From tokenism to togetherness: the V.O.I.C.E. framework for safety-centred lived experience involvement in perinatal and parenting research

Résumé fourni par la source

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. 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. 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. Early- and mid-career researchers in pregnancy, childbirth, and parenting want to include people with real, personal experience (lived experience) in their studies. They are often expected to do this, but they face major hurdles. These hurdles can make the inclusion feel like a “box-ticking” exercise rather than something genuine. Right now, there is a lack of practical advice on how to do this safely and meaningfully. We want to change this by creating a practical guide for researchers. By working alongside parents and caregivers from the VILLAGE network (an Australian network of parents and carers intentionally designed to support life-friendly, opt-in engagement throughout the entire research life cycle), we have created the Valuing Our Insights through Collaborative Engagement (V.O.I.C.E.) Framework which is a flexible set of guiding principles for meaningful lived experience involvement in research. These principles focus on respect, safety, human rights, and building on people’s strengths. Our guide is designed to be adaptable to real-world challenges and to other contexts, helping both researchers and everyday experts work together smoothly. Ultimately, our goal is to support meaningful, fair, and lasting partnerships that move far beyond tokenism.

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