| Coping As A Rural Caregiver: The Impact of Health Care Reforms on Rural Women Informal Caregivers
J. Jaffe, B. Blakley
Healthcare in rural Saskatchewan is rapidly changing. Many rural communities are losing their hospitals, long-term care facilities and, in some cases, primary care services. Care of the chronically ill or disabled is being deinstitutionalized. Respite or physical therapy services are scarce or becoming centralized and more difficult to access. The numbers of rural informal caregivers are increasing, while insecurity regarding medicare and the restructuring of health services is intensifying (Rosenthal, 1994).
Health care restructuring has been a tug-of-war between maintaining the five pillars of medicare (accessibility, portability, universality, comprehensiveness, and public administration) and controlling health care costs (Rosenburg and James, 1994; Haislmaier, 1991). This struggle has resulted in a shift from institutional to community and home care for acute and chronic conditions (Armstrong and Armstrong, 1996). In Saskatchewan, efforts to control health care expenditures have led to hospital closures, fewer acute care beds in rural areas (Braden, 1998), reduced numbers of doctors and nurses (Eisler, 1996), an out-migration of medical specialists, and fewer beds in long-term care institutions (HSURC, 1994). At the same time, additional funding has gone to home care (HSURC, 1998; Kyle, 1998).
There has been a shift to community care for persons with disabilities and reduced spending for long-term care institutions for the aged. There has been a shift from hospital to home care, with increased out-patient and day surgeries, early release programs, and reduced long-term care in hospitals (Braden, 1998) With these changes, we have seen a shift from care provided by skilled health professionals to caregiving by less-skilled family and home care workers (Armstrong, 1997).
This shift from institutional to community care appears to be about where health services are offered--in hospitals or homes. In fact, it is about much more. It represents a profound shift in philosophy away from the principles of medicare and toward the privatization of health care. Since home care does not fall under the umbrella of the Canada Health Act, universality is compromised. In Saskatchewan, regional health districts are responsible for home care services, and the range of services and eligibility policies vary among the districts. Some services that would be available by rights to hospital patients under the Canada Health Act must be purchased by persons receiving care at home (Armstrong and Armstrong, 1996).
Health care restructuring and regionalization were promoted as means of increasing accountability in the health care system by making it more democratic (Hurley et al., 1993), yet family caregivers, as a group, are not represented on health district boards, and changes in the health system are often made without their participation. Accountability works more on the consumer-based model, wherein caregivers choose which services to purchase, but have little say in determining which services are available.
Policy-makers are introducing rapid changes to the health system, yet little is known about their impacts on rural informal caregivers. Policies appear to be based on myths and assumptions about rural women, families and communities.
Rural women informal caregivers are virtually invisible to many policy-makers, because caregiving for ill and disabled people is considered an extension of women's domestic responsibilities (Henderson, 1998). The devolution of care to wives, mothers, daughters, and sisters is based on "traditional" ideas that women's employment is non-existent, unessential, or part-time (Pless, 1984; Armstrong and Armstrong, 1996). Women are assumed to be available for caregiving, regardless of their age, health, or existing responsibilities. As a result, caregivers are seeing their workloads increase, often with little recognition, little training, no financial compensation, no protection in case of injury, and no workers' benefits. (ICUW, 1997).
It is assumed that rural families have strong ties across generations, that adult children live in the area, and that they are available to care for aging parents. Today few families have more than one or two relatives residing in the same community. Like their urban counterparts, rural families are small and highly mobile. Family support for the ill or aging is most often undertaken by one family member--usually female (Montgomery and Hirshorn, 1991; Barris, 1998). These women may be uneasy or unhappy about their role as caregivers. They may feel inadequate, guilty, or even unwilling to provide care, but see little choice (Braithwaite, 1996). When demand for care is intense, family relations can become strained as caregivers are overwhelmed by exhaustion and resentment (ICUW, 1997).
Rural families are thought of as propertied, financially stable and homogenous. However, inequalities are increasing in rural areas and many families find themselves financially strapped (Ames et al., 1994). Rural people often lack income security when faced with long-term illness or disability (Black et al., 1993). Many rural women caregivers have limited income due to retirement or lack of paid employment (Mui and Morrow-Howell, 1993). Policy-makers often overlook the financial situation of rural families, assume the cost of living to be low in rural areas, and ignore hidden costs like transportation. (Richardson, 1988).
Rural places are considered idyllic, yet isolation, lack of public transportation, and the limited social resources of small communities can place intolerable stresses on those giving and receiving care (Richardson, 1988). Poor quality housing and insufficient health and social services characterize many rural communities. Distance makes access to services more difficult and adversely affects rural women's ability to provide care (Giarchi, 1990).
