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Effects of a support group leader education program jointly developed by health professionals and patients on peer leader self-efficacy among leaders of scleroderma support groups: a two-arm parallel partially nested randomised controlled trial

BACKGROUND: More people with rare diseases likely receive disease education and emotional and practical support from peer-led support groups than any other way. Most rare-disease support groups are delivered outside of the health care system by untrained leaders. Potential benefits may not be achiev...

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Autores principales: Thombs, Brett D., Levis, Brooke, Carrier, Marie-Eve, Dyas, Laura, Nordlund, Julia, Tao, Lydia, Aguila, Kylene, Bourgeault, Angelica, Konrad, Violet, Sauvé, Maureen, Connolly, Kerri, Henry, Richard S., Østbø, Nora, Levis, Alexander W., Kwakkenbos, Linda, Malcarne, Vanessa L., El-Baalbaki, Ghassan, Hudson, Marie, Wurz, Amanda, Culos-Reed, S. Nicole, Platt, Robert W., Benedetti, Andrea
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9616616/
https://www.ncbi.nlm.nih.gov/pubmed/36307891
http://dx.doi.org/10.1186/s13023-022-02552-x
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author Thombs, Brett D.
Levis, Brooke
Carrier, Marie-Eve
Dyas, Laura
Nordlund, Julia
Tao, Lydia
Aguila, Kylene
Bourgeault, Angelica
Konrad, Violet
Sauvé, Maureen
Connolly, Kerri
Henry, Richard S.
Østbø, Nora
Levis, Alexander W.
Kwakkenbos, Linda
Malcarne, Vanessa L.
El-Baalbaki, Ghassan
Hudson, Marie
Wurz, Amanda
Culos-Reed, S. Nicole
Platt, Robert W.
Benedetti, Andrea
author_facet Thombs, Brett D.
Levis, Brooke
Carrier, Marie-Eve
Dyas, Laura
Nordlund, Julia
Tao, Lydia
Aguila, Kylene
Bourgeault, Angelica
Konrad, Violet
Sauvé, Maureen
Connolly, Kerri
Henry, Richard S.
Østbø, Nora
Levis, Alexander W.
Kwakkenbos, Linda
Malcarne, Vanessa L.
El-Baalbaki, Ghassan
Hudson, Marie
Wurz, Amanda
Culos-Reed, S. Nicole
Platt, Robert W.
Benedetti, Andrea
author_sort Thombs, Brett D.
collection PubMed
description BACKGROUND: More people with rare diseases likely receive disease education and emotional and practical support from peer-led support groups than any other way. Most rare-disease support groups are delivered outside of the health care system by untrained leaders. Potential benefits may not be achieved and harms, such as dissemination of inaccurate information, may occur. Our primary objective was to evaluate the effects of a rare-disease support group leader education program, which was developed collaboratively by researchers, peer support group leaders, and patient organization leaders, compared to waitlist control, on peer leader self-efficacy among scleroderma support group leaders. METHODS: The trial was a pragmatic, two-arm partially nested randomised controlled trial with 1:1 allocation into intervention or waitlist control. Eligible participants were existing or candidate peer support group leaders affiliated with a scleroderma patient organization. Leader training was delivered in groups of 5–6 participants weekly for 13 weeks in 60–90 min sessions via the GoToMeeting® videoconferencing platform. The program included 12 general leader training modules and one module specific to scleroderma. Primary outcome was leader self-efficacy, measured by the Support Group Leader Self-efficacy Scale (SGLSS) immediately post-intervention. Secondary outcomes were leader self-efficacy 3 months post-intervention; emotional distress, leader burnout, and volunteer satisfaction post-intervention and 3 months post-intervention; and program satisfaction among intervention participants post-intervention. RESULTS: One hundred forty-eight participants were randomised to intervention (N = 74) or waitlist (N = 74). Primary outcome data were provided by 146 (99%) participants. Mean number of sessions attended was 11.4 (standard deviation = 2.6). Mean program satisfaction score (CSQ-8) was 30.3 (standard deviation = 3.0; possible range 8–32). Compared to waitlist control, leader self-efficacy was higher post-intervention [SGLSS; 16.7 points, 95% CI 11.0–22.3; standardized mean difference (SMD) 0.84] and 3 months later (15.6 points, 95% CI 10.2–21.0; SMD 0.73); leader volunteer satisfaction was significantly higher at both assessments, emotional distress was lower post-intervention but not 3 months later, and leader burnout was not significantly different at either assessment. CONCLUSIONS: Peer support group leader education improved leader self-efficacy substantially. The program could be easily adapted for support group leaders in other rare diseases. Trial registration: NCT03965780; registered on May 29, 2019. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13023-022-02552-x.
