Stephanie T Gumuchian1,2, Sandra Peláez1,2, Vanessa C Delisle1,2, Marie-Eve Carrier1, Lisa R Jewett1,2, Ghassan El-Baalbaki3, Catherine Fortune4, Marie Hudson1,5, Annett Körner1,2, Linda Kwakkenbos1,6,7, Susan J Bartlett5,8, Brett D Thombs1,2,5,6,9,10. 1. a Lady Davis Institute for Medical Research , Jewish General Hospital , Montréal , Canada. 2. b Department of Educational and Counselling Psychology , McGill University , Montréal , Canada. 3. c Department of Psychology , Université du Québec à Montréal , Montréal , Canada. 4. d Scleroderma Society of Ontario , Hamilton , Canada. 5. e Department of Medicine , McGill University , Montréal , Canada. 6. f Department of Psychiatry , McGill University , Montréal , Canada. 7. g Behavioural Science Institute, Clinical Psychology , Radboud University , Nijmegen , the Netherlands. 8. h Department of Medicine , McGill University Health Center, McGill University , Montréal , Canada. 9. i Department of Epidemiology , Biostatistics, and Occupational Health, McGill University , Montréal , Canada. 10. j Department of Psychology , McGill University , Montréal , Canada.
Abstract
PURPOSE: Systemic sclerosis or scleroderma is a chronic, rare connective tissue disease with negative physical and psychological implications. Coping strategies used by scleroderma patients have not been studied in-depth. The objective of the present study was to gain a greater understanding of the coping strategies employed by people living with scleroderma. METHOD: Three semi-structured focus group discussions were conducted with a total of 22 people with scleroderma. Interviews were recorded, transcribed, and analyzed using content analysis. Coping strategies discussed were analyzed through Lazarus and Folkman's theoretical model of coping, including: (1) problem-focused, (2) emotion-focused, and (3) meaning-focused coping. RESULTS: Participants reported using a combination of problem-focused (e.g., professional help; seeking disease-related information), emotion-focused (e.g., social support; adaptive distraction techniques), and meaning-focused coping strategies (e.g., benefit finding; goal reappraisal) to help them to cope with and manage their disease. However, many patients reported having difficulty in accessing support services. CONCLUSIONS: Scleroderma patients use similar coping strategies as patients with more common diseases, but they may not have access to the same level of support services. Accessible interventions, including self-management programs, aimed at improving problem- and emotion-focused coping are needed. Further, increased access to support groups may provide patients with opportunities to obtain social support and enhance coping.
PURPOSE: Systemic sclerosis or scleroderma is a chronic, rare connective tissue disease with negative physical and psychological implications. Coping strategies used by sclerodermapatients have not been studied in-depth. The objective of the present study was to gain a greater understanding of the coping strategies employed by people living with scleroderma. METHOD: Three semi-structured focus group discussions were conducted with a total of 22 people with scleroderma. Interviews were recorded, transcribed, and analyzed using content analysis. Coping strategies discussed were analyzed through Lazarus and Folkman's theoretical model of coping, including: (1) problem-focused, (2) emotion-focused, and (3) meaning-focused coping. RESULTS:Participants reported using a combination of problem-focused (e.g., professional help; seeking disease-related information), emotion-focused (e.g., social support; adaptive distraction techniques), and meaning-focused coping strategies (e.g., benefit finding; goal reappraisal) to help them to cope with and manage their disease. However, many patients reported having difficulty in accessing support services. CONCLUSIONS:Sclerodermapatients use similar coping strategies as patients with more common diseases, but they may not have access to the same level of support services. Accessible interventions, including self-management programs, aimed at improving problem- and emotion-focused coping are needed. Further, increased access to support groups may provide patients with opportunities to obtain social support and enhance coping.
Entities:
Keywords:
Systemic sclerosis; coping strategies; patient perspective; qualitative research
Authors: Shelley E Condon; Scott C Roesch; Philip J Clements; Daniel E Furst; Michael H Weisman; Vanessa L Malcarne Journal: J Scleroderma Relat Disord Date: 2020-06-22
Authors: Dinesh Khanna; Yannick Allanore; Christopher P Denton; Marco Matucci-Cerinic; Janet Pope; Barbara Hinzmann; Siobhan Davies; Janethe de Oliveira Pena; Oliver Distler Journal: J Scleroderma Relat Disord Date: 2019-08-21