Patients' and Practitioners' Views and Experiences of Chronic Widespread Pain (Fibromyalgia) and its Management in the UK and Libya

Abokdeer, Sedik (2019) Patients' and Practitioners' Views and Experiences of Chronic Widespread Pain (Fibromyalgia) and its Management in the UK and Libya. Doctoral thesis, Northumbria University.

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Abstract

Background & Aims: Chronic widespread pain conditions such as fibromyalgia are prevalent and costly to the economy. Diagnosis is based upon symptoms, and although fibromyalgia’s existence as a distinct clinical entity is debated, it causes great suffering and distress for those affected. Due to the unclear pathophysiology, controversy regarding its existence as a clinical entity, and variability in diagnosis, clinical management is often difficult, and frequently employs heterogeneous interventions. In addition, there is a paucity of literature from Middle Eastern countries on the condition, where the diagnostic label is not used. The purpose of this research study is to capture service users’ and service providers’ views and experiences of fibromyalgia and its management, including their views on the journey to diagnosis, current practice availability, emotional and life experience, information seeking, and experiences of seeking and receiving health care. It also aims to compare current practice for fibromyalgia in the UK with Libyan management procedures for chronic widespread pain.

Research Method: A mixed methods approach was used in a two-phase study. Phase 1 consisted of twelve semi-structured interviews conducted with people diagnosed with FMS. The participants also completed the Fibromyalgia Impact Questionnaire (FIQ) and the Toronto Alexithymia Scale (TAS). Phase 2 consisted of a national survey of health and medical professionals from the British Pain Society and medical professionals in Libya regarding their views of and management practices for fibromyalgia. Findings were synthesised with qualitative findings.

Results: Using framework analysis, the following themes were identified from the qualitative study: journey to diagnosis, coping with the varying and unpredictable nature of symptoms, emotional impact, and the availability and satisfaction with healthcare practices and services. The primary qualitative study highlighted some difficulties that the participants faced regarding a perceived lack of understanding by health and medical professionals as well as the general public regarding the management of the condition and its emotional and physical impact on their lives. These findings suggested that the patients were not managing daily living activities due to the disabling fatigue and worsening pain. This was corroborated by high FIQ scores and high alexithymia scores. This part of the study has also illustrated that a variety of intervention approaches are used with varying and often limited success.

A total of n=69 respondents completed the survey, n=53 UK respondents and n=15 Libyan respondents. The results indicated that increasing numbers of people are diagnosed with fibromyalgia, though a range of different diagnostic labels are used. Treatment approaches in both countries were primarily focused on exercise and education, with CBT being used in the UK. Respondents from both countries agreed that there was a strong psychological overlay, though there was a variation between opinions regarding whether active management should aggravate pain temporarily in order to increase functional gains.

Conclusions: The results indicate the high physical and emotional impact of fibromyalgia. The participants’ perspectives have emphasised the need for support for people living with FMS, and the need for education and standardisation of approaches in clinical practice in both the UK and Libya.

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