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Social Connectedness in Family Social Support Networks: Strengthening Systems of Care for Children with Special Health Care Needs

Current approaches to addressing the problems families face when navigating complex service systems on behalf of their children rely largely on state or nationally driven efforts around the development of systems of care (SOCs). However, operationalizing meaningful family involvement within SOCs rem...

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Autores principales: Varda, Danielle M., Talmi, Ayelet
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Ubiquity Press 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6266728/
https://www.ncbi.nlm.nih.gov/pubmed/30515425
http://dx.doi.org/10.5334/egems.232
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author Varda, Danielle M.
Talmi, Ayelet
author_facet Varda, Danielle M.
Talmi, Ayelet
author_sort Varda, Danielle M.
collection PubMed
description Current approaches to addressing the problems families face when navigating complex service systems on behalf of their children rely largely on state or nationally driven efforts around the development of systems of care (SOCs). However, operationalizing meaningful family involvement within SOCs remains a challenge, with little attention paid to the role of personal social support networks (PSSNs). Specifically, risk factors related to the variations in the social connectedness of family social support networks are difficult to identify, assess, and track over time. This paper summarizes families’ descriptions of their PSSNs and describes the development of a social network analysis tool, the Person-Centered Network App (PCNA), used to measure and monitor the social connectedness of families of children with special health care and developmental needs. Twenty-nine families participated in the project and completed social network surveys, identifying a total of 38 unique types of support partners and 230 partnerships (dyadic relationships). Families identified a range of formal and informal members including primary care providers, medical specialists, family, friends, faith-based organizations, insurance providers, nurses, community organizations, early interventionists, school resources, other families, online support groups, and public resources, rating 61 percent of them as “very important.” Informal network members (e.g., family, friends) provided emotional and day-to-day support. Primary care providers, medical specialists, and public resources provided health care services while early intervention and medical specialists provided therapies. PSSNs were characterized by high levels of trust but low levels of coordination. These findings inform providers and case workers that families can readily describe their social connectedness in ways that may affect health care access and utilization. Understanding how PSSNs function in the lives of families of children with complex health care needs provides opportunities for improving systems of care (e.g., medical homes) and ultimately, enhancing health and developmental outcomes.
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spelling pubmed-62667282018-12-04 Social Connectedness in Family Social Support Networks: Strengthening Systems of Care for Children with Special Health Care Needs Varda, Danielle M. Talmi, Ayelet EGEMS (Wash DC) Empirical Research Current approaches to addressing the problems families face when navigating complex service systems on behalf of their children rely largely on state or nationally driven efforts around the development of systems of care (SOCs). However, operationalizing meaningful family involvement within SOCs remains a challenge, with little attention paid to the role of personal social support networks (PSSNs). Specifically, risk factors related to the variations in the social connectedness of family social support networks are difficult to identify, assess, and track over time. This paper summarizes families’ descriptions of their PSSNs and describes the development of a social network analysis tool, the Person-Centered Network App (PCNA), used to measure and monitor the social connectedness of families of children with special health care and developmental needs. Twenty-nine families participated in the project and completed social network surveys, identifying a total of 38 unique types of support partners and 230 partnerships (dyadic relationships). Families identified a range of formal and informal members including primary care providers, medical specialists, family, friends, faith-based organizations, insurance providers, nurses, community organizations, early interventionists, school resources, other families, online support groups, and public resources, rating 61 percent of them as “very important.” Informal network members (e.g., family, friends) provided emotional and day-to-day support. Primary care providers, medical specialists, and public resources provided health care services while early intervention and medical specialists provided therapies. PSSNs were characterized by high levels of trust but low levels of coordination. These findings inform providers and case workers that families can readily describe their social connectedness in ways that may affect health care access and utilization. Understanding how PSSNs function in the lives of families of children with complex health care needs provides opportunities for improving systems of care (e.g., medical homes) and ultimately, enhancing health and developmental outcomes. Ubiquity Press 2018-11-23 /pmc/articles/PMC6266728/ /pubmed/30515425 http://dx.doi.org/10.5334/egems.232 Text en Copyright: © 2018 The Author(s) http://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution 4.0 International License (CC-BY 4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. See http://creativecommons.org/licenses/by/4.0/.
spellingShingle Empirical Research
Varda, Danielle M.
Talmi, Ayelet
Social Connectedness in Family Social Support Networks: Strengthening Systems of Care for Children with Special Health Care Needs
title Social Connectedness in Family Social Support Networks: Strengthening Systems of Care for Children with Special Health Care Needs
title_full Social Connectedness in Family Social Support Networks: Strengthening Systems of Care for Children with Special Health Care Needs
title_fullStr Social Connectedness in Family Social Support Networks: Strengthening Systems of Care for Children with Special Health Care Needs
title_full_unstemmed Social Connectedness in Family Social Support Networks: Strengthening Systems of Care for Children with Special Health Care Needs
title_short Social Connectedness in Family Social Support Networks: Strengthening Systems of Care for Children with Special Health Care Needs
title_sort social connectedness in family social support networks: strengthening systems of care for children with special health care needs
topic Empirical Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6266728/
https://www.ncbi.nlm.nih.gov/pubmed/30515425
http://dx.doi.org/10.5334/egems.232
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