The impact of rare genetic disorders on family functioning
until further notice
Number of pages
SourceMedical Research Archives, 9, 11, (2021), article 2598
Article / Letter to editor
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SW OZ DCC NRP
Medical Research Archives
SubjectAll institutes and research themes of the Radboud University Medical Center; Neuropsychology and rehabilitation psychology; Radboudumc 0: Other Research RIHS: Radboud Institute for Health Sciences; Radboudumc 7: Neurodevelopmental disorders DCMN: Donders Center for Medical Neuroscience; Neuro- en revalidatiepsychologie
The increasing presence of genetic neurodevelopmental disorders (NDDs) results in greater demands for counseling. Many studies focus on the characteristics of patients, but less on family functioning. The aim of this study is to objectify parental stress and to study its relationship with child characteristics and environmental factors across several syndromes. 56 individuals with NDD participated: 24 with Kleefstra Syndrome, 13 with Koolen-de Vries Syndrome, and 19 with other rare (mono) genetic disorders. Parents were asked to complete the General Functioning subscale of the Family Assessment Device (FAD-GF), the Child Behavioral Checklist, and a questionnaire about demographic parental data. 25.5% of the families scored above the cut-off for pathological stress (>2.17). The mean FAD-GF score was 1.84. There was no significant difference between mean FAD-score of the subgroups (p=0,70). (Para)medical counselors should address this high amount of parental stress during counseling and consider these genetic syndromes as complex chronical illnesses.
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