Dataset Information

Identifying Priorities to Improve the System of Care for Children With Complex Health Needs in North Carolina: Process and Outcomes of Systematic Stakeholder Engagement.

ABSTRACT:

Objective

Children with complex health needs (CCHN) have both medical (eg, chronic conditions) and health-related social needs (eg, potentially adverse social determinants of health) that require ongoing health care and support from multiple community service providers. National standards developed for populations defined by health needs (CYSHCN) provide a framework for stakeholders to plan system-level improvements in care delivery for CCHN, but improvement efforts should reflect the priorities of their families and providers. This article describes a process of prioritizing system-level efforts to improve the health and well-being of CCHN and families in North Carolina (NC), using systematic stakeholder engagement and modified Delphi expert ratings.

Methods

We surveyed stakeholders with experience caring for CCHN using an open-ended, 3-item instrument to identify opportunities to improve systems of care. Using directed qualitative content analysis, we synthesized responses into a master list of potential improvement topics. Using a modified Delphi approach, a 16-member advisory committee rated all topics for importance and urgency, on 9-point Likert scales over 2 rounds; then ratings for each topic were ranked (low, medium, high) to establish relative priority.

Results

Forty seven individuals from 31 counties around NC provided survey responses, yielding 59 improvement topics in 10 domains. Through the modified Delphi method process, 21 topics (36%) received the highest rankings, largely representing access to community- and home-based services, equity, and enhancement of the pediatric workforce.

Conclusions

Priorities identified by stakeholders will inform advocacy, policy, and improvement efforts. Next steps for the coalition include developing improvement projects to implement stakeholder-recommended actions for the highest-priority topics.

SUBMITTER: Sandhu S

PROVIDER: S-EPMC9314463 | biostudies-literature | 2022 Aug

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Identifying Priorities to Improve the System of Care for Children With Complex Health Needs in North Carolina: Process and Outcomes of Systematic Stakeholder Engagement.

Sandhu Sahil S Ming David Y DY Crew Carter C Morreale Madlyn C MC Cleveland Shea S Lail Jennifer J de Jong Neal A NA

Academic pediatrics 20220126 6

<h4>Objective</h4>Children with complex health needs (CCHN) have both medical (eg, chronic conditions) and health-related social needs (eg, potentially adverse social determinants of health) that require ongoing health care and support from multiple community service providers. National standards developed for populations defined by health needs (CYSHCN) provide a framework for stakeholders to plan system-level improvements in care delivery for CCHN, but improvement efforts should reflect the pr ...[more]

PMID: 35091096

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Project description:Translational approaches to science have the potential to produce research that better meets the needs of community stakeholders and advances scientific understanding. Researchers involved in translational research make committed efforts to increased engagement and communication with stakeholders throughout the research process, from planning through implementation and evaluation. Referred to as solutions-driven research within the U.S. Environmental Protection Agency (EPA) Office of Research Development, this approach is being piloted on Cape Cod (Barnstable County), Massachusetts. EPA researchers are working in close coordination with community partners on the Cape to better understand and address challenges with managing nonpoint source nitrogen. The pilot also aims to assess the usefulness of solutions-driven research approaches for application in future EPA research efforts. Using semi-structured interviews with researchers and other stakeholders, we examined researchers' and stakeholders' perspectives on the impacts of intentional and intensive stakeholder engagement on research efforts to improve coastal water quality. This study provides a reflexive assessment of the perceived benefits and drawbacks for researchers and other stakeholders when there is an institutional expectation of an increased focus on engagement. We found that engagement has been truly intertwined with research in the pilot, participants perceived an improvement in research usefulness through developing valuable collaborative relationships, and that these relationships required significant time commitments to maintain. We also identified a need for an efficient infrastructure for developing and distributing communication materials for continued engagement with diverse stakeholders throughout the research process. The paper provides transferable practices for researchers seeking to use a solutions-driven research approach based on lessons learned thus far in how to support researchers and research planning in simultaneously prioritizing effective engagement and sound collaborative environmental science research to address a localized environmental challenge. This is an innovative approach in that interviews occurred as the implementation phase of the project began, with the goal of implementing the lessons learned outlined here in the ongoing project.Supplementary informationThe online version contains supplementary material available at 10.1007/s42532-022-00119-5.

Project description:BackgroundWell-defined, systematic, and transparent processes to identify health research gaps, needs, and priorities are vital to ensuring that available funds target areas with the greatest potential for impact.ObjectiveThe purpose of this review is to characterize methods conducted or supported by research funding organizations to identify health research gaps, needs, or priorities.MethodWe searched MEDLINE, PsycINFO, and the Web of Science up to September 2019. Eligible studies reported on methods to identify health research gaps, needs, and priorities that had been conducted or supported by research funding organizations. Using a published protocol, we extracted data on the method, criteria, involvement of stakeholders, evaluations, and whether the method had been replicated (i.e., used in other studies).ResultsAmong 10,832 citations, 167 studies were eligible for full data extraction. More than half of the studies employed methods to identify both needs and priorities, whereas about a quarter of studies focused singularly on identifying gaps (7%), needs (6%), or priorities (14%) only. The most frequently used methods were the convening of workshops or meetings (37%), quantitative methods (32%), and the James Lind Alliance approach, a multi-stakeholder research needs and priority setting process (28%). The most widely applied criteria were importance to stakeholders (72%), potential value (29%), and feasibility (18%). Stakeholder involvement was most prominent among clinicians (69%), researchers (66%), and patients and the public (59%). Stakeholders were identified through stakeholder organizations (51%) and purposive (26%) and convenience sampling (11%). Only 4% of studies evaluated the effectiveness of the methods and 37% employed methods that were reproducible and used in other studies.DiscussionTo ensure optimal targeting of funds to meet the greatest areas of need and maximize outcomes, a much more robust evidence base is needed to ascertain the effectiveness of methods used to identify research gaps, needs, and priorities.

Dataset Information

Identifying Priorities to Improve the System of Care for Children With Complex Health Needs in North Carolina: Process and Outcomes of Systematic Stakeholder Engagement.

Objective

Methods

Results

Conclusions

Publications

Identifying Priorities to Improve the System of Care for Children With Complex Health Needs in North Carolina: Process and Outcomes of Systematic Stakeholder Engagement.

Similar Datasets

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