Families provide most of the care for older adults with chronic illnesses and disabilities. Estimates vary,1but as many as 43.5 million Americans currently provide care for a person over 50.2Because caregiving for seriously and chronically ill people carries well-known physical, emotional, and financial risks, with consequences for the older adult as well as the caregiver, it's important to assess and address a family caregiver's needs, strengths, and limitations.3Nurses have the training, skills, and opportunities to carry out these assessments.
It would be hard to find anyone who disagrees with the assertions above. It would be equally hard to find anyone who has figured out how to put caregiver needs assessments into widespread nursing practice, especially at acute care hospitals, where time with family caregivers is so limited. Nor has anyone figured out how to bill for this important service.
It's not a question of finding "the best instrument," because there's no "best" for all caregivers or all situations. The caregiver whose spouse has significant memory loss but no other major health problems until a serious fall has a different set of concerns from the caregiver whose father has a long history of congestive heart failure and diabetes and is being discharged from the hospital with a tote bag full of instructions and prescriptions. The caregiver who's just learning to monitor oxygen saturation levels has different needs from those of the caregiver with years of experience. Some caregivers struggle with the emotional drain that accompanies caring for a dying family member. Others are worried about the financial hardship caregiving can cause. Caregiving is a dynamic process, and a needs assessment at one point in time may not reflect the situation a few months or even a few weeks down the road. Nevertheless, a careful and sensitive caregiver needs assessment at any point in the patient's illness can both identify immediate issues and suggest strategies for care coordination and future assistance, including access to community-based services for the care-giver as well as the older adult.
The focus in this article is on hospital nurses, but it includes basic information for nurses and other practitioners in all settings. This isn't an appraisal of caregiver assessment tools, although it directs readers to several useful ones. It is instead an examination of the attitudes, practices, and skills necessary to make the best use of whatever instrument is used as the framework for a discussion taking place within the limits of time and resources. A caregiver needs assessment isn't an end in itself; it's a tool to help identify the many roles a particular caregiver plays, the challenges she or he faces, gaps in knowledge and skills, and the kinds of help that will be both useful and acceptable to this caregiver and to the older adult receiving care.
A good definition of caregiver assessment comes from the Family Caregiver Alliance's 2005 consensus conference3:
Caregiver assessment refers to a systematic process of gathering information that describes a caregiving situation and identifies the particular problems, needs, resources, and strengths of the family caregiver. It approaches issues from the caregiver's perspective and culture, focuses on what assistance the caregiver may need and the outcomes the family member wants for support, and seeks to maintain the caregiver's own health and well-being.
For the purposes of this article, two aspects of this definition are particularly important. The assessment should be systematic, not idiosyncratic, and it should elicit the caregiver's perspective. Although the older adult's needs and preferences are certainly part of the equation, the caregiver shouldn't be seen just as an adjunct to that person but as an individual with her or his own needs.
Nurses, along with their colleagues in social work, are key players in this effort, in part because nurses and family caregivers have much in common. They have a holistic view of the older adult. Their goal is to improve or maintain the older adult's health and quality of life. They see themselves as advocates in a fragmented care system in which "patient-and-family–centered care" is an ideal only rarely achieved. Nurses have important clinical skills, which, when matched with the caregiver's long experience and knowledge of the older adult, can enhance the person's care and prevent medication and other errors. This alliance doesn't occur naturally, however; it takes a focused effort and continued reinforcement to build and sustain trust and confidence.
A successful caregiver needs assessment has five basic elements:
- identification of the family caregiver(s) most appropriate for the assessment
- selection of the appropriate assessment instrument
- presentation of the assessment as an opportunity to discuss the caregiver's perspective and needs
- use of good communication skills to elicit the caregiver's perspective
- follow-up on care coordination, linkages to other services, and other recommendations
BEFORE THE CAREGIVER ASSESSMENT, A NURSING SELF-ASSESSMENT
Before embarking on this journey, it's important for nurses (and other professionals) to assess their own perspectives on family caregivers. We all bring our personal experiences, values, and expectations to caregiving. It's important to recognize that these views aren't always understood or shared by others.
