Exploring sources of emotional distress among people living with scleroderma

A focus group study

Stephanie T. Gumuchian, Sandra Peláez, Vanessa C. Delisle, Marie Eve Carrier, Lisa R. Jewett, Ghassan El-Baalbaki, Catherine Fortune, Marie Hudson, Ann Impens, Annett Körner, Jennifer Persmann, Linda Kwakkenbos, Susan J. Bartlett, Brett D. Thombs

Research output: Contribution to journalArticle

Abstract

Background: Systemic sclerosis, or scleroderma, is a chronic and rare connective tissue disease with negative physical and psychological implications. Sources of emotional distress and the impact they have on the lives of people with scleroderma are not well understood. Objectives: To gain an in-depth understanding of the emotional experiences and sources of emotional distress for women and men living with scleroderma through focus group discussions. Methods: Three semi-structured focus group discussions were conducted (two in English, one in French) with a total of 22 people with scleroderma recruited through the Scleroderma Society of Ontario in Hamilton, Ontario and a scleroderma clinic in Montreal, Canada. Interviews were recorded, transcribed, and then coded for emerging themes using thematic inductive analysis. Results: Core themes representing sources of emotional distress were identified, including: (a) facing a new reality; (b) the daily struggle of living with scleroderma; (c) handling work, employment and general financial burden; (d) changing family roles; (e) social interactions; and (f) navigating the health care system. Collectively, these themes refer to the stressful journey of living with scleroderma including the obstacles faced and the emotional experiences beginning prior to receiving a diagnosis and continuing throughout the participants' lives. Conclusion: Scleroderma was portrayed as being an unpredictable and overwhelming disease, resulting in many individuals experiencing multiple sources of emotional distress. Interventions and supportive resources need to be developed to help individuals with scleroderma and people close to them manage and cope with the emotional aspects of the disease.

Original languageEnglish (US)
Article numbere0152419
JournalPLoS One
Volume11
Issue number3
DOIs
StatePublished - Mar 1 2016
Externally publishedYes

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Systemic Scleroderma
focus groups
Ontario
distress
Focus Groups
Connective Tissue Diseases
Interpersonal Relations
Canada
Interviews
Psychology
Delivery of Health Care
Health care
family relations
sclerosis
connective tissues
health services
Tissue
interviews
methodology

ASJC Scopus subject areas

  • Agricultural and Biological Sciences(all)
  • Biochemistry, Genetics and Molecular Biology(all)
  • Medicine(all)

Cite this

Gumuchian, S. T., Peláez, S., Delisle, V. C., Carrier, M. E., Jewett, L. R., El-Baalbaki, G., ... Thombs, B. D. (2016). Exploring sources of emotional distress among people living with scleroderma: A focus group study. PLoS One, 11(3), [e0152419]. https://doi.org/10.1371/journal.pone.0152419

Exploring sources of emotional distress among people living with scleroderma : A focus group study. / Gumuchian, Stephanie T.; Peláez, Sandra; Delisle, Vanessa C.; Carrier, Marie Eve; Jewett, Lisa R.; El-Baalbaki, Ghassan; Fortune, Catherine; Hudson, Marie; Impens, Ann; Körner, Annett; Persmann, Jennifer; Kwakkenbos, Linda; Bartlett, Susan J.; Thombs, Brett D.

In: PLoS One, Vol. 11, No. 3, e0152419, 01.03.2016.

Research output: Contribution to journalArticle

Gumuchian, ST, Peláez, S, Delisle, VC, Carrier, ME, Jewett, LR, El-Baalbaki, G, Fortune, C, Hudson, M, Impens, A, Körner, A, Persmann, J, Kwakkenbos, L, Bartlett, SJ & Thombs, BD 2016, 'Exploring sources of emotional distress among people living with scleroderma: A focus group study', PLoS One, vol. 11, no. 3, e0152419. https://doi.org/10.1371/journal.pone.0152419
Gumuchian ST, Peláez S, Delisle VC, Carrier ME, Jewett LR, El-Baalbaki G et al. Exploring sources of emotional distress among people living with scleroderma: A focus group study. PLoS One. 2016 Mar 1;11(3). e0152419. https://doi.org/10.1371/journal.pone.0152419
Gumuchian, Stephanie T. ; Peláez, Sandra ; Delisle, Vanessa C. ; Carrier, Marie Eve ; Jewett, Lisa R. ; El-Baalbaki, Ghassan ; Fortune, Catherine ; Hudson, Marie ; Impens, Ann ; Körner, Annett ; Persmann, Jennifer ; Kwakkenbos, Linda ; Bartlett, Susan J. ; Thombs, Brett D. / Exploring sources of emotional distress among people living with scleroderma : A focus group study. In: PLoS One. 2016 ; Vol. 11, No. 3.
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