Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2024

Partnering to address a gap in support for cancer caregivers: Co-designing the iCanSupport Program (#534)

Bróna Nic Giolla Easpaig 1 2 , Bronwyn Newman 2 , Judith Johnson 3 , Ursula M Sansom-Daly 4 , Lucy Jones 5 , Lukas Hofstätter 6 , Eden G Robertson 4 , Reema Harrison 2
  1. Charles Darwin University, Haymarket, NSW, Australia
  2. Australian Institute of Health Innovation , Macquarie University, Sydney
  3. School of Psychology, University of Leeds, Leeds, UK
  4. Behavioural Sciences Unit, School of Clinical Medicine, Discipline of Paediatrics & Child Health, UNSW Medicine and Health, Randwick Clinical Campus, UNSW Sydney, Sydney, NSW, Australia
  5. Neuroblastoma Australia, Sydney
  6. Carers NSW Australia, Sydney

Aims: This project addresses the dearth of collaboratively-designed programs to support carers feel better equipped to provide care for a family member or friend diagnosed with cancer. The aims are to: 1) adapt an evidence-based resilience-enhancing intervention for use with carers via co-design; and 2) document and enhance understanding of this collaborative process.

Methods: A qualitative research design was employed to examine the process of intervention adaption and the associated outcomes. Two co-design workshops were conducted with carers and health professionals (n=5) to draft program adaptations tailored for cancer carer populations. The program prototype was then refined and finalised in meetings with three key stakeholder groups involving staff and consumers of cancer and carers support organisations (n=13). Thematic analysis was undertaken of workshop and meeting transcripts in addition to written feedback provided by contributors.

Results: Major program adaptions consisted of the generation of purpose-designed case studies and revising the structure and modes of program delivery. The themes of: “creating value for carers”, “multiple contributors to carer distress”, and “the need for flexible implementation”, captured the core areas of program development in the co-design process. Key to refining the program via stakeholder consultation were the themes: “diversity in carer journeys” and “creating impact for carers”. This process resulted in a novel program, revised to be applicable to experiences of cancer carers: “iCanSupport”.

Conclusions: The meaningful involvement of carers and those who support them in the development of interventions is under-utilised, but much needed. The adaptations described would not have been possible without the insights from the lived experienced of those involved. The program designed to help carers build skills and promote resilience to better navigate stress arising on the carer journey; addressing a gap in currently accessible supports. Further evaluation is needed to assess effectiveness outcomes.