Finalist

Community Engagement Initiative of the Year Award

ENVISAGE Families: Early Intervention for Caregivers of Children with Disabilities

Finalist of the Community Engagement Initiative of the Year Award

Australian Catholic University - Australia

"ENVISAGE: ENabling VISions and Growing Expectations: Parenting children with disabilities"


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Summary

ENVISAGE-Families (ENVISAGE-F: Enabling Visions and Growing Expectations for Families) is a unique, evidence-based program that supports and empowers caregivers raising children with developmental concerns and disabilities.
Parenting children with disabilities is challenging and can take a significant toll on caregivers, impacting their wellbeing, their family, and the outcomes for child, family, and community.
The ENVISAGE-F program was co-created by Australian and Canadian researchers in partnership with parents and clinicians and offers five integrated workshops that can be delivered online or in person.
ENVISAGE-F provides families with evidence-based information, family-focused strategies, and a community of support through peer connections. Workshops are co-facilitated by a trained caregiver with lived experience, and a qualified early childhood professional.
ENVISAGE-F’s uniqueness lies in its demonstrated ability to positively change caregiver, family, community, and societal attitudes towards people with disabilities. Through rigorous evaluation the program has been shown to increase caregivers' confidence in parenting children with disabilities, empowering them to take strengths-based, future-focused approaches to their child, family, and community.
ENVISAGE-F provides caregivers with tools to support connection, collaboration, and wellbeing. Empathy and evidence are equally prioritised to ensure that caregivers finish the program embedded within an informed community of support.
ENVISAGE has now been upscaled for far-reaching impact across Australia and includes ENVISAGE-First Peoples, specifically codesigned with/for Aboriginal and Torres Strait Islander families and communities; ENVISAGE-International, a cross-cultural translation of ENVISAGE to different languages and cultural groups; and ENVISAGE-Service Providers for health professionals working in early child development and disability.

Key People


Associate Professor Laura Miller
Associate Prof in Occupational Therapy, Chief Investigator ENVISAGE
School of Allied Health Faculty of Health Sciences,  Australian Catholic University



Professor Christine Imms
Professor of Neurodevelopment and Disability, Occupational Therapist Chief Investigator ENVISAGE
Department of Paediatrics; Healthy Trajectories Child and Youth Disability Research Hub,  The University of Melbourne



Professor Peter Rosenbaum
Professor of Paediatrics Chief Investigator ENVISAGE
CanChild, School of Rehabilitation Science ,  McMaster University



Ms Rose Babic
Parent-partner
Healthy Trajectories Child and Youth Disability Research Hub,  Murdoch Children’s Research Institute (Australia)



Ms Vicki Cavalerios
Parent-partner
Healthy Trajectories Child and Youth Disability Research Hub,  Murdoch Children’s Research Institute (Australia)



Ms Rachel Martens
Family Engagement Advisor and parent-partner
CanChild, School of Rehabilitation Science ,  McMaster University



Dr Andrea Cross
Post-Doctoral researcher
CanChild, School of Rehabilitation Science ,  McMaster University



Dr Bridget O‘Connor
Post-Doctoral researcher
Healthy Trajectories Child and Youth Disability Research Hub,  The University of Melbourne



Ms Kerry Britt
Doctoral Candidate
Healthy Trajectories Child and Youth Disability Research Hub,  The University of Melbourne



Ms Jacky Lipson
ENVISAGE National Project Officer
School of Allied Health Faculty of Health Sciences,  Australian Catholic University



Ms Debra Hughes
Research Assistant
CanChild, School of Rehabilitation Science ,  McMaster University



Ms Rebecca Tamaariki
Parent-partner
School of Allied Health Faculty of Health Sciences,  Australian Catholic University



Ms Sandy Boyd
Research Assistant
School of Allied Health Faculty of Health Sciences,  Australian Catholic University



Dr Alison Nelson
Director, Organisational Development and Acting Chief Operations Officer
Institute for Urban Indigenous Health (IUIH)



Ms Chrisdell McLaren
Deputy Chief Operations Officer
Institute for Urban Indigenous Health (IUIH)



Ms Monika Novak-Pavlic
Post-Doctoral researcher
CanChild, School of Rehabilitation Science ,  McMaster University



Ms Kinga Pozniak
Post-Doctoral researcher
CanChild, School of Rehabilitation Science ,  McMaster University


Acknowledgements

Development of the ENVISAGE program was made possible by research grants from the American Academy for Cerebral Palsy and Developmental Medicine; the Canadian Institutes for Health Research (CIHR); the Cerebral Palsy Alliance Research Foundation; The University of Melbourne; and Kids Brain Health Network. Australia-wide delivery of ENVISAGE-Families is generously supported through funding from the Australian Government Department of Social Services.

The program is led by Australian Catholic University, University of Melbourne, Murdoch Children’s Research Institute and McMaster University, with support from many partners and collaborators including Institute for Urban Indigenous Health, Perth Children’s Hospital, Royal Children’s Hospital, Children’s Health Queensland, Kids +, Canadian partners at CanChild Centre for Childhood Disability Research. Most importantly, we want to acknowledge the 140+ families who have contributed their time, knowledge, and expertise to ensure ENVISAGE has families’ fingerprints all over it!

