title: The Lived Experience of Acquiring Life Skills with Congenital Total Blindness: An Interpretative Phenomenological Analysis
Creators: name: Ingram, Errol W.
Publisher: name: Griffith University
Year: 2019
Subjects: subject: Blindness
subject: Congenital total blindness
subject: Disability-specific skills
subject: Expanded core curriculum
subject: Interpretative phenomenological analysis
subject: Life skills
subject: Visual impairment

description: In 1996, Dr Phil Hatlen an internationally renowned educator of students with visual impairments, observed that young people with congenital total blindness (CTB) face poor quality of life outcomes in adulthood, when basic life skills have not been acquired by the completion of secondary education. Similar concerns have been raised, that young people with visual impairments often reach adulthood with significant gaps in basic life skills, leading to poor quality of life outcomes in adult life (Douglas &amp; Hewett, 2014; Ravenscroft, 2013; SPEVI, 2016). To date, these claims have not been investigated in relation to the lived experiences of young people with CTB. The purpose of this current qualitative study was to investigate how young adults with CTB understand their lived experiences of life skills acquisition. Interpretative Phenomenological Analysis (IPA) was used as the theoretical framework and methodology to explore this question. Four young people with CTB between the ages of 18-35 years were interviewed for this study. In addition, each young adult nominated a parent to be interviewed, and accordingly, five parents also took part in the study. The interviews were transcribed verbatim, analysed, and interpreted using hermeneutic phenomenology. Four superordinate themes emerged from an IPA of the data: (1) understanding life skills, (2) acquiring disability-specific skills, (3) reaching adulthood with life skill gaps, and (4) making sense of independence. The findings of the study confirmed that the young adults had reached adulthood with gaps in their basic life skills despite having received extensive formal disabilityspecific skill interventions in childhood and adolescence. A central finding of the study was that the young adults were sanguine about their current lives and optimistic about their futures, because they had found pragmatic and meaningful ways to deal with shortfalls in their acquisition of life skills. The findings also revealed that the informants understood their lived experience of acquiring life skills with CTB, not as an abstract process, but as a quest for personal autonomy, which took place in the sociocultural context of family, community, and culture. Accordingly, the study concluded that structured life skill acquisition interventions for young people living with CTB need to be meaningful, as well as more efficacious, in order to facilitate better life skills acquisition and quality of life outcomes. The thesis discusses the implications of the research findings for young people with CTB and those working with them. The thesis also presents specific ways of improving the efficacy and meaningfulness of structured life skill acquisition interventions for young people with CTB, including recommendations for further research.