Children's Rights to the Best Possible Care: Establishing Processes for Data Collection in Routine Care to Address Questions of Intervention Effectiveness for Children With Speech Sound Disorder.

Abstract

Purpose: The United Nations Convention of the Rights of the Child (CRC) recognizes that all children have a right to the best possible care, CRC Article 24 (health, water, food, environment). For children with speech sound disorder, this is vital in order to protect their rights to CRC Article 13 (sharing thoughts freely), CRC Article 19 (protection from violence), and CRC Article 28 (access to education). Determining what constitutes best possible care for this population is challenging because much evidence for intervention takes place outside of routine care. This review article provides an overview of Phase 1 of the Maximising the Impact of Speech and Language Therapy for Children with Speech Sound Disorder (MISLToe_SSD) program of research, which ultimately aims to establish a process for using data collected in routine care to investigate best possible care for children with speech sound disorder. The purpose of Phase 1 was to obtain consensus on a diagnostic pathway, a defined list of interventions, and a core outcome set.

Method and results: An umbrella review was carried out to provide information on existing evidence. Participatory workshops with speech and language therapists were used to determine the content of the diagnostic pathway, and a card sorting exercise was used to provide a list of interventions currently in use and agree on their definitions. Finally, the core outcome set was agreed through a Delphi process. Patient and public involvement activities were used throughout the program of work to ensure that the aims and activities were in line with the preferences of those with lived experience of speech sound disorder.

Conclusions: Consensus was reached on the three core aims of agreeing a diagnostic protocol, a core outcome set, and a list of defined interventions. Phase 2 of MISLToe_SSD will establish the feasibility of implementing these within routine care, and Phase 3 will extend the work to multiple services, leading to the large data set required for future analyses. This work has been carried out in the United Kingdom, but work is underway to replicate this work in Brazil, Sweden, Portugal, and other countries and in other languages to establish an international diagnostic pathway, a defined list of interventions, and a core outcome set.