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Costs and Benefits of Caregiving Caregiving and Health Care Reform Creating Better Conditions for Care
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Mothers Caring for Children with Cancer Juanne Clarke, Paula C. Fletcher, Wilfrid Laurier University, Margaret A. Schneider, University of Waterloo, National Network on Environments and Women’s Health
Each year an estimated 1,300 to 1,400 children in Canada are diagnosed with childhood cancers, joining the 8,000 to 10,000 children who are already coping with the diseases.[1] Considerable research has been done on the impact of psychosocial variables, such as social support and coping and adjustment, on the parents of children who have cancer.[2] Much less is known about the health care that mothers provide in the home to children who have cancer or the impact of this care work on the women’s own health and well-being. The research described in this article represents the first part of a three-year study of mothers of children with cancer. The objectives of the research carried out in 2001 were to explore the specific caring tasks that these women perform and to capture the women’s perceptions of the health impact of those tasks. We conducted 10 focus groups in cities in Ontario and Quebec with a total of 49 mothers whose children had been diagnosed with cancer during the previous five-year period. The women ranged in age from 29 to 50 years old. A wide variety of ethnic and cultural backgrounds was represented. The majority (53%) of the women’s children had been diagnosed with Acute Lymphoblastic Leukemia (ALL), a rapidly progressive, acute form of leukemia characterized by the presence of too many underdeveloped infection-fighting white blood cells, called lymphocytes, in the blood and bone marrow. Like all blood cells, leukemia cells travel through the body. Depending on the number of abnormal cells and where these cells collect, patients with leukemia may have numerous symptoms including fever and chills, anemia, frequent infections, weight loss and easy bleeding or bruising.[3] In our study, the children with ALL and those with other forms of cancer had been cared for, on average, 27 months in hospital and 45 months in the home. We used two qualitative methods to analyse the data. The first was Patton’s (2002) method of phenomenological analysis.[4] (Phenomenology emphasizes the meanings people give to their experiences.) The second method, Glaser and Strauss’s (1967) constant comparative method,[5] allows for a comparison of experiences among participants, revealing commonalities and differences. Using audiotapes recorded during the focus groups, we analysed and coded data according to emerging themes. A significant finding was related to the impact of health care work on paid work. Of the women who had been working outside of the home when their child was diagnosed (60%), over 42% had to leave their jobs to care for their child. Others (19%) had reduced the number of hours they worked, or changed the nature of their work (7%). Only two women’s paid work lives had not changed. In contrast, although the majority of the women in the study (90%) were married or living with a partner, only 2% of their partners had stopped work. Of these partners, 49% reported that their work lives had not changed. The women’s description of their health care tasks reveal three categories of work: illness management, emotion work (expression or management of emotion in the interests of another), and the work of establishing boundaries and limits with family members in order to care for their children and work within the strictures of the health care system. Advocacy was a primary task of illness management within the health care system. The women acted as advocates to ensure that their child’s medical needs were met and that mistakes in treatment were not made. "Something that you realize very quick when your kids are sick is that you have to be there," one woman said. "You may have to step on a few toes." In order to access treatment, most of the women drove their children to primary treatment centres that were, on average, 165 kilometres away. In most cases (95%), the treatment the children received was chemotherapy; in addition, 58% had undergone surgery and 46% had had radiation. The women said it was necessary for them to monitor all aspects of treatment, often performing the tasks of a makeshift nurse once their child returned home. One woman, who described herself as being "the least medically capable person" before her child got sick, details some of the skills she had to learn in order to care for her child. "I had to learn how to give injections. I had to learn how to use the CAD [computerized ambulatory drug delivery] pump. In the middle of the night one night, the VON [Victoria Order of Nurses] came and we programmed the pump incorrectly, so I was on the phone, almost 3 hours, talking to the nurse [who said], ‘Are you comfortable with changing the [IV] bag?’ And I said, ‘That doesn’t enter into it. Tell me how to do it.’" "Emotion work" refers to tasks that involve managing one’s emotions and putting aside one’s own emotional response to care for someone else. In this context, it may mean doing so to ensure the smooth functioning of the medical care system or the family. Some women described feeling a profound degree of fear and the necessity of coping with it without sufficient support from medical staff. "When you are on treatment there is a safety zone," one woman explained. "When you are off then you wonder if [the cancer] is going to come back. There is no way of knowing until they are off the treatment and start living without the medicine to see what the body actually does. Those few months are scary. I tried to explain that to certain people—to the nurses, to the doctor. I felt that I was given a kind of false hope at the time. I thought, there needs to be some kind of emotional something that can help you live with the fear." The women also dealt with the responses of other family members to the child’s illness, as well as with family members’ other personal needs. "It’s not just the kid that has cancer, it’s your other children, your husband, your extended family, you know, dealing with all of that," one mother said. "How do we deal with the other child that has other disabilities, or the healthy child, supposedly? All problems become magnified." Another woman said, "The hard part too is the guilt… We know, humanly, that it is impossible for us to be there for our other children." Some women had to establish new boundaries with family. One woman scheduled family members’ visits so as not to interfere with the child’s medical treatment. "[My mom] would say, ‘Why can’t I come to the hospital at this time?’ and I would say, ‘You can’t because of this schedule and these are the hours, and she would say, ‘Well that doesn’t suit me best.’" In contrast, some women noted that their families were extremely supportive. Women said that performing home health care work was tiring and frustrating. As one woman said, "Sometimes we don’t have much left…because you’re emotionally drained, you’re physically drained, financially drained… It’s very hard to give when you have nothing to give." Over the next two years we will continue to collect data about mothers of children with cancer through focus groups and interviews in Ontario and on the east and west coasts. We hope this research will lead to recommendations for systemic changes within health care policy, the hospital setting and home care to improve mothers’ access to support and ameliorate the detrimental impacts of caregiving on their health and well-being. The full report, Women’s Health Work with Children with
Cancer, can be obtained from: NOTES |
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