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

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.

Influence of Social Workers' Empathy Ability on Suicidal Ideation of Cancer Patients

“…Help coordinate doctor-patient relationships. In the above links, social workers with high empathy ability could fully communicate with patients and understand, respect, and respond to their narration, which was similar to the concept of narrative medicine practiced by medical staff (34,35). Based on fully understanding the situation of patients, social workers provided targeted and individualized services to help them establish a more positive outlook on suffering, life and death, and medical treatment.…”

Narrative medicine: feasibility of a digital narrative diary application in oncology

“…17 Several narrative research studies on illness narratives and parallel charts (personal notebooks in which clinicians can write down reflections and feelings) have provided insights for clinical practice and health care service organizations. 18,19…”

“…17 Several narrative research studies on illness narratives and parallel charts (personal notebooks in which clinicians can write down reflections and feelings) have provided insights for clinical practice and health care service organizations. 18,19 Time spent producing narratives is treatment time that does not necessarily create a burden on organizations and caregivers. 20 On the contrary, facilitating treatment adherence and teamwork can substantially reduce time and costs.…”

Health-Related Quality of Life in Migraine: EQ-5D-5L-Based Study in Routine Clinical Practice

“…It often leads to moderate to severe disabilities and disrupts family life, interpersonal relationships, and professional life [ 5 ], and is the second leading cause of disability worldwide. It is important to understand the migraine experience by endeavoring to understand the daily life, real needs and personal resources of migraineurs, their caregivers and clinicians within the evolution of the care pathway, as shown in the few studies so far [ 6 ]. There is a paucity of robust data on migraine-related work factors associated with productivity [ 7 ].…”