Kubik S (eds) (2006) Földi’s textbook of lymphology: for physicians and lymphedema therapists, 2nd edn. Mosby, Muchen, Germany
Lee B-B, Bergan JJ, Rockson SG (2011) Lymphedema: a concise compendium of the theory and practice. Springer, London
Zuther JE (2009) Lymphedema management: the comprehensive guide for practitioners, 2nd edn. Thieme, New York
Framework L (2006) Best practice for the management of lymphoedema. International consensus. MEP Ltd, London
Gulbrandson GL (2014) Lymphedema wellness manual: the interactive lymphedema management system for patients and therapists. California, Berkeley
Avraham T, Zampell JC, Yan A, Elhadad S, Weitman ES, Rockson SG, Bromberg J, et al. (2013) Th2 differentitation is necessary for soft tissue fibrosis and lymphatic dysfunction resulting from lymphedema. FASEB J 27(3):1114–1126. doi:10.1096/fj.12-222695
Stubblefield M, O’Dell M (2009) Cancer rehabilitation: principles and practice. Demos Medical Publishing, LLC, New York
Deng J, Ridner SH, Wells N, Dietrich MS, Murphy BA (2015) Development and preliminary testing of head and neck cancer related external lymphedema and fibrosis assessment criteria. Eur J Oncol Nurs 19(1):75–80. doi:10.1016/j.ejon.2014.07.006
Deng J, Ridner SH, Rothman R, Murphy B, Sherman K, Moore L, Hall K et al. (2016) Perceived symptom experience in head and neck cancer patients with lymphedema. J Palliat Med
IBM (2015) SPSS Statistics 22.0, [online], http://www-01.ibm.com/software/analytics/spss/products/statistics/ Accessed 31 Aug 2015
Hsieh HF, Shannon SE (2005) Three approaches to qualitative content analysis. Qual Health Res 15(9):1277–1288
Ridner SH, Dietrich MS, Kidd N (2011) Breast cancer treatment-related lymphedema self-care: education, practices, symptoms, and quality of life. Support Care Cancer 19(5):631–637. doi:10.1007/s00520-010-0870-5
Borrelli B (2011) The assessment, monitoring, and enhancement of treatment fidelity in public health clinical trials. J Public Health Dent 71(Suppl 1):S52–S63
Bellg AJ, Borrelli B, Resnick B, Hecht J, Minicucci DS, Ory M, Ogedegbe G, et al. (2004) Enhancing treatment fidelity in health behavior change studies: best practices and recommendations from the NIH behavior change consortium. Health Psychol 23(5):443–451
Deng J, Radina ME, Fu MR, Armer JM, Cormier JN, Thiadens SR, Weiss J, et al. (2015) Self-care status, symptom burden, and reported infections in individuals with lower-extremity primary lymphedema. J Nurs Scholarsh 47(2):126–134. doi:10.1111/jnu.12117
Ryan M, Stainton MC, Jaconelli C, Watts S, MacKenzie P, Mansberg T (2003) The experience of lower limb lymphedema for women after treatment for gynecologic cancer. Oncol Nurs Forum 30(3):417–423. doi:10.1188/03.ONF.417-423
Armer JM, Brooks CW, Stewart BR (2011) Limitations of self-care in reducing the risk of lymphedema: supportive-educative systems. Nurs Sci Q 24(1):57–63. doi:10.1177/0894318410389058
Jeffs E, Ream E, Shewbridge A, Cowan-Dickie S, Crawshaw D, Huit M, Wiseman T (2015) Exploring patient perception of success and benefit in self-management of breast cancer-related arm lymphoedema. Eur J Oncol Nurs pii: S1462-S3889 (15)30018–1. doi: 10.1016/j.ejon.2015.08.001
Tidhar D, Hodgson P, Shay C, Towers A (2014) A lymphedema self-management programme: report on 30 cases. Physiother Can 66(4):404–412. doi:10.3138/ptc.2013-46
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Funding
This research was supported by the Vanderbilt Office of Clinical and Translational Scientist Development.
Conflict of interest
None to declare.
Electronic supplementary material
ESM 1
(DOCX 16 kb)
Rights and permissions
About this article
Cite this article
Deng, J., Murphy, B.A. Lymphedema self-care in patients with head and neck cancer: a qualitative study. Support Care Cancer 24, 4961–4970 (2016). https://doi.org/10.1007/s00520-016-3356-2
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s00520-016-3356-2