| For people living with fibromyalgia, knowledge of their disease is a critical factor in planning for and achieving better health and a higher quality of life. Yet, there is a gap between perceived importance of information and our understanding about the specific information needs of this population. Given the substantial burden that fibromyalgia places on individuals and society there is a need for research that defines information needs and availability relevant to this health condition. The aim of this thesis was to explore the experience of information use, and identify the information needs and preferences of people who are living with fibromyalgia. A descriptive phenomenology, with 10 women (18 or older) with fibromyalgia, was used to explore their experiences of information use in managing their disease. A descriptive cross-sectional web-based survey (n= 442) was developed and administered, based on issues derived from the qualitative study and literature to provide a quantitative assessment of the information needs and preferences of people living with fibromyalgia. Finally, an assessment was performed using DISCERN, a Quality Checklist and the Flesch Reading Ease formula to assess the content, quality and readability of 25 selected websites accessed through 'Google' search using 'fibromyalgia' as the search keyword. Findings from the studies demonstrated that despite gender and educational differences, people with fibromyalgia are in great need of specific types and sources of information. These same people reported that they encounter a lack of support within healthcare systems. Additionally, the findings showed that the existing online fibromyalgia information resources are incomplete, have low quality and high level of literacy. Access to information about their condition creates a sense of empowerment in people with fibromyalgia. They expect relevant and high quality information from their healthcare providers and other reliable sources. Simple and usable information on their condition will help them increase their knowledge, help with informed decision-making and improve self-management and quality of life. |
