Journal of Gerontological Nursing

ESTABLISHING PARTNERSHIPS WITH FAMILY CAREGIVERS: Local and Cosmopolitan Knowledge

Theresa A Harvath, RN, PHD; Patricia G Archbold, RN, DNSC, FAAN; Barbara J Stewart, PHD; Sally Gadow, PHD; Jane Marie Kirschling, RN, DNS; Lois Miller, RN, PhD; Jane Hagan, RN, BSN; Kathy Brody, RN, BSN; Janet Schook, RN, BSN

Abstract

Families now provide most of the care received by older people in the United States. Proposed changes in the health care system will mean that families must take an even greater role in delivering health care. It is crucial that nurses practicing in a variety of settings be prepared to establish partnerships with family caregivers in order to attend to the long-term care needs of older people.

Nursing theorists and researchers seek information that is generalizable across situations. When applied to practice, however, these generalizations must be tailored to fit a specific client - whether a patient, a family, or a community (Brown, 1992; Cox, 1982). Implicit in this concept of individualization of nursing care is the importance of acknowledging patients' understanding of how their own health problems manifest and the impact of these problems on their lives (Corbin, 1988).

In our research with families giving care to frail older people, we have found that caregivers have important information that is unique to their care receiver (eg, manifestations of the care receiver's health problems, responses to medications, subtle signs of a worsening condition) and essential to his or her care. We refer to this unique information as local knowledge, a concept in anthropologic theory (Geertz, 1983).

In addition, we recognize that gerontological nurses possess knowledge and skills that are generalizable across caregiving situations and also are critically important in the care of the older individual as well as the family caregiver. We refer to the nurses' knowledge and skills as cosmopolitan knowledge, a term used in anthropology for universal forms of knowledge (Good, 1992).

The terms local and cosmopolitan provide a useful framework for working with families in long-term care. In order for such work to be effective, it is important to use scientific knowledge that is generalizable across caregiving situations - as well as knowledge that is unique to a particular caregiving situation. Thus, it is important to blend both local and cosmopolitan knowledge in thinking about the problems and concerns of family caregivers and their frail relatives.

DEFINITION OF TERMS

Local knowledge is knowledge that is unique to the inhabitants of a particular culture. The term refers to the skills and understanding that the family brings to the caregiving situation. It includes the beliefs families have about the nature of the caregiving problems they are managing, the perceptions they have about what factors influence the problems, and the strategies they use to manage problems and/or their consequences. The family's local knowledge is derived from experience in managing the older person's chronic illness and is embedded in the context of the family culture and relationships.

In contrast, cosmopolitan knowledge is universal (or general) knowledge that is brought to a particular situation. The term signifies the skills and understanding that the gerontological nurse brings to the caregiving situation. The nurse's cosmopolitan knowledge is derived from his or her educational background and experience giving care to older adults and their families.

An Analogy

A story about riverboat pilots on the lower Mississippi River, aired on National Public Radio (NPR), provides a useful analogy to local and cosmopolitan knowledge. According to the NPR report, the waters of the lower Mississippi are difficult to navigate. The channel is constantly changing, depending on the weather, the season, and the annual rainfall. The navigational complexities of the river are such that even the most competent ship captains can have difficulty moving upstream through these changing waters.

The ship captains are professionals who understand fully the principles of navigating a river. They understand that river currents cause rapid changes in the river bottom and they know…

Families now provide most of the care received by older people in the United States. Proposed changes in the health care system will mean that families must take an even greater role in delivering health care. It is crucial that nurses practicing in a variety of settings be prepared to establish partnerships with family caregivers in order to attend to the long-term care needs of older people.

Nursing theorists and researchers seek information that is generalizable across situations. When applied to practice, however, these generalizations must be tailored to fit a specific client - whether a patient, a family, or a community (Brown, 1992; Cox, 1982). Implicit in this concept of individualization of nursing care is the importance of acknowledging patients' understanding of how their own health problems manifest and the impact of these problems on their lives (Corbin, 1988).

In our research with families giving care to frail older people, we have found that caregivers have important information that is unique to their care receiver (eg, manifestations of the care receiver's health problems, responses to medications, subtle signs of a worsening condition) and essential to his or her care. We refer to this unique information as local knowledge, a concept in anthropologic theory (Geertz, 1983).

