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

Autor: 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, Catherine Fortuné, Amy Gietzen, Geneviève Guillot, Karen Nielsen, Nancy Lewis, Michelle Richard, Maureen Sauvé, Joep Welling, Lacey Battaglio, Tina Burger, Adrienne Burleigh, Peggy Collins, Jacob Davila, Louise Inglese, Franny Kaplan, Violet Konrad, Silvia Petrella, Audrey Potvin, Natalie Puccio, Karen Gottesman, Marie Hudson, Laura K. Hummers, Amanda Lawrie-Jones, Vanessa L. Malcarne, Maureen D. Mayes, Warren R. Nielson, Shervin Assassi, Carolyn Ells, Kim Fligelstone, Tracy Frech, Daphna Harel, Monique Hinchcliff, Sindhu R. Johnson, Maggie Larche, Catarina Leite, Christelle Nguyen, Janet Pope, François Rannou, Tatiana Sofia Rodriguez-Reyna, Anne A. Schouffoer, Maria E. Suarez-Almazor, Christian Agard, Nassim Ait Abdallah, Marc André, Elana J. Bernstein, Sabine Berthier, Lyne Bissonnette, Alessandra Bruns, Patricia Carreira, Marion Casadevall, Benjamin Chaigne, Lorinda Chung, Benjamin Crichi, Christopher Denton, Robyn Domsic, James V. Dunne, Bertrand Dunogue, Regina Fare, Dominique Farge-Bancel, Paul R. Fortin, Jessica Gordon, Brigitte Granel-Rey, Aurélien Guffroy, Genevieve Gyger, Eric Hachulla, Ariane L. Herrick, Sabrina Hoa, Alena Ikic, Niall Jones, Nader Khalidi, Marc Lambert, David Launay, Yvonne C. Lee, Hélène Maillard, Nancy Maltez, Joanne Manning, Isabelle Marie, Maria Martin Lopez, Thierry Martin, Ariel Masetto, François Maurier, Arsene Mekinian, Sheila Melchor Díaz, Mandana Nikpour, Louis Olagne, Vincent Poindron, Susanna Proudman, Alexis Régent, Sébastien Rivière, David Robinson, Esther Rodríguez Almazar, Sophie Roux, Perrine Smets, Vincent Sobanski, Robert Spiera, Virginia Steen, Evelyn Sutton, Carter Thorne, Pearce Wilcox, Mara Cañedo Ayala, Marie-Nicole Discepola, Laury Montemurro, Elsa Lynn Nassar, Marieke Alexandra Neyer, Julia Nordlund, Nora Østbø, Sabrina Provencher
Rok vydání: 2023
Předmět:
Zdroj: Disability and Rehabilitation
ISSN: 0433-5279
0963-8288
Popis: 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). 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. 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. 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. 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. 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.
Databáze: OpenAIRE
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