Table 2.
Themes and subthemes | Frequency of endorsement (%) | ||
---|---|---|---|
Qualitative interviews (n = 27) |
Focus group 1 (n = 7) |
Focus group 2 (n = 9) | |
Theme 1: work patients must do to care for their health | |||
--Learn about conditions and care | 59 | 100 | 100 |
--Taking medications | 82 | 100 | 100 |
--Medical appointments | 100 | 100 | 100 |
--Monitoring health | 52 | 100 | 100 |
--Health behaviors | 89 | 100 | 100 |
--Medical equipment/devices | 26 | 100 | 100 |
Theme 2: challenges/stressors that exacerbate felt burden | 100 | 100 | |
--Challenges with taking medication | 100 | 100 | 100 |
--Interpersonal challenges | 30 | 100 | 100 |
--Financial challenges | 85 | 100 | 100 |
--Confusion about medical information | 59 | 100 | 100 |
--Barriers to self-care | 41 | 100 | 100 |
--Health care provider obstacles (individual provider) | 41 | 100 | 100 |
--Health care provider obstacles (system issues) | 67 | 100 | 100 |
--Transplant-specific challenges | 100 | 100 | 100 |
Theme 3: impacts of burden | 100 | 100 | |
--Role/social activity limitations | 89 | 100 | 100 |
--Physical/mental exhaustion of self-care | 52 | 100 | 100 |