Understanding coping strategies among people living with scleroderma: a focus group study

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.

Keywords:

• Systemic sclerosis
• coping strategies
• qualitative research
• patient perspective

Acknowledgements

We are grateful to the women and men with SSc who took the time to participate in our study and who provided invaluable input on their experiences with living with the disease. We would like to thank the Scleroderma Society of Ontario and members of the Canadian Scleroderma Research Group for helping with recruitment. We would also like to thank Mr. Ilya Razykov for his assistance in setting up and helping to conduct two of the focus group discussions.

Disclosure statement

The authors report no conflicts of interest.

Additional information

Funding

Canadian Institutes of Health Research10.13039/501100000024TR3-119192

Fonds de Recherché du Québec Santé10.13039/501100000024

McGill University10.13039/501100000024

Canadian Institutes of Health Research10.13039/501100000024TR3-119192

Fonds de Recherché du Québec Santé10.13039/501100000024

McGill University10.13039/501100000024

This study was funded by a Canadian Institutes of Health Research (CIHR) Emerging Team Grant for Rare Diseases (PI, Thombs; TR3-119192) to support the Scleroderma Patient-centered Intervention Network (SPIN). In addition to CIHR funding, SPIN has received institutional contributions from the Lady Davis Institute for Medical Research of the Jewish General Hospital, Montréal, Canada and from McGill University, Montréal, Québec, Canada. SPIN has also received support from the Scleroderma Society of Ontario, Scleroderma Canada, and Sclérodermie Québec. Ms. Gumuchian was supported by a Fonds de Recherché du Québec Santé (FRQS) Master’s Award, a CIHR Master’s Award, and by funding from McGill University, Montréal, Québec, Canada. Ms. Delisle and Ms. Jewett were supported by CIHR Doctoral Research Awards. Dr. Kwakkenbos was supported by a CIHR Banting Postdoctoral Fellowship. Dr. Hudson was supported by a Fonds de recherche du Québec Santé (FRQS) Clinical Research Award. Dr. Thombs was supported by an Investigator Salary Award from the Arthritis Society.