Parents of boys with sex chromosome aneuploidies: subjective health complaints and personal well-being.
Year: 2016
Type: dissertation
Study design: Observational Study
Abstract: Background: Little is known about the physical and mental health status among parents of boys with SCA. The term sex chromosome aneuploidies (SCA) refers to a condition where children are born with additional sex chromosomes. SCA in boys may be associated with physical, psychological, cognitive, and interpersonal challenges. Boys with SCA are at increased risk of motor- and language developmental delays, learning disabilities, social difficulties and behavioral problems. Objectives and methods: To investigate subjective health complaints and personal well-being (PWB) in a sample of parents (n = 38) to boys with SCA recruited from a database of families from Frambu Resource Center for Rare Disorders and the annual meeting of the National Klinefelter Association in Norway. Parents received envelops with demographic questions and questionnaires that included the Subjective Health Complaints Inventory (SHC) and the Personal Wellbeing Index - Adult (PWI-A). Results: The prevalence of subjective health complaints in the parent sample was high. The parents reported low health satisfaction on the PWI-A, but total PWI-A was high. Mothers in the parent sample reported higher frequencies on subjective health complaints on the SHC compared to fathers, as well as lower health satisfaction on the PWI-A. A negative association between health satisfaction on the PWI-A and the SHC was found, as well as between pseudoneurological complaints on the SHC and the total PWI-A. Conclusion: Despite the high amount of subjective health complaints and low health satisfaction found among parents of boys with SCA, PWB was generally high. The findings support previous research on parents of children with disabilities and chronic disorders. Future studies should compare parents of boys with SCA to parents of children with other disabilities, and investigate differences in functioning among parents of boys with different SCA karyotypes. Information about gender differences and coping among parents of children with SCA might be helpful to relieve burden, and more effort should be put in to help identify parents in need of interventions.
Author: Fredrik Runsjø
Language: English
Subfield: Clinical Psychology
Field: Psychology
Domain: Social Sciences
Open Access status: green
OpenAlex ID: W2514075770