Let's try a quick word association. Thinking about the family caregivers you meet in your practice, what word or phrase comes to mind? If you said "overwhelmed," "noncompliant," "uninvolved," or "part of a dysfunctional family," you're not alone. According to Debra Bertrand, a nurse manager and facilitator at Collaboration for Home-care Advances in Management and Practice, based at the Center for Home Care Policy and Research of the Visiting Nurse Service of New York,4
We've all had an experience with a caregiver that makes us cringe.... The demanding wife who constantly criticizes the way we do her husband's dressing. The daughter or son who thinks their parent isn't getting enough services. The family member who calls all the time to direct the care of their parent but never visits him or her.... I think the most difficult caregiver is the absentee one. When the sick older person needs someone to help care for him or her in order to stay at home, family and friends are nowhere to be found.
Certainly some families are all of these things and more. But when a negative appraisal is the expectation, the assessment process starts with a presumption that the family caregiver is going to be a problem. And that often becomes a self-fulfilling prophecy. For their part, families often come to these encounters with negative expectations based on prior health care experiences, feelings of inadequacy, or anxiety about their family member's condition. Family caregivers who are just learning how to take care of the patient's wounds or perform personal care are often afraid of hurting or embarrassing their family member, who is more than a patient to them. According to a draft of a report on research conducted by Lake Research Partners for AARP Public Policy Institute, caregivers from ethnic or linguistic minorities may feel that they're treated differently or that their cultural traditions aren't respected (Susan Reinhard and Rita Choula, AARP, e-mail communication, March 15, 2011). Some caregivers may guard their privacy and see assessments as intrusions into areas best left to the family.
Caregivers may even interpret the word "assessment" as a judgment or as an exercise to justify withholding or decreasing services, not as an opportunity to tell their story in their own words. Even though nurses may not feel they have much power, to many family caregivers the nurse is an authority figure whose criticisms (even when meant to be helpful) are upsetting.
When you were searching for a word to describe family caregivers, maybe your first thought wasn't negative—maybe it was a more neutral term like "resource" or "informal support." These are standard research and policy labels for family caregivers. But a caregiver is a resource for whom? Is the caregiver's responsibility to do the best she or he can for the older adult while maintaining her or his own health and meeting other responsibilities, or is it to make the professional's job easier by taking over certain tasks? And much of family caregiving is informal only in the sense that it's unpaid. Many tasks demand a level of skill that usually takes nurses years to develop. So-called "unskilled" tasks like bathing can challenge even the most skilled professional if, say, the patient has dementia or quadriplegia, or if the bathroom has no space to maneuver; these tasks are even harder when the patient is your parent.
Another response might have been to compare the family caregivers you encounter with the way you've seen others—perhaps in your own family or community—provide care. Family caregivers report having heard statements like, "If you took better care of your mother, she wouldn't have fallen," "A good wife would just quit her job and stay home," or "My mother took care of my grandmother and never complained." Not surprisingly, family caregivers feel hurt by these offhand remarks. (And sometimes, rosy retrospective views aren't as accurate as one thinks they are.) Your own experiences shouldn't affect your ability to work with families whose health, emotional state, or other responsibilities prevent them from making the total commitment that you or others might make with no apparent distress.
Finally, despite a growing number of male caregivers, there's still a gender gap, with women providing more hands-on direct care than men. The prevailing assumption in many health care settings is that the wife, daughter, daughter-in-law, niece, or granddaughter will be the caregiver, even if it means giving up her job or other activities, and that the male members of the family will "help out" when they can or pay for additional care. This may in fact be the way the family wants it, but it's important not to assume that this arrangement works for everyone.
Part of the problem is that there's no clear definition of the relationship between a nurse or other clinician and a family caregiver. The family caregiver isn't a patient or a client, so there's no fiduciary relationship. Yet if the care-giver doesn't receive some time and attention, the older adult's care may be jeopardized. Without a shared understanding of one another's roles and limitations, there may well be unfulfilled expectations on both sides.
