Disabil Health J
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Comparative Study
Youth and parents' experiences of a new inter-agency transition model for spina bifida compared to youth who did not take part in the model.
Young adults with spina bifida are underserved in health care and are at risk as they transition to adult health care. A pediatric rehabilitation hospital and an adult community health center partnered to help address this gap. Although some research has explored general transition experiences of youth with disabilities, little is known about their experiences in a transition model that involves an inter-agency partnership, continuous, age-appropriate, and client-centered care. ⋯ Our findings show the new transition model for youth with spina bifida can help enhance participants' transition experiences and preparation for adulthood. However, the model needs further development to address the varied abilities and support needs of youth with spina bifida.
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Middle-aged and older African American women experience disproportionate rates of functional limitations and disability from osteoarthritis (OA) compared to other racial ethnic groups; however, little is known about what factors contribute to this disparity within African American women. ⋯ Biological, intra-individual, and extra-individual factors are related to disablement outcomes in this sample of African American women, which is consistent with theory suggesting the need for treatment coupled with environmental modifications. This study can inform the development of future bio-behavioral interventions.
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Despite concerns raised in the literature on the adverse pregnancy outcomes of women with physical disabilities, there is little information about unmet needs of women with physical disabilities during pregnancy and childbirth. ⋯ This study sheds light on the unmet needs and barriers to care of women with mobility disabilities during pregnancy and childbirth. The study findings highlight the need for policy and practice recommendations for perinatal care of women with mobility disabilities.
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Little is known about health care experiences among people with and without disabilities. ⋯ Both persons with and without disabilities experienced challenges in obtaining high quality health care. However, persons with disabilities experienced specific challenges often related to their type of disability. Participants stressed the need for improving health care coordination and the importance of self-advocacy.
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There is currently little consensus on how the severity of a child's autism spectrum disorder (ASD) should be measured, and yet despite the lack of a standardized definition, parents were readily able to answer a question asking them to describe the severity of his/her child's ASD in a national survey. ⋯ A parent's conceptualization of their child's ASD severity may vary more as a function of the impact of the child's condition on the family and less as a function of the symptoms exhibited by the child or the impact directly felt by the child.