Research project

Overview

In partnership with the Satellite Foundation and the Victorian Department of Health, the Bouverie research team completed a two-part study identifying the supports available for young people (≤25 years of age) whose home life included caring responsibilities for a family member with mental health and/or substance use issues.

Part 1 was a rapid systematic review while Part 2 included focus groups with young people, practitioners, and family members who young people care for. The aim was to gain deeper understanding of the roles of these young people and their experiences.

Throughout the project, we mentored a young person with lived experience. The young person contributed to shaping the interview guides for the consultations as well as to the synthesis of findings, gaining research experience within a friendly environment. This 2-part study identified key evidence to inform future policies, practice guidelines, and services to strengthen identification, engagement, referral pathways, and access to support services that meet the needs of young people and their families.

Key research highlights

Review findings:

• Young people with caring responsibilities could both be identified earlier in their caring journey and benefit from tailored services. However, the review found that only 31% of studies included tailored, personalised support.
• Most support programs were short-term with little evidence of ongoing support or long-term effects. Only a limited set of studies followed young people for more than 4 months (12%), necessitating further longitudinal research.
• Our findings underscored the disconnection between systems, with minimal collaboration and partnerships between services. For example, adult mental health services, substance, and/or addiction services were rarely connected to the young person’s school.

Consultation findings:

• Our consultations with young carers, family members and practitioners resulted in five major themes:
• Language/labelling - Young people don’t perceive themselves as carers, thereby limiting the reach of existing programs who use this label.
• Seeing the invisible experience of the young person – Most young carers remain hidden in plain sight within their schools or adult psychiatric services supporting the person they care for.
• The desired nature of support – Asking for important supports that address social and mental wellbeing.
• Barriers to support – Stigma and shame, being out of scope of service cultures or practice frameworks, limited resources and difficulty gaining parental consent.
• Towards better pathwa ys – practitioners and young carers listed the following as effective support options:
  • Informal networks such as family and friends: Only half reported that a friend knew about their circumstance.
  • Awareness by school and teachers of the situation and their support in staying engaged with school and education.
  • Recognition of their involvement in caring responsibilities by healthcare professionals.
  • Provision of practical and financial support.
  • Strengthening referral pathways by being purposeful and addressing the needs of the whole family.

Research publications and shared knowledge

Hameed, M., Opie, J., Vuong, A., Marchionda, S., Wallis, L., Khalil, H., Painter, F., Jewell, H., Cuff, R., Davidson, S., Martindale, B., Gor, D., Layley, T., McIntosh, J. (2023). Young people with caring responsibilities: Time for Action. Summary research findings, policy and practice recommendations. The Bouverie Centre, La Trobe University.

Research project team