Patient Safety and Quality: An Evidence-Based Handbook for Nurses, publication.
Background
Most patients have families that are providing some level of care and support. In the case of older adults and people with chronic disabilities of all ages, this “informal care” can be substantial in scope, intensity, and duration. Family caregiving raises safety issues in two ways that should concern nurses in all settings. First, caregivers are sometimes referred to as “secondary patients,” who need and deserve protection and guidance. Research supporting this caregiver-as-client perspective focuses on ways to protect family caregivers’ health and safety, because their caregiving demands place them at high risk for injury and adverse events. Second, family caregivers are unpaid providers who often need help to learn how to become competent, safe volunteer workers who can better protect their family members (i.e., the care recipients) from harm.
This chapter summarizes patient safetyand quality evidence from both of these perspectives. The focus is on the adult caregiver who provides care and support primarily for adults with chronic illnesses and chronic health problems. The focus is not on those with developmental disabilities. In the first section, we discuss the evidence for protecting the caregiver from harm. The second section addresses research aimed at protecting the care recipient from an ill-prepared family caregiver.
Caregivers as Clients
For centuries, family members have provided care and support to each other during times of illness. What makes a family member a “family caregiver”? Who are these family caregivers, what do they do, and what harm do they face? What does the research tell us about ways to assess the needs of these hidden patients and evidence-based interventions to prevent or reduce potential injury and harm? This section answers these questions and highlights the need for nurses to proactively approach family caregivers as clients who need their support in their own right.
Description of Caregiver Population
The terms family caregiver and informal caregiver refer to an unpaid family member, friend, or neighbor who provides care to an individual who has an acute or chronic condition and needs assistance to manage a variety of tasks, from bathing, dressing, and taking medications to tube feeding and ventilator care. Recent surveys estimate there are 44 million caregivers over the age of 18 years (approximately one in every five adults).1 The economic value of their unpaid work has been estimated at $257 billion in 2000 dollars.2 Most caregivers are women who handle time-consuming and difficult tasks like personal care.3 But at least 40 percent of caregivers are men,3 a growing trend demonstrated by a 50 percent increase in male caregivers between 1984 and 1994.4 These male caregivers are becoming more involved in complex tasks like managing finances and arranging care, as well as direct assistance with more personal care.5 Nurses are likely to see many of these caregivers, although many of them will not identify themselves as a caregiver.
Those caring for someone 50 years or older are 47 years old—on average—and working at least part-time.1 If they are providing care to an elder who is 65 years or older, they are, on average, 63 years old themselves and caring for a spouse; one-third of these caregivers are in fair to poor health themselves.6 In many cases, they are alone in this work. About two out of three older care recipients get help from only one unpaid caregiver.7 In the last decade, the proportion of older persons with disabilities who rely solely on family care has increased dramatically—nearly two-thirds of older adults who need help get no help from formal sources.4
Caregiver Responsibilities
Caregivers spend a substantial amount of time interacting with their care recipients, while providing care in a wide range of activities. Nurses have a limited view of this interaction. Caregiving can last for a short period of postacute care, especially after a hospitalization, to more than 40 years of ongoing care for a person with chronic care needs. On average, informal caregivers devote 4.3 years to this work.8 Four out of 10 caregivers spend 5 or more years providing support, and 2 out of 10 have spent a decade or more of their lives caring for their family member.9 This is a day-in, day-out responsibility. More than half of family caregivers provide 8 hours of care or more every week, and one in five provides more than 40 hours per week.1
Most researchers in the caregiving field conceptualize the care that family members give as assistance with activities of daily living (ADLs) and instrumental activities of daily living (IADLs). But those concepts do not adequately capture the complexity and stressfulness of caregiving.9 Assistance with bathing does not capture bathing a person who is resisting a bath.10,11 Helping with medications does not adequately capture the hassles of medication administration,12 especially when the care recipient is receiving multiple medications several times a day, including injections, inhalers, eye drops, and crushed tablets. The need to make decisions on behalf of family members who are unable to do so is stressful, as this is contrary to the caregivers’ normal role, and they are concerned that the decisions are correct. Supervising people with dementia and observing for early signs of problems, such as medication side effects, are serious responsibilities as family members are often unable to interpret the meaning or the urgency. The medical technology that is now part of home care and the frustrations of navigating the health care system for help of any kind is not even part of the ADL/IADL measures.13 Being responsible for medical and nursing procedures like managing urinary catheters, skin care around a central line, gastrostomy tube feedings, and ventilators is anxiety provoking for the novice nursing student, but is becoming routine family care of persons with chronic illnesses living at home.
Family caregivers often feel unprepared to provide care, have inadequate knowledge to deliver proper care, and receive little guidance from the formal health care providers.14–16 Nurses and family caregivers rarely agree about specific needs or problems during hospital admission or discharge,17 in part because nurses are often unaware of the strengths and weaknesses of both the patient and caregiver. Due to inadequate knowledge and skill, family caregivers may be unfamiliar with the type of care they must provide or the amount of care needed. Family caregivers may not know when they need community resources, and then may not know how to access and best utilize available resources.18 As a result, caregivers often neglect their own health care needs in order to assist their family member, causing deterioration in the caregiver’s health and well-being.19–21
Caregivers get very little help from health careprofessionals in managi ng their tasks and the emotional demands of caregiving. Among the greatest challenges for family caregivers is interacting with nurses and other professionals in the hospital setting, and a rough crossing back home, as the patient is “discharged to family.”22 Naylor’s review23 of nearly 100 studies published between 1985 and 2001 confirms that breakdowns in care during the transition from hospital to home result in negative outcomes. Health professionals in emergency departments and inpatient hospital settings do not adequately determine the after-care needs of older patients when they are being discharged.
Effective discharge planning is impeded by gaps in communication between the hospital and community interface, such as illegible discharge summaries and delays in sending information to the physician.24 Focus groups of caregivers found that they experience their family member’s discharge from the hospital as an abrupt and upsetting event because the hospital staff did not prepare them for the technical and emotional challenges ahead of them. Many caregivers felt abandoned at a critical time, and none of the focus group participants had been referred by any health care professional in the hospital to community-based organizations for emotional support—or any other kind of support.22
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