Background Apart from the medical effects present in Huntington's Disease (HD), the lives of affected individuals are also influenced by cultural and social frameworks within the society. These aspects give rise to new meanings and practices among affected individuals.
Aims The aim of this interdisciplinary research project between the medical and cultural sciences is to increase the capacity to understand and meet challenges offered by a hereditary neurodegenerative brain disorder such as HD. The focus of the study is to investigate how individuals affected by HD create new meanings and practices in relation to themselves, medical research, clinical practice, as well as the society at-large.
Methods In the first phase of the project, semi-structured in-depth interviews were conducted with individuals affected by HD (n=10), using qualitative methods based on phenomenology. Key-features of the participants’ experiences and practices in relation to HD were identified, which were subsequently analysed by means of cultural and social theory.
Results Participants experience feelings of dissociation from social networks, as well as feelings of frustration and a lack of understanding, predominantly in relation to care-taking and assistance, but in some cases also in conjunction to predictive test decision-making.
Conclusions The perceived feeling of dissociation points towards stigmatisation and change in social identity for HD-affected individuals, which is linked to cultural and social frame-works specifying such notions as normality, abnormality, purity and danger within western culture. The expressed feelings of frustration and lack of understanding can se been as a separation and rationalisation of the participants’ everyday life-world by various societal spheres.
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