Vanessa C Delisle1,2, Stephanie T Gumuchian1,2, Danielle B Rice1,2, Alexander W Levis1,2, Lorie A Kloda3, Annett Körner1,2, Brett D Thombs4,5. 1. McGill University, Montréal, QC, Canada. 2. Lady Davis Institute, Jewish General Hospital, 4333 Cote St-Catherine Road, Montréal, QC, H3T 1E4, Canada. 3. Concordia University, Montréal, QC, Canada. 4. McGill University, Montréal, QC, Canada. brett.thombs@mcgill.ca. 5. Lady Davis Institute, Jewish General Hospital, 4333 Cote St-Catherine Road, Montréal, QC, H3T 1E4, Canada. brett.thombs@mcgill.ca.
Abstract
BACKGROUND: Support groups are an important resource for many people living with rare diseases. The perceived benefits of participating in support groups for people with rare diseases and factors that may influence the ability to successfully establish and maintain these groups are not well understood. Thus, the objective of this scoping review was to provide a mapping of the available evidence on the (1) benefits or perceived benefits of participating in rare disease support groups and (2) barriers and facilitators of establishing and maintaining these groups. METHODS: CINAHL and PubMed were searched from January 2000 to August 2015, with no language restrictions. Publications that described the benefits or perceived benefits of participating in rare disease support groups or the barriers and facilitators of establishing and maintaining them were eligible for inclusion. Two investigators independently evaluated titles/abstracts and full-text publications for eligibility, and extracted data from each included publication. RESULTS: Ten publications were included in the scoping review. There was no trial evidence on support group benefits. All ten publications reported on the perceived benefits of participating in rare disease support groups. Three reported on barriers and facilitators of establishing and maintaining them. Overall, seven different perceived benefits of participating in rare disease support groups were identified: (1) meeting and befriending other people with the same rare disease and similar experiences; (2) learning about the disease and related treatments; (3) giving and receiving emotional support; (4) having a place to speak openly about the disease and one's feelings; (5) learning coping skills; (6) feeling empowered and hopeful; and (7) advocating to improve healthcare for other rare disease patients. Several facilitators (e.g., meeting via teleconference) and barriers (e.g., getting patients and/or family members to lead the group) of establishing and maintaining these groups were identified. CONCLUSIONS: Rare disease support groups are an important source of emotional and practical support for many patients. There is no trial evidence on the benefits of these groups and limited evidence on the perceived benefits and barriers and facilitators to establishing and maintaining them.
BACKGROUND: Support groups are an important resource for many people living with rare diseases. The perceived benefits of participating in support groups for people with rare diseases and factors that may influence the ability to successfully establish and maintain these groups are not well understood. Thus, the objective of this scoping review was to provide a mapping of the available evidence on the (1) benefits or perceived benefits of participating in rare disease support groups and (2) barriers and facilitators of establishing and maintaining these groups. METHODS: CINAHL and PubMed were searched from January 2000 to August 2015, with no language restrictions. Publications that described the benefits or perceived benefits of participating in rare disease support groups or the barriers and facilitators of establishing and maintaining them were eligible for inclusion. Two investigators independently evaluated titles/abstracts and full-text publications for eligibility, and extracted data from each included publication. RESULTS: Ten publications were included in the scoping review. There was no trial evidence on support group benefits. All ten publications reported on the perceived benefits of participating in rare disease support groups. Three reported on barriers and facilitators of establishing and maintaining them. Overall, seven different perceived benefits of participating in rare disease support groups were identified: (1) meeting and befriending other people with the same rare disease and similar experiences; (2) learning about the disease and related treatments; (3) giving and receiving emotional support; (4) having a place to speak openly about the disease and one's feelings; (5) learning coping skills; (6) feeling empowered and hopeful; and (7) advocating to improve healthcare for other rare disease patients. Several facilitators (e.g., meeting via teleconference) and barriers (e.g., getting patients and/or family members to lead the group) of establishing and maintaining these groups were identified. CONCLUSIONS: Rare disease support groups are an important source of emotional and practical support for many patients. There is no trial evidence on the benefits of these groups and limited evidence on the perceived benefits and barriers and facilitators to establishing and maintaining them.
Authors: Linda Kwakkenbos; Lisa R Jewett; Murray Baron; Susan J Bartlett; Dan Furst; Karen Gottesman; Dinesh Khanna; Vanessa L Malcarne; Maureen D Mayes; Luc Mouthon; Serge Poiraudeau; Maureen Sauve; Warren R Nielson; Janet L Poole; Shervin Assassi; Isabelle Boutron; Carolyn Ells; Cornelia Hm van den Ende; Marie Hudson; Ann Impens; Annett Körner; Catarina Leite; Angela Costa Maia; Cindy Mendelson; Janet Pope; Russell J Steele; Maria E Suarez-Almazor; Sara Ahmed; Stephanie Coronado-Montoya; Vanessa C Delisle; Shadi Gholizadeh; Yeona Jang; Brooke Levis; Katherine Milette; Sarah D Mills; Ilya Razykov; Rina S Fox; Brett D Thombs Journal: BMJ Open Date: 2013-08-07 Impact factor: 2.692
Authors: Nicole E Pal; Stephanie T Gumuchian; Vanessa C Delisle; Mia Pépin; Vanessa L Malcarne; Marie-Eve Carrier; Linda Kwakkenbos; Sandra Peláez; Ghassan El-Baalbaki; Brett D Thombs Journal: J Scleroderma Relat Disord Date: 2017-09-25
Authors: Eitan Mijiritsky; Michal Dekel-Steinkeller; Oren Peleg; Shlomi Kleinman; Clariel Ianculovici; Amir Shuster; Shimrit Arbel; Menachem Ben-Ezra; Maayan Shacham Journal: Int J Environ Res Public Health Date: 2021-06-25 Impact factor: 3.390