What hinders and helps individuals accessing healthcare services for Fibromyalgia : a critical incident study

Fibromyalgia (FM) is a complex condition characterized by chronic diffuse pain and increased sensitivity to pain, chronic fatigue and sleep disturbance, cognitive difficulties, as well as a range of co-occurring conditions. While FM presents with severe and often debilitating symptoms, it has no known aetiology, and cannot be identified by any objective tests; as a result, it poses diagnostic and treatment problems within the conventional biomedical healthcare system, often leaving patients struggling to find adequate care. While a growing body of literature has explored the topic of FM, it is largely focused on either biomedical perspectives, or ways the condition impacts individuals’ lives. To date, little research has explored healthcare experiences for individuals with FM. The present study used the enhanced critical incident technique (ECIT) to explore the hindering and helping experiences of healthcare of 14 individuals diagnosed with FM, as well as what these individuals believe would have been helpful had they been available. Results identified 16 categories, further organized across the five environmental systems of the ecological systems theory (EST). The EST can be visualized as five concentric circles, representing systems or spheres of influence, with the individual, or person, at the centre. The outermost layer, the macrosystem, which encompasses the cultural environment in which a person lives, contained two categories: clinical understanding of FM, and prejudice. The second layer, the exosystem, which encompasses the larger social system, contained four categories: financial and economic security and affordability of services, models of healthcare delivery, accessibility and flexibility, and diagnosis making. The third layer, the mesosystem, which encompasses interactions between parts of a person’s microsystems, contained one category: continuity of care. The fourth layer, the microsystem, which the person’s direct relationships, contained five categories: therapeutic alliance, informed consent, iatrogenic suffering, validation, and counselling and psychotherapy. The innermost layer, the person, which encompasses a person’s personal characteristics, contained four categories: internalization of adverse healthcare experiences, medication, exercise and physical activity, and active coping and social support. These results can serve to inform counsellors and other healthcare providers who work with patients with FM, as well as future research.Education, Faculty ofEducational and Counselling Psychology, and Special Education (ECPS), Department ofGraduat