Comparison of Child and Family Health Outcomes in Families with Children with Special Health Care Needs Cared for in Home Care, Long-Term Care, and Medical Day Care Settings

2.50
Hdl Handle:
http://hdl.handle.net/10755/603244
Category:
Full-text
Format:
Text-based Document
Type:
Presentation
Title:
Comparison of Child and Family Health Outcomes in Families with Children with Special Health Care Needs Cared for in Home Care, Long-Term Care, and Medical Day Care Settings
Other Titles:
Discussions of Quality of Life in Children with Healthcare Issues [Session]
Author(s):
Caicedo, Carmen
Lead Author STTI Affiliation:
Pi Alpha
Author Details:
Carmen Caicedo, RN, ccaicedo@fiu.edu
Abstract:
Session presented on Saturday, November 7, 2015: There are over 11 million children with special health care needs (CSHCN) in the U.S. resulting from improved survival rates for children with preterm births, congenital anomalies, disease, or injury. Advances in medical technology have enabled children who require medically complex technology-dependent care to survive. Today, care options available for families of these CSHCN remain limited due to lack of available health care, school and community services. Currently many families care for their medically complex technology-dependent children at home, a situation that holds potential consequences for the family. Given the important role of the parents in their child’s life, greater efforts are needed to help support them and their well-being. This study provides a comparison of child and parent health outcomes across three different care settings over a five month period. The purpose of this study was to examine and compare child and parent or guardian physical and mental health outcomes in families with children with special health care needs who have medically complex technology-dependent needs in home care, long-term care, and medical day care settings. Methods: Using repeated measures, data were collected over five months from 84 dyads (parent/guardian, medically complex technology-dependent child) recruited from local pediatric primary and specialty physician practices; medical day care centers called prescribed pediatric extended care centers (P-PEC) in Florida; and long-term/residential care facilities (LTC) in South Florida using Pediatric Quality of Life Inventory Generic Core Module 4.0 and Family Impact Module. Data analysis included Chi Square, RM-ANCOVA. Results: There were no significant differences in child physical health, mental health, and functioning outcomes by care setting. Age, race/ethnicity, and level of condition severity were significantly different across settings. Most severely disabled children were in home care; most moderately disabled in medical day care; most children in a vegetative state were in LTC; however parents perceived child’s health in each setting as good to excellent. Children in P-PEC had the highest parent reported physical and mental health functioning and children in the LTC settings had the lowest parent reported physical health and mental functioning. Parents/guardians from home care reported the poorest physical health including being tired during the day, too tired to do the things they like to do, feeling physically weak, or feeling sick and had cognitive difficulties, difficulties with worry, communication, and daily activities. Parents/guardians from LTC reported the best physical health with time and energy for a social life and employment. Conclusions: Trends in health care policy indicate a movement away from LTC care to care in the family home where data indicate these parents/guardians are already physically, mentally and functionally challenged. These challenges need to be targeted with resources to sustain specific community-based support structures to help parent/guardian caregivers of children with medically complex technology-dependent needs.
Keywords:
home care; medical day care; prescribed pediatric extended care
Repository Posting Date:
21-Mar-2016
Date of Publication:
21-Mar-2016
Other Identifiers:
CONV15A26
Conference Date:
2015
Conference Name:
43rd Biennial Convention
Conference Host:
Sigma Theta Tau International, the Honor Society of Nursing
Conference Location:
Las Vegas, Nevada, USA
Description:
43rd Biennial Convention 2015 Theme: Serve Locally, Transform Regionally, Lead Globally.`

Full metadata record

DC FieldValue Language
dc.language.isoen_USen
dc.type.categoryFull-texten
dc.formatText-based Documenten
dc.typePresentationen
dc.titleComparison of Child and Family Health Outcomes in Families with Children with Special Health Care Needs Cared for in Home Care, Long-Term Care, and Medical Day Care Settingsen
dc.title.alternativeDiscussions of Quality of Life in Children with Healthcare Issues [Session]en
dc.contributor.authorCaicedo, Carmenen
dc.contributor.departmentPi Alphaen
dc.author.detailsCarmen Caicedo, RN, ccaicedo@fiu.eduen
dc.identifier.urihttp://hdl.handle.net/10755/603244en
dc.description.abstractSession presented on Saturday, November 7, 2015: There are over 11 million children with special health care needs (CSHCN) in the U.S. resulting from improved survival rates for children with preterm births, congenital anomalies, disease, or injury. Advances in medical technology have enabled children who require medically complex technology-dependent care to survive. Today, care options available for families of these CSHCN remain limited due to lack of available health care, school and community services. Currently many families care for their medically complex technology-dependent children at home, a situation that holds potential consequences for the family. Given the important role of the parents in their child’s life, greater efforts are needed to help support them and their well-being. This study provides a comparison of child and parent health outcomes across three different care settings over a five month period. The purpose of this study was to examine and compare child and parent or guardian physical and mental health outcomes in families with children with special health care needs who have medically complex technology-dependent needs in home care, long-term care, and medical day care settings. Methods: Using repeated measures, data were collected over five months from 84 dyads (parent/guardian, medically complex technology-dependent child) recruited from local pediatric primary and specialty physician practices; medical day care centers called prescribed pediatric extended care centers (P-PEC) in Florida; and long-term/residential care facilities (LTC) in South Florida using Pediatric Quality of Life Inventory Generic Core Module 4.0 and Family Impact Module. Data analysis included Chi Square, RM-ANCOVA. Results: There were no significant differences in child physical health, mental health, and functioning outcomes by care setting. Age, race/ethnicity, and level of condition severity were significantly different across settings. Most severely disabled children were in home care; most moderately disabled in medical day care; most children in a vegetative state were in LTC; however parents perceived child’s health in each setting as good to excellent. Children in P-PEC had the highest parent reported physical and mental health functioning and children in the LTC settings had the lowest parent reported physical health and mental functioning. Parents/guardians from home care reported the poorest physical health including being tired during the day, too tired to do the things they like to do, feeling physically weak, or feeling sick and had cognitive difficulties, difficulties with worry, communication, and daily activities. Parents/guardians from LTC reported the best physical health with time and energy for a social life and employment. Conclusions: Trends in health care policy indicate a movement away from LTC care to care in the family home where data indicate these parents/guardians are already physically, mentally and functionally challenged. These challenges need to be targeted with resources to sustain specific community-based support structures to help parent/guardian caregivers of children with medically complex technology-dependent needs.en
dc.subjecthome careen
dc.subjectmedical day careen
dc.subjectprescribed pediatric extended careen
dc.date.available2016-03-21T16:46:24Zen
dc.date.issued2016-03-21en
dc.date.accessioned2016-03-21T16:46:24Zen
dc.conference.date2015en
dc.conference.name43rd Biennial Conventionen
dc.conference.hostSigma Theta Tau International, the Honor Society of Nursingen
dc.conference.locationLas Vegas, Nevada, USAen
dc.description43rd Biennial Convention 2015 Theme: Serve Locally, Transform Regionally, Lead Globally.`en
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