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Effects of training and support programs for leaders of illness-based support groups: commentary and updated evidence
BACKGROUND: Peer-led support groups play an important role in supporting people with chronic diseases. They may be particularly important for people with rare diseases who typically do not have access to professional support options that focus on their disease-specific needs. Many peer-led support g...
Autores principales: | , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2019
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6402093/ https://www.ncbi.nlm.nih.gov/pubmed/30836989 http://dx.doi.org/10.1186/s13643-019-0981-0 |
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author | Turner, Kimberly A. Rice, Danielle B. Carboni-Jiménez, Andrea Boruff, Jill Thombs, Brett D. |
author_facet | Turner, Kimberly A. Rice, Danielle B. Carboni-Jiménez, Andrea Boruff, Jill Thombs, Brett D. |
author_sort | Turner, Kimberly A. |
collection | PubMed |
description | BACKGROUND: Peer-led support groups play an important role in supporting people with chronic diseases. They may be particularly important for people with rare diseases who typically do not have access to professional support options that focus on their disease-specific needs. Many peer-led support groups in rare diseases, however, are not sustained, and many patients do not have access to support groups. Training and education for peer support group leaders could address barriers to initiating and sustaining groups, but there is little evidence on the effectiveness of support group leader training programs. A previous systematic review evaluated the effects of training programs for peer leaders of support groups for people with medical illness on leader and support group outcomes, but it identified only one randomized controlled trial (RCT) that compared high- and low-resource training programs for cancer support group leaders. The trial did not find evidence that the high-resource program was more effective, but was limited by a small sample size and serious methodological limitations. To meet the needs of people living with the rare autoimmune connective tissue disease scleroderma, the Scleroderma Patient-centered Intervention Network has partnered with patient organizations to develop the Scleroderma Support group Leader EDucation Program, and a full-scale RCT to test the effectiveness of the program is planned. To verify the need for such a trial, we updated the previous systematic review. UPDATED EVIDENCE: Review methods for the update were unchanged from the initial review. The updated database search yielded 1504 unique citations in addition to the 9757 assessed for eligibility in the previous review. All additional citations identified in the updated search were excluded at the title and abstract review stage. CONCLUSIONS: Our systematic review update found that there is presently insufficient evidence on the effectiveness of training and support programs for peer leaders of disease-based support groups, highlighting the need for well-designed and rigorously conducted RCTs to examine the effects of training for peer leaders of support groups, especially in a rare disease context. The Scleroderma Patient-centered Intervention Network’s trial of the Scleroderma Support group Leader EDucation Program will serve as such a trial. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42018096369 ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s13643-019-0981-0) contains supplementary material, which is available to authorized users. |
format | Online Article Text |
id | pubmed-6402093 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2019 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-64020932019-03-14 Effects of training and support programs for leaders of illness-based support groups: commentary and updated evidence Turner, Kimberly A. Rice, Danielle B. Carboni-Jiménez, Andrea Boruff, Jill Thombs, Brett D. Syst Rev Commentary BACKGROUND: Peer-led support groups play an important role in supporting people with chronic diseases. They may be particularly important for people with rare diseases who typically do not have access to professional support options that focus on their disease-specific needs. Many peer-led support groups in rare diseases, however, are not sustained, and many patients do not have access to support groups. Training and education for peer support group leaders could address barriers to initiating and sustaining groups, but there is little evidence on the effectiveness of support group leader training programs. A previous systematic review evaluated the effects of training programs for peer leaders of support groups for people with medical illness on leader and support group outcomes, but it identified only one randomized controlled trial (RCT) that compared high- and low-resource training programs for cancer support group leaders. The trial did not find evidence that the high-resource program was more effective, but was limited by a small sample size and serious methodological limitations. To meet the needs of people living with the rare autoimmune connective tissue disease scleroderma, the Scleroderma Patient-centered Intervention Network has partnered with patient organizations to develop the Scleroderma Support group Leader EDucation Program, and a full-scale RCT to test the effectiveness of the program is planned. To verify the need for such a trial, we updated the previous systematic review. UPDATED EVIDENCE: Review methods for the update were unchanged from the initial review. The updated database search yielded 1504 unique citations in addition to the 9757 assessed for eligibility in the previous review. All additional citations identified in the updated search were excluded at the title and abstract review stage. CONCLUSIONS: Our systematic review update found that there is presently insufficient evidence on the effectiveness of training and support programs for peer leaders of disease-based support groups, highlighting the need for well-designed and rigorously conducted RCTs to examine the effects of training for peer leaders of support groups, especially in a rare disease context. The Scleroderma Patient-centered Intervention Network’s trial of the Scleroderma Support group Leader EDucation Program will serve as such a trial. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42018096369 ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s13643-019-0981-0) contains supplementary material, which is available to authorized users. BioMed Central 2019-03-05 /pmc/articles/PMC6402093/ /pubmed/30836989 http://dx.doi.org/10.1186/s13643-019-0981-0 Text en © The Author(s). 2019 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. |
spellingShingle | Commentary Turner, Kimberly A. Rice, Danielle B. Carboni-Jiménez, Andrea Boruff, Jill Thombs, Brett D. Effects of training and support programs for leaders of illness-based support groups: commentary and updated evidence |
title | Effects of training and support programs for leaders of illness-based support groups: commentary and updated evidence |
title_full | Effects of training and support programs for leaders of illness-based support groups: commentary and updated evidence |
title_fullStr | Effects of training and support programs for leaders of illness-based support groups: commentary and updated evidence |
title_full_unstemmed | Effects of training and support programs for leaders of illness-based support groups: commentary and updated evidence |
title_short | Effects of training and support programs for leaders of illness-based support groups: commentary and updated evidence |
title_sort | effects of training and support programs for leaders of illness-based support groups: commentary and updated evidence |
topic | Commentary |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6402093/ https://www.ncbi.nlm.nih.gov/pubmed/30836989 http://dx.doi.org/10.1186/s13643-019-0981-0 |
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