Aim: Carers are an under-represented cancer population, with unique and specific needs that are often overlooked. Indeed, many existing “carer support” interventions focus on how the carer can better care for the patient, rather than themselves. Given the poor psychological and physical health outcomes experienced by cancer carers, there is an urgent need to better understand carers' unique needs and design interventions that are truly carer-centred.
This presentation will report on the co-design of two carer-focussed interventions: eTRIO – an online program to empower carers when communicating with health professionals and CarersCanADAPT – an online cognitive behavioural therapy intervention for carers with anxiety and/or depression.
Methods: The Person-Based Approach (Yardley et al, 2015) was used to ensure intervention content and design were grounded in end-user needs and preferences. Qualitative interviews with stakeholders (carers, people with cancer, oncology health professionals) were conducted across the project continuum. Ensuring diversity of stakeholder experiences was key, with input sought from carers with varying demographics and caregiving roles/intensity. All interviews were transcribed verbatim and analysed using qualitative methods.
Results: Sustained stakeholder engagement led to key insights into the unique needs and experiences of carers, as well as barriers and facilitators to successful intervention implementation. Indeed, the patient-focused nature of Australian healthcare and limited resources allocated to carer-specific support was a crucial barrier that needed to be considered during intervention design. Carers needs and roles throughout the cancer trajectory were distinct from the person they care for, underscoring the importance of tailored interventions.
Conclusions: In designing carer-centred interventions, carers and other stakeholders must be meaningfully involved in co-design at all stages of planning, development, refinement and user testing to ensure that carer experiences are accurately represented and their supportive needs are met in a way that is accessible and facilitates program uptake and implementation.