The invisible part of the iceberg

Qualitative aspects of childhood vasculitis

Berna Eren Fidanci, Erkan Demirkaya, Cengizhan Acikel, Kursat Fidanci, Dursun Karaman, Dilek Yildiz, Dilek Konukbay, Adem Polat, Gokalp Basbozkurt, Rezan Topaloglu, Rolando Cimaz, Angelo Ravelli, Seza Ozen

Research output: Contribution to journalArticle

3 Citations (Scopus)

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. Conclusion: 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.

Original languageEnglish
JournalClinical and Experimental Rheumatology
Volume32
Issue numberSUPPL.82
Publication statusPublished - 2014

Fingerprint

Ice Cover
Vasculitis
Interviews
Absenteeism
Body Image
Clinical Protocols
Pharmaceutical Preparations
Fatigue
Software
Mothers
Demography
Pain

Keywords

  • Childhood vasculitis
  • Outcome
  • Proxy reports
  • Qualitative assessment

ASJC Scopus subject areas

  • Rheumatology
  • Immunology
  • Immunology and Allergy

Cite this

Fidanci, B. E., Demirkaya, E., Acikel, C., Fidanci, K., Karaman, D., Yildiz, D., ... Ozen, S. (2014). The invisible part of the iceberg: Qualitative aspects of childhood vasculitis. Clinical and Experimental Rheumatology, 32(SUPPL.82).

The invisible part of the iceberg : Qualitative aspects of childhood vasculitis. / Fidanci, Berna Eren; Demirkaya, Erkan; Acikel, Cengizhan; Fidanci, Kursat; Karaman, Dursun; Yildiz, Dilek; Konukbay, Dilek; Polat, Adem; Basbozkurt, Gokalp; Topaloglu, Rezan; Cimaz, Rolando; Ravelli, Angelo; Ozen, Seza.

In: Clinical and Experimental Rheumatology, Vol. 32, No. SUPPL.82, 2014.

Research output: Contribution to journalArticle

Fidanci, BE, Demirkaya, E, Acikel, C, Fidanci, K, Karaman, D, Yildiz, D, Konukbay, D, Polat, A, Basbozkurt, G, Topaloglu, R, Cimaz, R, Ravelli, A & Ozen, S 2014, 'The invisible part of the iceberg: Qualitative aspects of childhood vasculitis', Clinical and Experimental Rheumatology, vol. 32, no. SUPPL.82.
Fidanci BE, Demirkaya E, Acikel C, Fidanci K, Karaman D, Yildiz D et al. The invisible part of the iceberg: Qualitative aspects of childhood vasculitis. Clinical and Experimental Rheumatology. 2014;32(SUPPL.82).
Fidanci, Berna Eren ; Demirkaya, Erkan ; Acikel, Cengizhan ; Fidanci, Kursat ; Karaman, Dursun ; Yildiz, Dilek ; Konukbay, Dilek ; Polat, Adem ; Basbozkurt, Gokalp ; Topaloglu, Rezan ; Cimaz, Rolando ; Ravelli, Angelo ; Ozen, Seza. / The invisible part of the iceberg : Qualitative aspects of childhood vasculitis. In: Clinical and Experimental Rheumatology. 2014 ; Vol. 32, No. SUPPL.82.
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