2.50
Hdl Handle:
http://hdl.handle.net/10755/157335
Type:
Presentation
Title:
FACTORS DELAYING PRIMARY CARE HEALTH TRANSITIONS FOR YOUTH WITH DISABILITIES
Abstract:
FACTORS DELAYING PRIMARY CARE HEALTH TRANSITIONS FOR YOUTH WITH DISABILITIES
Conference Sponsor:Western Institute of Nursing
Conference Year:2010
Author:Rehm, Roberta, PhD, RN
P.I. Institution Name:UCSF
Title:Associate Professor
Contact Address:2 Koret Way, Box 0606, San Francisco, CA, 94116, USA
Co-Authors:Lucille T. Fisher
PURPOSES/AIMS:
Part of a larger, ongoing study of planning for the transition to adulthood for youth age 14-26, this analysis focused on 57 youth with concurrent physical and developmental chronic conditions and disabilities, their parents, and 21 health care providers. The aim of this analysis was to examine the decision-making processes of parents and HCPs around when and how to transition youth from pediatric to adult primary care.
RATIONALE/CONCEPTUAL BASIS/BACKGROUND:
Youth with physical and developmental disabilities are at high risk for health complications related to their chronic conditions and will need close monitoring, and often ongoing treatment, as they reach adulthood and leave pediatric practices. Prior research has shown that youth with chronic conditions have frequent delays in seeking follow-up care, suffer breaks in insurance coverage, and may have trouble negotiating complex systems of care during the health care transition.
METHODS:
This was an ethnographic, interpretive field study, based on a Symbolic Interaction framework. Data was collected in 2 home visits that included parent interviews, youth observations and interviews (when verbal), and interviews with health care providers at their site of practice. Analysis included coding using Atlas Ti for data management, construction of family summaries, field notes, memos, and discussion leading to consensus among research team members.
RESULTS:
Youth with health and developmental disabilities fell across a wide spectrum of abilities and ongoing health challenges. All youth were currently receiving health care, most in pediatric practices. Eight youth had insurance through Kaiser, which automatically transfers youth at age 18. Although 27 other youth were at least 18 years of age, only 11 had transitioned to adult-oriented primary health care practices. Parents felt little pressure to identify adult providers for the youth because pediatricians continued seeing youth as long as their insurance would cover them or until they developed health concerns of adulthood, usually anticipated to be at least the mid-20s. Health care providers and parents identified a variety of factors that delayed the transition to adult practices. These included: constraints inherent in adult practice, including insufficient numbers of primary providers, lack of training to care for youth with developmental or congenital chronic conditions, and expectations of adult practitioners to work with autonomous individuals, rather than family constellations; unwillingness to accept Medicaid; lack of reimbursement for time consuming care coordination; difficulties in sharing information about patients at the transition; strong bonds between pediatricians, youth, and parents; and few supportive community resources for adults as compared to children.
IMPLICATIONS:
A culture shift is needed to facilitate health care transitions for youth with chronic conditions and disabilities. Youth and families must learn to negotiate adult systems of care, and adult-oriented practices must adapt to accommodate the special needs of youth with disabilities. One solution could be the extension of the concept of Medical Home to cover health care across the lifespan.

Repository Posting Date:
26-Oct-2011
Date of Publication:
17-Oct-2011
Sponsors:
Western Institute of Nursing

Full metadata record

DC FieldValue Language
dc.typePresentationen_GB
dc.titleFACTORS DELAYING PRIMARY CARE HEALTH TRANSITIONS FOR YOUTH WITH DISABILITIESen_GB
dc.identifier.urihttp://hdl.handle.net/10755/157335-
dc.description.abstract<table><tr><td colspan="2" class="item-title">FACTORS DELAYING PRIMARY CARE HEALTH TRANSITIONS FOR YOUTH WITH DISABILITIES</td></tr><tr class="item-sponsor"><td class="label">Conference Sponsor:</td><td class="value">Western Institute of Nursing</td></tr><tr class="item-year"><td class="label">Conference Year:</td><td class="value">2010</td></tr><tr class="item-author"><td class="label">Author:</td><td class="value">Rehm, Roberta, PhD, RN</td></tr><tr class="item-institute"><td class="label">P.I. Institution Name:</td><td class="value">UCSF</td></tr><tr class="item-author-title"><td class="label">Title:</td><td class="value">Associate Professor</td></tr><tr class="item-address"><td class="label">Contact Address:</td><td class="value">2 Koret Way, Box 0606, San Francisco, CA, 94116, USA</td></tr><tr class="item-email"><td class="label">Email:</td><td class="value">roberta.rehm@ucsf.edu</td></tr><tr class="item-co-authors"><td class="label">Co-Authors:</td><td class="value">Lucille T. Fisher</td></tr><tr><td colspan="2" class="item-abstract">PURPOSES/AIMS: <br/>Part of a larger, ongoing study of planning for the transition to adulthood for youth age 14-26, this analysis focused on 57 youth with concurrent physical and developmental chronic conditions and disabilities, their parents, and 21 health care providers. The aim of this analysis was to examine the decision-making processes of parents and HCPs around when and how to transition youth from pediatric to adult primary care. <br/>RATIONALE/CONCEPTUAL BASIS/BACKGROUND: <br/>Youth with physical and developmental disabilities are at high risk for health complications related to their chronic conditions and will need close monitoring, and often ongoing treatment, as they reach adulthood and leave pediatric practices. Prior research has shown that youth with chronic conditions have frequent delays in seeking follow-up care, suffer breaks in insurance coverage, and may have trouble negotiating complex systems of care during the health care transition.<br/>METHODS: <br/>This was an ethnographic, interpretive field study, based on a Symbolic Interaction framework. Data was collected in 2 home visits that included parent interviews, youth observations and interviews (when verbal), and interviews with health care providers at their site of practice. Analysis included coding using Atlas Ti for data management, construction of family summaries, field notes, memos, and discussion leading to consensus among research team members. <br/>RESULTS: <br/>Youth with health and developmental disabilities fell across a wide spectrum of abilities and ongoing health challenges. All youth were currently receiving health care, most in pediatric practices. Eight youth had insurance through Kaiser, which automatically transfers youth at age 18. Although 27 other youth were at least 18 years of age, only 11 had transitioned to adult-oriented primary health care practices. Parents felt little pressure to identify adult providers for the youth because pediatricians continued seeing youth as long as their insurance would cover them or until they developed health concerns of adulthood, usually anticipated to be at least the mid-20s. Health care providers and parents identified a variety of factors that delayed the transition to adult practices. These included: constraints inherent in adult practice, including insufficient numbers of primary providers, lack of training to care for youth with developmental or congenital chronic conditions, and expectations of adult practitioners to work with autonomous individuals, rather than family constellations; unwillingness to accept Medicaid; lack of reimbursement for time consuming care coordination; difficulties in sharing information about patients at the transition; strong bonds between pediatricians, youth, and parents; and few supportive community resources for adults as compared to children. <br/>IMPLICATIONS: <br/>A culture shift is needed to facilitate health care transitions for youth with chronic conditions and disabilities. Youth and families must learn to negotiate adult systems of care, and adult-oriented practices must adapt to accommodate the special needs of youth with disabilities. One solution could be the extension of the concept of Medical Home to cover health care across the lifespan.<br/> <br/></td></tr></table>en_GB
dc.date.available2011-10-26T19:46:44Z-
dc.date.issued2011-10-17en_GB
dc.date.accessioned2011-10-26T19:46:44Z-
dc.description.sponsorshipWestern Institute of Nursingen_GB
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