In addition, we recognize that gerontological nurses possess knowledge and skills that are generalizable across caregiving situations and also are critically important in the care of the older individual as well as the family caregiver. We refer to the nurses' knowledge and skills as cosmopolitan knowledge, a term used in anthropology for universal forms of knowledge (Good, 1992).

The terms local and cosmopolitan provide a useful framework for working with families in long-term care. In order for such work to be effective, it is important to use scientific knowledge that is generalizable across caregiving situations - as well as knowledge that is unique to a particular caregiving situation. Thus, it is important to blend both local and cosmopolitan knowledge in thinking about the problems and concerns of family caregivers and their frail relatives.

DEFINITION OF TERMS

Local knowledge is knowledge that is unique to the inhabitants of a particular culture. The term refers to the skills and understanding that the family brings to the caregiving situation. It includes the beliefs families have about the nature of the caregiving problems they are managing, the perceptions they have about what factors influence the problems, and the strategies they use to manage problems and/or their consequences. The family's local knowledge is derived from experience in managing the older person's chronic illness and is embedded in the context of the family culture and relationships.

In contrast, cosmopolitan knowledge is universal (or general) knowledge that is brought to a particular situation. The term signifies the skills and understanding that the gerontological nurse brings to the caregiving situation. The nurse's cosmopolitan knowledge is derived from his or her educational background and experience giving care to older adults and their families.

An Analogy

A story about riverboat pilots on the lower Mississippi River, aired on National Public Radio (NPR), provides a useful analogy to local and cosmopolitan knowledge. According to the NPR report, the waters of the lower Mississippi are difficult to navigate. The channel is constantly changing, depending on the weather, the season, and the annual rainfall. The navigational complexities of the river are such that even the most competent ship captains can have difficulty moving upstream through these changing waters.

The ship captains are professionals who understand fully the principles of navigating a river. They understand that river currents cause rapid changes in the river bottom and they know how to steer and maneuver their boats to avoid shallow water. The captains possess cosmopolitan knowledge about river navigation. However, the peculiarities of a particular stretch of the river are known only to the local pilots. Consequently, there are riverboat pilots who specialize in navigating specific areas of the river. When a ship is being brought upstream from the Gulf of Mexico, the ship's captain delegates control of the boat to the pilots who have local knowledge of the river. The partnership of the pilot and captain is essential to negotiate safe passage through the waterway.

DEVELOPMENT OF THE CONCEPTS OF LOCAL AND COSMOPOLITAN KNOWLEDGE

Local knowledge is a term used in a variety of disciplines to refer to a specialized body of knowledge that is an essential supplement to more general information. Anthropologists use the term to describe the knowledge of local customs, practices, or the environment held by inhabitants of an indigenous culture. For example, Lopez (1986) described how his lack of local knowledge inhibited his ability to experience the Arctic as a native might:

My route across Pingok seems rich, but I am aware that I miss much of what I pass, for lack of acuity in my senses, lack of discrimination, and my general unfamiliarity. If 1 knew the indigenous human language, it would help greatly. A local language discriminates among the local phenomena, and it serves to pry the landscape loose from its anonymity.

Anthropologists listen to how people in different cultures describe things in their local language; nurses listen to the local language of their patients. In the preface to their nursing book on caring, Benner and Wrubel (1989) wrote that the "dominant view of Western tradition emphasizes abstract, general, theoretical knowledge while overlooking and devaluing local, specific, practical knowledge and expert skillful clinical judgments about particular clinical situations."

References to local and cosmopolitan knowledge have appeared in the nursing literature; however, the terms themselves are not necessarily used. For example, Roberts (1983) wrote,

The information held by nurses is general information about physiology of the average person, or even of a special class of persons (eg, the elderly, children), or information about behavior of the average 5-year-old child, or about the usual response to illness. Clients bring with them specific information - the particular quirks of their own bodies, the specific feelings they are experiencing, and their own family environments. Both of these kinds of information are necessary for effective problem solving.

According to Good (1992), the natural-science view is that knowledge is inherently universal and local deviations from this universal knowledge should be termed "beliefs." Good also stated, however, that in the view of anthropologists - and many health researchers throughout the world - knowledge is inherently local. Thus, a blending of universal and local knowledge, including its nuances, is useful for applied interventions.

