Fibromyalgia is a complex chronic condition that causes people to feel pain all over their body, while also feeling chronically fatigued, and finding it difficult to get restorative sleep. This distressing condition can also be accompanied by significant concentration and memory difficulties, as well as anxiety and low mood.

Affecting approximately 1 in 20 people, fibromyalgia often adversely impacts a person’s relationships, work, and other aspects of daily life. While the condition can be highly debilitating, the criteria for diagnosing it are not always agreed upon by medical professionals, as conventional medical exams, such as blood tests, imaging tools, and so on, do not reliably aid its diagnosis. As a result, people with fibromyalgia often feel their symptoms have been dismissed or trivialised by physicians, leaving them feeling misunderstood, disbelieved and invalidated.

Ria Nishikawara at the University of British Columbia led a study aimed at better understanding what patients with fibromyalgia find most and least helpful when they are accessing healthcare services. Her hope was to gather valuable insight that could guide healthcare providers, allowing them to better assist patients with this poorly understood condition, while also potentially decreasing their frustration and feelings of discouragement.

As part of the study, Nishikawara interviewed 14 adults diagnosed with fibromyalgia. Lasting up to two-and-a-half hours, the interviews were comprehensive and consisted of three parts.

In the first part of the interview, participants were asked to provide some general and contextual information about their own personal healthcare journeys. In the second part, they shared specific incidents that exemplified the elements they found helpful or issues they encountered when seeking help. They also outlined healthcare aspects that they wish would be improved or things that they would like to see incorporated into available services. During the final part of the interview, the participants filled in a questionnaire collecting their demographic information.

Nishikawara subsequently transcribed all the interviews and summarised the main points presented in them. She asked each study participant to review the summary of their interview to confirm whether it adequately presented their experience.

To analyse the participants’ experiences in a meaningful way, Nishikawara used a qualitative research method known as the Enhanced Critical Incident Technique, or ECIT. This is an approach for conducting domain-specific interviews and analysing interview responses based on the theoretical work of psychologist John C. Flanagan. This approach can help researchers to understand a group of people’s subjective experiences, such as factors that hinder or help people’s access to health care for fibromyalgia.

The ECIT allowed Nishikawara to confirm that her interviews were credible and helped her to identify some recurring themes among the patients’ accounts. Overall, the participants shared 618 relevant incidents that marked their journeys while trying to access healthcare services for fibromyalgia. 297 of these events were described as hindering or challenging, 231 were considered helpful, and 90 described things that the patients wished to see available.

Nishikawara finally grouped the incidents into three different themes, each of which also included sub-categories. The first meaningful category contains systemic navigation factors. This category includes three commonly mentioned topics, namely financial and economic security; accessibility, flexibility and continuity of care; and the diversity of available treatment options.

Some participants had experienced difficulties in accessing healthcare services due to their high cost or lack of health insurance. In addition, some reported episodes that highlighted the limitations of available care, for instance mentioning inflexible cancelation policies, long wait times, lack of follow-up contact, or an absence of virtual care options. Participants also lamented the limited amount of specialised healthcare services and treatment options, as well as some unhelpful experiences with complementary healthcare providers.

The second category identified by Nishikawara contains factors related to relationships between clinicians and patients, such as invalidation, prejudice, the therapeutic bond, and the agreement on a treatment plan. She found that the majority of distressing and adverse experiences reported by patients were related to their interactions with healthcare professionals.

For instance, many participants reported incidents in which they perceived doctors as having prejudiced beliefs about fibromyalgia, and minimising or dismissing their symptoms as being part of a mental health condition. Some participants also shared adverse experiences related to their treatment plan, mentioning that a clinician had poorly informed them about their treatment or did not follow-up to check whether it was having the desired effects.

On the other hand, healthcare experiences that participants found most helpful included empathetic clinicians. In addition, patients reported feeling satisfied with their care at times when they understood the treatment plan and its potential side-effects well, while also feeling adequately supported by their clinicians and feeling like they mattered.

The third recurring theme identified by Nishikawara was related to patient self-management strategies. These included independent research, self-advocacy, social support, symptom management techniques such as mindfulness and pain education, and other coping strategies, including planning, and creative outlets. During their interviews, all study participants reported that one or more of these strategies had been helpful for them.

Nishikawara’s study provides detailed and valuable accounts of what patients with fibromyalgia can experience in healthcare settings, identifying some of the challenges they face and factors that help them to feel better, fuelling better therapeutic outcomes.

For instance, while many people with fibromyalgia feel that they clearly communicate their needs to healthcare professionals, they describe the healthcare system as often slow or ineffective in responding to these needs. The responses gathered by Nishikawara show that many people with fibromyalgia wish to receive reliable information about their condition, as well as helpful and reasonable suggestions that can help them manage their symptoms.

Her work also highlights the benefits of establishing trusting clinician-patient relationships that validate a patient’s symptoms and experiences, rather than questioning them or discounting them as part of a mental health disorder. Finally, it emphasises the need to improve education and awareness related to the psycho-social aspects of fibromyalgia, as well as the importance of clearly communicating with patients when deciding on interventions that best suit their needs.

Collectively, these findings could serve as a general guideline for health professionals, helping them to improve the lives of patients with fibromyalgia.