Rural communities are thought of as close-knit and neighborly, yet stress from isolation is a serious concern (Richardson, 1988). Geographic dispersal of the population means that people risk isolation from neighbors and services. Rural depopulation represents a decline in social resources; fewer people are available as social supports. Inadequate transportation, fewer family supports, and a lack of daycare and respite facilities limit caregivers' access to assistance or relief (Giarchi, 1990). While caregivers' experiences vary, isolation and lack of social support can affect their well-being.
Canada's population is aging, particularly in rural areas. In 1991, nearly one-third of Canadians over 65 lived in rural areas (CMHC, 1991; Hendryx, 1993). Rural centres have higher proportions of elderly people and higher rates of long-term disability and chronic illness than cities (Wilkins, 1992). It is estimated that 80% of elder care is provided by family members, primarily women (Barris, 1998). In 1997, Statistics Canada reported that nearly three million Canadians were looking after someone with chronic health problems. As the population continues to age, Canadians will have to care for older family members, and caregivers themselves will be older.
The differences between urban and rural places, and the
challenges faced by rural informal caregivers need to be taken
seriously in the formulation of health policies. Yet very little
is known about rural informal caregivers in Saskatchewan. What
are their social and economic situations? What difficulties do
they experience as caregivers? What resources and supports are
available? What solutions do they see?
The Rural Women Informal Caregivers Study focused on the following:
The North Valley Health District was chosen as the site of the study because the area was well-defined and caregivers in the district had the potential to access the same number and type of health care services. The area was made up of smaller communities and therefore considered rural. The district was close enough to Regina that day trips could be made by the researchers, but far enough that caregivers in the area were not able to access city services easily. The district had health care representatives willing to cooperate in the study.
Names of informal caregivers were solicited from a variety of local organizations and community groups in order to create a list of sixty potential interviewees. The caregivers had to be women residing in the North Valley Health District and providing care to a person also residing in the district. They had to be actively caregiving for a child, spouse or parent, at the time of the study.
Individual interviews, using a structured questionnaire, were conducted with 53 women between June and October 1998. Most interviews were conducted in the caregiver's home. Six interviews were carried out in public restaurants chosen by the caregiver. The interviews lasted between 45 minutes and four hours. Most caregivers made arrangements for the care-receivers to be elsewhere during the interviews or resting. Those care-receivers who were present often interrupted to ask questions or receive help, but did not actively participate in the interview. Excerpts from interviews are presented in italics.
The North Valley Health District
The North Valley Health District is one of over thirty health districts created since 1992, when the Government of Saskatchewan began to restructure the provincial health care system. Under The Health Districts Act, district health boards have the authority to provide and evaluate health services, perform needs assessments, and promote health and "wellness" for members of their district (Saskatchewan Health, 1995). Health boards are comprised of appointed and elected members.
The long and narrow North Valley Health District is centered in Melville. With its most eastern extent the Manitoba border, it includes the towns of Ituna, Esterhazy, Atwater, Bangor, Birds Point, Dubuc, Duff, Fenwood, Gerald, Goodeve, Grayson, Hubbard, Killaly, Melville Beach, Neudorf, Spy Hill, Stockholm, Tantallon, West End and Yarbo. According to Saskatchewan Health (1998), the North Valley Health District has 14,992 residents. This is a 3% population decrease from 1996 (North Valley Health District Report 1996-1997).
Although the district overall is experiencing depopulation, the smaller centres are losing the most people per capita due to farm service centre consolidation, rapidly increasing farm sizes, and the loss of essential services (i.e., postal outlets, banks, hospitals). Melville, the largest centre in the North Valley Health District, has also experienced an out-migration of people. However, some functions previously performed in smaller centres have become centralized in Melville, and the rate of depopulation there has been less dramatic. In the health sector, smaller centres are losing medical facilities to larger towns, and larger towns are losing facilities for advanced procedures to even larger places. Some communities have no local physician care.
Health care reform in the North Valley Health District has involved a reorientation of services, following a government mandate to make "substantial changes in the provision of health services including an increased emphasis on disease and injury prevention, healthy lifestyles and community-based health programs, and increased coordination and integration of health services to provide a more responsive and efficient health system" (Saskatchewan Health, 1995). This process has resulted in hospital beds closures and a 3.4% increase in the out-migration of district residents for acute care services between 1993/94 and 1995/96 (North Valley Health District, 1996/97). In addition, there has been a renewed emphasis on outpatient and home care services. At present the North Valley Health District has two hospitals located in Melville and Esterhazy, with a total of 68 beds, a community health centre located in Neudorf, two nursing homes located in Melville and Esterhazy and one health centre integrated with a long term care facility located in Ituna. According to Marian Terlesky, of the North Valley Health District, there are currently 240 nursing home beds in the district. Home care services are provided throughout the district with approximately 631 people receiving these services (April 1997). Adult wellness programs are available in the communities of Esterhazy, Ituna and Melville. In 1996/97, these three wellness clinics were used 2,536 times by 83 clients. Wellness clinics are also held in eight communities with a total clinic attendance of 1,242 in 1996/97 (North Valley Health District Report 1996-1997).
