Self-Reported and Observed Caregiving in Offspring of Parents with Huntington’s Disease: Characteristics and Associations with Parent-Child Relationship

Abstract

Objective: This study examined Huntington’s disease in the context of self-reported and observed caregiving behaviors between offspring and their HD-affected parents. Method: Fifty-six offspring of parents with Huntington’s disease (ages 10 to 38 years old) reported and were evaluated for caretaking behaviors and stress related to caregiving. Results: Caregiving behaviors differed by offspring age and sex. Females and offspring from 10-17 years old reported more caregiving actions and consequences than males and offspring from 18-38 years old. Offspring who reported higher caregiving stress were observed to have a lower relationship quality with their HD-affected parent. Discussion: These findings indicate a need for further research on identifying and developing interventions for family members of HD patients, specifically adolescent female offspring.