Not All Diseases Are Visible From the Outside: Exploring the Occupational Challenges of Lymphangioleiomyomatosis

PURPOSE: The purpose of the study was to explore the occupational participation patterns of women living with lymphangioleiomyomatosis (LAM) based on the query “How does LAM impact women’s daily occupational participation patterns?”

RATIONALE: LAM is a rare pulmonary disease that affects women in childbearing years with symptoms including breathlessness and fatigue (Belkin, Fier, Desserich, Swigris, & Albright, 2014) caused by an incomplete airflow in the lungs. There is no known cure for LAM, and treatments are limited. One study explored physical and emotional experiences of women with LAM (Belkin et al., 2014), but its impact from an occupational perspective is lacking in the literature.

DESIGN: A qualitative grounded theory design (Charmaz, 2014) was implemented.

METHOD: Eighteen women living with LAM participated in individual telephone interviews averaging 25–30 min, and 3 women participated in a 60-min conference call focus group. Ages ranged from 29 to 63 yr with an average 7.6 yr since diagnosis.

ANALYSIS: The interviews were transcribed verbatim and analyzed using grounded theory (Charmaz, 2014) methods. Each transcript was coded (DePoy & Gitlin, 2011), and a descriptive memo was created for each code (Charmaz, 2014), which were then reduced into categories. The authors wrote analytic memos for the categories and reduced the data through several memo iterations until saturation (DePoy & Gitlin, 2011), from which four themes emerged.

RESULTS: Theme 1, The Unknown: Diagnosis and Progression of LAM, explained the physical aspects of living with LAM. In Theme 2, Then and Now: The Emotional Journey, participants described fears and anxieties from diagnosis through present day due to uncertainties about how their future their roles might change. In Theme 3, “It’s Too Exhausting”: Impact on Daily Occupations, participants discussed adaptations they made in daily activities and how their responsibilities and leisure activities were affected by the symptoms of LAM. In Theme 4, Becoming the “Known”: A Hope for the Future, participants expressed hopes that advocacy will lead to better understanding of the disease and how they find support from others through social media sites.

DISCUSSION: As expected (Belkin et al., 2014), the women in our study experienced fears and anxieties about the future including how the disease could affect their ability to participate in daily activities. Some women in our study were passionate about their involvement in the LAM community through online support groups where they could give and gain support to and from other women living with LAM. Common to other diagnoses, online support groups provided participants with peers who understand what they are going through so that they feel less isolated and gain information about what to expect and advice on how to adapt to changes (Holbrey & Coulson, 2013).

IMPACT STATEMENT: Occupational therapists are well positioned to facilitate participation for women with LAM through education on energy conservation techniques, task analysis, and lifestyle adaptations.

References

Belkin, A., Fier, K., Desserich, J., Swigris, J., & Albright, K. (2014). “Getting stuck with LAM”: Patients’ perspectives on living with lymphangioleiomyomatosis. Health and Quality of Life Outcomes, 12, 79. http://dx.doi.org/10.1186/1477-7525-12-79

Charmaz, K. (2014). Constructing grounded theory (2nd ed.). London: Sage.

DePoy, E., & Gitlin, L. (2011). Introduction to research: Understanding and applying multiple strategies (4th ed.). St. Louis: Elsevier-Mosby.

Holbrey, S., & Coulson, N. S. (2013). A qualitative investigation of the impact of peer to peer online support for women living with polycystic ovary syndrome. BMC Women's Health, 13, 51. http://dx.doi.org/10.1186/1472-6874-13-51