title: Exploring Sources of Emotional Distress among People Living with Scleroderma: A Focus Group Study.
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.
  
  
  OBJECTIVE
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Psychiatry, McGill University, Montréal, Québec, Canada.|Lady Davis Institute for Medical Research, Jewish General Hospital, Montréal, Québec, Canada.
authors.forename: Stephanie T
authors.initials: ST
authors.lastname: Gumuchian
authors.affiliation: Lady Davis Institute for Medical Research, Jewish General Hospital, Montréal, Québec, Canada.|Centre de recherche du Centre hospitalier universitaire Sainte-Justine, Montréal, Québec, Canada.|Department of Educational and Counselling Psychology, McGill University, Montréal, Québec, Canada.
authors.forename: Sandra
authors.initials: S
authors.lastname: Peláez
authors.affiliation: Lady Davis Institute for Medical Research, Jewish General Hospital, Montréal, Québec, Canada.|Department of Educational and Counselling Psychology, McGill University, Montréal, Québec, Canada.
authors.forename: Vanessa C
authors.initials: VC
authors.lastname: Delisle
authors.affiliation: Lady Davis Institute for Medical Research, Jewish General Hospital, Montréal, Québec, Canada.
authors.forename: Marie-Eve
authors.initials: ME
authors.lastname: Carrier
authors.affiliation: Lady Davis Institute for Medical Research, Jewish General Hospital, Montréal, Québec, Canada.|Department of Educational and Counselling Psychology, McGill University, Montréal, Québec, Canada.
authors.forename: Lisa R
authors.initials: LR
authors.lastname: Jewett
authors.affiliation: Department of Psychology, Université du Québec à Montréal, Montréal, Québec, Canada.
authors.forename: Ghassan
authors.initials: G
authors.lastname: El-Baalbaki
authors.affiliation: Scleroderma Society of Ontario, Hamilton, Ontario, Canada.
authors.forename: Catherine
authors.initials: C
authors.lastname: Fortune
authors.affiliation: Lady Davis Institute for Medical Research, Jewish General Hospital, Montréal, Québec, Canada.|Department of Medicine, McGill University, Montréal, Québec, Canada.
authors.forename: Marie
authors.initials: M
authors.lastname: Hudson
authors.affiliation: Institute for Health Innovation, Midwestern University, Downers Grove, Illinois, United States of America.
authors.forename: Ann
authors.initials: A
authors.lastname: Impens
authors.affiliation: Lady Davis Institute for Medical Research, Jewish General Hospital, Montréal, Québec, Canada.|Department of Educational and Counselling Psychology, McGill University, Montréal, Québec, Canada.
authors.forename: Annett
authors.initials: A
authors.lastname: Körner
authors.affiliation: Department of Psychology, Université du Québec à Montréal, Montréal, Québec, Canada.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Persmann
authors.affiliation: Department of Psychiatry, McGill University, Montréal, Québec, Canada.|Lady Davis Institute for Medical Research, Jewish General Hospital, Montréal, Québec, Canada.|Behavioural Science Institute, Clinical Psychology, Radboud University, Nijmegen, the Netherlands.
authors.forename: Linda
authors.initials: L
authors.lastname: Kwakkenbos
authors.affiliation: Department of Medicine, McGill University, Montréal, Québec, Canada.|McGill University Health Center, McGill University, Montréal, Québec, Canada.
authors.forename: Susan J
authors.initials: SJ
authors.lastname: Bartlett
authors.affiliation: Department of Psychiatry, McGill University, Montréal, Québec, Canada.|Lady Davis Institute for Medical Research, Jewish General Hospital, Montréal, Québec, Canada.|Department of Educational and Counselling Psychology, McGill University, Montréal, Québec, Canada.|Department of Medicine, McGill University, Montréal, Québec, Canada.|Department of Epidemiology, Biostatistics, and Occupational Health, McGill University, Montréal, Québec, Canada.|Department of Psychology, McGill University, Montréal, Québec, Canada.|School of Nursing, McGill University, Montréal, Québec, Canada.
authors.forename: Brett D
authors.initials: BD
authors.lastname: Thombs
mesh_terms: D017281:Cost of Illness; D004651:Employment / Q000523:psychology; D005190:Family / Q000523:psychology; D005260:Female; D017144:Focus Groups; D006801:Humans; D008297:Male; D008875:Middle Aged; D012595:Scleroderma, Systemic / Q000523:psychology*; D013315:Stress, Psychological / Q000209:etiology* / Q000523:psychology