Group support for parents of girls with Turner Syndrome - A pilot study.

Abstract

Parents of girls with Turner syndrome (TS) are coping with various challenges associated with caring for a child with a genetic disorder. We aimed to explore the importance of group support for parents of girls with TS in a small pilot study. Group support sessions for parents of girls with TS were divided into meetings regarding psychological aspects, medical aspects, and social aspects. Questionnaires about how the families perceive TS and what obstacles they are facing were given before and after the group support through the Mentimeter application. Questionnaires were given at the end of the group sessions to assess efficacy and satisfaction. Parents of 18 girls, with a median (interquartile range) age of 9 (5.5,12) years old, participated in the group, 56% with 45X karyotype. On average 72% of the participants said that the sessions much/very much contributed, and 10% said that the sessions hardly contributed (p<0.05). At the end of the sessions, parents shared that they felt more confident, less isolated, and gained more knowledge regarding TS, and a community-based sharing process was initiated. At the end of the support group, fifteen (83%) versus 3 (17%) said they would like to continue the meetings of the support group (p= 0.0001). A support group specifically designed for parents of girls diagnosed with TS enhanced cooperation and empathy through diminishing feelings of isolation, offering crucial information, and fostering a secure environment for sharing and support.