Sa Same men l leggen w we d de p puzzel (Together were putting - PowerPoint PPT Presentation

Sa Same men l leggen w we d de p puzzel (Together we’re putting the pieces together) A A ps psychoeducational to tool to to fa facilitate an and su suppor ort t co communica cation ar around 22q 22q11 in 11 in th the fa family Prof. Ann Swillen, ann.swillen@uzleuven.be Department of Human Genetics KU Leuven, Belgium Lab for Behaviour and Neurodevelopment https://www.kuleuven.be/labbehaviourandneurodevelopment

Ce Centre f for or Hu Human Ge Genetic ics/ / De Depa partme tment of of Hu Human Ge Genetic ics, Univer Un ersity Ho Hospital Gas Gasthuisb isberg KU KU Leuven • Persons with genetic syndromes /developmental disabilities (MCA/ID); « rare diseases » • Multidisciplinary team • Holistic and integrated approach & focus: • Child and family • Medical and developmental/ behavioural concerns 22q11 DS group: N=450 (6wks-73yrs)

Multidisciplinary care (the Leuven model) • Holistic focus • Early assessment of patient needs & psycho-education • Multidisciplinary consultations & meetings • Coordination and continuation of personalized care • Anticipatory guidance and longitudinal follow-up

In families affected by genetic conditions e.g. 22q11 deletion Many parents struggle to know and syndrome (22q11 DS), parents face many challenges: the to decide when, how and what to tell. impact of the condition (for their child) in terms of outcome (medical and developmental), the necessary treatments, but also the need of explaining the diagnosis to their children (affected child and siblings).

Experiences…. • Children and parents like Q&A/pieces of the puzzle • Can be used in a flexible way • Can be adapted to developmental stage and level of all children • Clear and visual information • More (open) communication • Attention goes to all family members

Are you interested ? Mail: ann.swillen@uzleuven.be https://www.kuleuven.be/labbehaviourandneurodevelopment

THANK YOU ! ann.swillen@uzleuven.be ann.swillen@kuleuven.be

10 group sessions for teenagers (12-16yrs) to improve communication and social interaction skills, and to diminish social anxiety. Manual/draaiboek (2020) ann.swillen@uzleuven.be ans.vandensande@uzleuven.be Thanks to financial support:

Partnership & team spirit between parents, clinicians and researchers All members and co-workers of multidisciplinary 22q11 DS team/lab @ ………