Bulletin Index/

Costs and Benefits of Caregiving

1. Who Cares?

2. Final Payments: Socioeconomic Costs of Palliative Home Caregiving

3. Mothers Caring for Children with Cancer

4. Always On-Call: The Health of Informal Caregivers for Seniors

5. Work/Life: A Healthy Balance?

Caregiving and Health Care Reform

6. Blurring the Boundaries: Women’s Caring Work and Manitoba Health Care Reform

7. Labour Process Change: Women’s Paid Home Care Work in Saskatoon

Creating Better Conditions for Care

8. Guidelines for Examining Women, Work and Caring in the New Millennium

9. The Charlottetown Declaration on the Right to Care (2001)

Blurring the Boundaries: Women’s Caring Work and Manitoba Health Care Reform

Sweeping changes to the Manitoba health care system since the early 1990s have shortened hospital stays, closed hospital beds, reduced and reorganized staff (particularly nurses and paraprofessionals), increased user fees for selected services and created regional health boards.[1], [2] The impact of these structural changes on paid and unpaid carers has largely been ignored. Our study, Women’s Caring Work in the Context of Manitoba Health Reform,[3] was designed to discover if and how caring work has been transformed as a result of health care reforms and how care providers have been affected.

Although relatively few attempts have been made to clarify the definition and meaning of "care," a primary objective of this study was to develop a concept of care based on the experiences of paid and unpaid carers. An additional objective was to examine how well-established social and professional hierarchies within the health care system have influenced caring work. Recognizing that the restructuring of health care services can have a direct impact on all community members, we also examined public perceptions of Manitoba health care reform and how it is affecting the provision of care.

As it would not be feasible to study caring work in relation to every medical condition, we focussed primarily on carers of individuals who had experienced a cerebrovascular accident (CVA), or what is commonly known as a stroke. The course of acute care and rehabilitation for CVA patients is often long in duration and involves a wide range of paid and unpaid carers.

To explore the challenges facing paid carers, we utilized three sources of data. Fourteen focus groups were held with ninetysix female carers working in institutional settings throughout Winnipeg. These groups were made up of female Registered Nurses, Licensed Practical Nurses, physiotherapists, occupational therapists, speech pathologists, pharmacists, home care aides, cardiac rehabilitation personnel and social workers. To explore whether or not responsibilities associated with paid caring work had been transferred away from the public sector, 24 unstructured tape-recorded interviews were also conducted with unpaid carers who were female relatives of CVA survivors. A study of public perceptions of health care reform was conducted using the 1998[4] and 2001 Winnipeg Area Study (WAS). The WAS is an annual community survey involving a random sample of 750 Winnipeg residents. To learn more about individual attitudes regarding health care reform and caring work, a combination of open-ended and forced choice questions were incorporated into the two waves of the WAS.

The Meaning of Care
Both paid and unpaid carers described caring work as a complex and emotional connection between two people. While the exact nature of care provided by paid and unpaid carers varied significantly depending on the severity of the CVA and the amount of support available to the carers, common elements of caring work were identified. These included (1) providing physical care (e.g., meal preparation and administration of medicine), (2) offering emotional support (e.g., comforting, reassuring, sharing, motivating), (3) assisting in social adaptation (maintaining, creating, adapting to new roles and relationships that emerge as carers are confronted by illness and care responsibilities), and (4) acting as an advocate or link between the care recipient, paid carers, other unpaid carers and the health care system.

Both groups of carers reported that health care reforms had made it difficult, if not impossible, to meet or balance care recipients’ needs for physical, emotional and social support. In fact, the carers suggested that an increasing number of critical errors are routinely made in the health care system. Forced to care for greater numbers of patients with limited resources, paid carers described how the basic physical needs of care recipients, including the administration of medicines and help with bathing and lavatory use, were often not met. A licensed practical nurse said, "Many patients are misdiagnosed, over-medicated and sent home too early." A majority of respondents described a health care system driven by budget concerns and a "revolving door" or early discharge approach that jeopardized the quality of care.

