Childhood trauma and psychological distress during adulthood in children from Huntington's disease families

When we think of a family affected by Huntington's disease, we often focus on the affected person or the primary caregiver. Yet, we rarely imagine the point of view of children who, even when they are not aware that the disease is present in their family, suffer and absorb the consequences. 

It is with this idea that between 2021 and 2022, the testimonies of 38 young adults who experienced the disease of a parent during their growth were collected. The aim was to understand if, and to what extent, they had experienced adverse or traumatic life experiences in childhood and to investigate the impact of these experiences on their current psychological well-being. To do this, two widely recognized tools in the clinical and research fields were used: the Childhood Trauma Questionnaire - Short Form (CTQ-SF), which measures the presence of experiences of emotional, physical and sexual abuse, emotional and physical neglect, also providing an overall score of the adverse experiences experienced by each individual; and the Symptom Checklist-90 Revised (SCL-90R), which captures any symptoms of psychological distress present at the time of completion, also providing an overall score.

The data that emerged showed that children raised in families with Huntington's disease are more exposed to traumatic experiences during childhood, in particular differences emerge with regards to experiences of abuse and emotional and physical neglect. 

Furthermore, as adults they are more likely to experience psychological distress and feelings of sadness and loss, as well as a tendency towards social isolation and a feeling of estrangement from the context in which they live. Finally, the study showed that exposure to certain types of experiences is able to predict greater psychological distress in adulthood.

"Our study demonstrates the existence of an environmental stressor that adds to the biological causes of the disease and can seriously compromise the quality of life,” says Prof. Ferdinando Squitieri, Scientific Director of the LIRH Foundation, Head of the Huntington and Rare Diseases Unit at the IRCCS Casa Sollievo della Sofferenza, who adds: “Even those who do not inherit the disease can share traumatic experiences linked to relational stress due to the changes induced by the disease and be affected by them during their growth and development.”

Although exploratory, the study clearly highlights that children who grow up in families with Huntington's disease deeply perceive the changes that occur in the family, experience its instability and bear the signs, often invisible to external eyes, which then become visible in adulthood in terms of long-term emotional suffering. This is why it becomes essential to "make the invisible visible" and recognize that the key to understanding Huntington's disease must once again be familiar, with the foresight to include the experiences of the youngest. Faced with this scenario, it becomes urgent to expand prevention, information and support strategies for young people and families. Only in this way will we be able to break the silence that surrounds their experiences, protect their well-being and build a better quality of life for the entire family unit.

“It is also for these reasons that we must continue to give voice to Huntington’s, which is still not talked about enough – says Barbara D’Alessio, The May HD awareness raising campaign 'I give you my word'  had this objective and must increasingly reach children and young adults, the most fragile part of an already fragile, although very resilient, population”.

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