Related Experiment Video
Updated: Sep 4, 2026

Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
From tokenism to togetherness: the V.O.I.C.E. framework for safety-centred lived experience involvement in perinatal
Megan L Gow1, Jessica Appleton2,3, Konsita Kuswara3
1The George Institute for Global Health, UNSW Sydney, Sydney, Australia.
Background:
Early- and mid-career researchers (EMCRs) in perinatal and parenting research are highly motivated, and increasingly expected, to involve people with lived experience meaningfully in their work. However, substantial structural constraints can reinforce tokenistic approaches. Without practical, context-sensitive guidance, meaningful involvement can feel simultaneously mandatory yet unattainable, ultimately undermining partnership efforts. We aim to support EMCRs navigating these complexities by articulating a set of practice-informed principles to guide meaningful, safety-centred lived experience involvement.
Main Body:
To support EMCRs in implementing authentic lived experience involvement, several key elements are required: voluntary participation, explicit attention to safety and boundaries, person-first relationships, and deliberate efforts to flatten traditional hierarchies between researchers and parents. The VILLAGE (Valued Individuals Living and Learning About Growing Equity) is an Australian network of parents and carers intentionally designed to support life-friendly, opt-in engagement throughout the entire research life cycle. Led by lived experience experts to assist researchers in this integration, the VILLAGE provides a concrete illustration of how relational, strengths-based, and rights-based principles for meaningful lived experience involvement can be operationalised as the Valuing Our Insights through Collaborative Engagement (V.O.I.C.E.) Framework across three interconnected domains: (1) Relational and cultural foundations, which focuses on the social conditions that ensure involvement is safe and respectful; (2) Agency and voice, which foregrounds who decides and how individuals exercise choice; and (3) Structural integrity and reciprocity, which addresses the material and ethical conditions required for credible involvement. Finally, to sustain EMCR practice, academic institutions, funding bodies, and scientific journals must play a critical role in enabling the VOICE Framework.
Conclusions:
Moving from tokenistic lived experience involvement to true togetherness requires deliberate attention to power dynamics, safety, and institutional recognition, alongside a willingness to value relationships as a core component of research practice. A vital opportunity exists for EMCRs, institutions, publishers, and journals to collectively reshape how partnership is understood and structurally supported in health and social research.
Related Concept Videos
Ethics in Research
Socioemotional Development during Infancy
Primary Temperament Types
Stella Chess...
Community Based Intervention
Foundations of Community Mental Health Programs
Central to the success of community-based interventions is the...
Socioemotional Experience and Gender Development
Interpersonal Psychotherapy
Impact of Social Context on Individuals

