https://orcid.org/0000-0002-0901-616X
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ABSTRACT
Objective
Fatigue is a debilitating consequence of sarcoidosis, a multi-system inflammatory disease, potentially related to increased stress associated with the disease. Breathing awareness meditation has potential as an intervention for managing stress and fatigue for patients with sarcoidosis (PS). The project 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 PS to manage fatigue/stress at home using meditation.
Methods
A mixed-method patient/user-centered design was used with triangulation to understand patient experiences of sarcoidosis-associated fatigue and stress (n = 13), and to obtain feedback on the SPARC App prototype integrating meditation from patients and health care team members (HCTMs; n = 5). Using deductive content analysis, transcribed interviews were coded for themes/subthemes.
Results
Themes indicated that sarcoidosis patients find fatigue to be a profoundly difficult and stressful experience affecting multiple domains of functioning with few effective strategies to cope with these challenges. Patients and HCTMs shared feedback on the SPARC App prototype after a test session and found it user friendly with potential to improve fatigue/stress. Key points for tailoring the App to patients were shared.
Conclusion
Sarcoidosis-associated fatigue poses a significant burden for patients. The SPARC App prototype with breathing awareness meditation was acceptable, feasible and well-received by patients and HCTMs. Future iterations of the SPARC App to test the effect of meditation on fatigue will need to incorporate study recommendations for individual tailoring for these patients.
Acknowledgements
We are grateful to the patients and healthcare team members who contributed to this project.
Disclosure statement
No potential conflict of interest was reported by the author(s).
Notes
1 The original version of the App captured heart rate via detection of fingertip pulsatile blood flow changes via proprietary reflective photoplethysmography software. While this was novel in early iterations of this Breathing Awareness Meditation App, the team sought to incorporate a more hands-free, easy to use method to capture heart rate and engage in mediation while fully relaxed. Thus, the integration of the Fitbit Versa 2 watch with the meditation App was completed prior to the demonstrations and interviews.
Additional information
Funding
Notes on contributors
Lillian M. Christon
Dr. Lillian M. Christon is a licensed psychologist and faculty member conducting research, providing direct patient care, and educating trainees in the College of Medicine, Division of Bio-Behavioral Medicine.
Jessica Chandler
Dr. Jessica Chandler (faculty member) all conduct research in the Technology Applications Center for Healthful Lifestyles (TACHL) through the College of Nursing.
Katie Benfield
Katie Benfield (nurse coordinator), conduct research and patient care through the College of Medicine’s MUSC Susan Pearlstine Sarcoidosis Center of Excellence.
Samantha Pairet
Samantha Pairet (research coordinator) all conduct research in the Technology Applications Center for Healthful Lifestyles (TACHL) through the College of Nursing.
Maria Hoffman
Maria Hoffman (program coordinator) conduct research and patient care through the College of Medicine’s MUSC Susan Pearlstine Sarcoidosis Center of Excellence.
Frank Treiber
Dr. Frank Treiber (retired faculty member), all conduct research in the Technology Applications Center for Healthful Lifestyles (TACHL) through the College of Nursing.
W. Ennis James
Dr. W. Ennis James (faculty member, physician scientist), conduct research and patient care through the College of Medicine’s MUSC Susan Pearlstine Sarcoidosis Center of Excellence.