Incorporating Young Carer Voices: Overcoming Service Access Barriers through Young Carer Engagement

Young carers are children and young people aged 25 years and under who provide unpaid care and support to a family member or friend who is ageing or living with disability or a chronic illness. According to the Australian Bureau of Statistics 2018 Survey of Disability, Ageing and Carers (SDAC), there are approximately 83,700 carers up to the age of 25 years in New South Wales (NSW), which is 3.2% of this age cohort.
Many young carers are the main provider of support for a range of practical, specialist and emotional assistance which often exceeds expectations of what a child or young person can and should be responsible for. The demands of such a caring role can have detrimental impacts on young carers’ physical and mental health and social lives, yet many face significant barriers for accessing supports.
This contribution presents the findings of a research project conducted by Carers NSW to identify service access barriers for young carers. Based on findings from 25 interviews and a focus group discussion, stigma associated with the label “carer”; lack of youth-friendly service settings; lack of self-identification as carer; and a lack of cultural, age, and specific support services for different stages of caring were identified as constraining the use of support services. In contrast, positive attitudes of service providers encouraged the use of support services. These findings highlight an urgent need for more inclusive professional support for young carers.
In response, a toolkit was developed to increase the involvement of young carers in the development and delivery of services through capability building activities, research, and consultation. The toolkit provides youth-focused organisations and service providers with a detailed framework to better engage with young carers to improve mental health and social connection outcomes.

The Australian Bureau of Statistics (ABS) estimates that there are 260,700 young carers aged 25 years or under in Australia, more than 3% of all people under 25. Young carers are often at risk of experiencing mental ill-health as a result of their caring role, and often do not seek support. The situation is further complicated in that many young carers do not identify as such. In some cases, young carers and the people around them may not know what a young carer is, or young carers may be reluctant to identify themselves due to the potential implications of disclosing their family situation, which may lead to stigma, bullying or raise questions of child protection. Failing to identify as a young carer can adversely impact children and young people’s access to support at school or university, in the community and within service systems.

The Productivity Commission inquiry into Mental Health identified the important role of schools in identifying and supporting young carers to remain engaged in educational, social and support activities and achieve optimal outcomes. Carers NSW Young Carer Awareness Training, initially developed through a NSW Government grant for projects driven and led by young persons, is co-delivered with young carers, and aims to raise awareness of young carers with educators, improving their ability to identify young carers and respond to their needs.

This presentation will draw on findings from the Carers NSW 2020 National Carer Survey and associated Young Carer Research Project to highlight the importance of early identification of young carers within educational environments to encourage support seeking behaviours and thereby improve mental health outcomes for young carers. The presentation will also showcase the co-delivered Carers NSW Young Carer Awareness Training, and the importance of including young carers in the design and delivery of awareness and identification initiatives.

Co-design and co-production of health services incorporates the perspectives of both staff working within the system and individuals with lived experience of system. Ideally, co-design and co-production ensure the voices of people with lived experience are valued and are reflected in the choices made when designing and delivering services. In Australia, co-design and co-production of health services are becoming more commonplace, with some funding for services being dependent on the incorporation of co-design methodology. However, this process often needs to work within the constraints of a system which is bound by inflexible frameworks and practical need. These barriers can jeopardise an authentic co-design and co-production process which can result in a tokenistic, box-ticking exercise. Using the personal experience of the authors, a focus of this presentation will be exploring the process and challenges involved with the co-design and co-production whilst working within the constraints of the health system. A further focus will be how the voices of lived experience can be utilised in the co-production of research and evaluation. As research is typically conducted by researchers using homogenised methods of interpretation and analysis, involving lived experience in the research process honours unique perspectives in how research is designed, and findings are analysed. The experiences of the authors highlight the need for co-design and co-production to be an iterative circular process. Following the process of service development and implementation, the need for continued service improvement through co-designed research and evaluation can help to ‘close the loop’ and involve multiple perspectives at all stages.

Key learnings:
- How to create authentic co-design and co-production which honours the service user perspective
- what does co-produced research look like
- what are the challenges associated with implementing co-design and co-production in service design and evaluation

Please see Kat Thorn

Schools offer a unique opportunity to both identify young people with mental health difficulties and work with them in the preventative, intervention and support space.
There is so much that can be done in schools so that we can STOP watching our students fall through the crack and we can start making a difference and changing the mental health statistics!
It is about creating a culture of wellbeing in our schools rather than just implementing a programme.
It is about adopting a process that is done effectively and sustainably and gets MAXIMUM buy-in from staff, students and parents.
It is about using consistent language and approaches across classrooms to ensure that we make a difference in every child’s life!
And it is about looking beyond our school walls to work with others to make a significant and long lasting difference in the space of mental health.

During this presentation I will:
# Outline the role schools have to play in youth mental health & why the role of educators is so important
# Identify what schools and educators can do to improve student mental health and wellbeing
# Outline some key strategies to utilise such as
- Student Engagement Plans
- Student voice
- A sense of belonging and connection
- Resilience
- Use of a planned approach rather than just a programme
- Strong student services model & connections to outside
services
# Explain the development of a Culture of Wellbeing in schools
# Talk about a model for looking beyond the school walls and considering a cross-sector approach to youth mental health and wellbeing

During 2017, there were 47,915 children living away from their family home, under child protection orders in Australia, in what represents an increasing trend (AIHW, 2018a). The parental mental health and substance use comorbidity crisis in Australian communities is directly linked to up to 70 percent of children who currently reside in foster care (Canfield et al., 2017; De Bortoli, Coles, & Dolan, 2013; Doab, Fowler, & Dawson, 2015; McGlade, Ware & Crawford, 2009; Worley et al., 2005). Lack of appropriate intervention for mothers with substance use disorders means that they often do not enter treatment (Worley, et al., 2005), and maternal drug use either during pregnancy or their children’s early years leads to poorer developmental outcomes for children (Dawe, Hartnett, & Frye, 2008; Legler et al., 2012; Niccols et al., 2012).

