Co-designing integrated child and family hubs for families experiencing adversity

Abstract

There is increasing interest internationally in the potential for integrated care hubs to improve mental health outcomes for children experiencing adversity.¹ Termed “child and family hubs” throughout this article, these hubs refer to collaborative initiatives integrating health, education and/or social care, typically in one site. In Australia, the 2020 Productivity Commission Mental Health Inquiry identified the need for significant reform, including focus on early intervention and person-centred care in childhood and adolescence, to address the shortcomings of siloed national mental health care systems and to increase accessibility of care for families at greatest risk of experiencing adversity.² Childhood adversity is a broad term used to describe negative early life experiences and circumstances, such as socio-economic disadvantage, abuse, neglect, family violence, parental mental illness, bullying and discrimination.^{3, 4} The cumulative and negative impacts of childhood adversity on intergenerational health and wellbeing are significant, and necessitate a multisectoral response.⁵ This article is part of the 2024 MJA supplement for the Future Healthy Countdown 2030,⁶ which examines how participating affects the health and wellbeing of children, young people and future generations. We look at this from the perspective of a public community paediatric service in metropolitan Sydney, involved in co-designing child and family hubs to deliver health services to families experiencing adversity.

There are currently over 460 Australian child and family hubs that focus on building connections between existing services to create a “one-stop shop” for families seeking support in relation to health, development and wellbeing.^{7, 8} Although organisational adaptation varies by context (Box 1), several core components of child and family hubs can be identified. These include co-design of hub components with families, non-stigmatising entry, family-centred care, parental capacity building, co-location of services, workforce development, and local leadership.⁹

To best respond to the needs of local communities, a robust co-design of child and family hubs should involve people with lived and professional experience of health and social care service utilisation and provision. Co-design is a method on the continuum of participatory approaches to service development and evaluation, which are essential for preventing services that fail to engage vulnerable families by not meeting their needs, or by failing to optimise cultural safety.¹⁰ We define co-design as the “active involvement of a diverse range of participants in exploring, developing, and testing responses to shared challenges”.¹¹ Given the increase in utilisation of co-design in research, clear reporting of the methods, process and tools of co-design is crucial for advancing the health service and system knowledge base.¹² To this end, we describe the experience of a metropolitan public community paediatric service in Sydney Local Health District (SLHD) in collaborative co-designing child and family hubs across health, education and digital initiatives. Each case study provides practical detail regarding the involvement of children and families in service design and challenges encountered, to inform learnings for future developers of integrated child and family hubs.

The National Health and Medical Research Council (NHMRC) Centre of Research Excellence in Childhood Adversity and Mental Health oversaw the co-design of two child and family hubs, seeking to improve the mental health of children (aged zero to eight years) by earlier detection and response to family adversity.¹³ One hub was developed in Wyndham Vale in Victoria, and a second in the SLHD Marrickville Community Health Centre in New South Wales. The Wyndham Vale Child and Family Hub was co-designed using mixed methods across four stages, between February 2020 and November 2021 (Box 2). Stages 1 and 2 of this process were replicated in Marrickville between August and November 2021. Researchers involved in the co-design process did not have concurrent clinical responsibilities within the hub sites. Learnings were shared across sites to develop the child and family hubs in an iterative manner, responding to the needs and preferences of service users and providers.¹⁰

Digital innovations can provide high reach, low stigma solutions for increasing accessibility to services and supports found within physical child and family hubs. In 2021, funding was obtained via a NHMRC Partnership Grant to co-design and evaluate a digital platform for supporting the mental health needs of families of children (aged zero to twelve years), with particular emphasis on families experiencing adversity. A child and family eHub is now under development, which aims to improve mental health outcomes for children and families experiencing adversity by facilitating access to the right services and caregiver information, at the right time. Through a proportionate universalism approach,¹⁸ the eHub will seek to deliver universal services at the scale and intensity needed by the end user (Box 4). Many collaborators involved in this initiative were involved in the implementation and evaluation of the child and family hubs in Wyndham Vale and Marrickville. These sites, along with a third site in Fairfield, NSW, have been selected as test sites for the eHub.

