Developing video resources to reduce the burden of caring for persons with brain cancer

  • Elisabeth Coyne
    Corresponding author. School of Nursing & Midwifery Griffith University, Logan Campus, University Drive, Meadowbrook, Qld, 4131, Australia.
    School of Nursing & Midwifery, Menzies Health Institute, Griffith University, Queensland, Australia

    University of Southern Denmark, Denmark

    Family Focused Healthcare Research Center (FaCe), Department of Clinical Research, University of Southern Denmark, Denmark
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  • Natalie Winter
    School of Nursing and Midwifery, Faculty of Health, Deakin University, Melbourne, Australia
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  • Joan Carlini
    Griffith Business School, Menzies Health Institute Queensland, Australia
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  • Julia Robertson
    Department of Oncology, Academy of Geriatric Cancer Research (AgeCare), Odense University Hospital, DK, 5000, Odense C, Denmark
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  • Karin Dieperink
    School of Nursing & Midwifery, Menzies Health Institute, Griffith University, Queensland, Australia

    University of Southern Denmark, Denmark

    Department of Oncology, Academy of Geriatric Cancer Research (AgeCare), Odense University Hospital, DK, 5000, Odense C, Denmark

    Family Focused Healthcare Research Center (FaCe), Department of Clinical Research, University of Southern Denmark, Denmark
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Published:August 26, 2022DOI:


      • Brain cancer diagnosis leads to complex challenges for the family to manage, such as personality changes and seizures.
      • Family provides most of the care and support after cancer diagnosis, yet they often struggle with understanding information.
      • Authentic video resources available via YouTube enable the person affected by cancer to access and understand information.
      • Co-design enables resources developed with the consumer for the consumer and improves consumer outcomes.



      Co-designed and accessible video resources improve an understanding of health information and can reduce unmet needs for caregivers of persons with brain cancer. This study developed and evaluated video resources that provide health information for persons caring for someone with brain cancer.


      A co-design approach with consumers was used to design, develop, and evaluate video resources.


      Twelve videos were designed with persons with brain cancer, caregivers, and health professionals. The video design and topics were informed by current literature. The videos were filmed with consumers to ensure authenticity. The evaluation was completed using data analytics and seven interviews with consumers. Content analysis identified four themes: needing information, authenticity, visual engagement, and key messages. The video length and presentation were important aspects to engage the caregiver, particularly when dealing with stress. The storage on YouTube enabled accessibility and various presentation formats met different learning styles.


      The development of co-designed health information videos provided resources to improve caregivers understanding of the information provided by the health professionals. The videos were easy to access and able to be viewed at home with family.


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