Oral Presentation 2025 Joint Meeting of the COSA ASM and IPOS Congress

Co-designing lived experience peer support videos for LGTBQIA+ in cancer care (#183)

Natalie Winter 1 , Tyrone Cai 2 , Hannah Jongebloed 1 , Amy Middleton 3 , Hailey Moroney 3 , Andrew Lyall 4 , Anna Ugalde 1 , Lucy Kerr 1 , Stephanie Cowdery 1 , Elisabeth Coyne 5 , Karin B Dieperink 6 , Vicki White 7 , Patricia Livingston 1
  1. Centre for Quality and Patient Safety Research, School of Nursing and Midwifery, Institute for Health Transformation Faculty of Heath, Deakin University, Melbourne, Australia
  2. Deakin University, Burwood, VIC, Australia
  3. Drummond Street Services , Melbourne
  4. Carers Victoria, Melbourne
  5. Griffith University, Brisbane
  6. Odense University Hospital, Odesnse
  7. School of Psychology, Deakin University, Melbourne, Victoria

Background/rationale

People caring for, or living with cancer from lesbian, gay, bisexual, transgender, queer, intersex or asexual+ communities (LGBTQIA+) often experience unique needs across the cancer trajectory, which can prevent or delay them from seeking and receiving medical or supportive care.

Digital resources can provide people affected by cancer with access to information and support on demand. There are limited resources tailored to the specific needs of people affected by cancer from LGBTQIA+ communities. Following the development of a smartphone app for carers of people with cancer, additional studies have been undertaken to tailor the app for people from LGBTQIA+ communities. This study reports on two steps of a user-centered design process to identify gaps in supportive care and develop peer support videos.

Methods

Interviews with people from LGBTQIA+ communities caring for or living with cancer were undertaken. In step one of the user-centered design process 'understand context of use' explored gaps in care, the potential for smartphone apps to meet peoples’ needs, and generated ideas for how smartphone apps can fill existing gaps. Themes were developed using thematic analysis, and the need for peer support was identified.

Step two of the UCD process 'specify requirements' is in progress and focuses on identifying the requirements of peer support videos including the number of videos, length, and topics to be covered. Content analysis including frequencies will be used to identify the most prevalent topics and user preferences for peer support videos.

Impact on practice

Support from clinicians and informal networks can negatively or positively impact on LGBTQIA+ people’s experience of cancer care. Peer support which intersects cancer and LGBTQIA+ health has the potential to fill gaps in care, by addressing mental wellbeing and practical support needs.

Discussion (which may include lessons learned, future directions)

This study, grounded in the insights and contributions of the LGBTQIA+ community, will inform how technology can be leveraged to address existing gaps in cancer care for LGBTQIA+ people. The next step in this study is to embed the videos into our existing smartphone app and measure the effectiveness of the app in a randomised controlled trial.