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Caregiver Burden
The above image shows nurses at the Wilkes-Barre General Hospital School of Nursing. They are learning critical care techniques. 1967.
Definition of term and background: What is caregiver burden?
Caregiver burden is term used in the healthcare community and caregiving circles that those outside of these groups knows know little to nothing about. To understand the concept of caregiver burden we must first ground our understanding of the words care and caregiver. Care is a term defined by the World Health Organization as, “the extent to which health care services provided to individuals and patient populations improve desired health outcomes. In order to achieve this, health care must be safe, effective, timely, efficient, equitable and people-centered” (WHO, 2018). From the definition given by the World Health Organization we can see that what qualifies for care is more of an open-ended concept rather than a strict guideline. The somewhat vague definition of “care” demonstrates that care is not a universal concept, rather it is an idea that differs from individual to individual with no ultimate judge of good or bad care.
A caregiver is can be generally understood to be a person who provides care for another person. The Family Caregiver alliance defines a caregiver as, “A caregiver—sometimes called an informal caregiver—is an unpaid individual (for example, a spouse, partner, family member, friend, or neighbor) involved in assisting others with activities of daily living and/or medical tasks. Formal caregivers are paid care providers providing care in one’s home or in a care setting (day care, residential facility, long-term care facility)” (Family Caregiver Alliance, 2018). From this definition we can see that there is a wide range of people that are considered to be caregivers. Within caregiving, there is a distinct difference between informal caregivers who are unpaid and formal caregivers who are paid. The conversation surrounding caregiver burden focuses mainly on informal caregivers because, unlike primary care providers such as doctors and nurses, they do not receive compensation for services they provide. This lack of compensation is where the burden associated with caregiving arises. Caregiver burden is defined by Bevans et al when they write , “Unlike professional caregivers such as physicians and nurses, informal caregivers, typically family members or friends, provide care to individuals with a variety of conditions including advanced age, dementia, and cancer. This experience is commonly perceived as a chronic stressor, and caregivers often experience negative psychological, behavioral, and physiological effects on their daily lives and health.” (Bevans et al, 2012). From this definitions we can see that the act of caregiving in and of itself does not cause caregiver burden. Instead, burden enters the patient caregiver relationship once the act of providing care elicits negative responses and emotions. This statement is supported by various research studies which investigate the effect of caregiver burden experienced when caring for an aging loved one.
Demographics of Caregiving
Historically, caregiving has been seen as a strictly female role due to societal expectations of how men and women should behave. Through statistics provided by the Family Caregiver Alliance (FCA), we can see that that the demographics of who provides personal home care is consistent with our traditional gender roles. FCA states, “Upwards of 75% of all caregivers are female, and may spend as much as 50% more time providing care than males. [Institute on Aging. (2016). Read How IOA Views Aging in America.] Male caregivers are less likely to provide personal care, but 24% helped a loved one get dressed compared to 28% of female caregivers. 16% of male caregivers help with bathing versus 30% of females. 40% of male caregivers use paid assistance for a loved one’s personal care. About 14.5 million caregivers are males out of the 43.4% who care for an older family member. [National Alliance for Caregiving and AARP. (2009). Caregiving in the U.S.].” (Family Caregiver Alliance, 2018).
The most common caregiving situation in one in which an individual begins to require long term health with is then provided by a spouse or loved one. FCA states that, “65% of care recipients are female, with an average age of 69.4. The younger the care recipient, the more likely the recipient is to be male. 45% of recipients aged 18-45 are male, while 33% of recipients aged 50 or higher are male.” [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.] In this scenario, the caregiving situation may start as a neutral or positive experience but as time goes on the the financial strain, emotional labor, and time requirements begin to accumulate in addition to other stressors that result in overall caregiver burden.
Perspectives/Controversy- The Crossroads of Burden and Coping
Research has been effective in raising awareness for this issue. In a study conducted by Grunfeld, Eva, et al, we are able to sees the effects of caregiver burden on those that care for breast cancer patients. Breast cancer is an illness that disproportionately affects women and due the nature of caregiving, the research conducted had a higher than expected percentage of men studied than one might expect. The study determined that, “Burden was the most important predictor of both anxiety and depression. Of employed caregivers, 69% reported some form of adverse impact on work. In the terminal period 77% reported missing work because of caregiving responsibilities. Prescription drugs were the most important component of financial burden.
Interpretation: Caregivers’ depression and perceived burden increase as patients’ functional status declines. Strategies are needed to help reduce the psychosocial, occupational and economic burden associated with caregiving.” (Grunfeld, Eva, et al 2004). From this study it is clear that the effects of caregiver burden is real and needs to be addressed on a larger platform.
