A qualitative interview study exploring the psychological health impacts of the SPIN-CHAT program among people with systemic sclerosis at the onset of COVID-19: perceptions of trial participants and research team members

Abstract

Purpose: Explore trial participants' and research team members' perceptions of the impact of the videoconference-based, supportive care program (SPIN-CHAT Program) during early COVID-19 for individuals with systemic sclerosis (SSc). Methods: Data were collected cross-sectionally. A social constructivist paradigm was adopted, and oneon-one videoconference-based, semi-structured interviews were conducted with SPIN-CHAT Trial participants and research team members. A hybrid inductive-deductive approach and reflexive thematic analysis were used. Results: Of the 40 SPIN-CHAT Trial participants and 28 research team members approached, 30 trial participants (Mean age ¼ 54.9; SD ¼ 13.0 years) and 22 research team members agreed to participate. Those who took part in interviews had similar characteristics to those who declined. Five themes were identified: ( 1) The SPIN-CHAT Program conferred a range of positive psychological health outcomes, (2) People who don't have SSc don't get it: The importance of SSc-specific programming, (3) The group-based format of the SPIN-CHAT Program created a safe space to connect and meet similar others, (4) The structure and schedule of the SPIN-CHAT Program reduced feelings of boredom and contributed to enhanced psychological health, (5) The necessity of knowledge, skills, and tools to self-manage SSc and navigate COVID-19. Conclusion: Participants' and research team members' perspectives elucidated SPIN-CHAT Program benefits and how these benefits may have been realized. Results underscore the importance of social support from similar others, structure, and self-management to enhance psychological health during COVID-19. Trial Registration: clinicaltrials.gov (NCT04335279) � IMPLICATIONS FOR REHABILITATION � The videoconference-based, supportive care SPIN-CHAT Program enhanced psychological health amongst individuals affected by systemic sclerosis. � SPIN-CHAT Program participants and research team members shared that being around similar others, program structure, and self-management support were important and may have contributed to enhanced psychological health. � Further efforts are required to explore experiences within supportive care programs to better understand if and how psychological health is impacted.

Exploring research team members’ and trial participants’ perceptions of acceptability and implementation within one videoconference-based supportive care program for individuals affected by systemic sclerosis during COVID-19: a qualitative interview study

“…The qualitative data analyzed and reported herein were collected as part of a larger cross-sectional, multiple perspectives follow-up study exploring the SPIN-CHAT Trial [ 30 ], which had two distinct foci resulting in two manuscripts (see Wurz et al [ 22 ]. for the other manuscript).…”

“…There were no statistically significant improvements in mental health outcomes among SPIN-CHAT Program (i.e., intervention) participants compared to waitlist control participants immediately post-intervention, but significant improvements in anxiety (standardized mean difference = 0.31, 95% CI 0.03–0.58) and depression symptoms (standardized mean difference = 0.31, 95% CI 0.07–0.55) were found in the intervention group compared with the waitlist control group 6 weeks post-intervention [ 21 ]. Findings from a follow-up qualitative evaluation of the SPIN-CHAT Program suggest a range of additional mental health benefits among some participants, including reductions in feelings of boredom and stress and greater feelings of happiness and belonging [ 22 ].…”

The COVID-19 pandemic highlights the need for a psychological support in systemic sclerosis patients.

“…The COVID-19 pandemic highlights the need for a psychological support in systemic sclerosis patients programmes conducted to aid patients with chronic disease in such a stressful era (18)(19)(20)(21). The study by Henry et al also assessed the trend of psychological symptoms when patients faced new challenges (17).…”