Through their eyes: A retrospective mixed-methods study on the experiences and support needs of children growing up with a parent with Huntington’s disease
Journal of Huntington s Disease, vol. 14, pp. 93–102
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. Objective This study aims to offer an in-depth understanding of the multifaceted impact of growing up with a parent with HD, examining the needs for professional guidance on emotional and social aspects, and identifying specific areas where support 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 in HD families. By centering our efforts on the emotional well-being of these children, offering tailored information, involving their social network, providing community-based support, and strengthening parental support systems, we can improve the support required by children in these families.
Authors 7
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Maud Daemen corresponding
Affiliation as printed
Department of Psychiatry and Neuropsychology, Mental Health and Neuroscience Research Institute, Maastricht University, Maastricht, The Netherlands
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Maastricht University · Radboud University Medical Center · Maastricht University Medical Centre
Affiliation as printed
Department of Medical Psychology, Maastricht University Medical Center, Maastricht, The Netherlands
Department of Medical Psychology, Radboud University Medical Center, Nijmegen, The Netherlands
Department of Psychiatry and Neuropsychology, Mental Health and Neuroscience Research Institute, Maastricht University, Maastricht, The Netherlands
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Maastricht University · Maastricht University Medical Centre
Affiliation as printed
Department of Neurology, Mental Health and Neuroscience Research Institute, Maastricht University Medical Center, Maastricht, The Netherlands
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Affiliation as printed
Huntington Expert Center Atlant, Apeldoorn, The Netherlands
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Maastricht University · Maastricht University Medical Centre
Affiliation as printed
Department of Medical Psychology, Maastricht University Medical Center, Maastricht, The Netherlands
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Affiliation as printed
Huntington Expert Center Topaz Overduin, Katwijk, The Netherlands
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Maastricht University · Maastricht University Medical Centre
Affiliation as printed
Department of Neurology, Mental Health and Neuroscience Research Institute, Maastricht University Medical Center, Maastricht, The Netherlands
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