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The Family Preferences Index: Helping family members who want to participate in the care of a hospitalized older adult.

Messecar, Deborah PhD, MPH, RN, CNS; Powers, Bethel Ann PhD, RN; Nagel, Corey L. MS, MPH, RN

AJN, American Journal of Nursing: September 2008 - Volume 108 - Issue 9 - p 52–59
doi: 10.1097/01.NAJ.0000334527.52341.bd
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Family members are an important but often underappreciated resource in caring for hospitalized older adults. The Family Preferences Index is a 14-item approach to exploring caregivers' personal choices for participating in the care of hospitalized older adult family members. It can be administered as a structured interview or as a questionnaire. Higher scores indicate a greater preference to participate in care. The nurse can use the responses to the index to plan care that builds a partnership with the family. To watch a free video demonstrating the use of the index, go to http://links.lww.com/A296.

The Family Preferences Index is one approach to helping family members who want to participate in the care of a hospitalized older adult.

Deborah Messecar is an associate professor, Academic Graduate Programs, Oregon Health and Science University in Portland, OR. Bethel Ann Powers is a professor at the University of Rochester School of Nursing in Rochester, NY. Corey L. Nagel is nursing education coordinator at the Providence St. Vincent Medical Center in Portland, OR.

Contact author: Deborah Messecar, messecar@ohsu.edu.

The authors of this article have disclosed no significant ties, financial or otherwise, to any company that might have an interest in the publication of this educational activity.

How to Try This is a three-year project funded by a grant from the John A. Hartford Foundation to the Hartford Institute for Geriatric Nursing at New York University's College of Nursing in collaboration with AJN. This initiative promotes the Hartford Institute's geriatric assessment tools, Try This: Best Practices in Nursing Care to Older Adults: www.hartfordign.org/trythis. The series will include articles and corresponding videos, all of which will be available for free online at www.nursingcenter.com/AJNolderadults. Nancy A. Stotts, EdD, RN, FAAN (nancy.stotts@nursing.ucsf.edu), and Sherry A. Greenberg, MSN, GNP-BC (sherry@familygreenberg.com), are coeditors of the print series. The articles and videos are to be used for educational purposes only.

Routine use of Try This tools or approaches may require formal review and approval by your employer.

It's the afternoon of Christmas Eve, and 78-year-old Duane Wilson has been brought, unconscious, to the ED by ambulance. (This case is a composite based on our clinical experience.) The family's hope had been that Grandpa could enjoy Christmas with the family, but earlier that morning his condition had worsened, and at noon he collapsed. His internist asked the family to bring him to the hospital so he could determine the cause of his altered mental status and rule out stroke.

Mr. Wilson has been admitted to a two-bed room (the other bed is unoccupied). His medical history includes hypertension, which is usually well controlled, and chronic obstructive pulmonary disease that is managed with inhalers and bronchodilators without supplemental oxygen. In the last 24 hours at home he struggled with balance and periodic disorientation to time and place.

His wife of close to 50 years, his four children, and two of their grandchildren are sitting in the room, looking frightened and anguished. No one is moving. Hoping to determine the family members' desire to participate in care, a nurse invites them to meet with her in a private area for a conversation, where she uses the Family Preferences Index (FPRI) as a guide.

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read it | watch it | try it

Web Video

Watch a video demonstrating the use of the Family Preferences Index at http://links.lww.com/A296.

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A Closer Look

For more information on who provides informal care to older adults, see the supplement to this issue of AJN, "State of the Science: Professional Partners Supporting Family Caregivers," available for free online at www.nursingcenter.com/ajnfamilycaregivers.

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Try This: Family Preferences Index (FPRI)

This is the index in its original form. See page 55.

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THE FAMILY PREFERENCES INDEX

Researcher Hong Li developed the FPRI in 2000 after analysis of in-depth interviews with patients, families, and nurses and many hours of observing hospitalized older adults and their family caregivers.1 She found that family members are willing to work with and learn caregiving skills from the health care team.2 But many factors, such as caregiver health and obligations, the patient–family relationship, and nurses' attitudes or family beliefs about participation, influence what and how much caregivers prefer to do. Using the FPRI the nurse can assess differences in family members' preferences for providing various types of care and use their responses to plan care that builds a partnership between nurse and family.

