ArticlePloS one2016
Exploring Sources of Emotional Distress among People Living with Scleroderma: A Focus Group Study.
Article in PloS one, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Who cites it
7 citing papers in PubMed, 24 citations in OpenAlex.
- Strategies used by people with systemic sclerosis to perform valued occupations.The British journal of occupational therapy · 2024Article
- Things left unsaid: important topics that are not discussed between patients with systemic sclerosis, their carers and their healthcare professionals-a discourse analysis.Clinical rheumatology · 2021Article
- Challenges in physician-patient communication for optimal management of systemic sclerosis-associated interstitial lung disease: a discourse analysis.Clinical rheumatology · 2020Article
- Untangling fear and eudaimonia in the healthcare provider-patient relationship.Medicine, health care, and philosophy · 2020Article
- A specific method for qualitative medical research: the IPSE (Inductive Process to analyze the Structure of lived Experience) approach.BMC medical research methodology · 2020Article
- Patient perception of disease burden in diffuse cutaneous systemic sclerosis.Journal of scleroderma and related disorders · 2020Article
- Support Groups in Scleroderma.Current rheumatology reports · 2019Review
Corrections and comments
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Authors and funding
14 authors at 7 institutions in 3 countries.
Funding
Abstract
backgroundSystemic 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.
objectivesTo 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.
methodsThree 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.
resultsCore 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.
conclusionScleroderma 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.
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Registered trials
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