Table 1.
References | Country | Study design and analysis | Sampling strategy | Population | Migraine and clinical characteristics | Themes and subthemes |
---|---|---|---|---|---|---|
Estave et al. (2021), “Learning the full impact of migraine through patient voices: A qualitative study.” | United States of America | Semi-structured qualitative interviews analysed following a grounded theory | Participants were recruited from a pilot study and a RCT on the effect of a mindfulness-based stress reduction protocol in adults with migraine. |
Number: 81 Age: Average 45–46 year (y) Sex: 90% female (F) Ethnicity: Caucasian Pathology: Migraine |
•Migraine onset: Not available (N.A.) •Years with migraine: Pilot study and RCT: 26 •Days with migraine (month): •Pilot study: 4.2 RCT: 7.45 •Frequency migraine attacks: N.A. •Days with use of symptomatic medication: N.A. •MIDAS (Migraine Disability Assessment) - 1 months: Pilot study: 12.5 RCT: 13.7/10.0 •HIT – 6 (Headache Impact Test 6): Pilot study and RCT: 63.0 •Beck Depression Inventory, second edition (BDI-II): N.A. •State-Trait Anxiety Inventory (STAI): N.A. | 1. Global negative impact on overall life: (a) controls life; (b) makes life difficult; (c) causes disability during attacks; (d) lack of control over migraine attacks; (e) attempts to push through despite migraine. 2. Migraine impact on emotional health: (a) isolation; (b) anxiety; (c) frustration/anger; (d) guilt; (e) mood changes/irritability; (f) depression/hopelessness. 3. Migraine impact on cognitive function: (a) concentration difficulties, (b) communication challenges. 4. Migraine impact on specific domains of life with resulting reactions: (a) work/career: guilt, change of job status, presenteeism, financial impact, school impact; (b) family life: frustration, guilt, disrupted time; (c) social life: irritability, altered plans, communication. 5. Fear and avoidance: (a) pain catastrophising, (b) anticipatory anxiety, (c) avoidance behaviour. 6. Stigma surrounding migraine: (a) externalised stigma, (b) internalised stigma. |
Palacios-Ceña et al. (2017), “Living with chronic migraine: qualitative study on female patients' perspectives from a specialised headache clinic in Spain.” | Spain | In-depth unstructured and semi-structured interviews and patients' drawings analysed following a phenomenological approach. | Patients were recruited at their first visit to the headache clinic at the Hospital Clìnico San Carlos (Madrid) neurology department. Sampling continued until redundant information from data analysis was achieved. |
Number: 20 Age: mean age ± standard deviation (SD) 38.65 ± 13.85 Sex: 100% F Ethnicity: Caucasian Pathology: Chronic migraine |
•Migraine onset: N.A. •Years with migraine: 20.2 (SD 13,23) •Days with migraine (month): 12.85 (SD 6.03) •Frequency migraine attacks (month): 24.6 (SD 4.7) •Days with use of symptomatic medication (month): 14.1 (SD 8.91). •MIDAS: N.A. •HIT – 6: N.A. •BDI-II: five patients had mild depression and three had moderate depression. •STAI: fourteen patients with some degree of anxiety (moderate to severe). | 1. The shame of suffering from an invisible condition; 2. Treatment: between need, scepticism and fear; 3. Looking for physicians' support and sincerity and fighting misconceptions; 4. Limiting the impact on daily life through self-control; 5. Family and work: between understanding and disbelief. |
Rutberg and Öhrling (2012), “Migraine – more than a headache: women's experiences of living with migraine.” | Sweden | In-depth interviews and drawings following a Hermeneutic phenomenological method. | Letters describing the purpose of the study were sent to all 24 members of Swedish Migraine Association. Those who showed interest were contacted by phone, and they all gave written informed consent. |
Number: 10 Age (range): between 37 and 69 Sex: 100% F Ethnicity: Caucasian Pathology: Migraine |
•Migraine onset (age): eight women migraine started in their late teens or their early twenties. Two women migraine started in menopause. •Years with migraine: N.A. •Days with migraine (month): N.A. •Frequency migraine attacks (number): One-two attack(s) per year for two women, one-four attacks per month for six women and 10-20 attacks per month for two women •Days with use of symptomatic medication (month): N.A. •MIDAS: N.A. •HIT – 6: N.A. •BDI-II: N.A. •STAI: fourteen patients with some degree of anxiety (moderate to severe). | 1. Being besieged by an attack: (a) being temporarily incapacitated; (b) feeling involuntarily isolated from life. 2. Struggling in a life characterised by uncertainty: (a) being in a state of constant readiness; (b) worrying about the use of medication. 3. Living with an invisible disorder: (a) living with the fear of not being believed; (b) struggling to avoid being doubted. |
