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Background: Multiple Sclerosis (MS) is a chronic degenerative condition. It presents with highly varied physical and psychological symptoms and an unpredictable prognosis, causing difficulties for both professionals and patients. A high prevalence of comorbid psychological symptoms are reported in MS research, yet these may be underreported and underdiagnosed clinically in people with MS. Previous research has taken a dualistic approach, focussing on physical and psychological symptoms separately, resulting in a lack of knowledge on how MS is managed holistically. The aim of this research was to explore the experiences of both people with MS and professionals in the management of physical and psychological symptoms throughout the care pathway for people with MS.Methods: A qualitative approach was used. A systematic review was conducted to investigate existing qualitative literature exploring United Kingdom (UK) health care experiences of people with MS. A qualitative study using semi-structured interviews to explore the experiences of receiving or providing care for people with MS (n =24), general practitioners (n = 13), practice nurses (n = 13) and MS specialist nurses (n = 9). People with MS were purposively sampled from primary care and community settings in North West England. Primary care professionals were purposively sampled from across the North West. Specialist Nurses were purposively sampled from four NHS Foundation Trusts across the North of England. Transcripts formed the data and these were analysed using constant comparison analysis. Once themes had been derived from the data, this data was then interrogated using the concepts of candidacy and recursivity as a theoretical framework (Dixon Woods et al., 2006; Rogers, Hassell & Nicolaas, 1999).Results: Five studies meeting the review criteria were identified from the systematic review. The findings showed that previous UK research had focussed on the beginning (diagnosis) and the end (palliative care) of the care pathway for MS, resulting in a paucity of information regarding experiences of care between these points, for both people with MS and professionals. The subsequent qualitative study addressed this and identified central themes for people with MS: experiences of MS, managing self-care, access to services, interactions with health care professionals and continuity of care. For professionals the central themes identified were: the role of primary care for MS, patient-centred care for MS, access for MS care and management of people with MS. Conclusion: This study provides a unique contribution to the literature on the health care experiences of both people with MS and health care professionals responsible for their care. It has addressed the gaps in knowledge regarding the ongoing health care experiences of people with MS and the holistic management of psychological and physical symptoms. This study showed that candidacy is an appropriate theoretical framework to explain help-seeking and access to health care for MS: use of health services is based on both patient and professionals' interpretation of symptoms, perceptions of services and previous experiences. To improve identification of candidacy there is a need for greater education for patients and professionals on symptoms of MS and information on availability of local services. |
