Transformation through adaptation: a grounded theory of the patient experience of Alcohol-Related Brain Damage
Simpson, Heather Jayne
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Background: Alcohol Related Brain Damage (ARBD) is an umbrella term used to describe the range of effects that long-term consumption of alcohol can have on the structure and function of the brain. Despite the increasing prevalence of ARBD, there is a lack of research in this area, and as a result, there are no current guidelines and few services available for the treatment of this condition. There is therefore a need to increase the evidence base in this area, which will assist in the understanding, and ultimately treatment, of ARBD. Aims: This thesis consists of two parts. The first is a systematic review journal article which asks the question: “What is the impact of alcohol-abuse on memory function within the first three weeks of alcohol withdrawal?” The second part is a qualitative research project which aims to develop a grounded theory regarding the patient experience of ARBD, identifying and highlighting themes and concepts that are central to the experience. Methods: For the systematic review, four databases were searched. Studies that were included in the review had to have participants with alcohol-dependence; abstinence of less than or equal to three weeks; and to have undergone some form of neuropsychological assessment of memory function. Data from 15 articles were extracted and assessed for quality. For the qualitative study, participants (n=10) were interviewed regarding their experiences of ARBD and the data was then analysed using grounded theory methodology. Results: The results of the systematic review were somewhat ambiguous with some studies reporting impairments in verbal and visual memory, while other studies found no impairments. Episodic memory deficits were present in all studies reviewed. The results of the qualitative study propose a tentative model which describes “transformation through adaptation”. This model hypothesises that successful negotiation of the journey through ARBD hinges on the adaptations that need to be made in order to progress towards transformation. The model is understood in the framework of a number of phases, “Being diagnosed with ARBD, “Focusing on abstinence”, “Taking ownership of life with ARBD” and “Creating a valuable life”, all of which exist within a framework of being supported by specialist services. Conclusions and implications: The systematic review demonstrated some support for deficits in visual and episodic memory within the first three weeks of abstinence, while it appeared that verbal memory was relatively preserved. The heterogeneity of the studies, coupled with the methodological variability, meant that all conclusions need to be considered as tentative, and be interpreted with caution. The main difficulties with interpretation were to do with the confounding factors often found within this client group. The results reinforce the concept of tailored treatment programmes for individuals due to the large variability of the effect of alcohol (and other factors). The qualitative study proposes a model that shows how adaptation appears to play a key role in the successful negotiation of a diagnosis of ARBD. The study describes a series of categories that can be used as a framework to identify and support the changes that are necessary for recovery and reintegration. The value in this study is that the results are directly attributable to individuals who have been diagnosed, and are now successfully living, with ARBD.