School-based hubs have an expanding evidence base globally and act as familiar and convenient locations for children and families to access health services.^20-23 In the SLHD, a pilot school-based integrated care program was established in response to community members voicing a desire for access to health services via integrated “one-stop shops” located in schools.²⁴ This idea arose through a broad community consultation process embedded within the SLHD Healthy Homes and Neighbourhoods interagency care coordination initiative.²⁵ Yudi Gunyi School was identified as an ideal location, due to the high needs of its students. Yudi Gunyi School is a specialised secondary school for students experiencing challenging behaviours that preclude them from attending mainstream schooling. In this school, the Ngaramadhi Space model of care was co-designed with the Aboriginal community over a decade, to provide holistic, multidisciplinary and child and family-centred care (Box 5).²⁶

There is an increasing expectation that health and social services will be co-designed with end users. The collective experience of co-designing child and family hubs across three contexts (health, education and digital settings), as described in this article, has highlighted several key learnings. Across all hubs described, families of children experiencing adversity expressed a need for assistance with service navigation and whole-of-family support. Although implementation of these principles varied across hubs, stakeholders with lived experience of adversity expressed the importance of their involvement in the service design and implementation process.

The cases described in this article demonstrate that co-design involving families experiencing adversity is possible but challenging. Co-design of the child and family hubs in Wyndham Vale and Marrickville followed a staged approach within a well defined theoretical framework.¹⁰ This approach required substantial investment in terms of both funding and time, and was achieved with employment of dedicated research personnel. Formal evaluations of the child and family hubs are ongoing, but the value of the robust approach to the co-design process employed in Wyndham Vale was assessed specifically, using the Public and Patient Engagement Evaluation Tool (PPEET).³² Co-design participants of varying backgrounds were found to derive satisfaction from the process of working collaboratively to generate mutual learning, and the process was seen to increase local trust in, and ownership of, the hub.¹⁰

The importance of trust and community ownership was reiterated in the co-design of the Ngaramadhi Space school-based hub, where a pragmatic approach to co-design was required. The community-driven nature of the program meant that action (ie, the urgent assessment of students with high needs) took precedence over formal co-design within a research framework. By listening to the community and taking a stepwise approach to implementation, we sought to gain the trust of the community, students and families. As trust increased, measures to involve families in model refinement were developed; for example, consumer satisfaction surveys and a formal research qualitative evaluation with ethics approvals.⁹

The process of building trust and deeply rooted connections with the community took years and is ongoing, as both community stakeholders and providers changed over time.

For services catering to families experiencing adversity, the challenge of engaging parents and caregivers in co-design is compounded by a range psychosocial complexity. The health-based hubs and eHub described here illustrate that it is achievable, and the Ngaramadhi Space experience demonstrates the importance of community representatives, where very significant care needs hinder direct engagement of caregivers in co-design.

Children and young people can contribute directly to co-design of services for families experiencing adversity, as demonstrated in the development of the Wyndham Vale Child and Family Hub. However, the power discrepancy between children and adults is amplified in this context, and a reflexive approach is essential. Consideration of developmentally age-appropriate communication and child-friendly settings are essential. As illustrated in the Wyndham Vale hub, creative approaches involving participatory art-based activities can be useful.

For services catering to younger children and families experiencing adversity, collaboration with parents and carers is key. Self-advocacy becomes increasingly important for children and adolescents over time, and engaging children and young people in co-design processes is essential but challenging. Further research is needed to explore how the voices and perspectives of younger children can be meaningfully embedded into service development in Australia, particularly for services catering for families with complex needs. Participatory approaches to health service design, involving genuine partnerships with children, young people and families, are feasible with sufficient investment in resource and workforce skills. However, further research is needed to inform which approaches are most robust and authentic for specific circumstances, and which result in higher quality service design and outcomes.

The Centre of Research Excellence in Childhood Adversity and Mental Health is co-funded by the NHMRC and Beyond Blue (Harriet Hiscock is the principal investigator). The Child and Family eHub is funded by an NHMRC Partnership Projects grant (Sharon Goldfeld is the principal investigator). The Ngaramadhi Space has no external grant funding.

Not commissioned; externally peer reviewed.