The Grace Homestead Recovery Centre is a long-term residential rehabilitation recovery program, providing treatment for mothers who have a substance use disorder (SUD), co-occurring conditions (e.g., mental health, domestic and family violence), and who have up to two children in their care. Grace Homestead has operated since August 2018 as a small-scale, intensive intervention service, to provide a blueprint for long-term, parent-child treatment in Queensland, Australia.

Outcomes of the pilot study have shown a 72% sustained recovery success rate, meaning that 72% of graduates have remained abstinent, have their children in their care, and are in work or study.

It is our contention that the current child protection practice of removing children, and placing parents within the judicial system has failed, and is only perpetuating generational trauma. Conversations about child mental health, and reducing the prevalence of adolescent crime cannot exclude longterm residential parent-child recovery models.

The WayOut program has been operating for nearly 20 years, providing services and support for LGBTIQA+ young people and their families, including delivering education and training for professionals.

WayOut’s Planet GAGA engages and connects transgender, gender diverse and non-binary (TGDNB) children of primary school age, and their parents/carers, in a safe and affirming space. Research demonstrates that a sense of belonging, pride, social inclusion and connection are protective factors for good mental health and wellbeing. Delivered by highly skilled facilitators, Planet GAGA builds pride through fun, engaging and creative activities, such as art, active play, sharing circles and games. Planet GAGA involves parents/carers by providing opportunities to network, share and learn from each other.

There is limited research relating to the mental health and wellbeing of LGBTIQA+ young people of primary school age, with recent studies primarily focused on those aged 12-25. Although not included, findings from these studies can extrapolate to this younger cohort. Research consistently demonstrates that TGDNB young people experience poorer mental health than their counterparts in the general population. This is primarily due to discrimination, bullying and lack of family support.

WayOut has experienced an increasing number of inquiries relating to TGDNB young people under 12 who are too young to access existing social support programs, with questions relating to TGDNB young people transitioning to high school, connecting with others, being supported and maintaining pride in their identity. These parents/carers are seeking regular age-appropriate social support groups specifically for TGDNB young people as a protective factor for good mental health, and this is how Planet GAGA was born.

Information gathered from Planet GAGA contributes to building a rich evidence base to support this age cohort, through shared learnings in our broader LGBTIQA+ network.

Based on my recent publication in the medical forum: https://mforum.com.au/a-gps-guide-to-paediatric-anxiety/ and the work I have done with Emerging Minds developing toolkits for health professionals -
I will outline the GP's role in recognising and supporting families when it comes to emotional regulation in children and recognising anxiety disorders.
What Primary healthcare sees is changing and evolving yet most GP's feel ill-equipped to deal with the complexities of childhood mental health.

-Engaging children when discussing emotional health
-Recognising normal and 'abnormal' emotions
-Emotional regulation in children through the ages
-Pathways of care, how to intervene early when our services area already at capacity
-Dealing with anxiety disorders in children particularly from a GP perspective

The National Psychosocial Support Measure Adapted for 7 - 17 Years: Process and Outcomes

Accoras was funded by the Brisbane South PHN to develop and pilot a developmentally appropriate adaption of the National Psychosocial Support Measure (NPSM) for children and adolescents 7 - 17 years who have, or are at risk of, severe mental illness but are not eligible for support through the NDIS. This presentation will provide an overview of how the NPSM model was adapted to best meet the needs of younger clients. It will also detail the outcomes captured through an independent evaluation, including the lessons for future service planning and delivery for children and young people with severe mental illness.

Mental health organisations are expected to identify new best-practice interventions, and find ways to implement them within existing systems and service delivery protocols. This challenging task is further complicated by our interdependencies with other complex service systems, such as education, child protection, and alcohol and other drug services. This presentation will provide an example of one recent strategic implementation of a new mental health intervention. It will describe how multiple services systems were able to work together to stress test a best-practice intervention for infants in proximity to the child protection system, with the goal of identifying and overcoming systemic barriers to the effective implementation of an attachment-based in-home intervention targeting highly vulnerable families.

A large amount of research has been completed on the impact of abuse and neglect on children’s brain development, attachment and behaviour (Malinosky-Rummell & Hansen, 1993, pp. 68-79, Margolin & Gordis, 2000; pp. 445-479, Perry 2002, pp 79-100, van der Kolk 2005, pp. 401-408. Although there are individual differences in how children recover from trauma, for those children severely or chronically traumatised, the research has consistently shown longer term implications for the child’s mental health if left untreated (Dolby 1996, pp 13-24; Malinosky-Rummell, & Hansen, 1993, pp. 68-79). Lieberman and Van Horn have created a psychotherapy relational model for young children who have experienced trauma and authored two books titled Don’t hit my Mommy (2015) and Psychotherapy with Infants and Young Children (2009). Their work has been expanded into an 18 month intensive training manualised model called Child Parent Psychotherapy which is now taught around the world by Tulane University. Child Parent Psychotherapy has substantial empirical evidence of efficacy in decreasing symptoms of traumatic stress and restoring young children's normative developmental trajectories. This training session will provide the viewer with an overview of Child Parent Psychotherapy as an intervention framework and glimpses into the therapy room through short video vignettes of Child Parent Psychotherapy in action.

3 x Key Learnings:
• Understand the overview of the Child Parent Psychotherapy model
• View examples of clinical work through video recordings
• Gain an understanding of how treatment of childhood trauma can prevent longer term mental health difficulties