4.5 Article

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

期刊

NEUROLOGICAL SCIENCES
卷 42, 期 12, 页码 5277-5288

出版社

SPRINGER-VERLAG ITALIA SRL
DOI: 10.1007/s10072-021-05227-w

关键词

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

资金

  1. Novartis Farma

向作者/读者索取更多资源

The project investigated the migraine illness experience through Narrative Medicine, collecting narratives from patients, caregivers, and clinicians. Analysis revealed the impact of migraine on social, domestic, and work life, as well as the extent of caregiving burden and potential underestimation of migraine burden in patients' and caregivers' lives. Narrative Medicine emerged as a valuable tool for enhancing knowledge and awareness of migraine.
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.

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