The demographic processes affecting rural Saskatchewan are
particularly pronounced in this district. Close to 22% of the
people residing in the North Valley Health District are 65 years
or older--about 7% above the provincial average (Saskatchewan
Health, 1998). People in their middle years represent
approximately 29% of the district, compared to the provincial
average of 27%. In contrast, people aged 0 to 19 years make up
only 26% of the district, 4% below the provincial average; while
people aged 20 to 39 years comprise less than 24% of the
district, compared to 29% of the provincial average. These
figures indicate a continual declining population base, with a
concomitant shrinkage of services. In short, to a greater degree
than one finds in the overall population, this district will have
fewer people and resources to care for an aging population, at
least for the next two decades.
Who Are The Caregivers?
Who Is Receiving Informal Care?
How The Caregiver Role Evolved
Almost all the women in our study took on the role as caregiver, in part, because of a lack of family alternatives. Fourteen women said that the care-receiver had no other family members available to care for them either because they lived too far away (11), or because they had all passed away (3). Eight of the women indicated that the lack of family alternatives was the result of family dynamics--five caregivers stated that the care-receiver had family in the same community but that they were unwilling to help due to the care-receiver's history of alcoholism, abuse and neglect.
"I have not chosen to become a caregiver. I've been stuck with the job because no one else wants it."
Tasks Performed By Caregivers
Difficult Tasks For Caregivers
"Sometimes it's like having a baby except you know they are not going to grow out of the helpless stage they are in...I don't find the physical activities, such as lifting him, demanding. Instead the repetitiveness of the tasks is what I find frustrating. Having to do the same tasks over and over again and always at a specific time and place is almost maddening."
"I think my biggest problem when it comes to caregiving for my husband is giving him a bath. It's not actually getting him into and out of the tub that is difficult, but persuading him to actually have a bath. My husband argues with me over this issue and sometimes threatens to hit me. I know his reaction is a result of the illness, but it's really hard to deal with. I feel I have no control sometimes."
"My disabled son was born 35 years ago...Today I am 75 years old and a widow. I'm finding caregiving for my child to be more stressful than it used to be...The most difficult part of taking care of my son is his mood swings. Sometimes he can be really stubborn, while at other times he just outrightly refuses to talk to me."
How Could Caregiving Tasks Be Made Less Difficult?
Caregiving Support From Family
Caregiving Support From Friends And The Church
Community And North Valley Health District Supports
Impacts On Caregivers
Although informal family caregivers are not personally responsible for the philosophical and structural shifts in health care reform, they are undeniably affected by them. When the ill and disabled are released into the community, it is the family that becomes primarily responsible for their care (Charters, 1995; Montgomery and Hirshorn, 1991). Family caregivers today are expected to perform difficult caregiving tasks--including administering medications, assisting with physiotherapy exercises and performing medical procedures--with little or no training. In addition, caregivers are finding themselves caring for increasingly longer periods of time and often for more than one care-receiver (Henderson, 1998; Merrill, 1993).
Evolving health policies and shifting demographics are affecting all caregivers. However, the rural informal family caregivers find themselves in the most precarious position, as they are being asked to provide care at a time when their social and structural supports have become exhausted, depleted or non-existent. Changes to the health care system are not taking place within a bubble. As rural family caregivers attempt to work within the health care system, they are also being forced to address issues related to public transportation (Richardson, 1988), rural depopulation, a loss of health and welfare services, dwindling social resources, isolation (Henley et al., 1998), and poor quality of housing (Giarchi, 1990). In addition, rural caregivers are burdened by their own health-related issues as they tend to be older (Campbell et al., 1998), and have higher rates of long-term disability and chronic illnesses than their urban counterparts (Wilkins, 1992).
Recent studies show that 80% of all family caregiving is done by women (Barris, 1998, Franklin, Ames and King, 1994) and caregiving continues to be seen as an extension of women's domestic responsibilities (Henderson, 1998). Rural women informal caregivers find themselves in a difficult situation. These women have to cope not only with the restructuring of their health care system but also of their communities. This study reveals that these changes are affecting caregivers' social lives, their work, and their health.
The Caregiver's Social Life
Caregivers' social lives are limited by their caregiving duties. Six of the women interviewed have stopped participating in any social activities since becoming a caregiver, while 11 others identified activities they do alone as their only social activities since becoming caregivers. Only 13 caregivers stated they are happy with their current level of involvement in social/ extracurricular activities. Of the 40 caregivers who are not happy with their level of social/extracurricular activities, 33 directly connected the burdens of caregiving to their reasons for not participating in more activities. Seventeen of the caregivers said they could not justify spending the money or taking the time away from the care-receiver to get involved in more social activities. With limited financial and social resources, the caregivers' desire for more social activities was not seen as a priority. Eight caregivers said that although they could probably find the time and money to get involved in more activities, they were just so tired from caregiving that they needed to rest. Eight caregivers said that they would like to get involved in more social/extracurricular activities, but it is difficult to find a qualified care provider and too stressful to have the care-receiver accompany them.
