Researching with carers: Research workshop
Social researchers and practitioners, policymakers and carer advocates are invited to explore the topic of working with and beside carers at our research workshop.
Presented by the UTS Centre for Carers Research and supported by the Carers Investment Program, NSW Department of Communities and Justice.
A carer provides ongoing, unpaid help to someone who needs it because of a disability, long-term or life limiting illness, mental illness, dementia or ageing.
The workshop provided a generous and rigorous platform for researchers working with and for carers to share their work with a group of scholars, researchers and policy practitioners. With a particular focus on the top-to-bottom practical aspects of researching with carers, scholars and practitioners shared their work and their lived experience in a workshop divided into two sessions: Morning and Afternoon.
The workshop was attended by higher degree and early career researchers (HDR & ECR); social researchers and practitioners; carer research scholars; carer policy makers; carer advocates and student carers interested in a future in research. An important aim of the workshop was to establish a Community of Practice across the Carer Research community.
Non-work caregiving responsibilities and changes in the job scope of female employees: A cross-cultural study in 19 countries
We examine whether the job tasks and responsibilities of employees change when they provide unpaid caregiving for elderly or disabled family members outside of work. We extend this to consider the extent to which the relationship between caregiving and employee job tasks and responsibilities (i.e., job scope) is moderated by the level of gender egalitarianism in a society. Data were collected from employees with caregiving responsibilities in 19 European countries. Results of regression analyses support our hypothesis that gender egalitarianism moderates the relationship between caregiving frequency and the scope of a job. Specifically, greater caregiving frequency is associated with reductions in job tasks and responsibilities when gender egalitarianism is low but not when it is high. Our findings suggest that job scope and cross-cultural variables are important considerations for research at the interface of work and caregiving.
H1: Caregiving frequency is negatively associated with the scope of an employee’s paid job. The greater the frequency of caregiving, the lesser the scope of the employee’s job.
H2: Gender egalitarianism is positively associated with the job scope of employees with caregiving responsibilities. The greater the degree of gender egalitarianism, the greater the scope of an employee’s job.
H3: Gender egalitarianism moderates the negative association between caregiving frequency and the scope of jobs undertaken by employees. Specifically, the negative relationship between caregiving frequency and job scope will be stronger in less gender egalitarian countries.
Precarious Care: Exploring care theory through the lens of precarity, with reference to aged care in Australia.
In this paper I discuss the concepts of precarity and precariousness and their application to critical care theory. Precarity and precariousness are not new terms but over the past two decades they have been increasingly applied and developed to critique the social and economic outcomes of changes in employment, social inclusion and social policy. In an era in which policy in each of these fields has been increasingly shaped by marketization, I explore how these concepts can be applied to the field of aged care, with particular reference to our local situation in Australia.
Critical care theory, I argue, has been an important development over recent decades, inspiring and informing a blossoming of research on the previously invisible field of care. It has also helped create the space for the carers movement, underpinned a greater understanding of the importance of the links between gender, dependency and care, and most recently helped draw attention to the dependent position of the care workforce and its links to immigration and cross-national care chains. Yet care theory typically focusses on caregiving (providing care) and its accounts of care receipt remain relatively underdeveloped. It also reflects and reproduces the highly fragmented field of care, so that research on carers is seen as quite distinct from research the care workforce, the impact of different forms of care provision on care recipients or the design of policies.
Understanding care as a form of precarity offers new insights into care as a necessary response to human vulnerability while also providing a powerful diagnosis of current responses in both paid and unpaid care. A distinction is made between what Martha Fineman has termed the ‘inevitable’ or naturally occurring dependencies of life and the socially constructed risks and dependencies produced as a result of the way that resources are controlled, managed and made available. This analysis is then applied to understand recent changes in the provision of care in the relatively affluent nations that boast systems of welfare capitalism. Despite the reductions in precariousness that occurred following the expansion of the welfare state, the increasing marketization of care, it will be argued, is again leading to significant increases in precarity, especially for those with life histories of socially disadvantage and marginalisation. While the emphasis is on theory, I also hope to demonstrate the potential for developing new more holistic agendas for care research, and in turn, care practices.
The development of an innovative socially informed family-focused service model
Background: There is a gap in understanding the experiences of families living with complex parental illness such as younger onset dementia (YOD). We aimed to develop a socially informed theoretical framework, focusing on the actions to foster enablement of the whole family to function well, whilst facing many social challenges.
Methods: Thirty-five data capture events were gained through semi structured interviews with children and young people (17), people living with YOD (5), spouse/caregivers (6) and health and social care providers (7). A thematic analysis was conducted using an innovative theoretical lens drawn from the combined perspectives of the social model of disability and family systems-illness model.
Results: Two major themes emerged from the data. The first theme: Understanding the social demands on the family - described lifecycle challenges and pressures on families living with YOD, within a social context. The second theme: Interactions of health and social care providers with families living with younger onset dementia - depicted opportunities and barriers experienced in service provision including advocating for change in the health and social care system.
Conclusion: Enabling participation and engagement in the community, and appropriately investing in maintaining the emotional and physical well-being of the whole family to live and function well with a parental illness such as YOD, is crucial. The innovative model offers a socially focused theoretical paradigm for collaborative rethinking and fostering design and development of family-focused services and support. Further advancement and integration of this theoretically underpinned co-created, family-focused service model requires additional research but could be translated to families with other parental illness.
Resetting the carer agenda: rights vs resilience
My 29-year-old daughter, for whom I have been sole carer, recently transitioned to Supported Independent Living (SIL). Achieving this goal was not easy: Amelia’s application was initially rejected, with the NDIA assessor reportedly informing our SIL provider: ‘There are 60-year-old participants still living with parents in their 80s out there. How can this carer even think this application might be approved?’
