Chronic conditions and related functional disabilities are highly prevalent among resettled refugees in the United States. There is a need to explore this population's access to appropriate healthcare services in order to identify service disparities and improve interventions. Using a community-based participatory research approach, semi-structured interviews were conducted with key informants to identify healthcare access barriers affecting disabled and chronically ill refugees. Eighteen participants were interviewed, revealing three main barriers: (1) inadequate health insurance, (2) language and communication barriers, and (3) a complex maze of service systems. These barriers were found to operate at systems, provider, and individual levels. Broad-based policy and practice interventions are required to address barriers including: an expanded pool of medical interpreters, peer navigators, innovative health information technologies, and greater collaboration and information-sharing between service systems. Further research is needed to monitor the impact the Affordable Care Act on service access of refugees with disabilities and chronic conditions.
Research on the impact of cultural beliefs specific to autism is very limited, although studies focusing on other developmental disorders suggest that it is influential. The importance of exploring parental beliefs during the process of treatment planning is discussed.
Due to the numerous interventions available for children with autism, parents are faced with challenging decisions regarding treatments from the time of diagnosis and throughout their child’s life. This exploratory qualitative study investigated the reasons behind parents’ decisions about interventions for their child with autism. In-depth interviews were conducted with 23 parents from 18 families making decisions for 19 young children to understand their perspectives on deciding a philosophical approach, choosing a preschool program, and/or deciding on alternative treatments. Children had a diagnosis of pervasive developmental disorder not otherwise specified or autistic disorder and were below the age of 7 years. Parents’ considerations were categorized into the themes of parental, child, and program attributes. Recommendations were made regarding areas to explore with families to provide support as they weigh the numerous options available. Recommendations for policy changes that could improve diagnostic and treatment services for children with autism and their families were discussed.
Improvements in technology have dramatically increased the survival of children with spinal dysraphism. Because this complex condition affects multiple organ systems as well as the psychosocial functioning of the child and family, these children require care from a host of specialists in order to achieve optimum functioning. This article reviews the pathophysiology and discusses the current management of the medical and psychosocial effects of spinal dysraphism. It also briefly discusses strategies for intervention, long-term outcomes, and some controversies regarding care and screening.
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