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Research Program on Informal Care and Caregiving

Status: 
Current

Informal Care

Within the sociology of informal care we draw upon a range of rigorous qualitative methods to explore illness experiences (e.g. chronic illness, end of life care, bereavement) from the perspectives of health professionals, patients and informal carers themselves. Informal care – unpaid material or emotional support from social networks – provides forms of intimacy and support that formalised care cannot. Care represents a central platform for human relations, intimacy, sense of place, sense of community and intergenerational ties. While diverse across cultures, relations of human kindness, comfort and help, continue to heavily inflect all forms of social life. Despite the challenges of shifting economic and family structures, how we care and are cared for by others remains a fundamental measure of meaningful fulfilling life. How, and by whom, care is provided has also become increasingly relevant in policy and practice. In the last few decades, broad economic restructuring and neoliberal shifts have constrained formal health care service provision, relocating a greater degree of responsibility for care onto individuals and communities. However, the ‘work’ associated with caring for and about people lacks visibility, and as a consequence the value of informal caring has consistently been under-recognised by policy makers and under-supported by health care providers. Despite this lack of visibility and support, informal carers are often centrally located within the negotiation and management of access to a range of formal care services and decision-making around care.

Who gets care, who does care, and why? 

In this program we explore the social correlates of care and caring. This includes attention to the ways by which some have greater access and opportunity to both formal and informal care than others. Focusing on a range of health and illness experiences, we explore how caring, and being cared for, is embedded in multiple economies of care, inflected by socio-cultural disadvantage and inequality. We also focus on the political, cultural, familial and gendered aspects of care, particularly the wide range of cultural scripts around familial and community-driven roles and responsibilities for caring, often interplaying with gender and socio-economic status. Our research reveals informal care as a site for the articulation of social disadvantage and inequity, shaped by social processes around gendered, class, and intergenerational relations.

Informal carers play a critical role in the community, yet who cares, what they experience, and how they contribute to social and community life, is not well understood. Our focus here is a critical analysis of the experience of, and capacity for, informal care in Australian communities - and one that can provide an evidence base for policy and service providers to improve the allocation of resources and better support the informal care sector. Our research, drawing on a range of case studies of illness experience, will provide a critical sociological analysis of informal care, mapping its character and significance, and the potential challenges to its role and contribution in Australian society.  

Key Investigators/Collaborators

  • Dr Emma Kirby (School of Social Sciences, The University of New South Wales, Australia)
  • Professor Alex Broom (School of Social Sciences, The University of New South Wales, Australia)
  • Dr Katherine Kenny (School of Social Sciences, The University of New South Wales, Australia)
  • Dr Alexandra Gibson (School of Social Sciences, The University of New South Wales, Australia)
  • Professor Jon Adams (Faculty of Health, University of Technology Sydney, Australia) 
  • Dr Zarnie Lwin (Medical Oncology, Royal Brisbane and Women’s Hospital, Australia)
  • Dr David Wyld (Medical Oncology, Royal Brisbane and Women’s Hospital, Australia)
  • Professor Patsy Yates (School of Nursing, Queensland University of Technology)
  • Dr Phillip Good (Palliative Care, St Vincent’s Brisbane and the Mater Hospitals Brisbane, Australia)
  • Dr John MacArtney (Oxford University, United Kingdom)

Recent Publications

Kirby, E., Broom, A., Good, P., Bowden, V., & Lwin, Z. (in press) Experiences of interpreters in supporting the transition from oncology to palliative care: A qualitative study. Asia-Pacific Journal of Clinical Oncology [Accepted: 24/04/16].

Gibson, A., Broom, A., Kirby, E., Wyld, D.K., & Lwin, Z. (2016) The social reception of women with cancer. Qualitative Health Research, [Published online 15/3/2016] doi: 10.1177/1049732316637591

Broom, A. Kirby, E., Kenny, K., MacArtney, J., Good, P. (2016 in press) Moral ambivalence and informal care for the dying. The Sociological Review

MacArtney, J., Broom, A., Kirby, E., Good, P., Wootton, J., Adams, J. (2015) Locating care at the end of life: Burden, vulnerability, and the practical accomplishment of dying. Sociology of Health and Illness. doi: 10.1111/1467-9566.12375 [online early]

MacArtney, J., Broom, A., Kirby, E., Good, P., Wootton, J., Adams, J. (2014) On resilience and acceptance in the transition to palliative care at the end of life. Health. doi: 10.1177/1363459314545696  [online early]

Kirby, E., Broom, A., Good, P. (2014) The role and significance of nurses in managing transitions to palliative care: A qualitative study. British Medical Journal Open 4:e006026 doi:10.1136/bmjopen-2014-006026

Kirby, E., Broom, A., Good, P., Wootton, J. & Adams, J. (2014) Families and the transition to specialist palliative care. Mortality 19(4): 323-341. doi: 10.1080/13576275.2014.916258

Kirby, E., Broom, A., Good, P., & Wootton, J., Adams, J. (2014) Medical specialists’ motivations for referral to specialist palliative care: a qualitative study. BMJ Supportive and Palliative Care. doi:10.1136/bmjspcare-2012-000376

Broom, A. and Kirby, E. (2013) The end of life and the family: Hospice patients’ views on dying as relational. Sociology of Health and Illness Vol. 35 No. 4 pp. 499–513. doi: 10.1111/j.1467-9566.2012.01497.x

Broom, A., Good, P., Kirby, E. & Lwin, Z. (2013) Negotiating palliative care in the context of culturally and linguistically diverse patients. Internal Medicine Journal. Vol. 43, pp.1043-1046 doi:10.1111/imj.12244

Funding and Projects

2015-2017, Australian Research Council Discovery Early Career Researcher Award (DECRA) [DE150100285] ‘Who cares? A sociological study of informal care at the end of life’, $372,000 [Kirby]

2016-18, Australian Research Council Linkage Grants [LP160100100] Cultural biographies, medical knowledges: A sociological study $270,000 [Broom, Kirby, Kokanovic, Adams]

2015-17, Australian Research Council Discovery Project [DP150100414] ‘The changing landscapes of survivorship: A sociological study of a life with cancer’, $359,700 [Broom, Kirby, Yates, Seale, Oliffe]

2014-2015, RBWH Foundation: The Weekend to End Women’s Cancer’s Diamond Care Grants. ‘Understanding and improving social support amongst women with cancer: A qualitative study’, $100,000 [Lwin, Broom, Wyld, Kirby, Cubitt]

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