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AJN, American Journal of Nursing:
doi: 10.1097/01.NAJ.0000407303.23092.c3
Feature Articles

Supporting Family Caregivers: Teaching Essential Skills to Family Caregivers

Nigolian, Cynthia J. MSN, GCNS-BC; Miller, Karin L. MSW, LICSW

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Author Information

Cynthia J. Nigolian is the clinical administrator of the Nurses Improving Care for Healthsystem Elders (NICHE) program at the New York University School of Nursing in New York City. Karin L. Miller is a geriatric social worker at the Mercer Island Senior Health Center, a department of Overlake Hospital in Bellevue, WA. Contact author: Cynthia J. Nigolian, cjn2@nyu.edu. The authors have disclosed no potential conflicts of interest, financial or otherwise.

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Abstract

Nurses can use 'teachable moments' to help the transition from hospital to home care.

Editor's note: This is part two of a three-part series, Supporting Family Caregivers, in collaboration with the AARP Foundation and funded by the Jacob and Valeria Langeloth Foundation. The series is part of an initiative, Professional Partners Supporting Diverse Family Caregivers Across Settings, and builds on the work addressed in AJN's September 2008 State of the Science report, "Professional Partners Supporting Family Caregivers" (available at http://bit.ly/o9GZOD). Each article in the series has an accompanying video; the second video can be accessed at http://links.lww.com/AJN/A26.

Keywords: caregiver, communication, cultural competency, discharge planning, family caregiver, family-centered nursing, health care literacy, patient-centered nursing, patient education

The single biggest problem in communication is the illusion that it has occurred. - George Bernard Shaw

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Figure. Photo by Ed ...
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Rose Johns, 81, is admitted to the cardiac floor with an acute exacerbation of congestive heart failure. Her ability to perform self-care is limited, and during her baseline assessment she displays mild cognitive impairment, expressed primarily as short-term memory impairment. Her husband of 60 years, Robert, will be assisting her when she's discharged—"until she gets back on her feet," he says. The nurse is at the bedside administering her morning medications. (This is not a real case; it's a composite based on the authors' experience.)

"Mr. and Mrs. Johns," says the nurse, "I have the medications Mrs. Johns will be taking at home. Mr. Johns, you're going to be giving your wife her daily pills at home, is that right?" Mr. Johns says yes. "This is one of her heart medications that she needs to take every day," the nurse continues. "Most people prefer to take it in the morning because it makes them go to the bathroom for a good part of the morning. If she takes it early, it won't keep her up at night. It's called Lasix or furosemide."

Mr. Johns says, "Oh, I don't know which one that is, but she doesn't like taking the ones that make her have to go to the bathroom. So on days we're going out, she generally doesn't take those pills."

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NONCOMPLIANT OR ILL INFORMED?

The preceding scenario reveals that Mr. and Ms. Johns have deficits in what's known as health literacy—defined by the Health Resources and Services Administration (HRSA) as "the degree to which individuals have the capacity to obtain, process, and understand basic health information needed to make appropriate health decisions and services needed to prevent or treat illness"—in this case as it relates to understanding the purposes and importance of her medications. (Go to http://1.usa.gov/a3xzIQ for more from HRSA on health literacy.) It's highly likely that at several points in Ms. Johns's encounters with health care professionals, her medication list was reviewed and confirmed. It's just as likely that during her hospital stay no one explored with her and her husband how the adverse effects related to the use of diuretics might affect the quality of her life. Even if the option of taking her pills at alternative times had been discussed, it may not have been done at the couple's level of understanding. Are the Johnses noncompliant, or do they merely lack the knowledge necessary to relate cause and effect?

Discovering this deficit at this point in the course of Ms. Johns's hospitalization enables the nurse to relay the information to the rest of the patient's health care team, including the pharmacist and physician, with the goals of developing a plan that incorporates the patient and caregiver into the decision making process and, ultimately, improving outcomes in the patient.

