Social support experiences when growing up with a parent with Huntington’s disease

BACKGROUND: Social support is a strong protector factor against the many negative effects stress and adversity in childhood can have on short- and long-term health. However, for young people who are exposed to adversity because their parent suffers from severe neurodegenerative disease, such as Huntington’s disease (HD), support from close caregiving relationships can be compromised. This study aimed to investigate what current and past experiences young people who grow up with a parent with HD have with social support outside the parent–child context. METHODS: A total of 36 semi-structured qualitative interviews with individuals who had current and past experiences growing up with a parent with HD were analysed using thematic analysis. FINDINGS: Relationships were experienced as supportive when they provided a sense of love, care, or belonging; when they provided coping skills; and when they reduced or alleviated stressors at home. Barriers to receiving and accepting support included their parent’s and others’ lack of acknowledgement and understanding about their situation and the young people’s own need to protect themselves or their family from support they feared could cause harm. CONCLUSION: Our findings highlight the many important roles persons other than caregivers can have in helping young people who grow up with the distress and adversity of having a parent with a severe disease, such as HD. The findings suggest that by sustaining positive and adaptive emotions and/ or changing distressing emotions, social support help and can compensate for a lack of support in their caregiving relationships. In order for others to be experienced as supportive, the many barriers this vulnerable group may encounter must be addressed and overcome. Most importantly, support providers must understand how HD affects young people.