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Projects and partnerships

Carers NSW leads and participates in a number of research projects in partnership with government, not-for-profit organisations and academic researchers to improve the carer evidence base.

Recent projects

2020 National Carer Survey (2020)

The Carers NSW biennial Carer Survey was conducted nationally for the first time in 2020, with the support of an expert reference committee and the state and territory Carer Associations.

Young Carer Research Project (2020)

This project was conducted with 28 young carers aged 16-25 from across NSW. During the peak of the COVID-19 lockdown from March to June 2020, Carers NSW conducted online interviews and focus groups with 28 young carers to better understand their experiences and support needs and to learn how to engage with them more effectively. The project was conducted with the support of a project advisory group comprising researchers, young carers and sector experts.

A toolkit conveying learnings from the project to promote best practice engagement with young carers was published in 2021 based on learnings from conducting the research, and in partnership with a range of experts.

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Focus groups with culturally and linguistically diverse (CALD) carers in NSW (2018)

To increase our knowledge about the situation of CALD carers, and supplement the data collection of the 2014 Carer Survey, Carers NSW conducted six focus groups during May and June 2018 in the Greater Sydney and Wollongong areas. The project was conducted with the support of a project advisory group comprising researchers and CALD sector experts.

A toolkit conveying learnings from the project to promote best practice engagement with culturally and linguistically diverse carers was published in 2021 based on learnings from conducting the research, and in partnership with a range of experts.

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Current partnerships

Karen Hutchinson (Macquarie University): ‘Absent voices,’ understanding the needs of whole families living with parental ‘difficult to control’ epilepsy. (2019-2020)

This project aims to:

  • Address gaps in our knowledge-base of ‘whole family experience’ of living with parental refractory epilepsy in NSW, Australia.
  • Raise awareness of these families’ needs, and obtain crucial information to inform the co-creation of optimal service provision and health care delivery with wide stakeholder groups
  • Enhance community engagement in this subject matter, in order to understand, recognise and support the whole family living with parental refractory epilepsy.

Carers NSW is a partner investigator.

Funding: Small project grant by the UTS Centre for Carers Research

Michelle Villeneuve (University of Sydney): Disaster risk reduction practices that leave nobody behind (2019-2022)

This project aims to answer critical questions about how to assist people with disabilities (PWD) in disasters, what their support needs are and how they might help themselves to better prepare for disasters. Significance includes coupling a person-centred emergency preparedness tool with cross-sectoral processes to collect and use data about the support needs of PWD in emergencies, increase cross-sector communication and collaboration between emergency managers and community services, and improve equitable access for PWD to community level disaster risk reduction (DRR). The expected outcome will be the co-design of effective mechanisms that state & federal decision makers can use to scale-up disability-inclusive DRR across Australia.

Carers NSW participates in a advisory capacity.

Funding: ARC Linkage Grant.

Rebekah Grace (Western Sydney University): ReSPECT: Re-conceptualising services from the perspective of young people (2019-2022)

The ReSPECT project is aiming to make the voices of young people heard on issues of social and health service provision. It employs a participatory approach, engaging children and teens in re-envisioning the service system and in developing and trialling child-led service initiatives.

Carers NSW is on the steering committee.

Funding: ARC Linkage Grant.

Christy Newman (UNSW): My health, our family: documenting stories of family life in the context of HIV, Hepatitis B or Hepatitis C (Serodiscordance in family life) (2016-2020):

This project aims to produce the first empirical picture of Australian families affected by HIV, hepatitis C or hepatitis B. Qualitative research will be conducted with individuals, families and other stakeholders to reveal the interplay between diversity in family forms and understandings and experiences of serodiscordance, or mixed infection status. In developing a critical theory of serodiscordance that departs from the biomedical emphasis on ‘risk management’, novel insights are anticipated on accommodating difference and disruption, managing secrets and stigma, and responsibilising care and treatment within families. New and important knowledge will also be generated regarding the contributions of families to community wellbeing.

Carers NSW was on the steering committee.

Funding: ARC Linkage Grant.

For more information about these projects, please phone Carers NSW or email the Research team at research@carersnsw.org.au.