The FPRI contains 14 items designed to determine caregivers' personal choices regarding participating in hospital care. The items require yes-or-no answers, which according to the index's creator, Hong Li, are assigned numeric values (1 for yes, 0 for no) and summed for a total score.2 Higher scores indicate a greater preference for participating in care. The most important information that can be obtained, however, is how a family member responds to the items on the index; this will help determine which activities, if any, the family member wants to participate in. (There is also an item at the end of the index, which is not counted in the scoring, that addresses any other concerns the family members might have.)

The types of care the FPRI addresses include

* direct care, such as assisting with medical and nursing treatments or helping the patient eat, drink, or move.

* supportive care, such as being there, providing reassurance, engaging in religious practice, or doing enjoyable activities.

* collaboration with the health care team by, for example, participating in decision making, providing information, and learning about the patient's care and treatment.

* the caregiver's own needs.

Rather than assuming what family members might want to do, nurses can use the FPRI to explore specific preferences and integrate them into the plan of care.1,3,4 In addition to determining family members' preferences, some items can validate their contributions. For example, in a hectic clinical environment, family caregivers may feel that they are "in the way." But an item such as "being there" (the first on the FPRI) indicates to family members that their presence is appropriate and even necessary. By addressing the sometimes invisible aspects of care, such as giving reassurance and emotional support, the index recognizes actions that family caregivers consistently report to be some of their most important activities in the hospital.1,2 It also offers the permission some families may feel they need to do supportive or enriching activities like bringing things from home or engaging in religious or enjoyable activities.

Understanding caregiver preferences helps the nurse plan interventions (such as bathing) that will include family caregivers and engage them in problem solving (such as determining the presence of pain).3 Also, engaging family members in care may decrease their worry,3,5 provided that individual preferences are respected and taken into consideration.

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ADMINISTERING THE FPRI

The index can be administered in an interview format or self-administered as a questionnaire. If self-administered, the nurse should then discuss the caregiver's preferences with her or him. Such conversations are probably best held in a private, quiet area without the patient present so that the family member is free to ask questions, to consider how the patient might best be involved in making care decisions, and to express concerns, including reticence about being involved in caregiving. If more than one family member is involved, the nurse should note individual preferences—for example, when the wife wants to be the decision maker but the son wants only to "be there"—and identify other requests in the box provided. The FPRI can be administered either individually or in a group setting. (To view the segment of the online video about assessment using the FPRI, care planning, and the debriefing of the caregiver, go to http://links.lww.com/A297.)

In the case of Mr. Wilson, the nurse approached the family as a group during her initial assessment of the patient by saying: "I'll be taking care of Mr. Wilson during the next 12 hours. I'd like to explore the ways you might want to be involved with his care, and I'd like to ask you a set of yes-or-no questions about that. There might be items on the list you don't want to participate in right now. If your feelings change, you can let us know. It's also okay if different family members prefer to do different things. There is no right or wrong answer to any of these questions."

When the nurse asked the first question, Mr. Wilson's family members all agreed they wanted to be there for him; the nurse gave that item a score of 1, making note of the family members who wanted to be involved in this part of care. (Because the nurse interviewed the family as a group, she noted the specific role each person wanted to take concerning each item.) They also wanted to provide links between Mr. Wilson and the outside world; bring him things from home; provide emotional support; and help with eating, drinking, and bathing. Again, the nurse gave each item a score of 1. Both his wife and his children wanted to participate in decision making and were very interested in learning about and possibly participating in his medical care and treatment. They also wanted to make sure that the health care team would identify and meet his needs. The nurse assigned a score of 1 to each of those four items. While the family wasn't sure how they could work together with the health care team, they were interested in doing what they could with guidance and in providing any information needed; the nurse gave a 1 to each of those items as well. The uncertainty of Mr. Wilson's situation made the family feel unable to focus on enjoyable activities, and because he was not a religious man, they said engaging in religious practice wasn't necessary. The nurse assigned a score of 0 to those two items. Finally, the nurse gave the item "taking care of myself" a score of 1 because all of the family members expressed concern about taking care of one another under the stressful circumstances.

