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Title: Parental experiences of Secondary Dystonia and the journey through Deep Brain Stimulation Surgery
Author: Austin, Allana
ISNI:       0000 0004 8498 4966
Awarding Body: Royal Holloway, University of London
Current Institution: Royal Holloway, University of London
Date of Award: 2015
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Secondary Dystonia is a heterogeneous movement disorder which profoundly impacts the lives of children and their families. Deep Brain Stimulation (DBS) Surgery is widely used in the treatment of childhood dystonia. However, motor improvements are more subtle in secondary dystonia and impairment measures have failed to capture the subjective meaning of post DBS change or the functional concerns of parents. Studies have largely ignored the psychological, social and emotional impact of secondary dystonia on children, and parents' experiences have been neglected. This study aimed to move beyond a disability and impairment based conceptualisation of secondary dystonia to consider the lived experiences of parents and children with secondary dystonia. It also hoped to gain an insight into DBS decision making, the experiences of going through DBS surgery and the meaning of post surgery change. Semi-structured interviews were completed with eight parents of children with secondary dystonia who had undergone DBS surgery. Interpretative Phenomenological Analysis (Smith, Flowers & Larkin, 2009) was used to identify themes and connections across parents' accounts. Four superordinate themes emerged: 'a difficult life with disability', 'the meaning of disability and normality', 'an emotional and uncertain DBS journey' and 'the experience and perceptions of change'. Findings highlight secondary dystonia to be a multifaceted socially bound phenomenon that significantly impacts the lives of children and parents. A defining feature was the lack of and search for control. Decision-making was experienced as a process fraught with uncertainty. This decision was the beginning of an emotional, uncertain and turbulent journey through DBS that tested the resilience of families. There was huge variability in DBS outcomes and the subjective meaning of change. Several research and clinical recommendations for healthcare professionals are suggested to meet the unique needs of this client group.
Supervisor: Not available Sponsor: Not available
Qualification Name: Thesis (D.Clin.Psy.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available
Keywords: paediatric ; secondary dystonia ; deep brain stimulation ; parent ; experience ; decision-making