Stephanie T Gumuchian1, Vanessa C Delisle1, Sandra Peláez1, Vanessa L Malcarne2, Ghassan El-Baalbaki3, Linda Kwakkenbos4, Lisa R Jewett1, Marie-Eve Carrier5, Mia Pépin5, Brett D Thombs1. 1. Lady Davis Institute of the Jewish General Hospital and McGill University, Montreal, Quebec, Canada. 2. San Diego Joint Doctoral Program in Clinical Psychology, San Diego State University/University of California, San Diego. 3. University of Quebec at Montreal, Montreal, Quebec, Canada. 4. Lady Davis Institute of the Jewish General Hospital and McGill University, Montreal, Quebec, Canada, and Behavioural Science Institute, Clinical Psychology, Radboud University, Nijmegen, The Netherlands. 5. Lady Davis Institute of the Jewish General Hospital, Montreal, Quebec, Canada.
Abstract
OBJECTIVE: Peer-led support groups are an important resource for many people with scleroderma (systemic sclerosis; SSc). Little is known, however, about barriers to participation. The objective of this study was to identify reasons why some people with SSc do not participate in SSc support groups. METHODS: A 21-item survey was used to assess reasons for nonattendance among SSc patients in Canada and the US. Exploratory factor analysis (EFA) was conducted, using the software MPlus 7, to group reasons for nonattendance into themes. RESULTS: A total of 242 people (202 women) with SSc completed the survey. EFA results indicated that a 3-factor model best described the data (χ2 [150] = 302.7; P < 0.001; Comparative Fit Index = 0.91, Tucker-Lewis Index = 0.88, root mean square error of approximation = 0.07, factor intercorrelations 0.02-0.43). The 3 identified themes, reflecting reasons for not attending SSc support groups were personal reasons (9 items; e.g., already having enough support), practical reasons (7 items; e.g., no local support groups available), and beliefs about support groups (5 items; e.g., support groups are too negative). On average, respondents rated 4.9 items as important or very important reasons for nonattendance. The 2 items most commonly rated as important or very important were 1) already having enough support from family, friends, or others, and 2) not knowing of any SSc support groups offered in my area. CONCLUSION: SSc organizations may be able to address limitations in accessibility and concerns about SSc support groups by implementing online support groups, better informing patients about support group activities, and training support group facilitators.
OBJECTIVE: Peer-led support groups are an important resource for many people with scleroderma (systemic sclerosis; SSc). Little is known, however, about barriers to participation. The objective of this study was to identify reasons why some people with SSc do not participate in SSc support groups. METHODS: A 21-item survey was used to assess reasons for nonattendance among SSc patients in Canada and the US. Exploratory factor analysis (EFA) was conducted, using the software MPlus 7, to group reasons for nonattendance into themes. RESULTS: A total of 242 people (202 women) with SSc completed the survey. EFA results indicated that a 3-factor model best described the data (χ2 [150] = 302.7; P < 0.001; Comparative Fit Index = 0.91, Tucker-Lewis Index = 0.88, root mean square error of approximation = 0.07, factor intercorrelations 0.02-0.43). The 3 identified themes, reflecting reasons for not attending SSc support groups were personal reasons (9 items; e.g., already having enough support), practical reasons (7 items; e.g., no local support groups available), and beliefs about support groups (5 items; e.g., support groups are too negative). On average, respondents rated 4.9 items as important or very important reasons for nonattendance. The 2 items most commonly rated as important or very important were 1) already having enough support from family, friends, or others, and 2) not knowing of any SSc support groups offered in my area. CONCLUSION: SSc organizations may be able to address limitations in accessibility and concerns about SSc support groups by implementing online support groups, better informing patients about support group activities, and training support group facilitators.
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: Brett D Thombs; Laura Dyas; Mia Pépin; Kylene Aguila; Marie-Eve Carrier; Lydia Tao; Sami Harb; Vanessa L Malcarne; Ghassan El-Baalbaki; Sandra Peláez; Maureen Sauve; Marie Hudson; Robert W Platt Journal: BMJ Open Date: 2019-11-11 Impact factor: 2.692