Images

Focus on my strengths and look at what I can do.

Keeping fit and staying deadly

My family is the most important thing in the world to me. They know me best.

ENVISAGE Families. ENabling VIsions and Expectations for Families

I love to learn with my sister

I love to play and learn in the real world

Family and fun, that's what childhood is all about.

Having fun and staying deadly

My life is a storybook not a text book. In order to understand me, you need to understand my story.

Spending time with my friends is my favourite activity.

IMPACT STORY

Impacting lifes

ENVISAGE played a significant role in allowing me to see my daughter as the happy, silly, fun-loving child that she is. As parents we get caught up in medical appointments, diagnosis, services, supports, and feel that we still need to do more. Since ENVISAGE, we have been having more fun, doing things that make her happy and living in the moment rather than worrying about the future. This has allowed me to enjoy the journey.
One of my biggest takeaways was the importance of self-care. Being a parent to child with unique needs, your own needs often get left out. ENVISAGE has allowed me to ensure that I’m taking care of myself, taking time for myself, and allowing others to help me with my caregiving role. I have become a healthier, happier version of myself. (Mable - Parent)
ENVISAGE is a wonderful tool to help parents feel less alone navigating the overwhelming realm of a developmental diagnosis for their child. The ability to connect with other parents in similar roles is extremely helpful. Hearing strategies and challenges and being provided examples of how to manage or approach challenges is encouraging (“I can do this”), and in a sense liberating (“I'm not alone”). I would recommend ENVISAGE for parents of ALL children. Healthcare providers can also use it to help parents achieve the best possible outcomes for their children. One mum said: ‘you have textbooks, and we have storybooks’. I couldn't have said anything truer myself. (Sarah- Parent)

LEARNINGS

Lessons learned

The ENVISAGE program embodies the concept of “nothing about us without us”. Its success in translating ideas to practice is predicated upon strong engagement with caregivers, community, and service providers; authentic collaborative partnerships; and a commitment to codesign that enabled us to address an urgent real-world problem and make an immediate impact on families raising children with disability.
Co-designing our ENVISAGE program enabled us to identify seven key ingredients for a successful parent-researcher relationship: consistent communication, clear roles and expectations, onboarding and feedback, flexibility, understanding, self-reflection, and funding.
Researchers and clinicians can garner several key points from ENVISAGE. First, in both research and clinical practice we must prioritize engagement with families to ensure that the services we provide are relevant and beneficial to their needs. Second, we must establish effective partnerships with families by fostering strong communication and understanding to create a clear understanding of roles and expectations. Finally, we must recognize the value of ongoing reflection, development, and improvement in our partnerships with families and our practice as a whole.
Leadership in co-design research requires a strong commitment to create opportunities for families to lead and for us to listen and learn together. As we continue to gain new knowledge and experience, it is important that we incorporate this knowledge into our practice and strive continually to improve our partnerships with families. Ultimately, with effective collaboration and engagement we can make the greatest impact on the lives of children with developmental concerns or disabilities and their families and communities.

FUTURE PLANS

What's coming?

The goal of ENVISAGE is to reduce or prevent the levels of physical and psychological health challenges and stress that families often experience when raising children with disabilities. Our ENVISAGE team has great ambition and expectations with several current developments:
• To continue to impact family empowerment, family functioning, parenting confidence and overall wellbeing, we understand that our programs must extend beyond the individual family to multiply the reach and scope of ENVISAGE. With our ENVISAGE-Service Provider (SP) analogue of the ENVISAGE-Families program we are studying the impact of extending our reach into professional practice. ENVISAGE-SP addresses practice gaps by providing health professionals and early childhood practitioners with a better understanding of how to support families.
• Additional expansions include a codesigned ENVISAGE-First Peoples program for Aboriginal and Torres Strait Islander families, recognising these communities’ unique culture and connections.
• Based on our ENVISAGE-Croatia experience, our commitment to translating ENVISAGE into different languages will also help us reach a wider audience and have a greater impact globally.
Overall, we are excited about the current and future directions of the ENVISAGE program of research and its potential to positively impact the lives of families and children with developmental concerns and disabilities. We believe that our commitment to strong engagement, on-going codesigned research and collaboration with families, service providers, community leaders and researchers will help us continue to innovate and improve our programs. Our ambition is to have the greatest impact and provide better support to those who need it most.


KEY STATISTICS

$8.8M AUD

In government and philanthropic grant funding

60+

Collaborators and partners internationally

140

Caregivers involved in the co-design and evaluation, of ENVISAGE Families

4

Domains of caregiver impact: Family Empowerment, Parenting Confidence, Family Functioning and Caregiver Physical Health

4

Projects: ENVISAGE-Families, ENVISAGE-Service Providers, ENVISAGE-First Peoples and ENVISAGE-International

400+

ENVISAGE programs rolled out across Australia (2023-2025)

2000+

ENVISAGE workshops delivered across Australia (2023-2025)

3000+

Australian caregivers’ access to ENVISAGE-F and ENVISAGE First Peoples (2023-2025)

60+

Professional and parent-peer facilitators trained across Australia (2023-2025)

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