Ramsey (2012), “Living with migraine headache: a phenomenological study of women's experiences.” | United States of America | Hermeneutic Phenomenological inquiry and storey theory with interviews. | Women who held an account at a mid-Atlantic university received an illustrative e-mail. More than 100 women wanted to participate, but the researcher contacted the first 12 who supplied a phone number. The authors decided that redundancy was evident in the eight participant storey. |
Number: eight Age: Average 35,9 y Sex: 100% F Ethnicity: Caucasian Pathology: Migraine |
•Migraine onset (age): average 20,5 y •Years with migraine: N.A. •Days with migraine (month): N.A. •Frequency migraine attacks (number): N.A. •Days with use of symptomatic medication (month): N.A. •MIDAS: N.A. •HIT – 6: N.A. •BDI-II: N.A. •STAI: N.A. | 1. Recalling the significant experience that reshaped life; 2. Experiencing self as vulnerable, with unmet expectations, unfulfilled relationship, and regrets; 3. Being overcome by unrelenting, torturous pain magnified by intrusion from the outside world; 4. Pushing through to hold self together to do what needs to be done despite tortuous pain; 5. Surrendering to the compelling call to focus on self in order to relieve the torturous pain; 6. Making the most of pain-free time to get on with life and navigate the aftermath of the headache experience; 7. Being on guard against an unpredictable attack and yet hopeful that it is possible to outsmart the next attack. |
Peters et al. (2005), “The patients' perceptions of migraine and chronic daily headache: a qualitative study.” | United Kingdom | Semi-structured interviews analysed following grounded theory methodology. | Participants were recruited in Surrey (UK) by personal contact, posters in two local supermarkets and letters to 20 members of the Migraine Action Association. |
Number: 13 Age: average 42,7 y Sex: nine male (M) and four female. Ethnicity: Caucasian Pathology: Migraine, five participants also had chronic daily headache (CDH) with >15 attacks per month and nine had tension-type headache (TTH). |
•Migraine onset (age): N.A. •Years with migraine: N.A. •Days with migraine (month): N.A. •Frequency migraine attacks (number): five participants had >15 attacks per month. •Days with use of symptomatic medication (month): N.A. •MIDAS: four participants minimal; one mild; six moderate (three with migraine and three with CDH), two severe disability (CDH). •HIT – 6: N.A. •BDI-II: N.A. •STAI: N.A. | 1. Headaches: (a) pain and other symptoms; (b) differentiating between different types of headache; (c) perceptions of headaches as barriers and facilitators to care. 2. Headache impact. 3. Headache as a health issue. |
Scaratti et al. (2018), “A qualitative study on patients with chronic migraine with medication overuse headache: comparing frequent and non-frequent relapsers.” | Italy | In-person interviews analysed following thematic analysis and a narrative approach. | Participants were consecutively recruited during structured withdrawal treatments at the Headaches Centre of the Neurological Institute C. Besta in Milan between November 2015 and June 2016. Inclusion criteria: >18 years old, diagnosis of chronic migraine and medication overuse. |
Number: 16 Age: mean age 53 y Sex: 13 F, 3 M Ethnicity: Caucasian Pathology: Chronic migraine and medication overuse headache (MOH). Seven participants were classified as frequent re relapsers (FRs) and nine as non-frequent relapsers (NFRs). Patients had both psychiatric (depression or anxiety) and physical comorbidities. |
•Migraine onset (age): N.A. •Years with migraine: FRs 18 years; NFRs 13 years. •Days with migraine (month): average 21-22 •Frequency migraine attacks (number): N.A. •Days with use of symptomatic medication (month): N.A. •MIDAS: N.A. •HIT – 6: N.A. •BDI-II: N.A. •STAI: N.A. | 1. Disclosing or concealing headache and the dilemma of isolation; 2. Medication addiction; 3. Anxiety; 4. Use of non-pharmacological therapies. |
Cottrell et al. (2002), “Perceptions and needs of patients with migraine: a focus group study.” | United States of America | Focus groups analysed following thematic analysis. | Names of potential participants were obtained from a list of people recruited for a separate headache study conducted by two of the authors; telephone screening. |
Number: 24 Age: range between 25 and 49 y Sex: 100% F Ethnicity: Caucasian Pathology: Migraine, two participants had also occasional tension type headache (TTH). |
