Spina Bifida and me : the lived experience of its effects on self and family

Abstract

The focus of this research project is to explore the lived experience of individuals with Spina Bifida and how they perceive this may have an impact on them and on their family. It further attempts to voice a number of effects pertaining to each individual’s unique experience and their family. This study also aims to provide additional insight towards an under-researched topic. The data was gathered through five in-depth, semi-structured interviews and analysed using Interpretative Phenomenological Analysis (I.P.A.) as the preferred qualitative method. This was considered to be of utmost relevance due to the uniqueness and subjectivity of each individual’s experiences. The findings from these interviews elicit three main themes: challenges encountered, the role of varying relationships and coping with Spina Bifida. Furthermore, this research gives mention to the impact that the disability might bring, not only to the obvious physical aspect, but also to the relational and psychological domains. Despite encountering many challenging situations throughout their journey, all participants seem to try their best to adopt a positive outlook on life.