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

Amanda Wurz; Delaney Duchek; Kelsey Ellis; Mannat Bansal; Marie-Eve Carrier; Lydia Tao; Laura Dyas; Linda Kwakkenbos; Brooke Levis; Ghassan El-Baalbaki; Danielle B Rice; Yin Wu; Richard S Henry; Laura Bustamante; Sami Harb; Shannon Hebblethwaite; Scott B Patten; Susan J Bartlett; John Varga; Luc Mouthon; Sarah Markham; Brett D Thombs; S Nicole Culos-Reed; SPIN-CHAT Patient Advisory Team; Program Facilitators; Scleroderma Patient-centered Intervention Network Investigators

doi:10.1080/09638288.2023.2169775

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

Disabil Rehabil. 2024 Feb;46(3):533-545. doi: 10.1080/09638288.2023.2169775. Epub 2023 Jan 28.

Authors

Amanda Wurz^{1

2}, Delaney Duchek², Kelsey Ellis², 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; Scleroderma Patient-centered Intervention Network Investigators

Affiliations

¹ School of Kinesiology, University of the Fraser Valley, Chilliwack, Canada.
² Faculty of Kinesiology, University of Calgary, Calgary, Canada.
³ Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, 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 Radboudumc Center for Mindfulness, Department of Psychiatry, Radboud Institute for Health Sciences, Radboud University Medical Center, Nijmegen, The Netherlands.
⁹ Department of Epidemiology, Biostatistics, and Occupational Health, McGill University, Montreal, 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, Canada.
¹² Department of Psychology, McGill University, Montreal, Canada.
¹³ Department of Psychiatry, McGill University, Montreal, Canada.
¹⁴ Department of Applied Human Sciences, Concordia University, Montreal, Canada.
¹⁵ Department of Community Health Sciences, University of Calgary, Calgary, Canada.
¹⁶ Hotchkiss Brain Institute and O'Brien Institute for Public Health, University of Calgary, Calgary, Canada.
¹⁷ Department of Medicine, McGill University, Montreal, Canada.
¹⁸ Research Institute, McGill University Health Centre, Montreal, 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, Canada.
²⁴ Department of Oncology, Cumming School of Medicine, University of Calgary, Calgary, Canada.
²⁵ Department of Psychosocial Resources, Tom Baker Cancer Centre, Cancer Care, Alberta Health Services, Calgary, Canada.

PMID: 36708187
DOI: 10.1080/09638288.2023.2169775

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 one-on-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 = 54.9; SD = 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 REHABILITATIONThe 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.

Keywords: Qualitative; experiences; mental health; remote; scleroderma; videoconference-based.

MeSH terms

Adult
Aged
COVID-19* / epidemiology
Clinical Trials as Topic
Humans
Mental Health
Middle Aged
Qualitative Research
Scleroderma, Systemic* / therapy
Social Support

Associated data

ClinicalTrials.gov/NCT04335279