The Role of Human Factors in Home Health Care Workshop Summary (2010) / Chapter Skim
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7 Informal Caregivers in the United States: Prevalence, Caregiver Characteristics, and Ability to Provide Care--Richard Schulz and Connie A. Tompkins
7 Informal Caregivers in the United States: Prevalence, Caregiver Characteristics, and Ability to Provide Care--Richard Schulz and Connie A. Tompkins
Pages 117-144
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From page 117... ...
1 We realize that some prefer the term "family caregiver" to "informal caregiver." We are using the term to contrast informal unpaid caregiving with formal paid caregiving.
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or activities of daily living (ADLs) assistance to people ages 65 and over (not to all adult care recipients)
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The need for sustained informal caregiving for these young veterans is potentially immense, and the nature of the challenges for their informal caregivers warrants thorough investigation. Caregiing for Children All children are care recipients under a broad definition of caregiving.
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With the exception of a few selected health conditions, such as spina bifida and neurodevelopment problems resulting from lead exposure, the overall trend in recent decades has been for increased chronic illness, associated disabilities, and the need for sustained care from parents (Zylke and DeAngelis, 2007)
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From page 121... ...
Long-distance caregivers tend to be more educated and affluent and are more likely to play a secondary helper role when compared with in-home caregivers. Distant caregivers spend on average 3.4 hours per week arranging services and another 4 hours per week checking on the care recipient or monitoring care.
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Providing care to an individual with chronic illness and disability is generally viewed as a major life stressor, and its effects on the health and well-being of the caregiver have been intensively studied over the last three decades. Because informal caregivers are often called on to provide highly demanding and complex care over long periods of time, the question inevitably arises: Who ends up in this role and how able are they to address care recipients' needs?
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To varying degrees, caregivers must communicate and negotiate with family members about care decisions, provide companionship and emotional support, interact with physicians and other health care providers about patient status and care needs, drive care recipients to appointments, do housework, shop, complete paperwork and manage finances, hire nurses and aides, help with personal care and hygiene, lift and maneuver the care recipient, and assist with complex medical and nursing tasks (e.g., infusion therapies, tube feedings, medication monitoring) necessitated by the care recipient's health condition.
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Caregiving often begins when that individual is no longer able to perform IADL tasks, such as cooking, cleaning, or managing finances, because of a chronic health condition. Thus, the early stages of a caregiving career involve such tasks as monitoring symptoms and medications, helping with household tasks and finances, providing emotional support, and communicating with health professionals.
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Coordinating Care One of the biggest difficulties facing informal caregivers is the coordination of services to support care recipients in the home or as they transition from one care setting to another. Caregivers may need to negotiate roles among family members who disagree on care options, identify relevant available services, assess eligibility requirements, and communicate and negotiate with health professionals and insurance companies.
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In sum, the complexity of identifying and accessing health and social service options that might be useful to caregivers is daunting even to experienced health professionals cast in an informal caregiving role. The average lay person has little chance of optimizing formal support services to minimize the burdens of caregiving.
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To date, few of the conference recommendations have been implemented, although issues of informal caregiving have become part of the health care reform debate in the United States. Turning to caregiver training, knowledge about chronic illness and disability, how to provide care, and how to access and utilize services is another requisite to effective caregiving.
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From page 128... ...
Similarly, clinicians who educate caregivers about how to provide care to the recipient rarely assess quality and appropriateness of caregiving outside the training session. For some types of care, patient status may be used as a proxy for caregiver performance, but this does not guarantee that the care provided by the caregiver was delivered as intended or was effective.
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ABILITY TO PROVIDE CARE What factors affect caregivers' ability to provide care? The answer to this question requires keeping in mind both who occupies the caregiving role and how the experience of caregiving itself affects the ability to provide care, especially over the long haul.
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common and show largest effects. One prospective study reports Chronic conditions (chronic illness increased mortality for strained checklists)
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Differences in illness rates between caregivers and noncaregivers may reflect differences that existed prior to taking on the caregiving role. For example, low-SES individuals are more likely to take on the caregiving role than high-SES ones (National Alliance for Caregiving and American Association of Retired Persons, 2004)
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, and the death of the care recipient has been found to reduce caregiver depression, enabling them to return to normal levels of functioning within a year of the patient's death (Schulz et al., 2003)
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Depression in spousal caregivers is also a risk factor for potentially harmful caregiver behaviors, defined as psychological (e.g., screaming, threatening with nursing home placement) and physical mistreatment of the care recipient (e.g., withholding food, hitting or slapping, shaking)
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Developmental Declines From a human factors perspective, developmental declines have important implications for the ability to provide care as well as the design of systems that might support caregivers. Sensory decline is common in
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The demand and need for care will increase dramatically over the next three decades as a result of the aging of the population, infant and childhood survival, health behaviors that increase disabling health conditions such as obesity, and returning war veterans suffering from polytrauma. This will happen in a context in which the availability of informal support is declining, the costs of formal care and support are already too high and unsustainable, and there is a growing shortfall of health care professionals with relevant expertise.
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This will require a clear understanding of the task demands of home care and an assessment of caregiver capabilities, including their motivation to provide care, their physical, sensory, motor, and cognitive ability to perform caregiving tasks, their levels of distress and depression, and the quantity and quality of other support available to them. Assessments of the caregiver should be a routine feature during care recipient and health care provider encounters, and these data should inform decisions about whether a caregiver is capable of taking on the caregiver role, the types of training needed, and the intensity of monitoring and external support required to ensure adequate care that does not unduly compromise the caregiver's own functioning.
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found that adults have realistic expecta tions about becoming caregivers in the future but are less able to see themselves as care recipients. Nearly two-thirds of U.S.
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. Risk factors for potentially harmful informal caregiver behavior.
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Family Caregiver Alliance.
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National Alliance for Caregiving and American Association of Retired Persons.
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National Family Caregivers Association and Family Caregiver Alliance.
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. Caregiving tasks and training interest of family caregivers of medically ill homebound older adults.
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1 INFORMAL CAREGIVERS IN THE UNITED STATES Wolff, J.L., and Kasper, J.D.
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