Did you know that over 80% of stroke survivors are discharged to their pre-stroke residence? Homecare is becoming more important and a larger part of the health system as patients are discharged from hospital earlier, number of assisted living spaces increases, and number of nursing home beds decline. Roy Romanow (2002) estimated that 85 to 90% of home care is provided by family and friends. Informal caregivers like you, play a critically important role in providing ongoing care, support, and advocacy for people with physical disabilities (Romanow, 2002). According to the data on hours of care provided taken from the General Social Survey unpaid care-partners provide care equivalent to 276,000 full-time jobs (LeGoff, 2002).
Caregivers save the Canadian health system billions of dollars! The estimated economic cost to replace family caregivers with the paid workforce at the 2009 market rates and usual employee benefits and support would be $25 billion (Hollander, M. et al, 2009).
In stroke, the interactions of family members with stroke survivors are very important in determining outcomes. Better family functioning is associated with improved ability to carry out the activities of daily living and participation in social activities (Clarke & Smith, 1999). Stroke survivors who received moderate practical help and support, but high emotional support had significantly better functional recovery (Glass & Maddox, 1992). Yet, many stroke survivors report that their families provide too much support and overprotect them (King & Semik, 2006). As a care-partner, I certainly had no idea how much support to provide.
In most studies, family members report they lack information and education about what to do with the stroke survivor. They feel unprepared to deal with the emotional and physical stroke crisis and on top of that need to learn to negotiate an unfamiliar and often ever- changing multi-tiered multidisciplinary acute care and rehabilitation system (Palmer, Glass, Palmer, Loo, and Wegener, 2004). The inclusion of families in stroke treatment and support for families has been advocated for some time. The uncertainty and lack of knowledge is stressful for most caregivers. Depression is common in up to 50% of stroke survivors and family carers in acute care situations and 20% or more in community studies. Care-partner strain and burden is high.
A 1999 study found caregivers experiencing the strain of caregiving had 63% higher mortality rates (Schultz and Beach 1999) and a recent study of care-partners to cancer patients discovered that they are at significantly higher risk of hemorrhagic and ischemic stroke (Ji et al., 2012). These studies call for increased health monitoring and support.
In a recent review of the published research literature on what is available for relatives of stroke survivors, a Quebec Group from the University of Montreal noted that in “rehabilitation there is no consensus regarding what should be done with relatives; guidelines exist but are not applied in practice. Little has been formally reported regarding ethical issue likely to emerge for relatives” (Pellerin, Rochette, Racine, 2011).
So as a spouse, son or daughter, or relative of a stroke survivor, if you didn’t know what to do in acute care and rehabilitation, lacked guidance from the health professionals, or felt left out of the treatment and planning processes you are not alone. Consistently in this review, health professionals thought it was less important to help the family of a person with stroke than the client him or herself. Moreover, involving families raises ethical issues and organizational challenges, records management and confidentiality issues.
What’s your experience? We would love to hear your experience about being a care-partner after stroke.
As a care-partner to a stroke survivor do you feel supported? Who supported you? What type of support were you offered? What type of supports would you like?
Sara Palmer, a psychologist at John Hopkins University, has written a book on caring after stroke that you may find helpful. The Amazon link to it is below.
More information:
- Sara Palmer, Ph.D., and Jeffrey B. Palmer, M.D. (2012) . When your spouse has a stroke: Caring for your Partner, yourself, and your Relationship, A Johns Hopkins Press Health Book.
- Alberta Caregivers Association.
- Family Caregiving in Canada.
- Caregiving Resources Across Canada.
- Caring~Web - Education and Support for Caregivers of Stroke Survivors
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