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SCORING AND INTERPRETING THE RESULTS

When using the FPRI to determine the care activities family members want to participate in, adding up the responses to the individual items results in a score between 0 and 14. Totaled scores suggest the degree of caregiving involvement that family members prefer. Preferences will vary by family member and relationship to the patient. The nurse should be prepared to follow up on the stated preferences with necessary teaching. Responses to specific FPRI items coupled with any details the family members share about how they would like to be involved establish a basis for collaboration between the family and the health care team.

Mr. Wilson, continued. Mr. Wilson's family scored 12 out of 14 on the FPRI, indicating a high degree of interest in participating in his hospital care. All family members expressed a desire to be involved in two ways: being there and participating in medical decision making. To better accommodate them the nurse arranged for more chairs to be placed in the patient's room; she also flagged the chart so that the other team members would know about the family's strong preference to be included in all care-planning decisions. In addition, the nurse noted that the patient's wife wanted to be a part of as much direct care as possible, in preparation for her husband's return home. Although all family members wanted to learn about the care Mr. Wilson would need at home, it was agreed that his wife would be the person given this instruction; she then would supervise care at home. (She was also the family member with the most flexible schedule and could be available to receive instruction from staff.) To address family members' needs to care for themselves while at the hospital (one of the items on the FPRI), the nurse also provided the schedule and location of the cafeteria and a map of the hospital, and she began checking to see whether Mr. Wilson could have a large, private room.

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SPECIAL CONSIDERATIONS

Some family members may not want or feel able to participate in care. This is especially important to identify if a patient will require significant care after discharge. In such cases, it might not be safe to discharge a frail older adult to her or his home. When this is discovered early in the hospitalization, the team can help the family make arrangements for needed care.

The FPRI also may not capture culturally specific aspects of family caregiving preferences. The index was developed on the basis of interviews with and observations of a relatively homogeneous sample of middle-class patients and families; it is therefore not yet known whether the FPRI is applicable to all socioeconomic and cultural groups.1

To view the portion of the online video in which an expert is interpreting the results and incorporating family preferences, go to http://links.lww.com/A298.

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COMMUNICATING THE RESULTS

Probably the best way for a nurse to communicate a family's preferences to the health care team is to incorporate the FPRI results into the nursing care plan. Nurses can note family members' responses in their narrative in the patient's record. The index, with results inserted, can be kept with the care plan so nurses can update it. Finally, information gained from the FPRI should also be shared with the health care team during conferences.

Nurses can ask about the family preferences as documented in the care plan. For instance: "You expressed an interest in helping the staff feed and bathe your husband. When the next meal arrives, I'll show you some ways to safely help him with his meal." During the course of care, a family member's preferences might change—for example, a patient's wife who was initially afraid to give an injection might gain more confidence as she participates in other aspects of care. The nurse should check to see whether her wishes have changed: "I know you said you would be afraid to give an injection, and that's understandable. I just want to make sure you haven't changed your mind." The nurse is letting the caregiver know that her original preference is okay and that a change in preference is also acceptable. But some items might be answered with such a firm no that the issue should not be raised again unless the nurse has some strong indication to the contrary.

Mr. Wilson couldn't be home for Christmas. But because of the nursing staff's care planning, his family was able to bring a small Christmas tree to his hospital room, along with their favorite holiday foods and presents. In the large, private room the nurse had secured for him, the family shared a meal and opened presents. In addition, after consulting with discharge planners, Mr. Wilson's sons and daughters have been busily preparing for his return home. They had a ramp installed, moved in a hospital bed, and installed bathroom safety equipment. Finally, Mr. Wilson's wife and one of his sons have been working with the physical therapist to learn rehabilitative exercises so they can help Mr. Wilson with them when he returns home.

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CONSIDER THIS

What is the evidence for using the FPRI in practice? In 2002 Li introduced the idea of using the FPRI as an adjunct to patient care planning, including family teaching and preparation for hospital follow-up care.2 In 2007 Marie Boltz, editor of the Try This series, published a short article describing the FPRI for the series (see Assessing Family Preferences for Participation in Care in Hospitalized Older Adults, page 55). A search of the CINAHL and Health and Psychosocial Instruments databases using the name of the index yielded no additional evidence of its use in practice beyond the initial reports of its development.1, 2 Nonetheless, evidence to support the use of such an approach in practice can be found in studies that have documented the importance of involving families in care during hospitalization as a way of facilitating discharge planning.6–8 We recommend placing less emphasis on deriving a score and more on using this approach as a guide to ensure that care is appropriately planned.

