Focus Group Study Looks at How Patients Often Cope with Scleroderma

Focus Group Study Looks at How Patients Often Cope with Scleroderma

An analysis of focus group discussions between patients with systemic sclerosis (SSc), or scleroderma, found that participants coped with their disease in three general ways: by concentrating on solutions to a problem and seeking professional help, managing their emotions, and looking for benefits and adjusting goals to the realities of their condition.

However, the study, which was conducted in Canada, reported that professional support is not always easy to access for people with scleroderma.

The study, “Understanding coping strategies among people living with scleroderma: a focus group study,” was published recently in the journal Disability and Rehabilitation. 

People with rare diseases often face similar challenges as those with more common chronic diseases. However, dealing with rare diseases often entails additional obstacles; for example, the disease may not be widely understood, treatments may not be available or accessible, and professionally organized supportive care may be lacking. Patients also may be stigmatized, excluded socially, or face limitations in terms of professional opportunities.

In the study, 22 patients with SSc participated in one of three focus groups held between February and July 2013 to discuss coping with the disease. Most participants were women (18 out of 22, or 82%), and the average age was 53 (ages ranged from 26 to 77). Discussions in each group lasted between 90 and 130 minutes.

Researchers analyzed participants’ coping strategies via Lazarus and Folkman’s theoretical model of coping, which evaluates how major life events and daily hassles affect emotions, with an emphasis on cognitive evaluation and stress-coping mechanisms.

Participants reported that they used problem-focused (seeking information and professional help), emotion-focused (finding social support and using distraction techniques), and meaning-focused (adjusting goals and looking for benefits) coping strategies to manage their disease.

“Findings indicated that participants used a combination of problem-focused, emotion-focused, and meaning-focused coping strategies to help them to manage aspects of the disease. These results will be used … to inform the development of online support resources and self-management tools and to promote the utility of support groups aimed at improving coping skills among people with SSc,” researchers wrote.

The team added that, “In sum, there are many different physical and psychosocial implications of living with SSc that result in patients requiring unique coping strategies to help them to manage life with the disease and improve quality of life and well-being.”

However, patients “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.”

2 comments

  1. Ann Davis says:

    The folks in Sacramento used to have a support group and were able to access information and help through the group. We also had social events that made us feel “normal” for a few hours. Now there is nothing and it is quite difficult. some of us splintered off and meet up socially every now and then. Many years ago we were told the support group would be returning but we’ve heard nothing. Really sad.

  2. georgia says:

    Why is it that people with cancer, MS, etc. get so much emotional support while scleroderma patients get so little? It can be just as fatal and debilitating with no cure.

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