Wait-Lifting: Active waiting for speech and language services by children and families

Research output: ThesisDoctoral Thesis

Abstract

Throughout the world, some children with communication and swallowing needs must wait for support since there are not enough speech and language services to meet demand. While waiting, children miss the benefits of early intervention and their caregivers may feel fearful, stressed, and disempowered. There is limited knowledge about waiting for speech and language services, solutions for managing waiting lists, and provision of support to those who are waiting. Consequently, this doctoral research explored current perspectives, experiences, and solutions regarding waiting for speech and language services across stakeholder groups (e.g., consumers, professionals), client populations, service contexts, and countries.

This doctoral research, known as the Wait-Lifting Study, consisted of a four-phase program of research: (1) thematic analysis of stakeholders’ written submissions to a government Senate Inquiry (n = 133; Chapter 2); (2) quantitative and qualitative analysis of SLPs’ questionnaire responses (n = 264; Chapters 3 and 4); (3) a mixed methods study informing the design of an evidence-based active waiting website via an evaluation of existing sites (n = 25), and consultation with members of the public via a questionnaire (n = 119) and focus groups (n = 16; Chapter 6); and (4) a randomised controlled trial evaluating active (provision of the website) versus passive waiting (control group) by children and families (n = 97; Chapter 7). Two theoretical frameworks were applied: (1) the International Classification of Functioning, Disability and Health: Children and Youth Version (ICF-CY), and (2) the theory of preparative waiting. This doctoral research was presented as a series of six journal articles and an exegesis.

Understanding the status quo (Chapters 2-4): Waiting lists had significant consequences for many consumers, professionals, and for society, including physical, psychological, financial, and ethical burdens. SLPs indicated that waiting duration for both assessment and intervention ranged from 0-42 months. Overall, children most often waited for assessments (referral → wait → assessment → therapy; n = 67, 33.8%) but could follow a multitude of care pathways depending on their needs or the service they were referred to (e.g., referral → triage → assessment → therapy). Although passive strategies were evident, many consumers and professionals engaged in active strategies to address waiting lists and their consequences. Consumer actions included conducting their own research and relocating to a larger city. Professional actions related to service delivery (e.g., parent information, use of technology), workplace processes and policies (e.g., prioritisation policies), and the workforce (e.g., recruiting more SLPs). Young children and children with feeding and stuttering needs were most often high priority for speech and language services. Severity of communication/swallowing disorder and availability of resources (e.g., funding, staff) were considered the most important factors in prioritisation.

Designing and evaluating solutions (Chapters 6-7): A waiting for speech-language pathology website was proposed and evidence-based resources about strategies to implement with children, readable information, and simple web architecture were recommended. A randomised controlled trial comparing active waiting (provision of the website) and passive waiting (control group) by children and caregivers found no statistically significant changes between active and passive waiting groups, indicating that those on waiting lists may require more support than can be provided by a website.

Conclusions and contributions: Waiting lists can be burdensome for consumers, professionals, and society. Implicit decision-making, variation, and a lack of clear evidence guiding waiting list practices were apparent. Evidence-building in real-world clinical settings may guide professionals regarding effective waiting list management practices, including creation of care pathways. Transparent and collaborative actions at local and systemic levels are needed to reimagine service provision and access, and optimise outcomes for children and their families.
Original languageEnglish
QualificationDoctor of Philosophy
Awarding Institution
  • Charles Sturt University
Supervisors/Advisors
  • McLeod, Sharynne, Principal Supervisor
  • Crowe, Kate, Co-Supervisor
  • Hopf, Suzanne, Co-Supervisor
Place of PublicationAutralia
Publisher
Publication statusPublished - 2020

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