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Continuing care describes the variety of health, personal, and social services provided over a prolonged period. The need for continuing care is increasing because people are living longer. Many people do not have families or others to care for them. Continuing care is mainly for patients who are disabled, functionally dependent, or suffering from a terminal disease. It is available within institutional settings or in homes. Examples include nursing centers or facilities, assisted living,...
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Intellectual disability (ID) is a neurodevelopmental condition characterized by deficits in intellectual and adaptive functioning that manifest during the developmental period. This condition encompasses challenges in reasoning, memory, problem-solving, and learning, accompanied by impairments in everyday life skills, such as communication, self-care, and social interactions. Intellectual disability affects approximately 1% of the population in the United States, impacting an estimated 5...
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Children with intellectual disability and hospice utilization.

Lisa C Lindley1, Mari Beth Colman2, John T Meadows3

  • 1Assistant Professor, University of Tennessee, College of Nursing, 1200 Volunteer Blvd., Knoxville, TN 37996, (865) 974-0653.

Journal of Hospice and Palliative Nursing : JHPN : the Official Journal of the Hospice and Palliative Nurses Association
|March 7, 2017
PubMed
Summary

Intellectual disability (ID) was linked to less hospice care for children. However, children with ID and other health issues were more likely to receive hospice services.

Keywords:
Medicaidhospice carehospice enrollmenthospice length of stayintellectual disabilitypediatric hospice utilization

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Area of Science:

  • Pediatric Palliative Care
  • Intellectual Disability Research
  • Health Services Research

Background:

  • Over 42,000 children die annually in the US, with reduced survival for those with intellectual disability (ID), motor dysfunction, congenital conditions, and comorbidities.
  • Limited understanding exists regarding hospice care utilization among children with intellectual disability.

Purpose of the Study:

  • To investigate the association between intellectual disability and hospice utilization in children.
  • To examine how motor dysfunction, progressive congenital conditions, and comorbidities modify the relationship between intellectual disability and pediatric hospice use.

Main Methods:

  • Retrospective cohort design utilizing California Medicaid claims data from 2009-2010.
  • Multivariate analysis to assess hospice enrollment and length of stay in relation to intellectual disability and other clinical factors.

Main Results:

  • Intellectual disability showed a negative correlation with hospice enrollment and length of stay.
  • A positive association was observed between having both intellectual disability and comorbidities and hospice enrollment.

Conclusions:

  • Findings suggest disparities in hospice access for children with ID.
  • Clinical implications for hospice and palliative care nurses to improve care for children with ID and their families at end-of-life are highlighted.