Unmet Respite Needs of Children With Medical Technology Dependence

Sarah A. Sobotka*, Emma Lynch, Michael T. Quinn, Saria S. Awadalla, Rishi K. Agrawal, Monica E. Peek

*Corresponding author for this work

Research output: Contribution to journalArticle

2 Scopus citations

Abstract

Children with medical technology dependency (MTD) require a medical device to compensate for a vital body function and substantial nursing care. As such, they require constant high-level supervision. Respite care provides caregivers with a temporary break, and is associated with reduced stress; however, there are often barriers. The study utilizes mixed methodology with the National Survey of Children with Special Health Care Needs (NS-CSHCN) and semistructured interviews with state-wide care coordinators to understand the gap for respite care services. Fifty-nine percent of parents who needed respite care received none. Parents of older children with MTD were more likely to report respite needs. Care coordinators described that home health shortages created barriers to respite care utilization, and the lack of respite care can lead to hospital readmission. Although respite care is a vital resource to support families of children with MTD, it is infrequently available, which can have severe consequences.

Original languageEnglish (US)
Pages (from-to)1175-1186
Number of pages12
JournalClinical pediatrics
Volume58
Issue number11-12
DOIs
StatePublished - Oct 1 2019

Keywords

  • caregiving
  • children with disabilities
  • children with medical complexity
  • home care
  • respite care

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health

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    Sobotka, S. A., Lynch, E., Quinn, M. T., Awadalla, S. S., Agrawal, R. K., & Peek, M. E. (2019). Unmet Respite Needs of Children With Medical Technology Dependence. Clinical pediatrics, 58(11-12), 1175-1186. https://doi.org/10.1177/0009922819870251