Research in developmental disabilities
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The consequences of the Ehlers-Danlos Syndrome hypermobility type (EDS-HT) affect many aspects of daily life. "Living with limitations" is a central theme in the life of patients affected by this heritable disorder of connective tissue. The aim of the present study was to explore the lived experiences of women with EDS-HT concerning diagnosis, influence on daily life and becoming and being a mother. ⋯ This study gives insight in the activities of daily life of persons with EDS-HT. Health care professionals can be of great importance to help patients in (re)organizing their lives according to the available energy and in supporting their choices. They can help defining goals and setting priorities in daily life.
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Children with fetal alcohol spectrum disorders (FASD) and prenatal alcohol exposure (PAE) experience multiple difficulties requiring various interventions. Researchers have called for investigation into service use with respect to clinically recommended interventions. ⋯ This study responds to important research questions regarding the intervention needs of individuals with FASD. It is novel in its exploration of intervention recommendations given to children prenatally exposed to alcohol without an FASD diagnosis (rather than only children with FASD) and in its examination of post-assessment service use patterns specifically in relation to clinical recommendations.
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This study examined the psychometric properties of the Child Adjustment and Parent Efficacy Scale-Developmental Disability (CAPES-DD), a brief inventory for assessing emotional and behavioral problems of children with developmental disabilities aged 2- to 16-years, as well as caregivers' self-efficacy in managing these problems. A sample of 636 parents participated in the study. Children's ages ranged from 2 to 15. ⋯ Psychometric evaluation of the CAPES-DD revealed scales had satisfactory to very good internal consistency, as well as very good convergent and predictive validity. The instrument is to be in the public domain and free for practitioners and researchers to use. Potential uses of the measure and implications for future validation studies are discussed.
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The developmental outcomes and life course trajectories of young children with or at-risk for fetal alcohol spectrum disorders (FASD) can be optimized when individual and family needs are identified early and met with family-centered early intervention (EI) services. However, little is known about access to and quality of EI services with this high-needs population. ⋯ Parents appreciated and endorsed the importance of EI with its provision of individualized, family-centered supports and resources. Examination of the gaps and unmet needs that are common and distinct underscore the importance of an FASD-informed approach to EI. Study findings provide insight into areas for which EI enhancements could be developed in order to tailor supports for the complex needs of this diverse population of children and parents.
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To compare quality of life (QOL) according to ambulatory status and to investigate association with habitual physical activity (HPA) in children with cerebral palsy (CP) aged 5 years. ⋯ In children with CP aged 5 years, HPA was not associated with parent-reported QOL. Gross motor function contributed to QOL domains of feelings about functioning.