Health in NZ Digital Week presentation

Presentation to HiNZ Digital Week Nov 2023

Digitising peer support for disabled youth and families raising disabled children 

Dr. Annick Janson, Research Associate

Centre for Applied Cross-cultural Research, Victoria University of Wellington & EGL ltd.

Background

Existing research and practice about supporting disabled youth and families raising disabled children is often deficit-oriented and focuses on expert-provided service-provision models. 

Such resource-intensive approaches place formidable stress on both professionals, who report rising levels of burnout, on parents, who must provide care/support for their children without adequate experience to manage the wellbeing of their families (Kandel & Merrick, 2003) and on youth themselves. 

Peer support offers value-added solutions to reduce distress, improve wellbeing, and sense of belonging (Moore et al, 2018 & 2021), however barriers to attending face to face programmes limit participants’ exposure to this core informal support system. The use of virtual communities to promote end user involvement, peer-to-peer support and co-creation in the service innovation process is well documented, however only little is known about how they could be integrated into the health care innovation process (Amann & Rubinelli, 2017). 

Built upon positive psychology principles, the Now and Next program (nowandnext.org) is a group-based peer-support program that aims to empower and address the needs of youth and parents of disabled children (Heyworth et al., 2017). The program includes the innovative Pictability strengths-based vision setting tool (pictability.org) and peer-led sessions. Programme Level 1 and 2 form the basis of the peer emerging youth leadership and family leadership programmes. The last stage involves coaching tailored to the strengths and interests of each leader.

Key Messages - What will the audience learn?

The pivot to telehealth delivery enabled disabled participants and their families from remote sites to access support, minimise disruption to goal planning, and support youth and families learning to coach their children to thrive and learn supported decision-making. 

Digital solutions enabled the delivery of scalable, evidence based wellbeing interventions. People with lived experience from diverse backgrounds and minority groups are completing their training to lead changes in the disability sector for their families and communities. Virtual platforms and activities constituted one of the factors that attracted more young men and fathers than traditional face to face interventions.

Contents and Main points

Findings on the first 990 programme graduates showed significant increases in participant empowerment, knowledge, attitudes, participation, hope, agency, strategies, and wellbeing, with an average of 87 to 91% families reporting having achieved their goals through participation in the program.  

Further evaluation with a diverse international sample of 561 participants nested in 58 groups (female =74.59%; non-English speaker = 40.17%), tested with a priori three-level multilevel models for each outcome supported the effectiveness of an online program on participants' wellbeing, hopes in life, and sense of empowerment, with treatment effects varying based on group characteristics. 

With the recent online adaptations of the programme, including self-paced delivery, it is being distributed to remote local and global destinations: Australia, Canada, Singapore, Finland and Aoteroa, with plans to expand to Europe in 2024.

Potential active mechanisms include the development of wellbeing literacy, grounding in systems informed positive psychology, peer-to-peer contact, the sequenced structure of learning, innovative tools, and the focus on short-term achievable goals. The findings describe a highly promising model that could serve as an adjunct or supplement to existing pathways and models of disability care, with potential applications to people across the ability spectrum. 

Moreover, this process shows the potential to support a leadership pipeline as a sustainable model to develop emerging leaders and champions amongst peer users (Mahmic & Janson, 2018) and to test the multiple opportunities that  technology provides us to deliver transformative solutions (McLeavy, 2022).

References

Amann, J., & Rubinelli, S. (2017). Views of community managers on knowledge co-creation in online communities for people with disabilities: qualitative study. Journal of medical Internet research, 19(10), e320.

Heyworth, M.,  Mahmic, S. & Janson, A. (2017) Now and Next: A radically new way to build peer leadership in families raising young children with disability or developmental delay. International Journal of Disability, Community and Rehabilitation 

Kandel, I., & Merrick, J. (2003). The birth of a child with disability. Coping by parents and siblings. The Scientific World Journal, 3, 741-750.

Liam McLeavey, L. (2022). Optimising our digital mental health, addiction and wellbeing ecosystem - DWIG Report. Downloaded from: https://www.dha.org.nz/resources/dha-resources/60/optimising-our-digital-mental-health-addiction-and-wellbeing-ecosystem-dwig-report

Mahmic, S. and Janson, A. (2018) Now and Next: An innovative leadership pipeline for families raising children with disability or delay: https://citizen-network.org/library/now-and-next.html

Moore, T., Fong, M., & Rushton, S. (2018). Evaluation: Now and Next program. Plumtree Children’s Services, Inc. & Murdoch Children’s Research Institute. Parkville, VIC: Centre for Community Child Health: ​​https://www.rch.org.au/uploadedFiles/Main/Content/ccchdev/Plumtree-Now-Next-evaluation_Final-report_Aug-18.pdf

Moore, T. G., Prichard, P., & West, S. (2021). From consumer to partner: rethinking the parent/practitioner relationship. Downloaded from: https://apo.org.au/node/313949

Full reference list: www.tinyurl.com/our-pubs

Key words: Disability; Leadership: Virtual peer support

Screenshot from the conference