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Multicenter Study
. 2021 Dec;42(12):5277-5288.
doi: 10.1007/s10072-021-05227-w. Epub 2021 Apr 15.

Narrative Medicine to integrate patients', caregivers' and clinicians' migraine experiences: the DRONE multicentre project

Maria Clara Tonini  1 , Alessandra Fiorencis  2 , Rosario Iannacchero  3 , Mauro Zampolini  4 , Antonietta Cappuccio  5 , Raffaella Raddino  6 , Elisabetta Grillo  6 , Maria Albanese  7 , Gianni Allais  8 , Marco André Bassano  6 , Filippo Brighina  9 , Terenzio Carboni  10 , Fabio Frediani  11 , Licia Grazzi  12 , Carmela Mastrandrea  3 , Franca Moschiano  13 , Maria Gabriella Poeta  14 , Angelo Ranieri  15 , Renato Turrini  6 , Maria Giulia Marini  5
Affiliations
Free PMC article
Multicenter Study

Narrative Medicine to integrate patients', caregivers' and clinicians' migraine experiences: the DRONE multicentre project

Maria Clara Tonini et al. Neurol Sci. 2021 Dec.
Free PMC article

Abstract

Background: Although migraine is widespread and disabling, stigmatisation and poor awareness of the condition still represent barriers to effective care; furthermore, research on migraine individual and social impact must be enhanced to unveil neglected issues, such as caregiving burden. The project investigated the migraine illness experience through Narrative Medicine (NM) to understand daily life, needs and personal resources of migraneurs, their caregivers and clinicians, and to provide insights for clinical practice.

Methods: The project involved 13 Italian headache centres and targeted migraneurs, their caregivers and migraine specialists at these centres. Written narratives, composed by a sociodemographic survey and illness plot or parallel chart, were collected through the project's webpage. Illness plots and parallel charts employed open words to encourage participants' expression. Narratives were analysed through Nvivo software, interpretive coding and NM classifications.

Results: One hundred and seven narratives were collected from patients and 26 from caregivers, as well as 45 parallel charts from clinicians. The analysis revealed migraine perception in social, domestic and work life within the care pathway evolution and a bond between chaos narratives and day loss due to migraine; furthermore, narratives suggested the extent of the caregiving burden and a risk of underestimation of migraine burden in patients' and caregivers' life.

Conclusion: The project represents the first investigation on migraine illness experience through NM simultaneously considering migraneurs', caregivers' and clinicians' perspectives. Comparing narratives and parallel charts allowed to obtain suggestions for clinical practice, while NM emerged as able to foster the pursuing of migraine knowledge and awareness.

Keywords: Doctor-patient relationship; Illness experience; Migraine; Narrative medicine; Quality of life.

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