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Costs and Benefits of Caregiving Caregiving and Health Care Reform Creating Better Conditions for Care
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Final Payments: Socioeconomic Costs of Palliative Home Caregiving This article presents the preliminary findings of a study conducted by three of the Centres of Excellence for Women’s Health. It has been prepared by members of the research team, Lorraine Greaves, Olena Hankivsky, Georgia Livadiotakis, and Renée Cormier of the British Columbia Centre of Excellence for Women’s Health.
Palliative care, aimed at the relief of suffering and improving the quality of life of people who are dying, is a significant part of home and continuing care programs in Canada. Formal (paid) and informal (unpaid) care providers may be involved in caring for a dying person. Research has often overlooked the social, psychological and economic costs of such caregiving. In addition, there has been no gender analysis of the costs to paid or unpaid caregivers of providing this care. However, it is established that most home and community care is provided by women family members and friends on an unpaid basis. These women often incur substantial costs and experience a physical and emotional toll related to their caregiving role.[1] Final Payments: Socioeconomic Costs of Palliative Home Caregiving in the Last Month of Life (2002) is a pilot study based on retrospective interviews with 81 male and female palliative caregivers from three provinces who cared for a person with cancer or AIDS. People with cancer and AIDS receive the most palliative care in Canada. The sample was designed to include a mix of male and female (paid and unpaid) caregivers, and male and female patients. Data were collected and analyzed to determine gender differences, differences between formal and informal caregivers, and regional (British Columbia, Quebec and Nova Scotia) and diagnosis-related differences. A cost-identification process was used to estimate the social, economic, emotional, psychological and spiritual burden on the caregiver during the last month of the patient’s life. To assess economic costs, caregivers were asked to estimate how many hours they spent per caregiving task, and the total number of caregiving hours per week. They were also asked to estimate lost income and any compensation that they received. These measures revealed that informal caregivers performed approximately $6,000 worth of caregiving labour in the final four weeks of the patient’s life. (Informal caregivers spent roughly 79 hours per week and formal caregivers roughly 26 hours providing care in this period.) Unpaid caregivers, as expected, incurred more out-of-pocket expenses than paid caregivers. In addition, 75% of unpaid caregivers reported having to travel away from home at their own expense to give care. Significant gender differences were evident in costs incurred. For example, female caregivers of AIDS patients were more likely than male caregivers of AIDS patients to purchase medical items for their patient. Female and male caregivers (both formal and informal) differed in the nature of the tasks they undertook and the support services they engaged. Females were more likely to dress their patient and obtain services such as massage, while males were more likely to assist with financial and legal affairs and to obtain individual counselling services for their patients. Female informal caregivers spent more time in caregiving tasks and were most likely to report a physical impact from their efforts. In addition, female informal caregivers of cancer patients reported the biggest impact on their family life as a result of caregiving. In self-assessments of caregiving work, twice as many informal caregivers as formal caregivers reported feeling dissatisfied with the care they gave. Among informal caregivers, almost twice as many females expressed this when compared to males. Regrets about impatience, not spending enough time with the patient and wishing they had been more open about death were some of the comments. These retrospective wishes are possibly reflective of the responsibility for emotional caregiving that women may take up in relationships and family life. The caregivers reported spiritual and psychological experiences that ranged from discovering greater meaning to becoming emotionally exhausted. More than half of the informal caregivers reported that the most difficult aspect of caregiving was watching the patient deteriorate and knowing they were going to die. "There is such a sense of helplessness," a caregiver from Nova Scotia said. "No matter what, you know the outcome." In general, male and female caregivers reported equal rates of emotional hardship. Perhaps not surprisingly, a key element of the findings relates to the benefits rather than the costs of providing palliative home care. Ninety-four percent of all caregivers reported that their experience gave meaning to their lives. "What I did for him was important," one caregiver said. "This gave me some consolation." Another reported, "[I knew] I had done something for someone, especially when they are deserted by their own family because of AIDS." As would be expected, different diagnoses indicated different kinds of caregiving teams. Caring for AIDS patients usually involved friends as informal caregivers. Cancer patients usually had family members or spouses as carers. Caregivers of AIDS patients were more likely to purchase specific items to assist in the caregiving, and more often reported economic hardship in their patient’s family as a result of the caregiving effort. Cancer caregivers were more likely to request additional, skilled nursing services than AIDS caregivers. This study reveals some gender differences in palliative caregiving, but gender was less predictive than the formal/informal status of the caregiver in defining the experience of the last four weeks of a patient’s life. Perhaps the most revealing data, however, emerge from the recommendations made by the caregivers, who called for more training and education on palliative care and more efforts to remunerate unpaid caregivers through compensation or tax schemes that would recognize and facilitate their involvement in palliative caregiving. For a copy of the full report, Final Payments: Socioeconomic Costs of
Palliative Home Caregiving in the Last Month of Life, contact: OR Atlantic Centre of Excellence for Women’s Health NOTES |
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