Experiences of women living with fibromyalgia: an exploratory study of their information needs and preferences

Abstract

Women living with fibromyalgia consistently 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 compromised health and quality of life. The aim of this study was to explore the experiences of information use of women living with fibromyalgia. A descriptive phenomenology was used for this study. Participants were identified through gatekeepers for women living with fibromyalgia across Canada. Data was collected via taperecorded 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 experiences of women: i) understanding the need for information required to live with fibromyalgia, ii) struggling to meet vital and fundamental 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 information needs.

What is the Experience of Receiving Health Care for Neck Pain?

“…In a study of information-seeking experiences of patients with fibromyalgia, we found that patients experienced a similar frustration with health care providers not being able to provide accurate and useful information about their health problem [39, 40]. Patients did express concerns for quality information similar to that reported in a previous qualitative study of neck and back pain [23].…”

“You have to believe the patient”: What do people with fibromyalgia find helpful (and hindering) when accessing health care?

“…Not only is interdisciplinarity the recommended approach for chronic pain, but this study suggests that it is something patients are explicitly or implicitly seeking. Participants in this study echoed a need for information about FM, 29 highlighting how few participants had received biopsychosocially framed approaches like pain education, energy conservation tools, and psychosocial interventions. A further outcome of this study emphasizes how participants employed strategies like personal research, self-advocacy, and self-management to compensate for these gaps in care.…”

Barriers, facilitators, preferences and expectations of joint protection programmes for patients with hand arthritis: a cross-sectional survey

“…The third most preferred choice of JP delivery was at the clinic. Our previous studies of information access preferences in patients with fibromyalgia 21 22 indicated that face-to-face interaction with healthcare providers was the most preferred way of getting information and it is likely that this is the positive aspect for attending a clinical site. Previous review has indicated that patient-centred interaction styles related to the provision of emotional support and allowing patient involvement in the consultation process may enhance the therapeutic alliance between clinician and patient.…”