The lived musical experiences of individuals living with Williams syndrome : an interpretative phenomenological analysis

Abstract

This study was inspired by my experiences with a Williams syndrome child, which drew my attention to the meaningful experiences that children with Williams syndrome might have with music. The problem of the study can be defined in terms of five aspects. Firstly, individuals diagnosed with Williams syndrome suffer medically, socially and cognitively (Levitin & Bellugi, 1998:358-359) and music seems to be an aspect of their lives that could make things easier for them. Secondly, those suffering from Williams syndrome seemingly struggle to adapt to their social surroundings (Bellugi et al., 1994:5). The third aspect that defines the problem is that families of individuals with Williams syndrome in South Africa do not have sufficient access to educational facilities that are equipped to work with their children. This forces them to home school their children without the ability to educate them optimally. Fourthly, the research problem also stems from the lack of awareness about the lived musical experiences of individuals living Williams syndrome. It becomes clear that heightening awareness of the lived musical experiences of Williams syndrome individuals has not been addressed in research. Lastly, researchers have yet to undertake in-depth qualitative studies on the meaning of musical experience for the learning experiences of those suffering from Williams syndrome. The purpose of this interpretative phenomenological analysis (IPA) is to understand the lived musical experiences of individuals living with Williams syndrome in Southern Africa1. Williams syndrome is defined as a rare genetic disorder which presents when around 20 genes are deleted on chromosome 7 at conception (Bellugi et al., 2007:98). This study follows an IPA approach and aims to gain insight into how participants understand their lived musical experiences. The theoretical foundations for IPA are based on “three key areas of philosophical knowledge, namely phenomenology, hermeneutics and idiography” (Smith et al., 2009: 11). For this study data were collected by conducting in-depth semi-structured interviews with three purposefully selected participants. The interview transcriptions were then analysed separately using ATLAS.ti 7 computer software. After each interview transcript was analysed individually, superordinate themes emerged from a cross-case analysis. The results of the study revealed four superordinate themes regarding the musical experiences of the three Williams syndrome participants: a passion for performing, fostering friendships, lightens the load and dependent on music. The study found that music contributes to the overall well-being of the three participants in a way that allows them to feel accepted by others and to escape the label of being diagnosed Williams syndrome.