Currently, children and young people with an affected parent struggle with ad-hoc support and a lack of appropriate resources tailored to supporting their needs.

Hospitalisation and medical treatments disrupt family roles, routines, and family relationships. Many children and young people also contend with the progressive decline and the life-threatening nature of their family member’s illness.

Further, while children who develop mental health problems may be referred to mental health services, these services are directed at the mental health symptoms, and do not address the unique challenges these families face.

1) Resource and website evaluation

2) Systematic literature review

3) In-depth interviews with clients, parents, children and health professionals

4) Qualitative observations by clinical psychologists

5) Development of resources and materials

6) Professional development seminars and workshops

7) Survey of health professionals.

• Children needed to make adjustments to their lives and relationship with parents.
• Child feelings and emotions were significantly impacted, feeling alone and different, and experiencing an ongoing sense of loss.
• Challenges communicating about parental ABI and YOD.
• Interruptions to child development.
• Children need adults to understand their needs and to respond in a timely way.
• Children need connection with the affected parent.
• Children need social and professional support.
• Children need developmentally appropriate information.
• Isolated solutions implemented at a single time point would not reach many children or assist professionals.
• Gaps were found in age-appropriate and quality resources.
• Resources to fill these gaps were developed in consultation with families and professionals, and designed to readily be integrated into routine care. Specifically, 4 children’s books, professional guides, and matrix of evaluated resources, websites and interventions.

Matrix of recommended resources, websites and interventions:

• Resources for children, adolescents and young adults with a parent who has a brain injury
• Resources for children, adolescents and young adults with a parent who has younger onset dementia

The children’s books published as a result of our research support children and young people to feel understood, connected and recognised.

Resources were also developed for affected parents, co-parents and professionals to encourage a consistent approach when supporting affected children:

• Helping children and adolescents when a parent has a brain injury - A guide for parents, caregivers and professionals

The children’s books and further resources are now included as part of routine care with Brightwater. They serve as ongoing support for children and young people, supplementing care they may receive in the community.

Continue professional seminars.

Dissemination of findings and resources to the community.

Work with sector-wide services and stakeholders that support impacted families.

For any further information, please contact [email protected]