Support for Caregivers
The negative effects of caregiver burden are amplified by the lack of knowledge surrounding the phenomenon. Because of this lack of knowledge on the subject of caregiver burden, many people across the country may face this problem but lack the tools to articulate their feelings. The lack of information surrounding caregiver burden is briefly described by Hoffman et al when they write, “Within the last decade there has been a multitude of research related to the phenomenon of caregiver burden. Although the concept is relatively new in the literature, the responsibility and ultimately consequences of caring for another family member has existed for centuries. Often this responsibility lies with the female members of the family, but lately more husbands, sons, close family, or friends have assumed the primary caregiver role.” (Hoffman, Mitchell 2007). Various support groups exists for caregivers in an effort to minimize the effects of caregiver burden. Resources available to caregivers include support groups, informational articles, and initiatives run by leading experts on caregiving and gerontological health. Prominent groups that try to address this issue include the Family Caregiver Alliance, Agingcare.com, and AARP.
Relevance to Politics of Health
The above cartoon depicts a man and woman discussing who should provide primary caregiving of their child. This kind of conversation bring about the question of who should provide care, especially as we move away from traditional gender roles.
Caregiver burden is something that has been experienced by humans for as long as we have cared for each other. Although we may not have always had a name for it, the negative effects of caregiving are experienced on a daily basis and can have cumulative effects. Caregiver burden is a relevant topic within the politics of health primarily due to the questions it raises such as who we think the burden of caregiving should fall on and how the health consequences associated with caregiving widen pre-existing gender disparities with healthcare. The burden of care is shouldered disproportionately by women as stated by Family Caregiver Alliance who write, “Males may be sharing in caregiving tasks more than in the past, but females still shoulder the major burden of care. For example, while some studies show a relatively equitable distribution of caregiving between males and females, female caregivers spend more time providing care than males do (21.9 vs. 17.4 hours per week). [National Alliance for Caregiving and AARP. (2009). Caregiving in the U.S.]” (Family Caregiver Alliance, 2018). Women of lower socioeconomic status that serve as informal caregivers are likely to experience further burden due to the increased financial stress they face when compared to wealthier women. Alternatively one could consider the possible changes healthcare shifts caused by the increase of men in caregiving roles as mentioned by Hoffman et al. and how that could reflect a societal movement of women from the home to the workplace. The people that are affected by caregiver burden is ultimately determined by current politics of health which determines who is providing both formal and informal care as well as how burden is treated.
Works Cited:
Images:
Wilkes-Barre General Hospital School of Nursing. Critical Care. 1967. http://library.artstor.org/asset/SS7730875_7730875_10823270. Web. 16 Feb 2018.
Chadda, Rakesh K., et al. “Caregiver burden and coping.” SpringerLink, D. Steinkopff-Verlag, 13 Aug. 2007, link.springer.com/article/10.1007/s00127-007-0242-8.
William Haefeli. “Oh, no. If you’re going to be primary breadwinner, then I get to be primary caregiver.”<br/>Publication: New Yorker. http://library.artstor.org/asset/AWSS35953_35953_29920883. Web. 16 Feb 2018.
Written works:
“What is Quality of Care and why is it important?” World Health Organization, World Health Organization, www.who.int/maternal_child_adolescent/topics/quality-of-care/definition/en/.
“Caregiver Statistics: Demographics.” Caregiver Statistics: Demographics | Family Caregiver Alliance, www.caregiver.org/caregiver-statistics-demographics.
Hoffmann, Rosemary L., and Ann M. Mitchell. “Caregiver Burden: Historical Development.” Nursing Forum, Blackwell Publishing Ltd, 2 Aug. 2007, onlinelibrary.wiley.com/doi/10.1111/j.1744-6198.1998.tb00223.x/full.
Grunfeld, Eva, et al. “Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers.” CMAJ, Canadian Medical Association Journal, 8 June 2004, www.cmaj.ca/content/170/12/1795.short.
Novak, Mark, and Carol Guest. “Application of a Multidimensional Caregiver Burden Inventory 1 | The Gerontologist | Oxford Academic.” OUP Academic, Oxford University Press, 1 Dec. 1989, academic.oup.com/gerontologist/article/29/6/798/594539.
Pinquart, Martin, and Silvia Sörensen. “Associations of Stressors and Uplifts of Caregiving With Caregiver Burden and Depressive Mood: A Meta-Analysis | The Journals of Gerontology: Series B | Oxford Academic.” OUP Academic, Oxford University Press, 1 Mar. 2003, academic.oup.com/psychsocgerontology/article/58/2/P112/557802.