Objective: To explore important themes in patient experiences with migraine and to understand the relationship of these themes with external factors such as the health care system and societal influences.
Methods: This qualitative study was part of a larger online survey (conducted for a period of 2 months from March 1, 2013, to April 30, 2013) that recruited participants with migraine through nonprobability-based sampling techniques. Respondents were asked an open-ended question to describe their experience with migraine. A codebook was developed based on existing literature and new categories that emerged from the responses. Deductive and inductive content analysis was conducted followed by axial coding of the themes based on the codebook.
Results: The open-ended question resulted in 154 eligible responses. The final codebook contained 28 categories. The categories were combined into 6 distinct themes. The 6 themes included quality of life and health status, disease condition, societal response to disease, health care and medications, support, and patient response to disease. The most frequently occurring categories were pain and quality of life (QoL) (work functioning). The least frequent themes were cognitive symptoms, QoL economic functioning, and caregiver burden. Axial coding of the themes showed that QoL was the central theme. Aspects of the disease condition and negative societal responses were found to substantially affect QoL, leading to caregiver burden and absence/presence of social support.
Conclusions: The findings demonstrate that pain and QoL are central to patient experience with migraine. Attention should be paid to improve the treatment and social support provided to patients and reduce stigma and invalidation.
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