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Community, Photovoice, Resilience, Social model of disability, Turner syndrome







Creative Commons License

Creative Commons Attribution 4.0 International License
This work is licensed under a Creative Commons Attribution 4.0 International License.


Turner Syndrome (TS) results from the total or partial loss of the second X chromosome in females. Approximately 73,469 individuals across Canada and the U.S. are affected by TS. While the amount of research on TS has grown significantly in the past few decades, this work has traditionally taken a medicalized and deficit-based approach to understanding this diagnosis. Therefore, the voices and experiences of women with TS are largely absent from the extant literature. To fill this gap in the literature, this study used an arts-based, participatory action research method, Photovoice, to explore women’s’ experiences with TS and as community members.

The project was guided by the following research questions:

Q1) How does a diagnosis of Turner Syndrome (TS) impact the lives of women living with TS?

Q2) What role do face-to-face (FTF) and online communities for individuals affected by TS play in supporting, facilitating, or creating barriers to improving women's lives with TS?

Nine women diagnosed with TS living in the US and Canada contributed to this project in two separate groups. Participants took part in an introductory workshop, focus group, and optional interview. All components of the project were conducted online.

Themes and subthemes were identified from the focus group data using Reflexive Thematic Analysis (Braun & Clarke, 2019). There was a single overarching theme, overcoming challenges through strength, resilience, adaptation, and hope with four subthemes: 1) coping and resilience through creativity and self-expression; 2) the significance of community; 3) the need to take care of ourselves and find support physically and mentally; and 4) the importance of TS education and self-advocacy.

This is the first study using Photovoice to investigate the experiences of women diagnosed with TS. This process allowed for an in-depth examination of the daily impact of this diagnosis for community members. Topics that previously have had little to no discussion in the extant literature such as community, resilience, and creativity were highlighted in this project. Moreover, challenges commonly faced by individuals with TS and ways to address these issues (e.g., advocacy and education) were discussed.

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