IDENTIFICATION OF THE FAMILY CAREGIVER
Sometimes the family caregiver is easily identified. It's the spouse who greets you warmly as you walk into the hospital room or the daughter taking careful notes of every instruction. Sometimes family caregivers will even identify themselves as the person you should be talking to. But frequently the family situation isn't so clear-cut. The anxious son who has a long list of questions may live in another state and not be available for day-to-day care after discharge. The 20-something granddaughter may be willing but unable to perform the necessary tasks at home because she goes to school full-time and has a part-time job. And some caregivers don't recognize themselves in the role, saying, for instance, "I'm not his caregiver. I'm his wife."
There may be several people involved in the patient's care, without anyone identified as the primary caregiver or the care manager. And then there are the invisible caregivers, who may not show up at the hospital but do provide care at home. There are many reasons a caregiver might be absent from the hospital. Jobs, caring for other family members, legal or financial problems, a lack of transportation, poor health status—all can be reasons family members aren't present. Some people have such strong emotional reactions to hospitals that they can't bring themselves to cross the threshold, even when someone they love is a patient. Sometimes the older adult doesn't want the family member (even a spouse) involved in her or his care, even though there will be ongoing needs that home care services can't provide.
These and other challenges were reported by participants in the United Hospital Fund's Transitions in Care-Quality Improvement Collaborative, a 15-month effort in New York City to improve transitions between hospitals, home care agencies, and nursing home rehabilitation programs by involving family caregivers (see http://bit.ly/lU4B1B for more on the initiative). The first aim was to identify the family caregiver and conduct a needs assessment. Nurses and social workers reported difficulty in many cases in identifying the family caregiver. Most teams resolved these questions by asking the older adult or the family members present to tell them who provides or manages most of the care at home, who manages the medications, and who arranges doctor visits. If they said more than one person did these things, the team asked for their names and how they could contact them. Although it's not practical or necessary to conduct needs assessments with all the people involved in an older adult's care, if two people are the main caregivers, they should each be offered the opportunity for an assessment.
SELECTION OF THE APPROPRIATE ASSESSMENT INSTRUMENT
Many of the available instruments were developed for use in community-based settings and focus on psychosocial problems like burden, isolation, and depression, sometimes balanced with questions about the rewards of caregiving. Examples are the American Medical Association's Caregiver Self-Assessment Questionnaire, which can be downloaded for free in English and Spanish at http://bit.ly/lNAOA5; the 22-item Zarit Burden Interview, which, although under copyright, can be used for no fee by individuals and institutions conducting nonfunded academic research: go to http://bit.ly/lggDM2 (a shorter, modified version was published in the Gerontologist in 20015; and the 13-item Modified Caregiver Strain Index, which was discussed in "Helping Those Who Help Others" (September 2008), part of AJN's How to Try This series in collaboration with the Hartford Institute for Geriatric Nursing; it's also available for download (for free) at http://bit.ly/kfSKwk.6
Although tools that assess care-giver strain, burden, and identity are important in providing an overall picture, they may not capture the caregiver's immediate needs or provide the nurse with the information necessary to establish a viable care plan, such as a plan for a discharge from hospital to home, for example. One of these or similar assessments administered by a social worker would be a valuable adjunct to a more clinically focused instrument. Sometimes assessments of a physical or occupational therapist can add important information to the mix.
There are relatively few assessment instruments specifically designed for family caregivers in hospital settings. The Family Preferences Index (also available as part of the How to Try This series at http://bit.ly/ncb9sa) elicits information about the family's wishes to be involved in decision making and helping with tasks like eating, bathing, and dressing during a hospital stay.7 Another useful tool is the Brief Assessment Scale for Caregivers (BASC) of the Medically Ill, which asks about distress related to the patient's condition and treatment choices.8 The United Hospital Fund's Next Step in Care guide, What Do I Need as a Family Caregiver? (available at www.nextstepincare.org; click "For Family Caregivers" on the left-hand navigation menu and scroll down) focuses on immediate transition needs, asking the caregiver to describe her or his ability to perform a series of common tasks; the caregiver has a range of answers to choose from: "I am able to help without training," "I am able to help with training," and "I am unable to help." The tool, available in English, Spanish, Chinese, and Russian, also contains a list of common worries to which the caregiver can add any of her or his own.
As noted in the executive summary of AJN's 2008 State of the Science supplement,9 "Professional Partners Supporting Family Caregivers," the ideal caregiver needs assessment should elicit information that helps the provider (and I quote directly)
- identify, understand, and articulate each caregiver's circumstances, needs, strengths, and goals.