Transfer of Caring Work
Paid carers reported being forced to elicit or rely upon the help of the relatives of care recipients because of early discharge procedures and limited resources in the health care system. As one registered nurse explained, "We don’t have the nurses to go out and see [patients]. [We’re having to] ask the family members to put the eye drops in, or change the wound or set up the pills."

Unpaid carers received little or no guidance, teaching or followup support from the health care system. They frequently reported that the responsibilities and pressures of caring work had largely been imposed upon them. They described their caring work as a highly stressful and often frustrating experience, and said they received little or no recognition for the daily care they provided. This situation exacted a steep price: an overwhelming majority of the women indicated that their physical, emotional and financial well-being and social integration in the community had deteriorated.

Caring for loved ones who have had an acute CVA involves significant long-term challenges. The effects of CVA may include paralysis, aphasia (loss or impairment of the power to use or comprehend words), and personality changes such as irritability, anger and confusion. Unpaid carers described the social stigma and stereotypes associated with stroke survivors that created additional hardships. These difficulties, they said, were exacerbated by unmet needs for medical equipment and therapies, abandonment by the health care system, burnout and social isolation.

Professional and Social Hierarchies
Paid and unpaid carers alike reported feelings of animosity and alienation within a physician-driven health care system. Nurses, for example, felt their experience and judgment were often ignored or devalued by physicians. Unpaid carers also expressed frustration about their subordination and undervalued role in the health care system. They found both doctors and nursing staff to be unapproachable in the midst of demanding and increasingly stressful and bureaucratic health care environments. Both paid and unpaid carers reported that intimacy and expression of feelings were out of place in a system that values cure over care.

Public Concerns
Public perceptions identified in the WAS also alluded to frustration and confusion about health care reform. Winnipeggers reported concerns about access to family practitioners, waiting times for high-tech medicine and surgeries, "hallway medicine," quality of care and the creation of a budget-driven health care system. Only small portions of the WAS samples were involved in caring work (9% of the 1998 sample and 7.3% of the 2001 sample). However, a number of respondents indicated that they were called upon to provide more care as a direct result of government cutbacks in funding and services. The stress, frustration and financial costs to care providers were noted in a number of interviews.

Discussion
The results of this study indicate that health care reforms have compromised the quality of care and caused physical, social, emotional and financial distress for carers. How can we address these problems? One of our recommendations is to make “caring teams” the foundation of the Manitoba health care system. These teams would value the contributions of both paid and unpaid carers equally in an attempt to address the alienation and frustration that they experience. As unpaid carers are forced to assume greater responsibility for the care of their loved ones, more appropriate and flexible resources need to be devoted to support them through home care services, respite, day-programs, physical and speech therapies and counselling services. As health care reform continues to blur the boundaries between the formal health care system and unpaid carers and generates heightened public concern about quality of care, the creation of citizens’ panels must also become a top priority. Including the participation of both paid and unpaid carers as well as members of the general public, these panels would provide Manitobans with an opportunity to directly influence public policy decisions and more effectively meet the needs of women providing care.

For a full copy of the report, Women’s Caring Work in the Context of Manitoba Health Reform, contact:
National Network on Environments and Women’s Health
Centre for Health Studies
York University, 4700 Keele Street, Suite 214 York Lanes
Toronto, ON Canada   M3J 1P3
Tel: (416) 736-5941 Fax: (416) 736-5986
Web site: www.yorku.ca/nnewh   E-mail: nnewh@yorku.ca

NOTES
[1] Manitoba Health. Quality Health Care for Manitobans: The Action Plan. Winnipeg: Manitoba Health, 1992.

[2] Manitoba Health, 1992; Manitoba Health. Quality Health for Manitobans: The Action Plan—A Cumulative Update on Progress. In Manitoba Health Annual Report 1995-97. Winnipeg: 1997a; Manitoba Health. A Framework to Promote, Preserve and Protect the Health of Manitobans. Winnipeg: Northern/Rural Regionalization Task Force, 1997b.

[3] Funded by Social Sciences and Health Research Council as "Women and Change" and by the National Network on Environments and Women’s Health (NNEWH), 1998.

[4] Funded by NNEWH, 1997 as "Assessing the Impact of Health Reform on Winnipeggers: A Community Survey."

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