Bulletin Index/

Health Status

1. When It Comes to Health, Do Sex and Gender Matter?

2. Gender,Work and Health: An Analysis of the 1994 National Population Health Survey

3. Women’s Health in Atlantic Canada: A Statistical Portrait

Health Services

4. Health Care Utilization and Gender: A Pilot Study Using the BC Linked Health Data

5. National Gender Economic Costing Group

Health Care Reform

6. Moving in the Right Direction? Regionalizing Maternal Health Services in British Columbia

7. Invisible Women: Gender and Health Planning in Manitoba and Saskatchewan and Models for Progress

8. Coping as a Rural Caregiver: The Impact of Health Care Reforms on Rural Women Informal Caregivers

9. Missing Voices in Long-term Care Policy Making: Elderly Women and Women with Disabilities Receiving Home Care

Diverse Communities of Women

10. Experiences of Immigrant and Refugee Women in Quebec with the Health Care System

11. "Hearing Voices": Mental Health Care for Women

12. Developing Understanding from Young Women’s Experiences in Obtaining Sexual Health Services and Education in a Nova Scotia Community

13. "Voices and Faces": A Qualitative Study of Rural Women and a Breast Cancer Self-help Group via an Audio-teleconferencing Network

14. Centres of Excellence for Women's Health - Contact Information

Missing Voices in Long-term Care Policy Making: Elderly Women and Women with Disabilities Receiving Home Care

Jane Aronson, Department of Sociology, McMaster University

This study explores the perspectives and aspirations of frail elderly women and younger women with disabilities who rely on care and assistance at home in Ontario. Their voices and their knowledge of the home care system are seldom included in current debates about long-term care policies that are, rather, dominated by the economically-driven imperatives of governments to manage efficiently and offload costs from the public ledger.

Home care has always been a poorly resourced and fragmented part of the health care system in Canada. It is subject to no national standards so that, over time, provincial governments have fashioned various mixes of public, voluntary and for-profit home care services. In Ontario, where the study is being carried out, the present government’s commitment to cost-cutting and privatization in all health and social programmes has translated in home care into the form of a financially straitened system of “managed competition” that fosters the entry of for-profit providers into the home care marketplace.

To explore women’s experiences of this turbulent and poorly supported service arena, the study takes a longitudinal (3 year) qualitative approach: longitudinal in order to capture and understand change in recipients’ health and social situations and in the shifting home care environment, and qualitative in order to give primacy to women’s definitions of their circumstances, concerns and aspirations. Since the study began 18 months ago, a sample of twenty-five (25) women who receive home care in an ongoing way has been located in a snowball fashion through community groups who are partnered with the project (e.g., Older Women’s Network, Canadian Pensioners Concerned) and through other community and advocacy organizations. The participants are aged between 35 and 96; they live with a range of chronic conditions and disabilities and include a range of experience in terms of length of service receipt, culture, and marital and family status. In terms of income, almost half are poor.

Participants are interviewed at regular intervals (4–6 months) and are invited to reflect on their health and social situations and on the services and assistance they receive at home. With their permission, interviews are taped and transcribed. Some of the central themes and tensions emerging from analysis of these transcripts concern women’s experiences of the new home care ‘marketplace’ and they are summarized here.

Instability and Discontinuity
Many participants note rapid and problematic change in both the provider organizations delivering their care and, more significantly, in the actual personnel coming into their homes. They describe the strains and demands of having to rely on unknown nurses and home care workers for help with tasks that are often intimate and complex and that require familiarity and personalized knowledge. Continuity and predictability have always been a critical challenge in the organization of home care as the quality of care is rooted in the everyday details and processes of service giving and in the relationships in which they are embedded. The system of ‘managed competition’ in Ontario has exacerbated this challenge as, by design, the array of provider organizations is expanding, their contracts are regularly reviewed and changed, the home care labour force is increasingly dislocated and insecure and thus – at the front line – relationships with service users are destabilized and discontinuous.

Tighter Rationing of Services
In the new organization of home care in Ontario, case managers assigned to each home care client assess need and coordinate packages of services drawn from a mix of nonprofit and for-profit providers with whom their employing Community Care Access Centre has contracted. Study participants’ accounts of their contacts with case managers reveal the application of increasingly narrow definitions of eligibility for care and assistance. Many report cuts in the hours of help allotted to them and new definitions of the tasks with which they can expect assistance; in particular, their accounts reflect a trend toward provision of only personal or medically necessary care and the withdrawal of assistance with household help or social support. Beneath these changes lies a critical redefinition of people’s entitlements to public support and an implicit according of priority to narrowly medical and acute care rather to social and longer term supportive care. These changes are occurring in the private orbits of individual care recipients’ homes with little or no public discussion or acknowledgement.

Shifting the work and costs of care: Privatization
As publicly provided home care is reduced or experienced as undependable, study participants are pressed to seek alternative sources of help. The work and costs of care are, in effect, transferred to the private domain. Some participants sought the help of family members – a resort that was often layered by concerns about burdening people and indebtedness and is, of course, not an option for those who have no family members to whom they feel they can turn. Participants with the financial means to do so purchased extra help in the private market from commercial providers. This proved a satisfactory experience for some but, in some instances, participants complained that personnel were inconsistent and poorly prepared (experiences that critics would contend reflect the deteriorating employment conditions in the home care market and provider organizations’ consequent difficulty in recruiting and retaining workers). The work and costs of care were also offloaded in other, even less explored or understood directions: to the informal economy (e.g. to privately paid cleaners/ support workers/ companions, to formal care providers who informally filled some of the vacuum left by retreating public services); to elderly and disabled women themselves who strove, often against great odds and at some risk, to look after themselves or their households alone; or to no one at all, leaving participants to go without, their needs unmet. Highlighting these barely visible consequences of home care rationing and exploring their impacts on women in different social circumstances will be an important focus for future analysis.

Heightened insecurity
Unsurprisingly, these conditions in the home care marketplace generate insecurity and anxiety among home care users. Study participants face unstable or degenerative health conditions and disabilities as well as unstable home care services and a political climate communicating their disentitlement to public support. Damage to identity and selfhood and, often, fear of the future are embedded in participants’ descriptions of their circumstances. Embedded in them, too, are strands of resistance and struggle manifest in, for example: the day to day resilience and ingenuity marshalled to manage at home, the formation of creative alliances with formal care providers committed to expanding and personalizing their responses to service users’ needs and, for a few, the political channelling of indignation through advocacy organizations, letter-writing etc.

As the study proceeds, these and other themes and tensions will be explored and elaborated and results will be communicated as widely as possible to concerned community groups, the media, policy makers at different levels of government and academic audiences.

This ongoing research is supported by the National Network on Environments and Women’s Health and the Social Sciences and Humanities Research Council.

For further information contact:
National Network On Environments
And Women’s Health Centre for Health Studies
York University
4700 Keele Street,
214 York Lanes,
Toronto, ON  Canada M3J 1P3
Tel: (416) 736-5941  Fax: (416) 736-5986
Web Site: www.yorku.ca/research/nnewh  E-mail: nnewh@yorku.ca

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