Quality of Life Dilemmas in Pediatric Patients with Epilepsy Residing in Long-Term Care Facilities

Abstract

Children with chronic care or complex medical needs, such as epilepsy, depend on advocates to ensure their safety and well-being, a role typically filled by parents or extended family. Close participation to provide vital history and details is quintessential to help guide appropriate management decisions to ensure optimal neurodevelopmental outcome. However, when these vulnerable children are placed in the foster care system, their need for an advocate becomes even more paramount. Unfortunately, this can be lacking and can lead to a breakdown in their medical care. Their complex medical conditions often can be intimidating to most potential foster families and may result in placement in long-term care facilities. This, in turn, presents additional obstacles that can hinder optimal care such as lack of consistent, dedicated caretakers. This void not only impacts their outcome and medical care but also leads to excessive use of limited healthcare resources as well as unwanted adverse reactions that can be prevented if a reliable source of history is available. As a result, there is a need for dedicated resources to help provide devoted advocates for these vulnerable children.

Keywords

children - epilepsy - long-term care facilities - quality of life

Publication History

Received: 30 January 2020

Accepted: 11 June 2020

Article published online:
22 July 2020

• References

• 1 Baston J. Healthcare decisions: a review of children's involvement. Paediatr Nurs 2008; 20 (03) 24-26
• 2 Turney K, Wildeman C. Mental and physical health of children in foster care. Pediatrics 2016; 138 (05) e20161118
• 3 U.S. Department of Health and Human Services. Administration for Children and Families, Administration on Children, Youth and Families, Children's Bureau, Preliminary Estimates for FY 2016 as of Oct 20, 2017(24). Available at: www.acf.hhs.gov/cb . Accessed June 30, 2020
• 4 Classified Employee Turnover for Fiscal Year 2015. Available at: http://www.sao.texas.gov/Reports/Main/16-702.pdf . Accessed June 30, 2020
• 5 Aaberg KM, Bakken IJ, Lossius MI. , et al. Comorbidity and childhood epilepsy: a nationwide registry study. Pediatrics 2016; 138 (03) e20160921