The struggle to understand oneself as a woman, stress, coping and the psychological development of women with turner syndrome

grantor: University of TorontoThe purpose of this study was to describe how women who have Turner Syndrome (TS) experience and cope with this medical disorder. The life experiences of the participants were conceptualized within the context of a stress and coping paradigm. The findings were discussed in relation to two broad theoretical perspectives: Lazarus and Folkman's (1984) transactional model of stress and coping, and a broad range of human development theories primarily focusing on women's psychological development. This descriptive qualitative study used both exploratory and heuristic approaches. Eight women having TS were interviewed in an open unstructured format in order to determine how the experience of TS had affected their lives, and how they had learned to cope with the disorder. The interviews were audiotaped and subsequently transcribed, studied, and coded. Seven themes emerged from the data analysis: 'Intimacy and Connection, Isolation Self-Esteem Knowledge and Understanding, Support, Perspective Transformation ', and one anomalous theme "'No Effect'." The themes fell into two major categories: (1) how the participants have experienced TS as creating psychological stress, and (2) how the participants have learned to cope with TS. A unifying theme, referred to as "The struggle to understand oneself as a woman" focused and summarized the findings of this study. Overall, the themes suggested that the greatest stress for women having TS related to developing and maintaining relationships, and coping with the lack of knowledge and about the disorder. The paucity of relationships created isolation and fractured their self-esteem. In order to cope with this developmental disorder, the participants required support and made significant life changes that involved a perspective transformation. Many of the findings from this study support the extant TS literature. These data have been collected using a qualitative methodology, a procedure not previously employed on this population. Previous research has used a quantitative approach. Further, this work has uncovered new information that has not as yet been described in the TS literature. For example, many of the participants were adult children of alcoholics (ACoA). Critical issues of care, treatment, and the education of individuals having TS were discussed as they relate to physicians, genetic counsellors, parents, psychotherapists and educators. Implications for our society and directions for future research were also outlined.Ed.D