Aunting as a Call to Public Intellectualism: The Roles of (In)Visibility in Health Communication Research and Service

Area of Science:

• Social Sciences
• Psychology
• Genetics

Background:

• Sturge-Weber syndrome is a rare genetic condition with visible physical manifestations.
• The experiences of fathers of children with rare genetic conditions are often under-researched.
• The concept of (in)visibility can impact individuals' coping mechanisms and support-seeking behaviors.

Purpose of the Study:

• To identify and explore the theme of (in)visibility in the lives of fathers of children with Sturge-Weber syndrome.
• To examine the interplay between the physical visibility of the condition and societal awareness.
• To analyze the role of (in)visibility in fathers' coping and support-seeking strategies.
• To reflect on the researcher's own experiences with (in)visibility during the research process.

Main Methods:

• Qualitative research approach.
• Thematic analysis of research experiences.
• Autoethnographic reflection.

Main Results:

• Fathers experience a tension between the physical visibility of Sturge-Weber syndrome and a lack of public awareness.
• (In)visibility significantly influences fathers' coping strategies and their engagement with support systems.
• The researcher's personal and professional roles were shaped by experiences of (in)visibility.

Conclusions:

• The concept of (in)visibility is a critical lens for understanding the multifaceted experiences of fathers of children with Sturge-Weber syndrome.
• Addressing the lack of awareness surrounding rare genetic conditions is crucial for supporting affected families.
• Further research is needed to explore the impact of (in)visibility on marginalized groups in healthcare and research settings.