Other Titles
Challenges and Difficulties Faced by Children with Special Healthcare Needs and Their Caregivers [Poster Title]
Abstract
Children and youth with special health care needs (CYSHCN) and children with medical complexity (CMC) encompass a broad spectrum of children with varying medical conditions and health care needs. They use a greater number of resources due to their higher level of specialty care visits, greater emergency department use, and higher rate of hospitalizations compared to children without special health care needs. The purpose of this literature review is to identify the caregivers of CYSHCN and CMC experiences and difficulties related to caring for their high-needs children. A literature search was conducted using the keywords children and youth with special health care needs, children with disabilities, disabled children, children with medical complexity, caregivers of children with special health care needs, caregiver challenges, quality of life of children and youth with special health care needs and lived experiences of children and youth with special health care needs. A total of 23 relevant studies were included from years 2002 to 2021. Findings included challenges and difficulties such as reduced work hours, high out of pocket costs for their child’s medical condition, disrupted sleep, and impaired social engagements. Parents believed the quality of life for CYSHCN and CMC is lower compared to that of non-special health care needs children. However, studies examining quality of life from the perspective of CYSHCN and CMC were limited. Of the studies included in the review, most focused on parent’s perspective
Notes
References:
Ghandour, R.M., Hirai, A.H., Kenney, M.K. (2022). Children and youth with special health care needs: A profile. Pediatrics, 149(7), S1-S17 (supplement). https://doi.org/10.1542/peds.2021-056150D
Kuo, D. Z., Melguizo-Castro, M., Goudie, A. Nick, T. G., Robbins, J. M., and Casey, P. H. (2015). Variation in child health care utilization by medical complexity. Maternal Child Health Journal (19), 40–48. https://doi.org/10.1007/s10995-014-1493-0
Bramlett, M. D., Read, D., Bethell, C., & Blumberg, S. J. (2009). Differentiating subgroups of children with special health care needs by health status and complexity of health care needs. Maternal and Child Health Journal, 13(2), 151–163. https://doi.org/10.1007/s10995-008-0339-z
Gates, L., & Akabas, S. (2012). Meeting the demands of work and responsibilities of caring for a child with asthma: Consequences for caregiver well-being. Journal for Social Service Research, 38(5), 656-671. https://doi.org/10.1080/01488376.2012.709481
Hatzmann, J., Peek, N., Heymans, H., Maurice-Stam, H., & Grootenhuis, M. (2014). Consequences of caring for a child with a chronic disease: Employment and leisure time of parents. Journal of Child Health Care, 18(4), 346–357. https://doi.org/10.1177/1367493513496668
Meltzer, L. J., Boroughs, D. S., & Downes, J. J. (2010). The relationship between home nursing coverage, sleep, and daytime functioning in parents of ventilator-assisted children. Journal of Pediatric Nursing, 25(4), 250–257. https://doi.org/10.1016/j.pedn.2009.01.007
Sigma Membership
Pi Alpha
Type
Poster
Format Type
Text-based Document
Study Design/Type
Literature Review
Research Approach
Other
Keywords:
Health Equity or Social Determinants of Health, Stress and Coping, Clinical Practice, Promoting Clinical Outcomes, Special Health Needs Children, Caregivers, Caregiver Needs
Recommended Citation
Dankanich, Julia, "Challenges and Difficulties Faced by Children with Special Healthcare Needs and their Caregivers" (2025). Biennial Convention (CONV). 50.
https://www.sigmarepository.org/convention/2025/posters_2025/50
Conference Name
48th Biennial Convention
Conference Host
Sigma Theta Tau International
Conference Location
Indianapolis, Indiana, USA
Conference Year
2025
Rights Holder
All rights reserved by the author(s) and/or publisher(s) listed in this item record unless relinquished in whole or part by a rights notation or a Creative Commons License present in this item record. All permission requests should be directed accordingly and not to the Sigma Repository. All submitting authors or publishers have affirmed that when using material in their work where they do not own copyright, they have obtained permission of the copyright holder prior to submission and the rights holder has been acknowledged as necessary.
Review Type
Abstract Review Only: Reviewed by Event Host
Acquisition
Proxy-submission
Date of Issue
2025-12-04
Challenges and Difficulties Faced by Children with Special Healthcare Needs and their Caregivers
Indianapolis, Indiana, USA
Children and youth with special health care needs (CYSHCN) and children with medical complexity (CMC) encompass a broad spectrum of children with varying medical conditions and health care needs. They use a greater number of resources due to their higher level of specialty care visits, greater emergency department use, and higher rate of hospitalizations compared to children without special health care needs. The purpose of this literature review is to identify the caregivers of CYSHCN and CMC experiences and difficulties related to caring for their high-needs children. A literature search was conducted using the keywords children and youth with special health care needs, children with disabilities, disabled children, children with medical complexity, caregivers of children with special health care needs, caregiver challenges, quality of life of children and youth with special health care needs and lived experiences of children and youth with special health care needs. A total of 23 relevant studies were included from years 2002 to 2021. Findings included challenges and difficulties such as reduced work hours, high out of pocket costs for their child’s medical condition, disrupted sleep, and impaired social engagements. Parents believed the quality of life for CYSHCN and CMC is lower compared to that of non-special health care needs children. However, studies examining quality of life from the perspective of CYSHCN and CMC were limited. Of the studies included in the review, most focused on parent’s perspective
Description
Children and youth with special health care needs (CYSHCN) and children with medical complexity (CMC) are a broad spectrum of children with varying medical conditions and health care needs. Studies examining quality of life from the perspective of CYSHCN and CMC are scarce. By illuminating the lived experiences of this group, nurses can promote innovative interventions to increase quality of life, leading to positive clinical outcomes for CYSHCN and their caregivers.