2.50
Hdl Handle:
http://hdl.handle.net/10755/211680
Type:
Research Study
Title:
PLANNING FOR ADULTHOOD FOR YOUTH WITH COMPLEX NEEDS: PRIORITIES & IMPACTS
Abstract:
Purpose/Aims: The purpose of this study was to explore planning of families during the transition to adulthood for youth with co-occurring physical and developmental chronic conditions. Study aims were to explore planning processes, analyze impacts on families and youth, and describe interactions between parents, youth, educators and health care providers. Rationale/Conceptual Basis/Background: Youth with chronic health conditions who are also developmentally disabled require assistance and support into adulthood, necessitating specific and thoughtful planning to assure ongoing availability of needed services, and optimize long term quality of life. Most youth with complex chronic conditions and disabilities live at home, receiving most of their care and support from parents and siblings, greatly impacting the lives of all. Conceptually, investigators drew upon Transitions Theory and Symbolic Interaction. Methods: This was an interpretive field study including sixty youth, aged 14-26, 76 family members, mostly parents, 26 health care providers, and 37 educators. Data collection occurred in family homes, schools, and primary health care settings, and included interviews, observations, and review of relevant documents. Data were analyzed by a multistep process including coding, discussion at team meetings, written memos, and participant review. Results:  Parents believed they were providing excellent care and assistance to their youth, and worried that it would be difficult or impossible to find compassionate long term services of equivalent quality. Families were universally committed to lifelong care or monitoring of youth, though most hoped for less day to day responsibility over time. Priorities for planning included assuring ongoing supports for health and safety, finding meaningful post-high school activities, and seeking satisfying social relationships into adulthood. Major categories of family impact included a. Relentlessness of day to day responsibility &/or caregiving, b. Parental expectation of long term commitment and involvement with youth, and c. Ambivalence around expectations for long term sibling responsibility for youth. Parents and youth were mostly aware of long term needs in realms of health, safety, housing, and financial support, and demonstrated greater specificity in plans and goals in older age groups. Support for planning from educators and HCPs was inconsistent and uncoordinated. Overarching theme: Parents retained commitment and responsibility for youth well into adulthood, and most received little personalized guidance through transition. Implications: Family-centered nurses could be helpful to families of youth with complex needs by facilitating assessment and planning for long term needs of individual youth, and learning and sharing information about available community resources. Funding: National Institute of Child Health and Human Development R01: HD049433
Keywords:
Childhood chronic illness; Family Planning
Repository Posting Date:
20-Feb-2012
Date of Publication:
20-Feb-2012
Other Identifiers:
4837
Sponsors:
Western Institute of Nursing

Full metadata record

DC FieldValue Language
dc.typeResearch Studyen_GB
dc.titlePLANNING FOR ADULTHOOD FOR YOUTH WITH COMPLEX NEEDS: PRIORITIES & IMPACTSen_GB
dc.identifier.urihttp://hdl.handle.net/10755/211680-
dc.description.abstractPurpose/Aims: The purpose of this study was to explore planning of families during the transition to adulthood for youth with co-occurring physical and developmental chronic conditions. Study aims were to explore planning processes, analyze impacts on families and youth, and describe interactions between parents, youth, educators and health care providers. Rationale/Conceptual Basis/Background: Youth with chronic health conditions who are also developmentally disabled require assistance and support into adulthood, necessitating specific and thoughtful planning to assure ongoing availability of needed services, and optimize long term quality of life. Most youth with complex chronic conditions and disabilities live at home, receiving most of their care and support from parents and siblings, greatly impacting the lives of all. Conceptually, investigators drew upon Transitions Theory and Symbolic Interaction. Methods: This was an interpretive field study including sixty youth, aged 14-26, 76 family members, mostly parents, 26 health care providers, and 37 educators. Data collection occurred in family homes, schools, and primary health care settings, and included interviews, observations, and review of relevant documents. Data were analyzed by a multistep process including coding, discussion at team meetings, written memos, and participant review. Results:  Parents believed they were providing excellent care and assistance to their youth, and worried that it would be difficult or impossible to find compassionate long term services of equivalent quality. Families were universally committed to lifelong care or monitoring of youth, though most hoped for less day to day responsibility over time. Priorities for planning included assuring ongoing supports for health and safety, finding meaningful post-high school activities, and seeking satisfying social relationships into adulthood. Major categories of family impact included a. Relentlessness of day to day responsibility &/or caregiving, b. Parental expectation of long term commitment and involvement with youth, and c. Ambivalence around expectations for long term sibling responsibility for youth. Parents and youth were mostly aware of long term needs in realms of health, safety, housing, and financial support, and demonstrated greater specificity in plans and goals in older age groups. Support for planning from educators and HCPs was inconsistent and uncoordinated. Overarching theme: Parents retained commitment and responsibility for youth well into adulthood, and most received little personalized guidance through transition. Implications: Family-centered nurses could be helpful to families of youth with complex needs by facilitating assessment and planning for long term needs of individual youth, and learning and sharing information about available community resources. Funding: National Institute of Child Health and Human Development R01: HD049433en_GB
dc.subjectChildhood chronic illnessen_GB
dc.subjectFamily Planningen_GB
dc.date.available2012-02-20T12:08:05Z-
dc.date.issued2012-02-20T12:08:05Z-
dc.date.accessioned2012-02-20T12:08:05Z-
dc.description.sponsorshipWestern Institute of Nursingen_GB
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