Date Presented 04/03/2025
This cross-sectional, mixed-methods survey study gathered client perceptions of successful lymphedema management in terms of defining success and identifying client and health care professionals’ actions that affect successful management.
Primary Author and Speaker: Claire M. Dolislager
Contributing Authors: Hannah Erdman, Cailin Gunn, Haley Hamel, Morgan Phillips, Austin Willey, Susan Cleghorn, Jordyn Stehouwer
PURPOSE: The purpose of this study was to explore clients’ views of successful lymphedema management (SLM). Existing research centers on healthcare professionals' perspectives and actions. Insights from individuals with lymphedema can inform occupational therapy practitioners' decision making and service delivery.
DESIGN: Cross sectional, mixed methods survey. Participants were recruited through two professional organizations in the USA via email blasts and social media. Individuals were included if they were diagnosed with lymphedema and/or chronic swelling, had lymphedema therapy at least once, were 18 years or older, and were in the USA at the time of the study. Individuals not meeting all inclusion criteria or if they did not provide consent were excluded from the study.
METHOD: The researchers developed the survey in Qualtrics, guided by AOTA Official Documents and the Patient Assessment of Chronic Illness Care. Face validity was established. Quantitative data were analyzed using counts and percentages, and qualitative data were analyzed using thematic analysis.
RESULTS: Twenty-one respondents were included. Most viewed managing symptoms synonymously with SLM. Compression use and consistency with daily management practices contributed to SLM. The financial and emotional toll of lymphedema and limited access to lymphedema specialists detracted from SLM. More than 80% of the sample reported difficulty with at least one ADL due to lymphedema. Qualitative responses indicated dissatisfaction, feelings of isolation, and poor mental health while managing lymphedema.
CONCLUSION: Symptom management is a key feature of clients' views of SLM, though it is costly, time consuming, and limits occupational engagement and quality of life.
IMPACT STATEMENT: Client perspectives on lymphedema are underrepresented in existing literature. This study sheds light on their views, which can inform occupational profile data collection and patient education design.
References
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