ESPE Abstracts

Introduction: Parents of girls with Turner syndrome (TS) are coping with various challenges associated with caring for a child with a chronic disease.

Aims: Explore the logic and importance of group support for parents of girls with TS.

Methods: 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 face 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.

Results: Parents of 18 girls, with a median (interquartile range) age of 9 (5.5,12) years old, participated in the group. The distribution of the different TS karyotypes was 10 (56%) with 45X0, 6 (33%) with 45X0/46XX mosaicism, 1 (5.5%) with translocation with an autosome and 1 (5.5%) with Triple X. Regarding the timing of diagnosis, 3 girls (17%) were identified prenatally through amniocentesis, 2 girls (11%) during infancy, 10 girls (56%) in childhood, and 3 girls (17%) during puberty. 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. As a result of the initiation of this support group, a private WhatsApp group was generated, a Facebook group was expanded, and family-initiated group meetings also took place. Following the group sessions, an increased number of families sought a neuropsychological assessment to better comprehend their daughter's cognitive challenges and offer suitable support.

Conclusions: 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. This comprehensive approach significantly enhanced the overall well-being and coping mechanisms of the participants.