“I Was the Third Parent”: A Qualitative Study of Growing Up with a Sibling with Dravet Syndrome.

Farrar, Bethany (2018) “I Was the Third Parent”: A Qualitative Study of Growing Up with a Sibling with Dravet Syndrome. Manchester Metropolitan University. (Unpublished)

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Abstract

The impact of child disability on siblings from their own perspective is underrepresented within existing research. In the current body of literature that does exist, research on the effects of rare disorders is in the minority. This qualitative study therefore aimed to investigate the experience of growing up with a sibling with Dravet Syndrome, focusing on long term developments. To allow for this retrospective approach, only adult siblings participated, with ages ranging from eighteen to thirty-six. Semi-structured interviews with six participants produced a comprehensive insight into their journey. A systematic thematic analysis of the data generated three themes: The Challenge of Dravet Syndrome (1), Impact on Family and Daily Life (2), and Impact on Development of Self (3). Although facing periods of adversity, the majority of participants expressed an overall refreshingly positive outlook of their experience. The findings highlighted the need for similar individuals to receive more recognition within society and further long-term evaluation of impacts on siblings through the process of diagnosis and beyond.