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Dublin Core
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November 2018 List
Text
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Citation List Month
November 2018 List
URL Address
<a href="http://doi.org/10.1016/j.pedn.2018.09.007" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.pedn.2018.09.007</a>
Dublin Core
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Title
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Identifying Opportunities to Provide Family-centered Care for Families With Children With Type 1 Spinal Muscular Atrophy
Publisher
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Journal of Pediatric Nursing
Date
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2018
Subject
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Care coordination;Family support;Family centered care;Spinal muscular atrophy
Creator
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Murrell DV;Crawford CA;Jackson CT;Lotze TE;Wiemann CM
Description
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STUDY PURPOSE: The purpose of this qualitative study was to understand, from the parent perspective, the experience of the family whose child has Type 1 spinal muscular atrophy (Type 1 SMA), in the emergency center, hospital, and clinical care settings to identify opportunities for improved family-centered care (FCC). DESIGN AND METHODS: This study used a qualitative descriptive design with individual or small group interviews guided by a semi-structured questionnaire. Reviewers used framework analysis to identify gaps in the provision of FCC and opportunities for improvement with respect to services health professionals may provide families of children with Type 1 SMA. RESULTS: Nineteen families with 22 children with Type 1 SMA participated. Results are organized according to eight basic tenets of FCC. Family-to-family interactions strongly impacted participants' decision-making and perceived level of support. Participants valued strong family/provider partnerships, feeling heard and respected by their providers, and receiving complete education regarding disease trajectory. CONCLUSIONS: Our analyses revealed both successful application of FCC and gaps in care where FCC could have been used to benefit families who have children with Type 1 SMA. As a pediatric chronic illness affects the whole family, FCC is important in maintaining the providers' focus on the family during the child's care. PRACTICE IMPLICATIONS: There are opportunities for nursing, social work, care managers and others to engage as care coordinators to explain the family's goals and values to the medical team. Care coordinators help ensure understanding between families and providers, empowering the family to articulate their hopes and concerns.
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<a href="http://doi.org/10.1016/j.pedn.2018.09.007" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2018.09.007</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
Care coordination
Crawford CA
Family Centered Care
family support
Jackson CT
Journal of Pediatric Nursing
Lotze TE
Murrell DV
November 2018 List
Spinal Muscular Atrophy
Wiemann CM