An Online Group Intervention for the Psychological Well-Being of Family Members of People With Dravet Syndrome

Carlo Amos Aldo Cavallini, Laura Smeraldi, Giulia Trentini, Antonino Ganci, Simona Borroni, Vania Zaghi

The study aims to develop an online group psycho-educational intervention model based on the principles of ACT (acceptance commitment therapy) with high accessibility, individualization possibilities, low cost and high adhesion. The participants were 9 (2 M and 7 F), aged between 19 and 40 years (M 27.4; DS 7.93), and were brothers or sisters of people diagnosed with Dravet syndrome. The application of the intervention included 4 phases: the definition of outcomes with the families association that financed the project, a pre-test phase, in which a questionnaire created ad hoc and the test Outcomes Questionnaire 45.2 – (OQ45.2) were administered, and 10 sessions of 1 and a half hours every two weeks, at the conclusion of which the participants carried out the post test. From the results, good effectiveness of the programme in promoting psychological well-being and maintaining adherence to the group of siblings seems to emerge. The descriptive analysis of the results suggests that the online modality may fit closer with the characteristics of support groups for rare diseases, such as Dravet syndrome.

DOI
10.14605/PCC3012403

Keywords
Web-based group psycho-educational intervention, ACT (Acceptance commitment therapy), Siblings, Dravet Syndrome (DS).

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