Understanding carer’s experiences as health services users
W
ith strain on the formal aged care system, together with individual preferences to remain living at home as long as possible, there has never been a more important time to invest in developing tools, strategies, and systems that support carers of people living with dementia (PLWD). However, the question “What do family carers need and want most from the government, health care systems, service providers, the community?” can remain unknown. A/Prof Celia Harris and team conducted research as a collaboration between health professionals, Carers NSW, and researchers with expertise in psychology, with an objective to bring translational perspectives on the carer experience. The longitudinal study aims to understand the journey of carers of PLWD as they navigate the health system and support options over time. A total of 15 family carers participated in the study, representing a range of backgrounds and stages in the dementia journey. “In our analysis, we examine factors and values that influence carers’ experiences of contact with service providers and map their preferences against what is being offered, to understand potential gaps in service provision,’ explains A/Professor Harris “We found several themes in our data such as the impact of individual differences (cultural background, financial situation, and social support) impacting carers’ experiences when navigating the aged care system. Carers also provided feedback on what they found helpful and unhelpful on their dementia journey. The solutions provided by carers included a centralised ‘onestop shop’ for accessing dementia services and a dedicated case worker to assist carers to navigate the complexities of the journey at the key time points when they are needed.”
4 In-SPHERE
IN BRIEF
Enhancing collaboration across Advanced Health and Research Translation Centres
S
PHERE’s Cancer Clinical Academic Group and Sydney Cancer Partners (SCP) (Sydney Health Partners Cancer Clinical Academic Group) are working together to enhance and encourage collaboration across Advanced Health and Research Translation Centres (AHTRCs.) Both groups received a $7M Translational Research Capacity Building Grant from Cancer Institute NSW in 2021. One of the key performance measures of this funding was to implement a joint funding scheme that would support collaborative endeavours between the groups. The Strategic Enhancement Grant (SEG) Scheme is in response to these criteria. The aim of the SEG was to foster a broad-based initiative that would increase translational cancer research funding in NSW. The specific goal was to support leaders of mature translational research programs to improve their chances of making successful applications for substantial research funding to national, international or commercial sources, by encouraging broader collaborations. All fields of research were eligible, with a requirement to span multiple phases of the translational cancer research pipeline.
Applications were led by two Chief Investigators, one SPHERE and one SCP, with research activity spanning both organisations. Evaluation criteria were 1) competitiveness of the proposed translational research program in relation to the target funding scheme, 2) potential for the grant to increase the chances of a successful application, and 3) alignment of the application to research objectives which included priorities of the NSW Cancer Plan. Following an extensive two-stage review process, two applications were funded. Each group receives $140k per year for up to two years. SPHERE Cancer CAG and SCP equally contribute to the funding. Title: Validating a physiological melanoma immune model to rapidly test novel immunotherapy combinations. Chief Investigators: Professor Jeff Holst (UNSW) and A/Professor James Wilmott (Melanoma Institute Australia, University of Sydney). Title: Telomere remodelling in drug resistant breast cancer. Chief Investigators: Professor Hilda Pickett (Children’s Medical Research Institute) and A/Professor Elizabeth Caldon (Garvan Institute of Medical Research). By Stephanie Macmillan