Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2022 May 10;31(3):1084-1094.
doi: 10.1044/2021_AJSLP-21-00072. Epub 2021 Nov 3.

Creation of a Community-Driven Decision Support Tool for Caregivers of Children With Developmental Concerns

Dawn M Magnusson  1 , Irena Shwayder  2 , Natalie J Murphy  1 , Lindsay Ollerenshaw  1 , Michele Ebendick  3 , Eileen Auer-Bennett  2
Affiliations

Creation of a Community-Driven Decision Support Tool for Caregivers of Children With Developmental Concerns

Dawn M Magnusson et al. Am J Speech Lang Pathol. .

Abstract

Purpose: Despite increasing standardization of developmental screening and referral processes, significant early intervention service disparities exist. The aims of this article are to: (a) describe methods used to develop a decision support tool for caregivers of children with developmental concerns, (b) summarize key aspects of the tool, and (c) share preliminary results regarding the tool's acceptability and usability among key stakeholders.

Method: Content and design of the decision support tool was guided by a systematic process outlined by the International Patient Decision Aid Standards (IPDAS) Collaborative. Three focus group interviews were conducted with caregivers (n = 7), early childhood professionals (n = 28), and a mix of caregivers and professionals (N = 20) to assess caregiver decisional needs. In accordance with the IPDAS, a prototype of the decision support tool was iteratively cocreated by a subset of caregivers (n = 7) and early child health professionals (n = 5).

Results: The decision support tool leverages images and plain language text to guide caregivers and professionals along key steps of the early identification to service use pathway. Participants identified four themes central to shared decision making: trust, cultural humility and respect, strength-based conversations, and information-sharing. End-users found the tool to be acceptable and useful.

Conclusions: The decision support tool described offers an individualized approach for exploring beliefs about child development and developmental delay, considering service options within the context of the family's values, priorities, and preferences, and outlining next steps. Additional research regarding the tool's effectiveness in optimizing shared decision-making and reducing service use disparities is warranted.

PubMed Disclaimer

Figures

Figure 1.
Figure 1.
Phases of development for the decision support tool.
Figure 2.
Figure 2.
Prototype of paper-based decision support tool.
See this image and copyright information in PMC

References

    1. Adams, R. C. , & Levy, S. E. (2017). Shared decision-making and children with disabilities: Pathways to consensus. Pediatrics, 139(6), Article e20170956. https://doi.org/10.1542/peds.2017-0956 - PubMed
    1. Alpern, J. D. , Davey, C. S. , & Song, J. (2016). Perceived barriers to success for resident physicians interested in immigrant and refugee health. BMC Medical Education, 16(1), 178. https://doi.org/10.1186/s12909-016-0696-z - PMC - PubMed
    1. Autism Speaks. (2009). ATN/AIR-P medication decision aid. https://www.autismspeaks.org/tool-kit/atnair-p-medication-decision-aid
    1. Brinkman, W. B. , Hartl Majcher, J. , Poling, L. M. , Shi, G. , Zender, M. , Sucharew, H. , Britto, M. T. , & Epstein, J. N. (2013). Shared decision-making to improve attention-deficit hyperactivity disorder care. Patient Education and Counseling, 93(1), 95–101. https://doi.org/10.1016/j.pec.2013.04.009 - PMC - PubMed
    1. Child and Adolescent Health Measurement Initiative. (2018). NSCH Interactive Data Query (2016–2018)—Data resource center for child and adolescent health supported by the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB). https://www.childhealthdata.org/browse/survey

Publication types