"I find it really hard to find appropriate care for my daughter. There are few older people in my community who are interested in caring for a disabled child and younger people, such as high school students, usually do not have the patience or ability to cope with my daughter's disability."
Long caregiving hours and a lack of family support limit caregiver involvement in social activities. Caregivers who spent more hours per week with the care-receiver were more likely to say they were dissatisfied with their level of social activities. Of the 26 caregivers who self-reported spending 50 hours or less per week with the care-receiver, only 35% were interested in being involved in more social activities. In comparison, 70% the 27 caregivers who self-reported spending 51 hours or more per week with the care-receiver indicated they would like to be involved in more social activities.
Caregivers who do not receive family support were more likely to report being dissatisfied with their level of social activities. Of the 26 caregivers who are not receiving caregiving help from family members, 19 or 73% reported wanting to be involved in more social activities. Meanwhile, only nine of the 27 caregivers who do receive family help with caregiving indicated that they would like to be involved in more caregiving activities. Families not only supervise the care-receiver so the caregiver can be involved in social activities, but also participate in the activity with the caregiver. In many instances, it is a family member who insists the caregiver get out of the house for a while--dragging her out for a coffee or a walk. To further support this finding, over 50% of the caregivers who feel something can be done to make their caregiving duties easier, reported that having stronger family and community support would be a significant help.
Caregiving And Work Outside The Home
Older caregivers took early retirement to perform their caregiving duties. Eight of the sixteen caregivers who are retired from the paid workforce, stated that they had taken their caregiving role into account when deciding to retire.
Six women retired within a year of becoming a caregiver and directly related their retirement to the demands of caregiving which increased their stress or led to a deterioration of their own health.
Caregivers are adjusting their work life to accommodate their caregiving duties. Sixty-seven percent of the caregivers currently in the workforce have had to make workplace adjustments since becoming a caregiver. Three of the caregivers have had to change jobs in order to reduce their hours of work or to be in a flexible enough position to accommodate their caregiving duties. Seven of the caregivers are working at the same job, but have had to reduce their hours to make caregiving easier. Two caregivers have had to increase their hours of work in order to make more money, to support the family's added needs.
"It's hard to keep on top of work and caregiving responsibilities. Working less would make things easier but that's impossible because we really need the money right now."
Combining work and caregiving often means less sleep and no social life. A majority of the caregivers with paid work outside the home stated that balancing work and caregiving resulted in not having enough time for a social life or not getting enough rest. These women said that when juggling caregiving, employment and their own personal lives, it is most often their personal lives that suffer.
The Health Of Informal Caregivers
Women are reporting that their health has deteriorated since taking on the caregiver role. Two-thirds of the caregivers in this study consider themselves to be healthy. Close to half of all the caregivers interviewed reported that their health had deteriorated since taking on the caregiver role. It is interesting to note that some of the caregivers who identified themselves as healthy still feel that their health has deteriorated since they started caregiving. These caregivers reported suffering from more stress headaches, chronic back pain, depression and emotional and physical exhaustion since they began caregiving. As caregivers are compelled to care for more than one care-receiver over their lifetime and for longer periods of time, we can anticipate seeing greater numbers of stress related illnesses develop in caregivers.
How a caregiver reports her health is directly correlated to her level of family support and employment outside the home. Caregivers who do not consider themselves healthy are very likely to feel their health has deteriorated since they started caregiving. Remarkably, age and income seem to have very little effect on whether caregivers say they have become less healthy--although young healthy caregivers are slightly more likely to report that they have experienced deteriorating health. People with higher levels of education are more likely to consider themselves healthy, yet are also slightly more likely to say their health has deteriorated since they began caregiving.
The most significant variables to explain both whether the caregiver considers herself to be healthy and whether her health is staying the same or deteriorating are family help and outside employment. Caregivers who are employed outside the home are much more likely to consider themselves as healthy and are unlikely to report their health as deteriorating since they started caregiving for a family member. In contrast, caregivers who do not work outside the home are both more likely to evaluate their health as poor and to feel it has deteriorated.
A large number of caregivers who do not consider themselves healthy receive no assistance from family members with their caregiving duties. Meanwhile, caregivers who do receive help are more likely to consider themselves as healthy, and are also less likely to feel that their health is deteriorating.
This study was initiated to give rural women informal caregivers a forum to discuss their needs. Based on their experiences and suggestions, we have highlighted significant areas of concern to be addressed in health policy.
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