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

Amanda Wurz^{1

2}, Kelsey Ellis², Delaney Duchek², Mannat Bansal², Marie-Eve Carrier³, Lydia Tao³, Laura Dyas⁴, Linda Kwakkenbos^{5

6

7

8}, Brooke Levis^{3

9

10}, Ghassan El-Baalbaki¹¹, Danielle B Rice^{3

12}, Yin Wu¹³, Richard S Henry^{3

12}, Laura Bustamante¹⁴, Sami Harb^{3

13}, Shannon Hebblethwaite¹⁴, Scott B Patten^{15

16}, Susan J Bartlett^{17

18}, John Varga¹⁹, Luc Mouthon^{20

21}, Sarah Markham²², Brett D Thombs^{3

9

12

17

23}, S Nicole Culos-Reed^{2

24

25}; SPIN-CHAT Patient Advisory Team; Program Facilitators

Affiliations

¹ School of Kinesiology, University of the Fraser Valley, Chilliwack, BC, Canada.
² Faculty of Kinesiology, University of Calgary, Calgary, AB, Canada.
³ Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, QC, Canada.
⁴ National Scleroderma Foundation, Michigan Chapter, Southfield, MI, USA.
⁵ Clinical Psychology, Radboud University, Nijmegen, The Netherlands.
⁶ Department of Medical Psychology, Radboud Institute for Health Sciences, Radboud University Medical Center, Nijmegen, The Netherlands.
⁷ IQ Healthcare, Radboud Institute for Health Sciences, Radboud University Medical Center, Nijmegen, The Netherlands.
⁸ Department of Psychiatry, Radboudumc Center for Mindfulness, Radboud Institute for Health Sciences, Radboud University Medical Center, Nijmegen, The Netherlands.
⁹ Department of Epidemiology, Biostatistics, and Occupational Health, McGill University, Montreal, QC, Canada.
¹⁰ Centre for Prognosis Research, School of Primary, Community and Social Care, Keele University, Staffordshire, UK.
¹¹ Department of Psychology, Université du Québec à Montréal, Montreal, QC, Canada.
¹² Department of Psychology, McGill University, Montreal, QC, Canada.
¹³ Department of Psychiatry, McGill University, Montreal, QC, Canada.
¹⁴ Department of Applied Human Sciences, Concordia University, Montreal, QC, Canada.
¹⁵ Department of Community Health Sciences, University of Calgary, Calgary, AB, Canada.
¹⁶ Hotchkiss Brain Institute and O'Brien Institute for Public Health, University of Calgary, Calgary, AB, Canada.
¹⁷ Department of Medicine, McGill University, Montreal, QC, Canada.
¹⁸ Research Institute, McGill University Health Centre, Montreal, QC, Canada.
¹⁹ University of Michigan, Ann Arbor, MI, USA.
²⁰ Service de Médecine Interne, Centre de Référence Maladies Auto-immunes et Systémiques Rares d'Ile de France, Hôpital Cochin, Assistance Publique, Hôpitaux de Paris (APHP), Paris, France.
²¹ APHP-CUP, Hôpital Cochin, Université de Paris, Paris, France.
²² Department of Biostatistics and Health Informatics, King's College London, London, UK.
²³ Biomedical Ethics Unit, McGill University, Montreal, QC, Canada.
²⁴ Department of Oncology, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada.
²⁵ Department of Psychosocial Resources, Tom Baker Cancer Centre, Cancer Care, Alberta Health Services, Calgary, AB, Canada.

PMID: 36999812
PMCID: PMC10314727
DOI: 10.1093/tbm/ibac091

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

Amanda Wurz et al. Transl Behav Med. 2023.

. 2023 Jul 1;13(7):442-452.

doi: 10.1093/tbm/ibac091.

Authors

Affiliations

¹ School of Kinesiology, University of the Fraser Valley, Chilliwack, BC, Canada.
² Faculty of Kinesiology, University of Calgary, Calgary, AB, Canada.
³ Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, QC, Canada.
⁴ National Scleroderma Foundation, Michigan Chapter, Southfield, MI, USA.
⁵ Clinical Psychology, Radboud University, Nijmegen, The Netherlands.
⁶ Department of Medical Psychology, Radboud Institute for Health Sciences, Radboud University Medical Center, Nijmegen, The Netherlands.
⁷ IQ Healthcare, Radboud Institute for Health Sciences, Radboud University Medical Center, Nijmegen, The Netherlands.
⁸ Department of Psychiatry, Radboudumc Center for Mindfulness, Radboud Institute for Health Sciences, Radboud University Medical Center, Nijmegen, The Netherlands.
⁹ Department of Epidemiology, Biostatistics, and Occupational Health, McGill University, Montreal, QC, Canada.
¹⁰ Centre for Prognosis Research, School of Primary, Community and Social Care, Keele University, Staffordshire, UK.
¹¹ Department of Psychology, Université du Québec à Montréal, Montreal, QC, Canada.
¹² Department of Psychology, McGill University, Montreal, QC, Canada.
¹³ Department of Psychiatry, McGill University, Montreal, QC, Canada.
¹⁴ Department of Applied Human Sciences, Concordia University, Montreal, QC, Canada.
¹⁵ Department of Community Health Sciences, University of Calgary, Calgary, AB, Canada.
¹⁶ Hotchkiss Brain Institute and O'Brien Institute for Public Health, University of Calgary, Calgary, AB, Canada.
¹⁷ Department of Medicine, McGill University, Montreal, QC, Canada.
¹⁸ Research Institute, McGill University Health Centre, Montreal, QC, Canada.
¹⁹ University of Michigan, Ann Arbor, MI, USA.
²⁰ Service de Médecine Interne, Centre de Référence Maladies Auto-immunes et Systémiques Rares d'Ile de France, Hôpital Cochin, Assistance Publique, Hôpitaux de Paris (APHP), Paris, France.
²¹ APHP-CUP, Hôpital Cochin, Université de Paris, Paris, France.
²² Department of Biostatistics and Health Informatics, King's College London, London, UK.
²³ Biomedical Ethics Unit, McGill University, Montreal, QC, Canada.
²⁴ Department of Oncology, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada.
²⁵ Department of Psychosocial Resources, Tom Baker Cancer Centre, Cancer Care, Alberta Health Services, Calgary, AB, Canada.