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THE CRUCIAL ROLE OF THE CAREGIVER

Informal (unpaid) caregivers provide the majority of assistance frail older people receive. (See the first article in this series, "The Hospital Nurse's Assessment of Family Caregiver Needs," October.) According to a report from the National Alliance for Caregiving, in collaboration with AARP, nearly one-third of American households report that at least one person has provided unpaid assistance to an older adult family member or loved one.1 The burden on these caregivers grows dramatically when their loved ones are hospitalized. Family caregivers can provide vital information to the health care team and emotional and practical support to the hospitalized patient. In turn, hospitalization is an opportunity for the team to provide intensive education, addressing the needs of the older adult and preparing both the patient and the caregiver for a safe discharge.

Outcomes are better when hospital staff find time to collaborate with caregivers on discharge planning. Caregivers report that they feel more in control when they have adequate information and less stressed when they believe they're adequately prepared to manage care at home.2, 3 This is important because a caregiver's lack of confidence contributes to an increased risk of error as well as readmission.4-9 The more a person knows about a role before performing it, the better she or he does. Just as patients tend to be more satisfied and adhere to treatment when they take greater roles in health care decision making,10 so families involved in discharge planning have a better understanding of the meaning and importance of continuity of care.11

But how is this accomplished? It's our contention that patient education is a basic component of disease and symptom management and should begin at admission and extend throughout the hospital stay. In this second article in the Supporting Family Caregivers series, we focus on incorporating proven principles of adult learning into daily practice interactions as a vital role of the bedside nurse in supporting and educating the family caregiver.

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THE ROLE OF THE NURSE IN PATIENT EDUCATION

The National Center for Ethics in Health Care has stated that "communicating effectively is an important aspect of showing respect to patients."12 Certainly that notion applies to the caregiver as well. As with involving the patient and caregiver in planning, effective communication is linked to greater satisfaction with care and improved adherence.11, 13 Providing the patient and family with the information they need to actively participate in promoting the patient's health and healthful behaviors has long been one of the primary roles of the nurse, and the value of patient education by nurses is supported by decades of research.4, 14, 15 As early as 1918 the National League of Nursing Education released its Standard Curriculum for Schools of Nursing, which articulated the need to prepare nurses for the task of teaching the public and called on nurses to "arouse strong incentives as a means of forming good hygienic habits."16 This critical aspect of health care is woven into the fabric of Healthy People 2020 from the U.S. Department of Health and Human Services, which focuses on changing health behavior and advocates patient and consumer education as a key interventional strategy.6, 15 Tied firmly to this is the need for effective discharge planning.

An argument could be made that any member of the health care team, including the physical therapist, the respiratory therapist, the pharmacist, the social worker, the care coordinator, the certified diabetes or cardiac educator, the transitions coach, or the physician, could take the lead in teaching the plan of care that the team has devised for the medically complex older adult. Indeed, each member of such an interdisciplinary team provides crucial elements in the in-depth assessment of patient and caregiver needs and communicates related findings and instructions.4, 7, 9, 10, 15, 17 However, it's the nurse who features most directly and consistently in the patient-centered relationship. Also, it's the role and responsibility of the nurse to coordinate communication among the different practitioners and pull together the plan for discharge needs. The bedside nurse, therefore, remains the gatekeeper charged with educating the patient and family caregiver and preparing them for discharge.15

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MEETING CHALLENGES

Barriers to complete assessment and communication are plentiful in the health care environment. To communicate effectively, it's important for all health care providers—and perhaps nurses in particular, given their importance in this area—to be acutely aware of the challenges and to be prepared when they arise.

Cultural differences. Differences can be found in beliefs about social interaction, communication styles, and views on health and healing, as well as end-of-life issues. The patient's cultural practices must be taken into account to provide successful discharge teaching.11, 18 Acknowledging the importance of ethnicity or culture and asking the patient or caregiver to provide this information both help when planning for discharge.18, 19

All staff should be mindful of a family's level of acculturation, the extent to which various members have adapted to what one might consider the prevailing or "mainstream" culture. There can be discrepancies between a patient's or caregiver's traditional cultural values and her or his actual practice or behavior once an elderly loved one becomes ill.20 Even caregivers who've grown up in this country can experience conflicts between their own upbringing and more modern values and may struggle in their efforts to be the conduit for communication between hospital staff and the patient.

