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- W2204793888 abstract "It is essential for parents and caregivers to balance the caregiving demands of children with chronic conditions with the needs of the family. PARENTS AND FAMILIES are challenged with meeting the caregiving demands of their children with rare chronic conditions due to genetic disorders. Managing the child's chronic condition at home creates overwhelming caregiving demands and stress in parents and families (Christian, 1993, 1998, 2003, 2010). With advances in technology, children with chronic conditions are surviving longer and acute, lifethreatening conditions have become chronic (Perrin, Bloom, & Gortmaker, 2007). Yet providing home care for medicallyfragile children and children with chronic conditions has a negative impact on parents' psychological health and family functioning (Leonard, Brust, & Nelson, 1993; Patterson, Leonard,&Titus, 1993).Key predictors of health andwell-being among parents who provide care for their children with chronic conditions and physical disabilities are caregiving demands, child behavior, and family functioning (Raina, O'Donnell, Rosenbaum, et al., 2005). When compared to parents of healthy children, parents and caregivers of children with chronic conditions and physical disabilities have more emotional and physical health problems related to the demands of caregiving at home (Murphy, Christian, Caplin, & Young, 2007). Thus, it is essential for parents and families to balance the caregiving demands of their children with chronic conditions with the individual needs of each family member to maintain family functioning and quality of life (Christian, 1993, 1998, 2010). Although advances in health care technology, genetics and genomics have expanded knowledge about complex genetic-" @default.
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- W2204793888 date "2016-01-01" @default.
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- W2204793888 title "Translational Research – Caregiving Challenges for Parents of Children With Rare Chronic Conditions Due to Genetic Disorders" @default.
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- W2204793888 doi "https://doi.org/10.1016/j.pedn.2015.11.015" @default.
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