| Literature DB >> 33856582 |
Maria Clara Tonini1, Alessandra Fiorencis2, Rosario Iannacchero3, Mauro Zampolini4, Antonietta Cappuccio5, Raffaella Raddino6, Elisabetta Grillo6, Maria Albanese7, Gianni Allais8, Marco André Bassano6, Filippo Brighina9, Terenzio Carboni10, Fabio Frediani11, Licia Grazzi12, Carmela Mastrandrea3, Franca Moschiano13, Maria Gabriella Poeta14, Angelo Ranieri15, Renato Turrini6, Maria Giulia Marini5.
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.Entities:
Keywords: Doctor-patient relationship; Illness experience; Migraine; Narrative medicine; Quality of life
Mesh:
Year: 2021 PMID: 33856582 PMCID: PMC8047556 DOI: 10.1007/s10072-021-05227-w
Source DB: PubMed Journal: Neurol Sci ISSN: 1590-1874 Impact factor: 3.307
Sociodemographic data of participants
| Patients | Caregivers | Patients in parallel charts ( | Clinicians | |
|---|---|---|---|---|
| Gender | ||||
| Women | 89 (83%) | 11 (42%) | 37 (82%) | 6 (43%) |
| Men | 18 (17%) | 15 (58%) | 8 (18%) | 8 (57%) |
| Average age (yrs) | ||||
| Mean (min-max) | 47 (16-80) | 47 (26-77) | 45 (12-80) | 57 (37-68) |
| Nationality | ||||
| Italian | 105 (98%) | 26 (100%) | 45 (100%) | 14 (100%) |
| European | 1 (1%) | – | – | – |
| Extra-European | 1 (1%) | – | – | – |
| Geographic residence | ||||
| Northern Italy | 49 (46%) | 15 (58%) | 22 (49%) | 4 (29%) |
| Central Italy | 24 (22%) | 6 (23%) | 11 (24%) | 6 (42%) |
| Southern Italy | 33 (31%) | 4 (15%) | 12 (27%) | 4 (29%) |
| Nonresponses | 1 (1%) | 1 (4%) | – | – |
| Education | ||||
| Elementary school | - | - | 1 (2%) | – |
| Middle school | 9 (8%) | 2 (8%) | 6 (14%) | – |
| High school | 45 (42%) | 12 (46%) | 19 (42%) | – |
| Bachelor/Master | 52 (49%) | 11 (42%) | 19 (42%) | – |
| Nonresponses | 1 (1%) | 1 (4%) | - | – |
| Employment status | ||||
| Student | 9 (8%) | – | 4 (9%) | – |
| Working | 79 (75%) | 15 (58%) | 32 (71%) | – |
| Not working | 9 (8%) | 2 (8%) | 5 (11%) | – |
| Retired | 8 (7%) | 6 (23%) | 4 (9%) | – |
| Nonresponses | 2 (2%) | 3 (11%) | – | – |
| Marital state | ||||
| Single | 65 (61%) | 2 (8%) | 16 (36%) | – |
| Married | 34 (31%) | 20 (77%) | 24 (53%) | – |
| Separated | 7 (7%) | 3 (11%) | 4 (9%) | – |
| Nonresponses | 1 (1%) | 1 (4%) | 1 (2%) | – |
| Professional activity (yrs) | ||||
| Mean (min-max) | – | – | – | 30 (11-40) |
| Specialisation | ||||
| Pharmacology | – | – | – | 1 (7%) |
| Neuropathology | – | – | – | 1 (7%) |
| Neurology | – | – | – | 12 (86%) |
| Workplace | ||||
| Hospital | – | – | – | 5 (36%) |
| University Hospital | – | – | – | 3 (21%) |
| Local Health Authority | – | – | – | 5 (36%) |
| Private practice | – | – | – | 1 (7%) |
Data presented as N (%) or mean (minimum-maximum)
Fig. 1Disease-, illness, and sickness-related aspects: distribution and quotes from narratives
Fig. 2Chaos, restitution and quest narratives: distribution and quotes from narratives
Fig. 3Average lost days per year for activity/work and social relationships compared to Frank’s narrative classification
Fig. 4The narrating experience for participants: distribution and quotes from narratives
Living with migraine
| Patients | Caregivers | Patients in parallel charts | |
|---|---|---|---|
| Average migraine duration (yrs) | |||
| Mean (min-max) | 27 (2-60) | 27 (0-50) | 21 (1-65) |
| Average episodes in a month | |||
| Mean (min-max) | 12 (0-31) | 12 (0-31) | 6 (1-25) |
| Specialist who made the diagnosis | |||
| Migraine specialist | 79 (74%) | – | – |
| Neurologist | 19 (18%) | – | – |
| General practitioner | 3 (3%) | – | – |
| Pharmacist | 2 (2%) | – | – |
| Not answered | 4 (4%) | – | – |
| Family member suffering of migraine | |||
| Yes | 78 (73%) | – | – |
| No | 27 (25%) | – | – |
| Not answered | 2 (2%) | – | – |
Data presented as N (%) or mean (minimum-maximum)
Improvements in activity, work and social spheres: distribution and quotes from narratives
| Improvements in domestic and work activities | 65% of patient narratives | — |
| 65% of caregiver narratives | — | |
| 93% of parallel charts | ||
| Relational and social activities | 73% of patient narratives | — |
| 77% of caregiver narratives | — |
Clinicians’ strategies and learnt attitudes: distribution and quotes from narratives
| Communication strategies | Proposing therapeutic options (38%) | — |
| Inviting patients to share their feelings (24%) | — | |
| Inviting to a therapeutic alliance (19%) | — | |
| Fostering awareness (19%) | — | |
| Care strategies | Sharing the therapeutic path (43%) | — |
| Listening to patient migraine stories (36%) | — | |
| Fostering correct information (21%) | — | |
| Learnt attitudes | Going beyond clinical issues (37%) | — |
| Listening and collaborating with patients (35%) | — | |
| Having more patience (16%) | — | |
| Aptness of care (12%) | — |