Scleroderma patient perspectives on social support from close social relationships

Abstract

Purpose: People with rare diseases must cope with many physical and psychological challenges; an endeavor that can be difficult to carry out without external support. The purpose of this study was to understand how patients with scleroderma perceive the social support they need and receive from close relationships to better manage their disease.

Method: Four focus groups with patients (N = 19) were conducted. A semi-structured topic guide was used. Discussions were recorded and transcribed, and thematic analysis was performed.

Results: Patients reported receiving emotional, informational, and instrumental support, with emotional support being a priority for them. Patients also referred to relational factors (i.e., communication style, active engagement, complementarity) that affected the social support received. More specifically, engaging in honest communication, carefully choosing sources of support, and having close relationships motivated to learn and get involved enhanced support. In contrast, patients who avoided interacting with others or speaking about scleroderma and close relationships with a lack understanding or involvement hindered support.

Conclusions: Patients might benefit more from interventions aiming at coping with scleroderma as a collective. Findings from this study help better understand the unique experiences of scleroderma patients while receiving support from close relationships.

Implications for Rehabilitation

• People with scleroderma may benefit from receiving different types of support from their close social relationships, including emotional, informational, and instrumental support.

• Professionals working in the area of rehabilitation should encourage patients to identify close social relationships who have specialized knowledge and skills (e.g., comfort looking for resources and information on the Internet) to help them cope better with the challenges associated with scleroderma.

• As part of the proposed treatment, rehabilitation professionals should encourage patients to actively communicate their social support needs to close social relationships, as well as maintain an open and honest line of communication with them, which will improve their capacity to understand the patient and provide appropriate support.

• Rehabilitation professionals may support people with scleroderma by encouraging them to seek support from their close social relationships, but also by providing these close relationship with information and supportive services to learn new skills and better cope with their own distress.

Keywords:

• Scleroderma
• systemic sclerosis
• social support
• close social relationships
• coping
• patient perspectives

Acknowledgements

We would like to thank the patients for sharing their perspectives and providing insights into their experiences. We are also grateful for everyone from the Scleroderma Foundation, Scleroderma Society of Canada, and Canadian Scleroderma Research Group who helped us advertise and recruit patients. Finally, special thanks go to Ms. Stephanie Gumuchian for providing feedback during the writing process.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by funding from the Canadian Institutes of Health Research (CIHR; PI BD Thombs, TR3-119192). Katherine Milette was supported by a Fonds de Recherche Québec - Santé Doctoral Award and a CIHR Doctoral Research Award. Dr. Thombs was supported by an Investigator Salary Award from the Arthritis Society