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2240 Shared decision making in child health: A qualitative study of parents of children with medical complexity

OBJECTIVES/SPECIFIC AIMS: Children with medical complexity (CMC) comprise less than 5% of the pediatric population and over 40% of pediatric spending, yet receive poorer quality health care compared with other children. The American Academy of Pediatrics recently identified shared decision making (S...

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Autores principales: Lin, Jody, Clark, Catherine, Halpern-Felsher, Bonnie, Sanders, Lee M.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Cambridge University Press 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6799790/
http://dx.doi.org/10.1017/cts.2018.304
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author Lin, Jody
Clark, Catherine
Halpern-Felsher, Bonnie
Sanders, Lee M.
author_facet Lin, Jody
Clark, Catherine
Halpern-Felsher, Bonnie
Sanders, Lee M.
author_sort Lin, Jody
collection PubMed
description OBJECTIVES/SPECIFIC AIMS: Children with medical complexity (CMC) comprise less than 5% of the pediatric population and over 40% of pediatric spending, yet receive poorer quality health care compared with other children. The American Academy of Pediatrics recently identified shared decision making (SDM) as a key quality indicator for CMC, but there is no consensus model for SDM in CMC. Objective: To create a model of SDM from perspectives of parents of CMC. METHODS/STUDY POPULATION: Interviews with parents of CMC explored SDM preferences and experiences. Eligible parents were ≥18 years old, English-speaking or Spanish-speaking, with a CMC <12 years old. Interviews were recorded, transcribed, and analyzed by 3 independent coders for shared themes using grounded theory. RESULTS/ANTICIPATED RESULTS: Interviews were with 31 parents [26 English speakers, median parent age 33 years (SD 11), median child age 3 years (SD 3.6)] in inpatient and outpatient settings. We identified specific, unique components of SDM that affect decision quality, the alignment of a decision with the parent’s preferences and values. Themes included: concerns about uncertainty of the child’s life trajectory, conflict during parent-provider communication, health system factors such as provider schedule; parent agency, and the influence of the source of information. DISCUSSION/SIGNIFICANCE OF IMPACT: Our findings provide specific components of SDM unique to CMC that can inform future research and interventions to support SDM for parents and providers of CMC.
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spelling pubmed-67997902019-10-28 2240 Shared decision making in child health: A qualitative study of parents of children with medical complexity Lin, Jody Clark, Catherine Halpern-Felsher, Bonnie Sanders, Lee M. J Clin Transl Sci Science and Health Policy/Ethics/Health Impacts/Outcomes Research OBJECTIVES/SPECIFIC AIMS: Children with medical complexity (CMC) comprise less than 5% of the pediatric population and over 40% of pediatric spending, yet receive poorer quality health care compared with other children. The American Academy of Pediatrics recently identified shared decision making (SDM) as a key quality indicator for CMC, but there is no consensus model for SDM in CMC. Objective: To create a model of SDM from perspectives of parents of CMC. METHODS/STUDY POPULATION: Interviews with parents of CMC explored SDM preferences and experiences. Eligible parents were ≥18 years old, English-speaking or Spanish-speaking, with a CMC <12 years old. Interviews were recorded, transcribed, and analyzed by 3 independent coders for shared themes using grounded theory. RESULTS/ANTICIPATED RESULTS: Interviews were with 31 parents [26 English speakers, median parent age 33 years (SD 11), median child age 3 years (SD 3.6)] in inpatient and outpatient settings. We identified specific, unique components of SDM that affect decision quality, the alignment of a decision with the parent’s preferences and values. Themes included: concerns about uncertainty of the child’s life trajectory, conflict during parent-provider communication, health system factors such as provider schedule; parent agency, and the influence of the source of information. DISCUSSION/SIGNIFICANCE OF IMPACT: Our findings provide specific components of SDM unique to CMC that can inform future research and interventions to support SDM for parents and providers of CMC. Cambridge University Press 2018-11-21 /pmc/articles/PMC6799790/ http://dx.doi.org/10.1017/cts.2018.304 Text en © The Association for Clinical and Translational Science 2018 http://creativecommons.org/licenses/by/4.0/ This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Science and Health Policy/Ethics/Health Impacts/Outcomes Research
Lin, Jody
Clark, Catherine
Halpern-Felsher, Bonnie
Sanders, Lee M.
2240 Shared decision making in child health: A qualitative study of parents of children with medical complexity
title 2240 Shared decision making in child health: A qualitative study of parents of children with medical complexity
title_full 2240 Shared decision making in child health: A qualitative study of parents of children with medical complexity
title_fullStr 2240 Shared decision making in child health: A qualitative study of parents of children with medical complexity
title_full_unstemmed 2240 Shared decision making in child health: A qualitative study of parents of children with medical complexity
title_short 2240 Shared decision making in child health: A qualitative study of parents of children with medical complexity
title_sort 2240 shared decision making in child health: a qualitative study of parents of children with medical complexity
topic Science and Health Policy/Ethics/Health Impacts/Outcomes Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6799790/
http://dx.doi.org/10.1017/cts.2018.304
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