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The objective of this study was to examine the quality of life health metrics of parents whose children were diagnosed with Classic Galactosemia and underwent a proactive treatment program. The data analyzed in this study came from the Babble Boot

The objective of this study was to examine the quality of life health metrics of parents whose children were diagnosed with Classic Galactosemia and underwent a proactive treatment program. The data analyzed in this study came from the Babble Boot Camp©, which included one control family and nine treatment families. The Babble Boot Camp© is an innovative intervention program that is implemented via parent training. Child progress and parent quality of life are closely monitored in regular intervals. The purpose of this study was to evaluate if the intervention was successful in terms of child language growth, how the child’s progress affected the parent’s quality of life, and if there were differences in the psychological and physical health of the mothers and fathers. We utilized a variety of questionnaires, specifically the Ages and Stages Questionnaires- 3 (ASQ3) (Squires & Bricker, 2009), Pediatric Quality of Life (PedsQL) Questionnaire (Varni, 1998), Parental Stress Index (PSI-4) (Abidin 2012) and the MacArthur CDI Questionnaire (MBCDI2) (Fenson et al., 2007). The three main findings of this study are: the BBC© treatment protocol showed beneficial gain to the children, the development of the child did affect the parent’s quality of life, and the mother’s physical health was significantly worse than the father’s in terms of health metrics. The significance of this study is to identify preliminary trends in quality of life data of the parents. Clinical implications for the future include investigation of various possible factors driving the improvement of the parent’s quality of life.
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Title
  • Quality of Life and Health Metrics in Young Children at Genetic Risk for Speech and Language Disorder and their Parents: Broad and longitudinal effects of a proactive intervention, the Babble Boot Camp
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Date Created
2020-05
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  • Text
  • Machine-readable links