Disclosure in girls with Turner Syndrome: Version 1
Research type
Research Study
Full title
A qualitative study exploring various aspects of disclosure in girls with Turner Syndrome: disclosure of the diagnosis to girls by their parents/professionals and girls experience of disclosing their condition to others.
IRAS ID
263560
Contact name
Rory O'Connor
Contact email
Duration of Study in the UK
1 years, 1 months, 1 days
Research summary
Background
Turner syndrome (TS) is a genetic condition that affects females. Girls with TS are usually shorter than average and have problems with fertility. Although most girls are diagnosed by adolescence, previous researchers unexpectedly found that 45/322 participants they surveyed were unaware of their diagnosis (Gravholt et al., 2003). Further research suggested parents may withhold information from their daughters about the condition, particularly around the infertility component (Sutton et al., 2006). However, current literature around TS and disclosure is limited and hasn't investigated the impact of having TS on girls and their families.Aims
The primary aim of this study is to explore the nature of disclosure in girls with TS; disclosure of the diagnosis to girls by their parents/professionals and girls experience of disclosing their condition to others. The secondary aim is to explore whether TS has had an impact on girls and their family’s lives.Methods
We aim to recruit between 6-8 girls with TS aged between 12-25 and at least one of their parents/guardians, from two designated TS clinics in Glasgow.Design
This study shall be qualitative in nature. Semi structured interviews will be conducted with both the girls and their parents. All interviews will be audio taped and transcribed verbatim. Transcripts will be coded using a standard qualitative research method - Interoceptive phenomenological analysis (IPA). The aim of IPA is to explore in detail the processes through which participants make sense of their own experiences, focusing on their own understanding and views.We hope this research project could inform the development of recommendations for parents and health care professionals about factors that facilitate disclosure in girls with TS. It may also highlight potential barriers to parents disclosing aspects of the condition to their children and provide further insight into how TS affects the lives of girls and their families.
REC name
West of Scotland REC 4
REC reference
19/WS/0132
Date of REC Opinion
25 Sep 2019
REC opinion
Further Information Favourable Opinion