Fatigue : biomedicine, health & behavior · 2022
Perceptions of the Fatigue Experience and a Breathing Awareness Meditation-Integrated mHealth App for Fatigue and Stress in Patients with Sarcoidosis.
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Christon Lillian M, Chandler Jessica, Benfield Katie, Pairet Samantha, Hoffman Maria, Treiber Frank, James W Ennis
Аннотация
OBJECTIVE: Sarcoidosis-associated fatigue is a debilitating consequence of sarcoidosis, a multi-system inflammatory disease, and may be related to increased stress associated with sarcoidosis. Breathing awareness meditation has potential as an intervention for managing stress and fatigue for sarcoidosis patients (SPs). This project's aim was to obtain feedback from key informants to design and tailor a patient-centered Sarcoidosis Patient Resource and Companion (SPARC) mHealth App developed for SPs to manage fatigue and stress at home using breathing awareness meditation.
METHODS: We used a mixed-method patient/user-centered design with triangulation to understand SPs experiences of sarcoidosis-associated fatigue and stress (n = 13), and obtain feedback on the SPARC App-prototype integrating breathing awareness meditation from these SPs and health care team members (HCTMs; n = 5). Using deductive content analysis, transcribed interviews were coded for themes and subthemes.
RESULTS: We report on findings from qualitative interviews and assessment of SPs' experiences including themes describing fatigue/stress interactions. Themes indicated that SPs find fatigue to be a profoundly difficult experience affecting multiple domains of functioning for which they perceive few effective strategies to cope. SPs and HCTMs shared feedback on the SPARC App-prototype after a test session; it was reported to be user friendly and to have potential for improving fatigue/stress, and key points for tailoring the App to SPs were shared.
CONCLUSION: Sarcoidosis-associated fatigue poses a significant burden for SPs. The SPARC App-prototype with breathing awareness meditation was acceptable and feasible to use and was well-received by SPs and HCTMs. Future iterations of the SPARC App to test the effect of breathing awareness meditation on fatigue will need to incorporate recommendations for tailoring for SPs.
METHODS: We used a mixed-method patient/user-centered design with triangulation to understand SPs experiences of sarcoidosis-associated fatigue and stress (n = 13), and obtain feedback on the SPARC App-prototype integrating breathing awareness meditation from these SPs and health care team members (HCTMs; n = 5). Using deductive content analysis, transcribed interviews were coded for themes and subthemes.
RESULTS: We report on findings from qualitative interviews and assessment of SPs' experiences including themes describing fatigue/stress interactions. Themes indicated that SPs find fatigue to be a profoundly difficult experience affecting multiple domains of functioning for which they perceive few effective strategies to cope. SPs and HCTMs shared feedback on the SPARC App-prototype after a test session; it was reported to be user friendly and to have potential for improving fatigue/stress, and key points for tailoring the App to SPs were shared.
CONCLUSION: Sarcoidosis-associated fatigue poses a significant burden for SPs. The SPARC App-prototype with breathing awareness meditation was acceptable and feasible to use and was well-received by SPs and HCTMs. Future iterations of the SPARC App to test the effect of breathing awareness meditation on fatigue will need to incorporate recommendations for tailoring for SPs.