According to a draft of a report on research conducted by Lake Research Partners for the AARP Public Policy Institute, African American patients and caregivers believe they aren't given adequate hospital teaching, especially concerning the physically demanding aspects of caregiving, such as bathing, transferring, and dressing, and want more hands-on training; Latinos report that the teaching they receive at discharge is confusing and overwhelming (permission to cite the report granted by Michael Perry of Lake Research Partners, September 14, 2011). In a survey study of racial and ethnic differences in patients' perceptions of bias and cultural competence in health care, Johnson and colleagues reported that African American, Hispanic, and Asian respondents were more likely than white respondents to perceive that medical staff judge them unfairly and treat them with disrespect. Moreover, respondents from all three groups report that aspects of their culture, including the way they speak, are looked upon unfavorably.19

Nonverbal signals. Nonverbal communication and affect vary widely among cultures. For example, nodding of the head in some Asian American cultures doesn't necessarily signify understanding but can be a sign of politeness. Like-wise, some Asian Americans might say yes to a question as a means of avoiding conflict. In contrast, some Latino Americans may nod their heads not to signify agreement, but as a sign that they're listening. (For more detailed information on this complex topic, see Culture Clues from Patient and Family Education Services of the University of Washington Medical Center in Seattle: http://depts.washington.edu/pfes/CultureClues.htm.) We believe it's safe to say that with all cultures, and especially with regard to older adults, the use of respectful communication, such as calling the patient and caregiver by their titles—Mr., Mrs., Ms., and Miss, as appropriate—goes a long way toward establishing trust and mutual respect.

Language differences. Despite access to interpreter phone lines being a mandated standard of hospital practice, language differences can become a barrier when an interpreter isn't immediately available. Although the use of family members as interpreters may seem efficient, it should be considered a last resort because of patient-privacy concerns and the provider's inability to assess the accuracy of the interpretation or the interpreter's understanding of medical terminology.18, 19 When a patient or caregiver isn't proficient in English, it's important to speak slowly and avoid the use of colloquialisms and slang.

Although it's unrealistic to expect nursing staff to be proficient in working with every population, it's important to apply a level of awareness and sensitivity to all patients and their families.18 For this reason we have provided supportive Web sites that can be used by hospital staff to practice providing culturally competent care to all patients and families; see Online Help with Cultural Competency.

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Functional and health care literacy. Functional literacy refers to one's ability to comprehend written material. But in health care, when considering the skills necessary for safe medication management, assessing for the ability to comprehend number- or math-related health care information (also sometimes called numeracy), such as dosing instructions or interpreting blood glucose values, becomes of equal importance.21

Socioeconomic status, anxiety, cognitive capacity, the ability to concentrate, memory, and sleep deprivation can all influence functional literacy.4, 15, 21

According to the National Patient Safety Foundation, the 90 million people in the United States with low levels of literacy (according to 1993 statistics) may be at risk for poor health outcomes related to some level of functional illiteracy (see http://bit.ly/p7tMFH for statistics on literacy from the National Patient Safety Foundation). Additionally, 66% of U.S. adults ages 60 and over have inadequate or marginal literacy skills. In epidemiologic studies, Weiss notes that people with limited functional literacy come from all segments of society, and most are white, native-born Americans.22 Given this, it should be assumed that patients' education and literacy levels vary widely and that their reading level is lower than their education level. As noted by Donaldson and colleagues, in a health care system in which standard written materials are generally the source of health care information, it's clear that adjusting education to meet individual levels of both functional and health literacy is imperative.15 Assessing the patient's literacy level requires a gentle and considerate approach.

