Fibromyalgia patients' perceptions of their healthcare

This phenomenological study was conducted to add to the body of knowledge\ud regarding fibromyalgia patients??? lived experience of their healthcare. Fibromyalgia\ud is a chronic syndrome, characterized by longstanding, widespread pain; often accompanied\ud by fatigue, nonrestorative sleep, cognitive difficulties, or a variety of other symptoms.\ud Fibromyalgia affects between 0.75% and 5% of the population, depending\ud on the source estimating prevalence. Women are more affected than men, by a 6:1 or\ud 8:1 ratio, again depending on the source of the information. The syndrome is described\ud by some researchers and patients as being as debilitating as heart failure.\ud The literature revealed little information about patients??? experiences with fibromyalgia\ud in general. Even less has been written about patients??? experiences with healthcare. The few studies available are dated, and generally from other countries. This\ud study added to the body of knowledge regarding the experiences of a group of fibromyalgia\ud patients in northern California.\ud The study consisted of interviews with four women who volunteered to be\ud participants. Five themes were identified during data analysis: navigation of the healthcare\ud system, healthcare failures, healthcare successes, collaboration and selfmanagement,\ud and finally, participants??? recommendations to healthcare providers for\ud improving the care of other fibromyalgia patients in the future. Development of these\ud themes led to the following areas of discussion: disbelief and lack of empathy, patient\ud centered approach, nurse led care, and multidisciplinary care.\ud The most serious problem identified by the study was the disbelief and lack\ud of empathy from healthcare providers for these patients. Fibromyalgia, while very debilitating,\ud has no outward signs, leading many providers as well as the public to stigmatize\ud these patients and resist treating them.\ud The inadequacy of the biomedical model for treating these very complex patients\ud leads to the call for a patient centered approach in which providers collaborate\ud with patients to allow patients a high degree of control over their healthcare. The literature\ud supports a patient centered approach to dealing with chronic health issues, such as\ud fibromyalgia.\ud Implications for practice include establishment of nurse led patient centered\ud approaches to the care of fibromyalgia patients. Nurses and advanced practice nurses\ud are well suited to fill the gaps in the care of these patients.\ud Implications for education include an increased emphasis on teaching communication\ud and empathy skills to healthcare providers, including physicians, nurses,\ud and midlevel practitioners. Nurses could also be exposed to the nurse led models of care\ud that already exist.\ud Research implications include research in diagnosis and treatment, barriers\ud to the use of evidence based treatment and the effectiveness of nurse led, patient centered\ud care.CSU, Chic