title: The invisible part of the iceberg: qualitative aspects of childhood vasculitis.
abstract: OBJECTIVE
  The aim of this study was to develop a multidimensional assessment instrument named 'Juvenile Vasculitis Multidimensional Assessment Report' (J-VAMAR) to measure all the domains of the vasculitis. In this qualitative study, it is primarily aimed to enrich the item generation for the J-VAMAR.
  
  
  METHODS
  Twelve children with vasculitis and their mothers (n=12) were enrolled in this study. The data were collected using both a demographic data form and a semi-structured interview form. The study was performed on individual patient face-to face interview. Data were analysed by grounded theory and the N Vivo 9 software program.
  
  
  RESULTS
  Four categories were obtained. These categories were (i) physical effects of the illness, (ii) emotional effects of the illness, (iii) social effects of the illness and (iv) experienced challenges related to treatment process. In the physical effect category severe pain, physical limitations, weakness and fatigue; in emotional effect category thought of death, hopelessness and dissatisfaction about body image; in the social effects category decrease in academic performance, absenteeism to school and concealing the sickness from friends were the most common features. In the fourth category, subjects complained of lifelong drug use and frequency of daily drug consumptions.
  
  
  CONCLUSIONS
  These results provide evidence-based data for the assessment of children with vasculitis by several domains including physical, emotional and social aspects as well as treatment protocols. The study provides the basis and/or justification for selecting the domains that the developing multidimensional instrument should include.
authors.affiliation: Gulhane Military Medical Academy, School of Nursing, Ankara, Turkey. befidanci@gata.edu.tr.
authors.forename: Berna Eren
authors.initials: BE
authors.lastname: Fidanci
authors.forename: Erkan
authors.initials: E
authors.lastname: Demirkaya
authors.forename: Cengizhan
authors.initials: C
authors.lastname: Acikel
authors.forename: Kursat
authors.initials: K
authors.lastname: Fidanci
authors.forename: Dursun
authors.initials: D
authors.lastname: Karaman
authors.forename: Dilek
authors.initials: D
authors.lastname: Yildiz
authors.forename: Dilek
authors.initials: D
authors.lastname: Konukbay
authors.forename: Adem
authors.initials: A
authors.lastname: Polat
authors.forename: Gokalp
authors.initials: G
authors.lastname: Basbozkurt
authors.forename: Rezan
authors.initials: R
authors.lastname: Topaloglu
authors.forename: Rolando
authors.initials: R
authors.lastname: Cimaz
authors.forename: Angelo
authors.initials: A
authors.lastname: Ravelli
authors.forename: Seza
authors.initials: S
authors.lastname: Ozen
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D000342:Affective Symptoms / Q000175:diagnosis / Q000209:etiology / Q000503:physiopathology; D017668:Age of Onset; D002648:Child; D002675:Child, Preschool; D017281:Cost of Illness; D005260:Female; D062489:Health Impact Assessment; D006801:Humans; D007398:Interpersonal Relations; D007406:Interview, Psychological / Q000379:methods; D007558:Italy; D008297:Male; D055118:Medication Adherence; D009034:Mother-Child Relations; D036301:Qualitative Research; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D014657:Vasculitis / Q000175:diagnosis / Q000453:epidemiology / Q000503:physiopathology / Q000523:psychology / Q000628:therapy