- understand the caregiver's cognitive abilities and cultural and spiritual situation (including the ability to perform direct care).
- anticipate the needs of the caregiver and the caregiver's family.
- develop, implement, evaluate, and modify care plans in collaboration with family caregivers.
- assist family caregivers in identifying and accessing services.
Like all ideals, this can rarely be achieved, particularly in hospitals. But it can provide the frame-work for the nurse to focus on those aspects that are within her or his competence and control.
PRESENTATION OF THE ASSESSMENT AS AN OPPORTUNITY
Family caregivers are unlikely to initiate a request for a needs assessment. The nurse or social worker is in the best position to present the option. But both nurse and caregiver are on tight schedules and have many tasks that must be completed in a limited amount of time. Being flexible and willing to adjust to the family caregiver's schedule is an important ingredient in gaining trust.
The needs assessment shouldn't be presented as a task the nurse has to complete or as a test of the caregiver's capabilities. Just starting the conversation with a friendly remark can help. Find out how the caregiver wishes to be addressed: "My name is Joan Smith. What would you like me to call you?" Acknowledge the caregiver's stress: "I know it's hard to have your wife in the hospital. Have you found a place to get some food?"Or simply, "How are you doing?" That may sound simplistic, but caregivers are grateful for such gestures. Finding a reasonably quiet place to talk is also important, even if hard to achieve in a hospital. Doing the assessment at the patient's bedside isn't conducive to frank conversation, especially if the caregiver has worries or fears that she or he doesn't want to share with the patient, such as concerns about being reluctant to perform certain kinds of intimate care. On the other hand, some patients and caregivers are comfortable with a bedside conversation, no matter what it involves, so the nurse has to be able to judge verbal and nonverbal cues.
USE OF GOOD COMMUNICATION SKILLS
Having identified a family caregiver and selected or adapted an assessment instrument, you may be chagrined to learn that the person doesn't want to talk about herself or himself. "Too busy," "Not interested," or "Don't worry about me; just take care of my mother," are not uncommon responses. Although such disappointing refusals can't be eliminated entirely, they'll be less frequent if the needs assessment is described as an opportunity to work together to provide the best care for the older adult.
Asking questions in a nonthreatening way is crucial. Sometimes it's just a matter of rephrasing. Instead of saying, "Are you sure you know when your mother should take each of her medications?" try "Your mother is taking a lot of new medications and some of the old ones have been dropped. It can be confusing, so let's go over the list together."
Here are examples of questions that focus on difficulties the caregiver might have with meeting a patient's particular needs10:
- Has anyone shown you how to move your wife from the bed to a chair so you don't hurt yourself? How comfortable are you with doing it?
- Because your husband has had a stroke, it'll be important to help him swallow food very carefully. It's different from regular feeding and swallowing. Has anyone shown you how to feed him or help him eat?
- You told me you live in a third-floor walk-up, and your mother will be going home in a wheelchair. Has anyone talked with you about how to manage that?
The most important part of a caregiver needs assessment isn't talking; it's listening. For those few minutes, the only two people in the world are you and the caregiver. Listening carefully, watching body language, and paying attention to tentative statements that may lead to important information will help you help the caregiver—and ultimately the patient.
A needs assessment should lead to some action that benefits both patient and family caregiver—a referral for home care services, training in the use of equipment or in monitoring medications, techniques for providing personal care, suggestions for reducing stress or finding community services such as support groups, transportation, or respite services. But all too often the nurse doing the assessment has no way of finding out whether these actions were ever taken or whether they were useful.
It's standard practice at many hospitals to have someone make follow-up phone calls a few days after discharge to see how the patient is doing. These callers can also ask about the caregiver and report the results to the nurse. This process may help reveal which assessment techniques work better than others and improve subsequent needs assessments. However, caregivers may be reluctant to talk openly with a stranger, and staff making these calls should therefore be trained in the use of good communication skills. A needs assessment should end on a positive note. Caregivers should feel they've been heard, and nurses should feel they've contributed to the caregiver's knowledge and confidence. This is the essence of a true partnership and a meaningful relationship.