Rheumatology Reports 2011; volume 3:e15 Experiences of women living with fibromyalgia: an exploratory study of their information needs and preferences Lubna Daraz, 1 Joy C. MacDermid, 1 Lynn Shaw, 2 Seanne Wilkins, 1 Jane Gibson 3 1 School of Rehabilitation Science, Faculty of Health Sciences, McMaster University, Hamilton; 2 Faculty of Health Sciences, School of Occupational therapy, University of Western Ontario; 3 Knowledge Translation, Institute for Work and Health, Toronto, Ontario, Canada Abstract Women living with fibromyalgia consistent- ly report experiencing a change in their lives in terms of stigma, inability to work, isolation from society and difficulty in managing their illness. Lack of understanding and knowledge about their disease has been linked to compro- mised health and quality of life. The aim of this study was to explore the experiences of infor- mation use of women living with fibromyalgia. A descriptive phenomenology was used for this study. Participants were identified through gatekeepers for women living with fibromyal- gia across Canada. Data was collected via tape- recorded interviews. The study was conducted in Canada between 2009-2010. Ten women (18 or older) participated in the research. Three essential themes emerged from the analysis that were vital to understand the unique expe- riences of women: i) understanding the need for information required to live with fibromyal- gia, ii) struggling to meet vital and fundamen- tal information needs and iii) transforming themselves to improve health and quality of life. Women living with fibromyalgia have vital and specific information needs and struggle to find and access appropriate information. They use diverse strategies in overcoming some of the challenges in accessing information. Most significantly, women draw on the information to make changes and to begin to coordinate their lives to live with fibromyalgia. For women living with fibromyalgia, the phenomenon of information use has a significant effect on their lives. Healthcare providers are perceived as an important source of information and need to be better informed, more prepared and dedicated to assisting women with their infor- mation needs. Introduction Fibromyalgia, chronic widespread muscu- loskeletal pain, is a common and increasingly diagnosed disease. People living with this dis- ease, share some common co-morbidities such as migraine, irritable bowel syndrome, chronic fatigue syndrome, depression, mood and panic disorder. 1 In developed countries such as Canada, 1.1% to 3.3% people are diagnosed with fibromyalgia. Among those diagnosed, the female to male ratio is six to one. 2,3 These high prevalence rates of fibromyalgia are also simi- lar in the USA and Europe. 4-6 There are few criteria for making a diagno- sis of fibromyalgia 7,8 however, some argues that those criteria are inaccurate and patients are over diagnosed by physicians. 9 As a result, there is no gold standard available for diagno- sis and treatment for fibromyalgia. If people are not able to manage the condition for a number of years, it becomes a regular, perma- nent and underlying pain, which is difficult to manage, resulting in disability. 10,11 Recogni- tion of the disease has recently increased in parallel with research on the disorder. It has been predicted that fibromyalgia, like other arthritic diseases, will continue to increase in prevalence and that women will continue to be more predominantly affected by this disor- der. 2,3,12,13 Due to the various co-morbidities associat- ed with fibromyalgia, women suffer tremen- dously as a result of fibromyalgia. 1,2,14,15 They experience life changes due to stigma, inabili- ty to work, isolation from society and not being able to manage their own condition. 4,16-22 For example, due to the chronic pain from fibromyalgia, women experience problems with movements, flexibility, work positions, adjustment to change in work roles in addi- tion to reduced muscle strength and stami- na. 17,19,21 These problems restrict them in ful- filling their work and social roles 20 which sig- nificantly impact on their quality of life. 19,20,23,24 In addition, women experience further challenges due to a lack of access to information about their illness. Many studies that investigated the experience of living with fibromyalgia, reported that the loss of quality of life was increased due to a lack of aware- ness from healthcare providers and limited knowledge of the disease. 4,16,17,19,25-27 Women report stigmatization in the workplace, including being accused of lying about their suffering to try to avoid their duties at work. 20 In addition to these issues, women also expe- rience a loss of freedom, threats to their integrity and struggle to achieve relief and understanding. 4,16,17,22 Since healthcare pro- fessionals may not adequately understand the experience of fibromyalgia or how to best manage it, it could be anticipated that women are challenged by a lack of adequate informa- tion. We might also suspect that given the controversial nature of fibromyalgia, women may be confronted with conflicting informa- tion or attitudes towards their health prob- lem. For all chronic disease self-management, knowledge of the disease is a critical factor to obtain a better health and quality of life. 28-32 However, an examination of the experience of information use of women living with fibromyalgia has been overlooked. We refer to information use experiences as information needs, availability, preference, access and application issues that are important to address to help women manage and live with fibromyalgia. The purpose of this study was to explore the experiences of information use by women with fibromyalgia in order to under- stand the role of information in their day-to- day challenges of living with the illness. Correspondence: Lubna Daraz, School of Rehabilitation Science, Faculty of Health Sciences, McMaster University 1400 Main St.West. IAHS - 403. Hamilton, ON, L8S4L8, Canada. Tel. +1.647.781.8536. E-mail: darazl@mcmaster.ca Acknowledgement: this work was supported from a Doctoral Research Award (Frederick Banting and Charles Best Scholarship) from the CIHR; a Strategic Training Fellowship in Rehabilitation Research from the CIHR Musculoskeletal and Arthritis Institute; a S. Leonard Syme Training Fellowship from the Institute for Work &Health; and a MSK Training Fellowship from the Ontario Rehabilitation Research Advisory Network to Lubna Daraz. Key words: fibromyalgia, chronic pain, women’s health, information use, coping, quality of life. Contributions: LD, topic selecting, research ques- tions formulating, literature reviewing, study designing, data collecting and analysis, manu- script drafting and revising; JCMD, SW, LS, JG, manuscrpt conception and design, data analysis, manuscript revising. Conflict of interest:: the authors report no finan- cial interests or potential conflicts of interest. Received for publication: 22 June 2011. Revision received: 22 November 2011. Accepted for publication: 25 November 2011. This work is licensed under a Creative Commons Attribution NonCommercial 3.0 License (CC BY- NC 3.0). ©Copyright L.Daraz et al., 2011 Licensee PAGEPress, Italy Rheumatology Reports 2011; 3:e15 doi:10.4081/rr.2011.e15 [page 56] [Rheumatology Reports 2011; 3:e15] Non-commercial use only