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Brightwater Care Group is a not-for-profit organisation supporting people of all ages to live a better quality of life. It recognises the important role that research plays in improving the lives of clients, as well as the health of the broader community.
In 2019, a Lotterywest grant supported Brightwater to co-create, test, and evaluate interventions and produce resource materials to support children, youth and young adults impacted by a parent with younger onset dementia (YOD) or acquired brain injury (ABI).
The research involved children with a parent with YOD or ABI, families and staff over a two-year period. Books, guides and resources for children and families were produced, and are now included as part of routine care with Brightwater and serve as ongoing support for children and young people, supplementing support they may receive in the community. Resources produced have been disseminated broadly and are available online and in hard copy.
To trial a model aimed at supporting children and young people affected by a parent with younger onset dementia (YOD) or acquired brain injury (ABI).
Brightwater Care Group
10/1/2019
$491,066
Lotterywest
$88,000
Perth Metropolitan
Children, young people, families, people with disabilities
Resources were developed in consultation with families and professionals, as part of the research, including:
- A children’s picture book and two novels for young readers featuring characters living with the changes that parental YOD or ABI brings into their lives.
- A workbook to help younger children learn about the brain and brain injury.
- A matrix of recommended resources, websites and interventions to help adults and children understand and communicate about the impact of parental YOD or ABI.
- Guides for affected parents, co-parents and professionals to encourage a consistent approach when supporting affected children.
Key findings include:
- Children had to make significant adjustments to their lives and relationships with their parents. They often felt alone, different, and experienced an ongoing sense of loss. Communicating about parental YOD and ABI presented considerable challenges, further complicating their emotional landscape.
- Children expressed a strong need for connection with the affected parent, as well as social and professional support. Developmentally appropriate information was crucial for helping them navigate their experiences.
- Isolated solutions implemented at a single time point were insufficient in reaching many children or assisting professionals. Significant gaps in age-appropriate and quality resources were identified.
- Development of guides providing recommendations and strategies for adults supporting young people coping with parental YOD or ABI.
- Creation of a matrix of recommended resources, websites, and interventions.
- Publication of children’s books and additional resources to support children and young people
- Isolated solutions implemented at a single time point were not effective in reaching many children or assisting professionals.
- There is a need for ongoing and integrated support rather than one-time interventions.
Opportunity
A parent's diagnosis of younger onset dementia (YOD) or acquired brain injury (ABI) significantly alters a young person's life. Children and youth are especially vulnerable to the impact of a parent’s diagnosis. Medical treatments and hospitalisation of the diagnosed family member changes family roles, introduces periods of separation, upsets daily routines, and disrupts family communication. Many children and youth also contend with the progressive decline and/or life-threatening nature of their parent’s illness throughout the treatment course.
This research partnered with families and professionals to understand the impact of such diagnoses on dependent children and young adults (0-24yrs old). The research was conducted by Dr Angelita Martini, Brightwater Research Centre, Associate Professor Jeneva Ohan, UWA, Psychological Science and Robyn Bett, Clinical Psychologist, Brightwater Care Group.
The goal was to provide interventions and resources to the sector that can be readily integrated into routine care.
The research highlighted that while young people face numerous challenges, recognising and addressing their needs can help them cope effectively.
The research aimed to deliver outcomes for three specific groups and had two main objectives:
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Children, youth and young adults (age 0-24 years)
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The affected parent and other parent, and family
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Professional in the sector (health, education, social etc)
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Co-create a support intervention with families and professionals for children, youth and young adults (age 0-24 years) impacted by a parent with an acquired brain injury or younger onset dementia
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Test the feasibility and utility of resources to support children, youth and young adults (age 0-24 years) affected by a parent with an acquired brain injury or younger onset dementia.
Approach
The research adopted a comprehensive approach, to understand the impact of parental injury and illness on dependent children and young adults.
- Existing support materials were evaluated, and a systematic literature review was conducted.
- In-depth interviews with clients, parents, children, and health professionals provided personal insights.
- Clinical psychologists made qualitative observations to understand the emotional and psychological impacts.
Based on these findings, the following steps were taken:
- Resources and materials were developed to address identified gaps.
- Professional development seminars and workshops were organised to educate and train health professionals.
- A survey of health professionals was conducted to gather their perspectives and feedback on the developed resources and strategies.
Impacts and Outcomes
The research revealed that children had to make significant adjustments to their lives and relationships with their parents. They often felt alone, different, and experienced an ongoing sense of loss. Communicating about parental YOD and ABI presented considerable challenges, further complicating their emotional landscape.
Interruptions to child development were also noted, highlighting the need for timely adult intervention. Children expressed a strong need for connection with the affected parent, as well as social and professional support. Developmentally appropriate information was crucial for helping them navigate their experiences.
The research found that isolated solutions implemented at a single time point were insufficient in reaching many children or assisting professionals. Significant gaps in age-appropriate and quality resources were identified. To address these gaps, resources were developed in consultation with families and professionals, as part of the research, including:
- A children’s picture book and two novels for young readers featuring characters living with the changes that parental YOD or ABI brings into their lives.
- A workbook to help younger children learn about the brain and brain injury.
- A matrix of recommended resources, websites and interventions to help adults and children understand and communicate about the impact of parental YOD or ABI.
- Guides for affected parents, co-parents and professionals to encourage a consistent approach when supporting affected children.
The children’s books supported children and young people to feel understood, connected and recognised. 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 support they may receive in the community.
What worked
- Development of guides providing recommendations and strategies for adults supporting young people coping with parental YOD or ABI.
- Creation of a matrix of recommended resources, websites, and interventions.
- Publication of children’s books and additional resources to support children and young people.
Key Challenges
- Isolated solutions implemented at a single time point were not effective in reaching many children or assisting professionals.
- There is a need for ongoing and integrated support rather than one-time interventions.
Bett, R.& Ohan, J. (2021). The Get Around (A. Mutton, Illus.). Brightwater Care Group.
Bett, R. & Ohan, J. (2021). The Amazing Brain (J. Low, Illus.). Brightwater Care Group.
Bett, R. & Ohan, J. (2022). Helping children and adolescents when a parent has a brain injury. A guide for Parents, Caregivers, and Professionals. Brightwater Care Group, Perth, WA, Australia.
Bett, R. & Ohan, J. (2022). Helping children and adolescents when a parent has younger onset dementia. A guide for Parents, Caregivers, and Professionals. Brightwater Care Group, Perth, WA, Australia.
Ohan, J. & Bett, R. (2021). Jordan’s Mum (A. Mutton, Illus.). Brightwater Care Group.
Ohan, J. & Bett, R. (2021). Ground Control (A. Mutton, Illus.). Brightwater Care Group.
Ohan, J. (2022). School advocacy guide. Responding to needs of young people when a parent has dementia or brain injury. Brightwater Care Group.
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