•Migraine onset (age): N.A. •Years with migraine: Authors included patients who had experienced migraine for at least six months. •Days with migraine (month): one-two. •Frequency migraine attacks (number): two third of sample had one to three per month. •Days with use of symptomatic medication (month): N.A. •MIDAS: N.A. •HIT – 6: N.A. •BDI-II: N.A. •STAI: N.A. | 1. Effect on social functioning; 2. Effect on family functioning; 3. Effect on work; 4. Effect on relationships; 5. Issues related to physician care; 6. Problems with insurance and drug companies. |
Moloney et al. (2006), “The experiences of midlife women with migraines.” | United States of America | Data were collected in two consecutive multi-method studies: the first one used qualitative interviews, focus group, paper-and-pencil questionnaire (HHQ, Migraine-Specific QoL, SF-36) and six-month daily diaries. The second study was internet-based with both in-person and phone interviews, similar quantitative questionnaires and virtual focus groups (online discussion boards). The interpretative hermeneutic approach was used for analysis. | Ten participants in the first study were recruited from a health maintenance organisation. Forty-three participants in the second study were recruited from a university setting, the local community and the internet. |
Number: 53 Age: range between 40 and 55. Sex: 100% F (perimenopausal women). Ethnicity: 44 Caucasian, eight African American, one English Indian. Pathology: Migraine. |
•Migraine onset (age): N.A. •Years with migraine: N.A. •Days with migraine (month): N.A. •Frequency migraine attacks (number): two/three •Days with use of symptomatic medication (month): N.A. •MIDAS: N.A. •HIT – 6: N.A. •BDI-II: N.A. •STAI: N.A. | 1. Shifting headache patterns: (a) headaches patterns; (b) looking for an answer; 2. Predicting, preventing, and controlling headaches: (a) is this a migraine or something else?; (b) identifying triggers; (c) course of headache: the lurking migraine; (d) medications; (e) I might try…: self-care interventions; 3. Keeping on the move: (a) working through headache; (b) desperation; (c) keeping my arsenal of medicine; (d) having a dirty secret. |
Belam et al. (2005), “A qualitative study of migraine involving patient researchers.” | United Kingdom | Qualitative interviews analysed following a grounded theory. | Patient researchers were recruited from a local intermediate care headache clinic, advertised through the local press, word of mouth and an organisation for people with migraine. Study participants were recruited from a local headache clinic. |
Number: eight Age: average 47,6 Sex: six F and 2 M Ethnicity: Caucasian Pathology: Migraine |
•Migraine onset (age): N.A. •Years with migraine: N.A. •Days with migraine (month): N.A. •Frequency migraine attacks (number): two/three •Days with use of symptomatic medication (month): N.A. •MIDAS: N.A. •HIT – 6: average 70,5 (all results were over 56 that means substantial impact) •BDI-II: N.A. •STAI: N.A. | 1. Impact on life (everyone is different): (a) physical and psychological impact; (b) impact on family and social life; (c) impact on career. 2. Making sense of the problem; Putting up with it; 3. Doing something about it: (a) self-help; (b) professional help. |
Ruiz De Velasco et al. (2003), “Quality of life in migraine patients: a qualitative study.” | Spain | Six focus groups and nine personal interviews. The method used for the analysis was described by Krueger: the researcher offers brief descriptions based on direct data followed by an illustrative example. | Participants were divided in six groups: in the first, second and third groups, patients were recruited from the Department of Neurology of Hospital de Galdakao, Spain. In the fourth group, participants were selected by pharmacists; the fifth group included healthcare professionals (nurses and physicians); the last group included relatives of patients with migraine. |
Number: 41 (29 migraine suffers) Age (average): first group: 35, 43; second group: 37, 66; third group: 34, 13; fourth group: 48, 5. Sex: 30 F overall (27 F and 2 M migraine suffers). Ethnicity: Caucasian Pathology: Migraine with or without aura. |
•Migraine onset (age): N.A. •Years with migraine: N.A. •Days with migraine (month): N.A. •Frequency migraine attacks (number): first group: 3,4 (range 2-6); second group: 5,3 (range 2-11); third group: 6,7 (range 2-12); fourth group 3 (range 2-9). •Days with use of symptomatic medication (month): N.A. First group used prophylaxis (nadolol 70%, amitriptyline 20%, flunarizine 10%). •MIDAS: N.A. •HIT – 6: N.A. •BDI-II: N.A. •STAI: N.A. | 1. Symptomatic aspects; Social aspects: (a) work and studies; (b) family relationships; (c) social relationships; 2. Emotional aspects. |