Nevertheless, we persevered. Amelia has settled into her new home, and I am enjoying opportunities to participate in civic and social life that have been unavailable to me, the carer of a person with high support needs, for three decades.
In this paper, I draw upon my own lived experience to discuss carer rights, and how this vexed issue is addressed – or perhaps ignored – by researchers. I allude to the article by Laura Davy and I, ‘Claiming rights: the future for carers and the need for radical imagining’, in the latest issue of the International Journal of Care and Caring. We explore how carers, particularly those with intensive and long-term obligations, are marginalised as claimants of rights, and unacknowledged in research and policy, not only as participants but also as multi-dimensional individuals with needs and aspirations beyond the caring role.
Current carer research typically focuses on building carer resilience and valorising the carer role. Researchers Luke Clements and Eva Kittay challenge this preoccupation by invoking questions of human rights. I pose these questions: are researchers prepared to address the marginalisation of carers, and support their rights? If so, how?
Hugh T.J. Bainbridge is an Associate Professor in the School of Management, UNSW. His research focuses on workforce diversity with a specialisation on employees who, in addition to their job, provide informal unpaid care to elderly or disabled family members. The current emphasis of his work is on eldercare, the work-care interface, and how line managers and HR specialists can improve the experience of employees with caring responsibilities. His research is published in management journals including the Academy of Management Review, Journal of Applied Psychology, Journal of Vocational Behavior, Human Resource Management, Labour & Industry, and Social Policy & Administration.
Michael Fine is Honorary Professor in the Department of Sociology at Macquarie University, Sydney. Michael has researched, published and taught in the fields of social policy, ageing, care and human services for over thirty years. He has been a member of the NSW Ministerial Advisory Committee on Ageing, the NSW Carers Advisory Council, and an Executive Board Member for the Northside Community Forum - the largest regional community care organisation in NSW. He is an editor of the new International Journal of Care and Caring and a member of the editorial board of the Australasian Journal of Gerontology. Michael's column reflecting on various issues in aged care is published bi-monthly in Aged Care Insite. His book, A Caring Society? Care and the Dilemmas of Human Service in the Twenty-First Century, was published internationally by Palgrave/MacMillan in 2007.
Karen Hutchinson is currently a postdoctoral research fellow with the Australian Institute of Health innovation (AIHI) at Macquarie University. Completed a PhD thesis by publication with the University of Sydney in September 2018. Five published papers make up this thesis. Thesis titled: 'Exploring whole family experience the living with younger onset dementia from a social model perspective.'
Karen is also a physiotherapist with many years clinical experience working with people living with acute onset and degenerative neurological conditions predominantly in the community, in the UK and Australia. She is very interested in the lived experiences of people living with neurological impairments and their families.
Kathryn Knight is a writer, researcher and carer advocate. She has a PhD from Macquarie University in Writing and Cultural Studies, in which she explored narratives of care-giving and disability, and produced her own memoir of caring for a child with disability. She has worked in the disability sector for 15 years, and prior to that was an academic and professional writer.
Eva Cox AO was born in 1938 in Vienna, Austria, so, being born Jewish, was declared stateless by Hitler. So her mother fled to England, as a refugee. There, as a three year old, she became a feminist when her Kindergarten teacher told her she couldn't have a drum, they were for boys so girls got tambourines or triangles! After 2 years in Rome, post war, with a father working for the UN, she arrived in Australia in 1948 and was labelled a reffo (refugee). So from an early age , she was well primed to pursue fixing the world. So, as a sole parent in the 70s she studied to be a sociologist at UNSW to find out how to fix injustices.
She’s currently an Adjunct Professor at Jumbunna Research, University of Technology Sydney, looking at the problems of Indigenous policies. She has worked as political advisor, market researcher, academic and activist, with a high media profile. She delivered the ABC Boyer Lectures in 1995 on the theme A Truly Civil Society, on the need for trust as our social glue. Cox was awarded an AO 1995, She also featured on a postage stamp, as an Australian Legend in 2011 with three other well known feminists. She is still trying to make society more civil, reminding us we live in society, not and economy so need to remember our roles as citizens, not distrustful customers.
Alan Morris is a Professor at the Institute for Public Policy and Governance, UTS. Alan is a prominent urban and housing studies scholar. He has published extensively in highly rated peer reviewed journals in Australia, and internationally. His most recent book, (2018) Gentrification and Displacement: The Forced Relocation of Public Housing Tenants in Inner Sydney examines the displacement of public housing tenants in Millers Point. The Australian Dream: Housing Experiences of Older Australians (2016, CSIRO Publishing) examines the impact of housing tenure on older Australians who are dependent on the age pension.
Linda Peach is Research Manager with the School of Business at UTS. Linda completed her PhD at the University of Queensland, School of Psychology, in 2012. Her thesis investigated the role of ongoing gender inequality in shaping young Australians' expectations and intentions towards their future work and family lives. Having worked in academic research roles for several years and across several universities, in early 2013 Linda moved to Sydney to take up a role with the Workplace Gender Equality Agency in early 2013. Linda assumed her role as Research Manager at UTS in 2018.
Carla Saunders is a senior lecturer in the Centre for Health Services Management. She has over 35 years professional experience in regional, state and national level roles in health management, health planning, health services research, and health policy and program development and oversight. She has worked extensively in government, non-government and private health care in Australia and holds a Master of Medical Science (Epidemiology) and a doctorate in the Behavioural Sciences. Dr Saunders investigates health policy, care and management from a societal perspective.
The afternoon session was dedicated to interactive discussions along three themes:
Engaging with Carers in Research
Recognising and Preferencing Carers Voice
How do we Ground Carer Policy in Evidence?
The conversation was captured with a live digital scribe, the illustrated results of which can be found here.