H016 Voices of resilience: a retrospective mixed-methods study on the experiences and support needs of children growing up with a parent with Huntington’s disease
Year: 2024
Type: conference-abstract
Abstract: Background Growing up with a parent with Huntington’s disease (HD) profoundly impacts children. However, this impact and children’s needs are often misunderstood, even by professional services. Even when resources are available, children often feel that their needs are unmet, raising concerns about the adequacy of available guidance and support. Aims This study aims to offer an in-depth understanding of the multifaceted impact of growing up with a parent with HD, examining the needs of professional guidance on emotional and social aspects, and pinpointing the specific areas of support that can be improved to better aid them. Methods This retrospective study utilized an exploratory sequential mixed methods design, combining qualitative focus groups (n=13) and a quantitative survey (n=23). Qualitative data were analyzed using an inductive thematic analysis with a descriptive phenomenological approach. Quantitative data were analyzed using descriptive statistics. Results The impact of HD on children extends across various domains, affecting self-development, social interactions, and family dynamics. Support received at home varied, with limited access to professional help. Support needs primarily revolved around emotional support and access to comprehensive information. Key support providers, such as parents, peers, mentors, healthcare providers and coaches with expertise in HD, play crucial roles in addressing these needs. Conclusions The study underscores challenges faced by children with a parent with HD. By centering our efforts on the emotional well-being on these children, actively informing them, involving their social network, and strengthening parental support systems, we can improve the support required by children in these families.
Authors: Maud Daemen, Annelien Duits, Lucienne van der Meer, Ruben Andriessen, Ruth Veenhuizen, Renske Wassenberg, Tanja Peeters, Lia de Jager, Mayke Oosterloo
Language: English
Topic: Family Support in Illness
Subfield: Sociology and Political Science
Field: Social Sciences
Domain: Social Sciences
Open Access status: gold
OpenAlex ID: W4402374858