H019 Children with parents affected by Huntington’s disease: recommendations for healthcare and support providers

<h3>Background</h3> Between 2018 and 2023, a research initiative in Norway looked into the experiences of children who grow up with parents affected by Huntington’s disease (HD). The project resulted in five qualitative studies [1;2;3;4;5], highlighting the risk for adverse childhood experiences and the ways caregiver support, or lack of support, impact coping and adjustment. Additionally, the research explored dilemmas that influence communication within affected families and the critical role of external support providers in fostering resilience and well-being for children and their parents with and without HD. Together the findings emphasize the necessity of bolstering close and broad social support networks to promote coping and adjustment among children with parents with HD. <h3>Aims</h3> Develop an easily accessible digital resource to guide health care and other support providers on how to understand and support families with children affected by HD in Norway. <h3>Methods</h3> A work group from the Centre of Rare Disorders, Oslo University Hospital, collaboratively synthesized research findings and clinical expertise. Recommendations were launched online December 2023. Outcome: The online digital recommendations offer a practical and user-friendly guide on key areas of potential needs for support provision [6]. <h3>Conclusions</h3> Integrating the guidelines into supportive practice for families affected by HD can enhance local healthcare and support providers ability to understand and address the multifaceted and complex needs of affected families, potentially leading to improved outcomes for both children and their caregivers. <h3>References</h3> Kjoelaas S, Tillerås KH, Feragen KB. The ripple effect: A qualitative overview of challenges when growing up in families affected by Huntington’s disease. <i>Journal of Huntingtons Disease</i>. 2020;<b>9</b>:129-41. doi.org/10.3233/jhd-190377. Tillerås, KH, Kjoelaas S, Dramstad E, Feragen KB, von der Lippe C. Psychological reactions to predictive genetic testing for Huntington’s disease: A qualitative study. <i>Journal of Genetic Counseling</i>. 2020: <b>29</b>; 1093-1105. doi.org/10.1002/jgc4.1245 Kjoelaas S, Jensen TK, Feragen KB. ‘I knew it wasn’t normal, I just didn’t know what to do about it’: adversity and caregiver support when growing up in a family with Huntington’s disease. <i>Psychology &amp; Health</i>. 2022;<b>37</b>:211-29. doi.org/10.1080/08870446.2021.1907387 Kjoelaas S, Jensen TK, Feragen KB. Dilemmas when talking about Huntington’s disease: A qualitative study of offspring and caregiver experiences in Norway. <i>Journal of Genetic Counseling</i>. 2022;<b>31</b>:1349-62. doi.org/10.1002/jgc4.1610 Kjoelaas S, Feragen KB, Jensen TK. Social support experiences when growing up with a parent with Huntington’s disease. <i>Health Psychology and Behavioral Medicine</i>. 2022;<b>10</b>:655-75. doi.org/10.1080/21642850.2022.2104286 Children in families affected by Huntington’s disease: Recommendations to health care and support providers (2023). https://epage.byraservice.no/epage/hso/2023/ous/hs/II/#zoom=true