The Newest Vital Sign. One quick tool that's available free of charge from Pfizer is called the Newest Vital Sign (http://bit.ly/pFQj72). It's available in Spanish and English. Developed by Weiss and colleagues, it consists of a nutritional label (for ice cream) and related questions that allow the provider to quantify a patient's ability to understand and apply words and numbers in real-life situations. The tool has been found to be reliable in comparison with more rigorous literacy instruments,22-24 and the time involved in administration is said to offset the time spent clarifying confusion over a diagnosis or medications.23

Teach back. Another method of assessing literacy is "teach back" (also sometimes referred to as the "interactive communication loop"), a style of communication that confirms that any information or education provided has been understood by the learner.21 Teach back involves asking learners (in a nonshaming way) to repeat back, using their own words, what they think they need to know or demonstrate what they think they should do. Teach back isn't a test but is rather an opportunity for the provider to check how well a concept was understood. Too often the use of teach back is left to the last minute on the day of discharge, which doesn't readily lead to assimilation of knowledge of a skill.4, 15, 21 The National Quality Forum has identified teach back as one of 50 essential safe practices in health care and recommends that it be incorporated into daily practices in health care. (For more on this educational technique, see Teach Back.12)

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Sensory limitations. Sensory limitations in the caregivers, such as vision and hearing loss, can affect not only the practitioner's ability to communicate with and educate them, but also the caregivers' ability to carry out the role of caregiver, especially in the area of instrumental activities of daily living (IADLs).25 It's of the utmost importance that when the provider recognizes that a sensory deficit exists, appropriate modifications are made and supportive interventions are used in the home to assist as needed with IADLs. Raina and colleagues found that in community-dwelling older adults, sensory limitations affected the ability to do heavy chores, shop for groceries, and perform housework.26 And although impaired vision can severely limit the caregiver's ability to read the small print on medication labels and accurately dispense medications, both visual and hearing impairment can compound the situation.26-29

Vision. All printed health education material and visual aids must be readable and understandable. It's recommended that, to accommodate deficits in either vision or literacy, they be written at the fifth-grade level and printed in a large font (14 points or larger); in addition, the contrast of black on white should be high.4, 6, 15, 21, 28, 29 Inexpensive handheld magnifiers can be given to patients and caregivers to aid in reading labels and printed materials.28 Instructions must be both written and verbal and in the person's primary language.30 Pictorial representations of information (such as a picture of a sunrise or a moon on a medication list to indicate when a medication should be taken) can be provided to support the written word.

Hearing. When a hearing deficit is present, the adult's ability to interact can be improved by changing people's placement in the room or moving to a room that has less background noise.29 Additionally, amplified hearing devices, such as the Pocketalker devices from Williams Sound, can be extremely helpful.27 Since the loss of hearing will affect the caregiver beyond the patient's hospital stay, if it's possible, the caregiver should be given a device to use at home.

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THE CAREGIVER'S COGNITIVE AND HEALTH STATUS

Cognitive appraisal and assessment for general health status and functional ability can be conducted using observation during interactions with the caregiver, especially when teach back is employed. An inability on the part of the caregiver to stay focused and attentive could be the result of medications, pain, or an overall poor health status. An obviously low energy level suggests that education should be staggered to avoid fatigue.29 Because these variables can wax and wane, it's important to provide education when the adult caregiver is in the most advantageous condition.15, 29

Repeated attempts resulting in failed retention or acquisition of skills required to provide care, despite the use of the approaches mentioned above, signal the need for a new approach and that more support in the home for both the caregiver and patient should be considered by the health care team.

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TEACHABLE MOMENTS

Because time is limited during a hospital stay, it's crucial for the nurse to seize every possible opportunity to communicate, making use of what can be termed "teachable moments." Teachable moments can be formal or informal, spontaneous or structured; they can occur during almost any interaction with a caregiver15: while administering medications, conducting assessments, preparing the patient for testing, or transferring the patient from the bed to a chair. All team members can take advantage of teachable moments that arise and pay attention to the way in which the caregiver relates to the information provided. In this way the team may be able to gauge the caregiver's level of health literacy and modify approaches and the content of information as necessary.4, 15, 29

The need to know. Adults are more apt to be motivated to learn when they need the information. Although that may seem obvious, it's important to convey why information or a skill is necessary or what the benefits will be to the patient or caregiver. The readiness to learn is driven by real life, and information that's provided when it's pertinent is more easily assimilated.4, 10, 15, 29, 31

Example: revisiting the Johnses. Consider the Johnses again, and Mr. Johns's assertion that his wife doesn't always take her medications. The nurse's approach to medication management and related education can now change to meet Mr. Johns where he is, based on recognition of his lack of knowledge.

