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Living with Gitelman disease: an insight into patients' daily experiences

Caiata-Zufferey, Maria ; Zanini, Claudia A. ; Schulz, Peter J. ; Syrén, Marie-Louise ; Bianchetti, Mario G. ; Bettinelli, Alberto

In: Nephrology Dialysis Transplantation, 2012, vol. 27, no. 8, p. 3196-3201

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    Titre
    • Living with Gitelman disease: an insight into patients' daily experiences
    Auteur
    • Caiata-Zufferey, Maria. Institute of Communication and Health, University of Lugano, Switzerland
    • Zanini, Claudia A.. Institute of Communication and Health, University of Lugano, Switzerland
    • Schulz, Peter J.. Institute of Communication and Health, University of Lugano, Switzerland
    • Syrén, Marie-Louise. Department of Mother-Child Sciences, University of Milan, Italy
    • Bianchetti, Mario G.. Division of Pediatrics, Bellinzona and Mendrisio, and University of Bern, Switzerland
    • Bettinelli, Alberto. Division of Pediatrics, San Leopoldo Mandic Hospital, Merate-Lecco, Italy
    Type de document
    • Postprint
    Langue
    • Anglais
    Publié dans
    • Nephrology Dialysis Transplantation, 2012, vol. 27, no. 8, p. 3196-3201. Oxford University Press
    Autre version électronique
    Identifiant OAI-PMH
    • oai:doc.rero.ch:304479
    Summary
    Background Gitelman disease presents with musculoskeletal complaints and fatigue. Surprisingly, there is no clear-cut correlation between biochemical abnormalities and symptoms. Methods Starting from the hypothesis that the way patients comprehend their illness within their sociocultural frameworks reflects on their way of adapting to it, this study investigated how adult patients experience the disease in everyday life. We conducted a qualitative analysis based on interviews with 12 patients. Interviews were audio recorded, fully transcribed and analyzed using the constant comparative method described by Strauss and Corbin. Results A typology of the experiences emerged from the data and was tested on each transcript with an explicit search for disconfirming cases. Patients fell into four main groups: (i) those considering Gitelman disease a disabling illness, (ii) those considering it a normalized illness, (iii) those considering it a different normality and (iv) those considering it an episodic disability. Each pattern of experience was characterized by particular (i) ways of interpreting symptoms (ii) ways of managing Gitelman disease in everyday life, (iii) general lifestyles and (iv) risks for the patient's psychosocial life. Conclusions These findings suggest that health care providers should take advantage of considering patients' own perception of the disease in order to adjust the care and advice provided