title: A recurring rollercoaster ride: a qualitative study of the emotional experiences of parents of children with juvenile idiopathic arthritis.
abstract: BACKGROUND
  Despite the wealth of clinical research carried out in children with juvenile idiopathic arthritis (JIA), little is known about the emotional experiences of their parents. This article describes the predominant emotional experiences reported by parents of children with JIA in two Canadian cities.
  
  
  METHODS
  Research participants included 15 experienced parents and 8 novice parents (<6 months since children's JIA diagnosis). Their children were 2 to 16 years old with various JIA categories. A qualitative dataset including audio recordings and verbatim transcripts of three focus groups, and written reports of 59 reciprocal interviews (parents interviewing each other) were examined by a multidisciplinary research team following a four-step qualitative analytical process.
  
  
  RESULTS
  Parents of children with JIA experienced recurrent mixed negative and positive emotions that varied over time. Between disease onset and diagnosis, mounting anxiety, fear and confusion were the predominant emotions. Shortly after diagnosis there were shock, disbelief, and fear, with a sense of having being blindsided by the disease. At times of disease quiescence there was hope and gratitude, but also fatigue and frustration with ongoing treatment and fear of flares. During periods of increasing or ongoing symptoms there was admiration and sympathy for the courageous way children coped with JIA, as well as sorrow and frustration for ongoing pain and limitations. There were at times, frustration and indignation with peers and teachers unable to understand the child's fluctuations in physical activity and schoolwork. Throughout the disease, parents felt an underlying anxiety and powerlessness.
  
  
  CONCLUSIONS
  Parents of children with JIA described complex emotional journeys akin to the recurring ups and downs of rollercoaster rides, instead of ordered emotional phases ending in resolution. This has implications for healthcare providers who need to be aware of the complexity of these emotional journeys to support parents more effectively, thereby helping improve patient outcomes.
authors.affiliation: Department of Anthropology, University of British Columbia, 6303 NW Marine Drive, Vancouver, British Columbia, V6T 1Z1, Canada.
authors.forename: Oralia
authors.initials: O
authors.lastname: Gómez-Ramírez
authors.affiliation: Division of Rheumatology, Children's Hospital of Eastern Ontario, 401 Smyth Road, Ottawa, Ontario, K1H 8 L1, Canada.
authors.forename: Michele
authors.initials: M
authors.lastname: Gibbon
authors.affiliation: Department of Pediatrics, Western University and Children's Hospital, London Health Sciences Centre, 800 Commissioners Road East, London, Ontario, N6A 5 W9, Canada.
authors.forename: Roberta
authors.initials: R
authors.lastname: Berard
authors.affiliation: Department of Pediatrics, University of Ottawa and Children's Hospital of Eastern Ontario, 401 Smyth Road, Ottawa, Ontario, K1H 8 L1, Canada.
authors.forename: Roman
authors.initials: R
authors.lastname: Jurencak
authors.affiliation: British Columbia Children's Hospital, Room K4-116, 4480 Oak Street, Vancouver, British Columbia, V6H 3V4, Canada.
authors.forename: Jayne
authors.initials: J
authors.lastname: Green
authors.affiliation: Department of Pediatrics, University of British Columbia and British Columbia Children's Hospital, 4480 Oak Street, Vancouver, British Columbia, V6H 3V4, Canada.
authors.forename: Lori
authors.initials: L
authors.lastname: Tucker
authors.affiliation: Department of Pediatrics, University of Florida, and Department of Community Health and Epidemiology, University of Saskatchewan, 1600 Archer Road, Gainesville, Florida, USA.
authors.forename: Natalie
authors.initials: N
authors.lastname: Shiff
authors.affiliation: Department of Pediatrics, University of British Columbia and British Columbia Children's Hospital, 4480 Oak Street, Vancouver, British Columbia, V6H 3V4, Canada. jguzman@cw.bc.ca.
authors.forename: Jaime
authors.initials: J
authors.lastname: Guzman
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D001171:Arthritis, Juvenile / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D004644:Emotions / Q000502:physiology*; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D010988:Play and Playthings / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D012189:Retrospective Studies