PMID: 36999812
PMCID: PMC10314727
DOI: 10.1093/tbm/ibac091

Abstract

The SPIN-CHAT Program was designed to support mental health among individuals with systemic sclerosis (SSc; commonly known as scleroderma) and at least mild anxiety symptoms at the onset of COVID-19. The program was formally evaluated in the SPIN-CHAT Trial. Little is known about program and trial acceptability, and factors impacting implementation from the perspectives of research team members and trial participants. Thus, the propose of this follow-up study was to explore research team members' and trial participants' experiences with the program and trial to identify factors impacting acceptability and successful implementation. Data were collected cross-sectionally through one-on-one, videoconference-based, semi-structured interviews with 22 research team members and 30 purposefully recruited trial participants (Mage = 54.9, SD = 13.0 years). A social constructivist paradigm was adopted, and data were analyzed thematically. Data were organized into seven themes: (i) getting started: the importance of prolonged engagement and exceeding expectations; (ii) designing the program and trial: including multiple features; (iii) training: research team members are critical to positive program and trial experiences; (iv) offering the program and trial: it needs to be flexible and patient-oriented; (v) maximizing engagement: navigating and managing group dynamics; (vi) delivering a videoconference-based supportive care intervention: necessary, appreciated, and associated with some barriers; and (vii) refining the program and trial: considering modification when offered beyond the period of COVID-19 restrictions. Trial participants were satisfied with and found the SPIN-CHAT Program and Trial to be acceptable. Results offer implementation data that can guide the design, development, and refinement of other supportive care programs seeking to promote psychological health during and beyond COVID-19.

Keywords: Experiences; Qualitative; Remote; Scleroderma; Virtual.

Plain language summary

The Scleroderma Patient-centered Intervention Network COVID-19 Home-isolation Activities Together (SPIN-CHAT) Program, a videoconference-based supportive care program, was designed to protect and enhance mental health in individuals affected by systemic sclerosis (commonly known as scleroderma) with at least mild anxiety symptoms during the COVID-19 pandemic. A trial was conducted to evaluate the SPIN-CHAT Program, and results were generally positive. However, important gaps in knowledge remained. Specifically, research team members’ and participants’ perceptions of SPIN-CHAT Trial acceptability (including satisfaction) and factors impacting implementation of the SPIN-CHAT Program had not yet been explored. To fill this gap, we conducted one-on-one, videoconference-based, semi-structured interviewed with 22 research team members and 30 purposefully recruited trial participants. Interviews sought to gain insights into research team members’ and trial participants’ experiences within the SPIN-CHAT Program, delivery preferences, and aspects that were/were not beneficial. Findings suggest research team members and participants valued the SPIN-CHAT Program and found the trial to be acceptable. Results also highlight important factors to consider when designing, developing, and/or refining videoconference-based supportive care programs.

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References

1. Brülhart M, Klotzbücher V, Lalive R, Reich SK.. Mental health concerns during the COVID-19 pandemic as revealed by helpline calls. Nature. 2021; 600(7887):121–126. - PMC - PubMed
1. Wirkner J, Christiansen H, Knaevelsrud C, et al. Mental health in times of the COVID-19 pandemic. Eur Psychol. 2021; 26(4):310–322.
1. Thombs B, Bonardi O, Rice DB, et al. Living systematic review of mental health in COVID-19. 2022. Available at: https://www.depressd.ca/covid-19-mental-health. Accessed June 22, 2022.
1. Sun Y, Wu Y, Bonardi O, et al. Comparison of mental health symptoms prior to and during COVID-19: evidence from a living systematic review and meta-analysis. MedRxiv. 2021. Preprint: not peer reviewed.
1. Aknin LB, Andretti B, Goldszmidt R, et al. Policy stringency and mental health during the COVID-19 pandemic: a longitudinal analysis of data from 15 countries. Lancet Publ Health. 2022; 7(5):e417–e426. - PMC - PubMed

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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

Affiliations

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

Authors

Affiliations

Abstract

Plain language summary

References

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Medical

Miscellaneous