This is a place for talking – an exploration of the transition to adulthood for young women with epilepsy in a residential special college

Fenton, Virginia Kay (2013) This is a place for talking – an exploration of the transition to adulthood for young women with epilepsy in a residential special college. Doctoral thesis (PhD), University of Sussex.

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Abstract

What does it mean to be an adult? What makes a person an adult? How have the circumstances of the lives of the six young women in my study shaped their understanding and perceptions of adulthood? These are the research questions at the heart of this thesis. I wanted to know more about the experiences of the young women that I worked with as a carer at a residential centre for young people with epilepsy and the influences that their experiences have had on how they perceive the world.

This thesis begins with a puzzle in the form of fictional fieldnotes and concludes with an obligation. It charts the journey of the research from origins in a particular cultural setting to its conclusion as the beginning for the next stage, providing an opening chapter for the work that will grow from this study. The puzzle at the beginning of this thesis relates to the neurological functioning of a young woman, Evie (21). As soon revealed, Evie is a fictional character whose story has been told to represent themes from the research. Telling her story was also a way to use ‘writing as a method of inquiry’ (Richardson, 2003).

The methodological approach taken in this research sits within a phenomenological tradition by way of its modern guise as Interpretative Phenomenological Analysis (IPA) as developed primarily by Jonathan Smith, Paul Flowers and Michael Larkin. The use of this methodology reflects a concern with the meaning my participants take from their experiences (Smith et al. 2009). I focused on the transition to adulthood as this was the ‘common phenomenon’ that my participants seemed to hold as a central concern in their lives. Five themes emerged from the analysis:

 Alcohol = Adulthood
 Adulthood is - independence
 Adulthood is - domestic competence
 Adulthood is - a ‘code of behaviour’
 Adulthood is - an achievement

The findings from the phenomenological analysis have been juxtaposed with an account of the research findings written as ethnographic fiction. ‘Evie/I’ is a story that includes reflections on the relationships I have had with young people in my care and the one which developed when I took on a researcher identity. It relates how knowledge of past histories shaped how I interpreted what the participants in my study revealed to me and the development of a reflexive stance as a researcher. It is my intention that the juxtaposition of these related but different accounts of the findings should enhance the reader’s understanding of both.

Central to this thesis are Bourdieu’s concepts of species of capital, habitus and field theory and they have been used as a theoretical framework. A conceptual model has been created to map the themes developed as they fit into the ‘code of behaviour’ my participants seem hold central to the achievement of adult status. The epilepsy centre where this research was conducted is a ‘field’ with certain characteristics. This has been considered in relation to the ‘habitus’ my participants have developed as young women in this particular situation. Feminist theory has also influenced the way in which this research was conducted.

Research relating to people with epilepsy seldom includes the voices of those with the condition and qualitative research approaches are relatively scarce (Andermann, 2000). The young women in this study also have learning disabilities and this factor likewise lessens the likelihood that their views will be represented in the research literature (Walmsley, 2001; Atkinson, 2005). The rationale behind the research relates to the need to address this omission. The obligation that concludes this thesis concerns the need for further research that includes the perceptions and voices of young people such as those in my study.

Item Type: Thesis (Doctoral)
Schools and Departments: School of Education and Social Work > Social Work and Social Care
Subjects: H Social Sciences > HQ The Family. Marriage. Women > HQ0503 The Family. Marriage. Home > HQ0793 Youth. Adolescents. Teenagers
H Social Sciences > HV Social pathology. Social and public welfare. Criminology > HV0040 Social service. Social work. Charity organization and practice Including social case work, private and public relief, institutional care, rural social work, work relief
R Medicine > RC Internal medicine > RC0321 Neurosciences. Biological psychiatry. Neuropsychiatry > RC0346 Neurology. Diseases of the nervous system Including speech disorders > RC0349.8 Therapeutics > RC0360 Diseases of the central nervous system > RC0372 Epilepsy
Depositing User: Library Cataloguing
Date Deposited: 27 Jun 2013 14:51
Last Modified: 15 Sep 2015 12:06
URI: http://sro.sussex.ac.uk/id/eprint/45296

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