Staton, Amelia
(2023)
Functional neurological disorder: a qualitative study exploring experiences of psychological services.
DClinPsy thesis, University of Nottingham.
Abstract
Background: Functional Neurological Disorder (FND) is classified as a “disorder of the voluntary motor or sensory system with symptoms including paralysis, tremor, dystonia, sensory disturbance (including visual loss), speech symptoms, and seizures” (Stone et al., 2020, p.1). Individuals with a diagnosis of FND have reported negative and stigmatising interactions with healthcare professionals in medical settings. This is hypothesised to be linked to the etiologic uncertainty and historical context of the condition. Due to current NICE guidelines and service provision, individuals with FND are routinely referred to psychological/mental health services. However, there is no research exploring individuals’ experiences in these settings. The perspectives of those accessing services are essential in understanding and improving the quality of healthcare provision. The aim of this research was to explore experiences of accessing UK psychological services, from the perspective of those with FND.
Method: This study utilised a qualitative approach with data collected from semi-structured interviews and analysed using reflexive thematic analysis. Demographic data was collected and used to contextualise the findings from the semi-structured interviews. 15 participants (12 women and 3 men) were recruited via social media platforms.
Results: One superordinate theme, ‘the stigmatised self within the therapeutic relationship’, and five interrelated main themes were identified: ‘internalised stigma and self-doubt', ‘selective disclosure to professionals’, ‘perceptions of psychological explanations’, ‘having to educate the professionals’ and ‘attunement and trust within the therapeutic relationship’. The way in which participants conceptualised themselves and their condition appeared to be heavily influenced by their experiences of therapeutic relationships. These were considered in the context of reciprocal roles; the roles adopted by individuals in response to the perceived role that has been adopted by the professionals/services. The themes also captured how the concept of stigma interacted with perceptions of and the meaning made of interactions with professionals.
Conclusions: Intra-personal, interpersonal, and organisational stigma impact access and engagement to psychological treatment. In the intra-personal domain, experiences of perceived stigma appeared to negatively impact how individuals conceptualised themselves and their condition. Perceptions of stigma in mental health services may be viewed in the context of personal-level barriers (internalised stigma, perceptions of ineffective service) and system-level barriers (lack of FND knowledge and training, service development constraints). The lack of specialist provision for FND results in individuals accessing general mental health services that are not resourced to meet their needs. This may highlight more fundamental issues regarding the false mind-body dualism that underpins service provision. Positive therapeutic relationships were highlighted as mitigating the impact of these perceived barriers. Furthermore, the therapeutic alliance may challenge individuals internalised stigma and increase perceived acceptability of psychological formulation and intervention. The findings of this study highlight the need for increased training provision for practitioners with a focus on actively challenging FND stigma within services at both an individual and systemic level.
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