Document Type
Dissertation
Degree
Doctor of Philosophy (PhD)
Major/Program
Nursing
First Advisor's Name
Carmen Caicedo
First Advisor's Committee Title
Committee Chair
Second Advisor's Name
Dorothy Brooten
Second Advisor's Committee Title
Committee Member
Third Advisor's Name
Jean Hannan
Third Advisor's Committee Title
Committee Member
Fourth Advisor's Name
Timothy Page
Fourth Advisor's Committee Title
Committee Member
Keywords
children and youth with special health care needs, children with special health care needs, special health care needs, children with medical complexity, caregiver, health care transition, pediatric health care, adult health care
Date of Defense
6-30-2023
Abstract
Ninety percent of children and youth with special health care needs (CYSHCN) are surviving childhood and living into adulthood thanks to the many technological advancements that have been made over the last few decades. As a result, there is now a need for the care of CYSHCN to be managed by adult providers. Every year one million CYSHCN transition from pediatric health care to adult health care. Often, these youth are not prepared to transition to an adult health care model and this can lead to a delay or discontinuation of services. This can be detrimental to their health outcomes.
The experiences of CYSHCN (n=3) and parents of CYSHCN (n=3) were explored using a phenomenological study design. Inclusion criteria for CYSHCN included being 12-22 years old, having a self-reported special health care need (SHCN), and the ability to understand and speak English. Inclusion criteria for parents included being the primary caregiver to a child or youth with special health care needs, and the ability to understand and speak English. Demographic data were collected and the STARx-A and STARx-P questionnaires were used to inquire about their health care transition (HCT) specific experiences. A semi-structured interview was also conducted with each participant. Five themes were extracted from the interview narratives: (1) transfer of care, (2) ability to live independently, (3) provider’s lack of knowledge about disease/condition (4) lack of HCT discussion/resources (5) frustration.
Participants described their experience around HCT as lacking; discussions were rarely had about what should be expected as CYSHCN got closer to adulthood. Additionally, resources were rarely provided or suggested. Barriers perceived by participants included not feeling heard by providers and adult providers not understanding the needs of CYSHCN with child-onset diseases/conditions. Participants reported that there were virtually no resources offered to help them navigate HCT.
The study concluded that nurses should incorporate HCT into their discussions with CYSHCN and their parents/caregivers as early as possible to improve the entire HCT process from beginning to end. Starting HCT early allows for continuity of care, so that care for CYSHN is uninterrupted.
Identifier
FIDC011220
Recommended Citation
Colas, Francine, "The Lived Experience of Children and Youth with Special Health Care Needs and Their Caregivers During Health Care Transitions" (2023). FIU Electronic Theses and Dissertations. 5345.
https://digitalcommons.fiu.edu/etd/5345
Included in
Disability Studies Commons, Family Medicine Commons, Health Policy Commons, Maternal and Child Health Commons, Maternal, Child Health and Neonatal Nursing Commons, Pediatric Nursing Commons, Pediatrics Commons, Primary Care Commons, Public Health and Community Nursing Commons, Public Health Education and Promotion Commons
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