The nurse then says, "Mr. Johns, your wife has what's called congestive heart failure, which means that her heart muscle is weaker than normal. The Lasix—the furosemide—she takes helps to ease the work of the heart by decreasing fluids in the body, and that makes it easier for her to breathe and walk, which is why it's so important that she take the Lasix every day, even though decreasing the fluids in the body makes her have to go to the bathroom."

In this way, the nurse has helped to connect the dots for the caregiver, from pathophysiology to hospitalization to the need for medication adherence. If this teachable moment had passed, as often happens on a busy medical unit, critical information might have been missed, yet it only took a few moments at the bedside.

Motivation. No matter how dynamic we are as teachers, a caregiver's motivation to learn comes from internal desires, such as improving the quality of or satisfaction with one's life. When people—and particularly those with chronic health care conditions—are forced to choose between health-related needs and the desire to have a life, they might choose the latter, at the cost of their precarious health. In such situations, it's imperative to work with patients and caregivers alike to find safe alternatives that will help them keep their lifestyle while maintaining function and health as much as possible.4, 10, 15, 29, 31 When we impose our will on them, negating their beliefs or desires, we lose them, and any change in learning or behavior has ceased. In such instances, compromise is needed, and health care providers must be flexible.

Example: keeping up with the Johnses. Including the patient and family in the discussions and decision making allows them to take part in finding solutions that are agreeable to them and that they'll be more apt to apply to their home care and health care management.4 Once again consider the Johnses.

"Mr. Johns," the nurse asks, "when you and Mrs. Johns go out, what time of day is that usually?" Mr. Johns says that once a week they go grocery shopping, usually about 11 AM, and once a week they like to meet friends for lunch at noon. In both cases, they're home by 2 PM. Checking with the pharmacist on your team, you learn that the onset of action of oral furosemide (and consequently, the onset of the need to urinate) is around 30 minutes, but the duration of action is up to six hours. Sharing this with the couple opens the door to discussing at what time Ms. Johns might be comfortable taking the medication.

"Perhaps you can bring it with you and take it right after lunch, if you intend to be home within 30 minutes? How long is the drive?" The Johnses agree to try this approach.

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THE GRAND ILLUSION

There's a tendency in health care to underestimate patients' and caregivers' need for information and overestimate providers' effectiveness in conveying information.21 Keeping in mind the quotation at the top of this article—"The single biggest problem in communication is the illusion that it has occurred"—will go a long way toward improving caregivers' (and patients') satisfaction with care, reducing their stress, and improving outcomes in the loved ones they care for. The demands placed on a care provider in the hospital setting are daunting. However, our patients' caregivers have asked for support, and regulatory agencies are demanding that it be a priority of care. And the truth is, teaching the caregiver as well as the patient is within the scope of nursing practice, and can be incorporated into any patient- and family-centered plan of care and shouldered by the nurse with the support of an interdisciplinary team.

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REFERENCES

1. National Alliance for Caregiving in collaboration with AARP. Caregiving in the U.S. 2009. Washington, DC: National Alliance for Caregiving; AARP; 2009 Nov. http://www.caregiving.org/data/Caregiving_in_the_US_2009_full_report.pdf.

2. McMurray A, et al. General surgical patients' perspectives of the adequacy and appropriateness of discharge planning to facilitate health decision-making at home. J Clin Nurs 2007;16(9):1602-9.

3. Archbold PG, et al. Mutuality and preparedness as predictors of caregiver role strain. Res Nurs Health 1990;13(6):375-84.

4. Bond CP, Coleman EA. Reducing readmissions: a blueprint for improving care transitions. Marblehead, MA: HCPro, Inc; 2010.

