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

Abstract

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. 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). 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. 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.