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spelling pubmed-96166162022-10-30 Effects of a support group leader education program jointly developed by health professionals and patients on peer leader self-efficacy among leaders of scleroderma support groups: a two-arm parallel partially nested randomised controlled trial Thombs, Brett D. Levis, Brooke Carrier, Marie-Eve Dyas, Laura Nordlund, Julia Tao, Lydia Aguila, Kylene Bourgeault, Angelica Konrad, Violet Sauvé, Maureen Connolly, Kerri Henry, Richard S. Østbø, Nora Levis, Alexander W. Kwakkenbos, Linda Malcarne, Vanessa L. El-Baalbaki, Ghassan Hudson, Marie Wurz, Amanda Culos-Reed, S. Nicole Platt, Robert W. Benedetti, Andrea Orphanet J Rare Dis Research BACKGROUND: More people with rare diseases likely receive disease education and emotional and practical support from peer-led support groups than any other way. Most rare-disease support groups are delivered outside of the health care system by untrained leaders. Potential benefits may not be achieved and harms, such as dissemination of inaccurate information, may occur. Our primary objective was to evaluate the effects of a rare-disease support group leader education program, which was developed collaboratively by researchers, peer support group leaders, and patient organization leaders, compared to waitlist control, on peer leader self-efficacy among scleroderma support group leaders. METHODS: The trial was a pragmatic, two-arm partially nested randomised controlled trial with 1:1 allocation into intervention or waitlist control. Eligible participants were existing or candidate peer support group leaders affiliated with a scleroderma patient organization. Leader training was delivered in groups of 5–6 participants weekly for 13 weeks in 60–90 min sessions via the GoToMeeting® videoconferencing platform. The program included 12 general leader training modules and one module specific to scleroderma. Primary outcome was leader self-efficacy, measured by the Support Group Leader Self-efficacy Scale (SGLSS) immediately post-intervention. Secondary outcomes were leader self-efficacy 3 months post-intervention; emotional distress, leader burnout, and volunteer satisfaction post-intervention and 3 months post-intervention; and program satisfaction among intervention participants post-intervention. RESULTS: One hundred forty-eight participants were randomised to intervention (N = 74) or waitlist (N = 74). Primary outcome data were provided by 146 (99%) participants. Mean number of sessions attended was 11.4 (standard deviation = 2.6). Mean program satisfaction score (CSQ-8) was 30.3 (standard deviation = 3.0; possible range 8–32). Compared to waitlist control, leader self-efficacy was higher post-intervention [SGLSS; 16.7 points, 95% CI 11.0–22.3; standardized mean difference (SMD) 0.84] and 3 months later (15.6 points, 95% CI 10.2–21.0; SMD 0.73); leader volunteer satisfaction was significantly higher at both assessments, emotional distress was lower post-intervention but not 3 months later, and leader burnout was not significantly different at either assessment. CONCLUSIONS: Peer support group leader education improved leader self-efficacy substantially. The program could be easily adapted for support group leaders in other rare diseases. Trial registration: NCT03965780; registered on May 29, 2019. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13023-022-02552-x. BioMed Central 2022-10-28 /pmc/articles/PMC9616616/ /pubmed/36307891 http://dx.doi.org/10.1186/s13023-022-02552-x Text en © The Author(s) 2022 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Research
Thombs, Brett D.
Levis, Brooke
Carrier, Marie-Eve
Dyas, Laura
Nordlund, Julia
Tao, Lydia
Aguila, Kylene
Bourgeault, Angelica
Konrad, Violet
Sauvé, Maureen
Connolly, Kerri
Henry, Richard S.
Østbø, Nora
Levis, Alexander W.
Kwakkenbos, Linda
Malcarne, Vanessa L.
El-Baalbaki, Ghassan
Hudson, Marie
Wurz, Amanda
Culos-Reed, S. Nicole
Platt, Robert W.
Benedetti, Andrea
Effects of a support group leader education program jointly developed by health professionals and patients on peer leader self-efficacy among leaders of scleroderma support groups: a two-arm parallel partially nested randomised controlled trial
title Effects of a support group leader education program jointly developed by health professionals and patients on peer leader self-efficacy among leaders of scleroderma support groups: a two-arm parallel partially nested randomised controlled trial
title_full Effects of a support group leader education program jointly developed by health professionals and patients on peer leader self-efficacy among leaders of scleroderma support groups: a two-arm parallel partially nested randomised controlled trial
title_fullStr Effects of a support group leader education program jointly developed by health professionals and patients on peer leader self-efficacy among leaders of scleroderma support groups: a two-arm parallel partially nested randomised controlled trial
title_full_unstemmed Effects of a support group leader education program jointly developed by health professionals and patients on peer leader self-efficacy among leaders of scleroderma support groups: a two-arm parallel partially nested randomised controlled trial
title_short Effects of a support group leader education program jointly developed by health professionals and patients on peer leader self-efficacy among leaders of scleroderma support groups: a two-arm parallel partially nested randomised controlled trial
title_sort effects of a support group leader education program jointly developed by health professionals and patients on peer leader self-efficacy among leaders of scleroderma support groups: a two-arm parallel partially nested randomised controlled trial
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9616616/
https://www.ncbi.nlm.nih.gov/pubmed/36307891
http://dx.doi.org/10.1186/s13023-022-02552-x
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