5. Jencks SF, et al. Rehospitalizations among patients in the Medicare fee-for-service program. N Engl J Med 2009;360(14):1418-28.

6. Given B, et al. What knowledge and skills do caregivers need? Am J Nurs 2008;108(9 Suppl):28-34.

7. Coleman EA, et al. The care transitions intervention: results of a randomized controlled trial. Arch Intern Med 2006;166(17):1822-8.

8. Naylor M, Keating SA. Transitional care. Am J Nurs 2008;108(9 Suppl):58-63.

9. Naylor MD, et al. Comprehensive discharge planning and home follow-up of hospitalized elders: a randomized clinical trial. JAMA 1999;281(7):613-20.

10. Huber DL, McClelland E. Patient preferences and discharge planning transitions. J Prof Nurs 2003;19(4):204-10.

11. Bull MJ, et al. A professional-patient partnership model of discharge planning with elders hospitalized with heart failure. Appl Nurs Res 2000;13(1):19-28.

12. National Center for Ethics in Health Care. "Teach back": a tool for improving provider-patient communication. IN focus: topics in health care ethics 2006 Apr. http://www.ethics.va.gov/docs/infocus/InFocus_20060401_Teach_Back.pdf.

13. Li H, et al. Families and hospitalized elders: a typology of family care actions. Res Nurs Health 2000;23(1):3-16.

14. Levine C. Nursing and social work leadership. Am J Nurs 2008;108(9 Suppl):13-5.

15. Donaldson NE, et al. Principles of effective adult-focused education in nursing. Online journal of clinical innovations: OJCI 1999;2(2):1-22.

16. National League of Nursing Education (U.S.), Committee on Education. Standard curriculum for schools of nursing. 4th ed. Baltimore, MD: Waverly Press; 1922.

17. Maramba PJ, et al. Discharge planning process: applying a model for evidence-based practice. J Nurs Care Qual 2004;19(2):123-9.

18. McBride M. Ethnogeriatrics and cultural competence for nursing practice. Hartford Institute for Geriatric Nursing. 2010. http://consultgerirn.org/topics/ethnogeriatrics_and_cultural_competence_for_nursing_practice/want_to_know_more.

19. Johnson RL, et al. Racial and ethnic differences in patient perceptions of bias and cultural competence in health care. J Gen Intern Med 2004;19(2):101-10.

20. Guberman N, Maheu P. Beyond cultural sensitivity: universal issues in caregiving. Generations 2003/2004;27(4):39-44.

21. Schillinger D, et al. Closing the loop: physician communication with diabetic patients who have low health literacy. Arch Intern Med 2003;163(1):83-90.

22. Weiss BD, et al. Quick assessment of literacy in primary care: the newest vital sign. Ann Fam Med 2005;3(6):514-22.

23. Shah LC, et al. Health literacy instrument in family medicine: the "newest vital sign" ease of use and correlates. J Am Board Fam Med 2010;23(2):195-203.

24. Kann L, et al. Health education: results from the School Health Policies and Programs Study 2006. J Sch Health 2007;77(8):408-34.

25. Graf C. The Lawton Instrumental Activities of Daily Living Scale. Am J Nurs 2008;108(4):52-62.

26. Raina P, et al. The relationship between sensory impairment and functional independence among elderly. BMC Geriatr 2004;4:3.

27. Wallhagen MI, et al. Sensory impairment in older adults: Part 1: Hearing loss. Am J Nurs 2006;106(10):40-8.

28. Whiteside MM, et al. Sensory impairment in older adults: Part 2: Vision loss. Am J Nurs 2006;106(11):52-61.

29. Campbell KN. Adult education: helping adults begin the process of learning. AAOHN J 1999;47(1):31-40.

30. Chugh A, et al. Better transitions: improving comprehension of discharge instructions. Front Health Serv Manage 2009;25(3):11-32.

31. Hibbard JH, et al. Improving the outcomes of disease management by tailoring care to the patient's level of activation. Am J Manag Care 2009;15(6):353-60.

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