The moderator elicited comments from quieter participants by specifically inviting their views on discussion topics. To prevent the opinions of especially verbal participants from receiving undue attention, the moderator probed for differing experiences from other group members. Each discussion took approximately 2 hours.
All sessions were audiotaped and transcribed. Transcripts were read independently by 2 of the authors (C.K.C. and S.E.W.), who arranged comments into categories and themes. Disagreements were resolved by mutual agreement and validated by 2 other authors (K.A.H. and F.J.O.). Typical statements were selected for inclusion in this report.
Results
Participants’ comments on migraine management fell into 6 primary categories. Representative comments are provided in Table 1.
TABLE 1
IMPACT ON DAILY LIFE
| Impact on family |
| “I’m not the mom I wanted to be. I’m short-tempered, and I don’t like that. They [family members] all try to leave the house [when I have a migraine].” |
| “Being at home, I pretty much run the show. So if I’m not up and going, the show’s not going. The show shuts down.” |
| Impact on social activities |
| “Gradually, things are taken away from you. Like you can’t even walk down the street on a sunny day because the sun will give you a headache.” |
| Impact on relationships |
| “I think people look at you like, ‘Yeah, right, everybody has headaches. They’re not that bad; just get a grip and keep going.’” |
| Impact on work |
| “I always stay at work [when I have a migraine]. I try to look productive, but I’m only doing half. You get a reaction if you tell [coworkers]. After about the fourth headache in 2 months, they just don’t buy it.” |
Effect on Social Functioning
Group discussions indicated that all aspects of social and recreational activities were hampered by migraines. In particular, avoiding food triggers was reported to be difficult because in some situations, there was no way to determine whether the food had been prepared with additives that might trigger a headache. This was an especially difficult barrier because food often plays a central role in social activities.
Effect on family functioning
Although participants regretted, and sometimes resented, being unable to participate in social activities because of their migraines, the effect on family, particularly children, was especially troublesome. Many participants felt they were less available and less understanding as parents as a result of migraine-induced irritability, feeling emotionally and physically drained for days after a migraine, and feeling “drugged” from taking medications.
Further, being forced to place restrictions on their children’s activities left many parents feeling that they and their children had been “cheated” by the migraines. Many participants expressed guilt about their inability to prepare meals, help with homework, or complete other routine household chores. Finally, some were frightened at the possibility that they might have a migraine when away from home but still retain responsibility for caring for the children. Both the migraine itself and the medication used to treat it left many feeling they should not drive, even when they had no alternative.
Effect on work
The predominant emotions evident during discussions of job functioning were fear and guilt. Most participants expressed apprehension about the possibility of losing their jobs if they missed work because of their migraines. Those who went home with a migraine reported lost pay or fewer vacation or personal days to enjoy when feeling well. Thus, participants reported often trying to “just keep going” in spite of the headaches. These efforts contributed to lost productivity, feelings of guilt for not carrying a fair share of the workload, and, in some cases, decreased pay because of failure to meet job quotas.
Effect on relationships
Participants’ comments suggest that others’ reactions to migraines are associated with shame, anger, and frustration. Most participants verbalized an unwillingness to tell others when they were experiencing a migraine, reporting that people were unsympathetic. The consensus was that most people dismissed migraines as insignificant and “think you’re embellishing it.”
Issues related to physician care
Some group members were happy with the medical care they received. Identified as important behaviors were a physician’s willingness to consider alternative treatments, to “sit down and listen,” and to “pull out a book and look it up.” However, significant frustration related to medical care was evident as well (Table 2). The most emotionally laden issue in this category was the feeling of being “dismissed” by physicians who did not appear to take complaints of headache pain seriously. Some participants reported that they had endured years of frequent migraines since allegedly being told to “live with it” by a physician.
The majority of group members perceived that they had to take responsibility for researching new treatment options, including medications and alternative therapies, and to take suggestions to their physicians. Some, especially women considering pregnancy, were dissatisfied with a perceived emphasis on drug therapy. Many participants were concerned about possible long-term complications from taking potent medications and believed that their health care providers addressed their concerns inadequately.