Future reports will address further evaluation of the FPRI in a recently completed clinical trial of an intervention for improving outcomes in hospitalized elderly patients and family caregivers. Li published a 2003 report of preliminary pilot work in which the FPRI also was used.9

Reliability and validity. There have been no published reports of the reliability and validity of the FPRI.

Sensitivity and specificity. There have been no published reports of the sensitivity and specificity of the FPRI.

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Watch It!

Go to http://links.lww.com/A296 to watch a nurse use the Family Preferences Index. Then watch the health care team plan strategies for involving family members in hospital care.

View this video in its entirety and then apply for CE credit at www.nursingcenter.com/AJNolderadults; click on the How to Try This series link. All videos are free and in a downloadable format (not streaming video) that requires Windows Media Player.

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Online Resources

For more information on this and other geriatrics assessment tools and best practices go to www.ConsultGeriRN.org, the clinical Web site of the Hartford Institute for Geriatric Nursing, New York University College of Nursing, and the Nurses Improving Care for Healthsystem Elders (NICHE) program. The site presents authoritative clinical products, resources, and continuing education opportunities that support individual nurses and practice settings.

Visit the Hartford Institute site, www.hartfordign.org, and the NICHE site, www.nicheprogram.org, for additional products and resources. Go to www.nursingcenter.com/AJNolderadults and click on the How to Try This link to access all articles and videos in this series.

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REFERENCES

1. Li H, et al. Families and hospitalized elders: a typology of family care actions. Res Nurs Health 2000;23(1):3–16.
2. Li H. Family caregivers' preferences in caring for their hospitalized elderly relatives. Geriatr Nurs 2002;23(4):204–7.
3. Li H. Hospitalized elders and family caregivers: a typology of family worry. J Clin Nurs 2005;14(1):3–8.
4. Silverstein NM, Maslow K, editors. Improving hospital care for persons with dementia. New York: Springer; 2006.
5. Bull MJ. Managing the transition from hospital to home. Qual Health Res 1992;2(1):27–41.
6. 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.
7. Naylor M, et al. Comprehensive discharge planning for the hospitalized elderly. A randomized clinical trial. Ann Intern Med 1994;120(12):999–1006.
8. Naylor MD, et al. Comprehensive discharge planning and home follow-up of hospitalized elders: a randomized clinical trial. JAMA 1999;281(7):613–20.
9. Li H, et al. Creating Avenues for Relative Empowerment (CARE): a pilot test of an intervention to improve outcomes of hospitalized elders and family caregivers. Res Nurs Health 2003;26(4):284–99.
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Hong Li, 1959–2006

A researcher who worked to develop the Family Preferences Index.

Hong Li was a graduate of the School of Nursing, Beijing Medical University, People's Republic of China. She earned bachelor's, master's, and doctoral degrees from the Oregon Health and Science University in Portland. Li developed the Family Preferences Index (FPRI) while producing what became the first doctoral dissertation based on nursing research completed by a native of mainland China and recorded in the National Library of China in Beijing (1996).

In 1998 Li joined the faculty at the University of Rochester School of Nursing in Rochester, New York. There she began to publish reports of her ongoing research, which focused on family members' care of hospitalized older adults. This included her report on the use of the FPRI.1 Her collaborative research with nurses in Beijing and the United States was aimed at improving outcomes by teaching and empowering families to assist in their loved ones' recovery. Li's unfinished work on the National Institutes of Health–funded clinical trial of her intervention Creating Avenues for Relative Empowerment (CARE; now with one of this article's coauthors [BAP] as the principal investigator) will be completed and disseminated by her research team with support from the Center for Research and Evidence-Based Practice at the University of Rochester School of Nursing. In so doing her colleagues look to honor her scholarship and fulfill her vision of worldwide testing and distribution of the CARE program.2

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REFERENCES

1. Li H. Family caregivers' preferences in caring for their hospitalized elderly relatives. Geriatr Nurs 2002;23(4):204–7.
2. Li H, et al. Creating Avenues for Relative Empowerment (CARE): a pilot test of an intervention to improve outcomes of hospitalized elders and family caregivers. Res Nurs Health 2003;26(4):284–99.

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