Impact of a resilience-building energy management intervention for people with systemic sclerosis: a mixed methods study

Yen T Chen; Alexandra E Harper; Tiffany Phanhdone; Mary Alore; Sheri Hicks; Adam Pape; Gina M Jay; Shannen Bolde; Jennie Feldpausch; Timothy C Guetterman; Dinesh Khanna; Susan L Murphy

doi:10.1093/rap/rkae040

Impact of a resilience-building energy management intervention for people with systemic sclerosis: a mixed methods study

Rheumatol Adv Pract. 2024 Mar 8;8(2):rkae040. doi: 10.1093/rap/rkae040. eCollection 2024.

Authors

Affiliations

¹ Division of Rheumatology, Department of Internal Medicine, University of Michigan, Ann Arbor, MI, USA.
² Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA.
³ Rush University Medical Center, Chicago, IL, USA.
⁴ Department of Family Medicine, University of Michigan, Ann Arbor, MI, USA.

Abstract

Objectives: People with SSc often experience fatigue, which significantly affects daily life functioning and quality of life. We aimed to explore participants' experiences of a peer health-coached resilience-building energy management to enhance well-being (RENEW) intervention on symptoms and well-being and to use mixed methods to compare how SSc duration influenced the experiences of participants who had clinically significant fatigue improvement vs those who did not.

Methods: Semi-structured interviews were conducted with 21 participants from the parent clinical trial randomized to the RENEW intervention. Data were analysed using the rigorous and accelerated data reduction technique combined with thematic content analysis. A mixed methods approach used a joint display to identify themes related to the impact of SSc duration on fatigue improvement status. Participants were categorized into short/improvement, short/limited improvement, long/improvement, and long/limited improvement.

Results: Our team generated four themes: participant and peer health-coach relationship, physical and psychological well-being improvement, need for a tailored approach and easy program access through technology. Mixed methods analysis revealed that, regardless of SSc duration, participants with improved fatigue reported increasing self-awareness of SSc-related symptoms and learning coping strategies to manage fatigue. Participants in the short/improvement group reported preferences for slower pacing of the program and pairing with a coach with similar symptom severity. Participants in the long/limited improvement group sought SSc-specific symptom management information.

Conclusion: Incorporating peer health coaches and technology is beneficial for self-management interventions for people with SSc. Future tailoring of RENEW based on SSc duration and symptom severity is needed.

Clinical trial registration number: clinicatrials.gov, NCT04908943.

Keywords: fatigue; mixed methods study; peer health coach; resilience; symptom management; systemic sclerosis; well-being.

Associated data

ClinicalTrials.gov/NCT04908943

Abstract

Associated data

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