Similarly, in a study of 10 family caregivers to people with dementia, Harvath (1990) identified a concept that seemed to make a difference in how well caregivers managed problem behaviors related to the dementia. That concept was labeled "knowing the care receiver" and defined as the "caregiver's knowledge and understanding of the care receiver's premorbid personality, his/her dementiarelated disabilities, and how he/ she reacts or behaves in different situations" (Harvath, 1990). Caregivers who had a richer, more indepth understanding of how dementia manifests in the care receiver (caregivers who had local knowledge) reported less difficulty managing problem behaviors than caregivers who lacked that insight.

Finally, Tanner and Benner (1993) noted that the nurse's scientific knowledge about her practice area does not, in and of itself, constitute expert nursing care. According to their research, what distinguishes expert nursing practice is the application of the knowledge base to an in-depth understanding of the patient as an individual. Expert nursing practice was characterized by a blending of scientific knowledge with an understanding of the patient's unique situation.

The Authors' Impetus for Researching Local and Cosmopolitan Knowledge

Our own interest in local and cosmopolitan knowledge grew out of our research on family caregiving. In an early, qualitative study of 17 family caregivers, we asked how they learned to care for their frail older family members (Archbold, 1984). The caregivers reported using several formal sources (ie, previous work, health professionals, books and articles) as well as informal sources (ie, previous caregiving, trial and error, friends and relatives) to learn about caregiving.

We were particularly interested in the caregivers' accounts of learning by trial and error. For some caregivers, this appeared to be a "hit or miss" approach that represented desperate attempts to solve difficult problems in caregiving when all else failed. For other caregivers, however, learning by trial and error involved a methodical, reflective process that produced keen insight into the specific problems encountered in their caregiving situations and unique ways of addressing those problems.

In a longitudinal study of 103 family caregivers of older persons recently discharged from the hospital, we explored how much caregivers learned about the long-term care needs associated with caregiving (eg, meeting the care receiver's physical needs, meeting the care receiver's emotional needs, handling the stress of caregiving, and getting formal services for the care receiver) from the formal and informal sources cited above (Archbold, 1985). Only in the areas of meeting the physical needs of the care receiver and setting up services for the care receiver did caregivers report learning more from health professionals than any other source (Stewart, 1993).

Regarding the learning of other aspects of caregiving (eg, meeting the care receiver's emotional needs and handling the stress of caregiving), however, the role of health professionals was less evident. Instead, caregivers learned more about emotional needs and stress from previous caregiving experiences and from trial and error. In addition, caregivers reported that they were prepared for some aspects of caregiving, but not others. Caregivers who reported higher levels of preparedness also reported less rote strain (Archbold, 1990a). The caregiver's perception of preparedness was based on the degree of both local and cosmopolitan knowledge.

In our next study, the PREP Project, we developed nursing interventions to assist families caring for an older family member at home (Archbold, 1990b). PREP is an acronym for PReparedness, Enrichment, and Predictability, which are the three principles underlying the nursing interventions. The interventions differed from traditional home health care in providing services for the family as well as the patient. In traditional home health care, the focus is on the patient; the patient's needs for skilled care define the nature of the relationship he or she has with the nurse. In PREP, meeting the patient's skilled health care needs provided access to the family caregiving situation, allowing the development of a partnership between the nurse and family in order to address longterm care needs.

The PREP intervention had three components: in-home visits by the PREP nurse for 6 to 10 weeks, a caregiving advice line the family could call to have questions about caregiving answered, and a keep-intouch system - a series of structured telephone assessments of the family after they had been discharged from the home visit program. One of the principles that guided the PREP nurse's intervention with the family was consideration of what the family already knew about their situation. Interventions then were tailored to meet the family's unique needs and preferences (Archbold, 1993).

APPLICATION TO GERONTOLOGICAL NURSING PRACTICE

Our research suggests that local knowledge varies among family caregivers in at least three ways. First, the amount of local knowledge varies. Some caregivers seem to have a good understanding of the unique manifestations of the care receiver's chronic illnesses. They are able to recognize subtle cues related to problematic caregiving situations and understand the role these factors have in the problems they manage. Other caregivers have more difficulty in recognizing and understanding the importance of such cues. Their understanding of their caregiving situation may be characterized by misperceptions of or inaccurate explanations for the causes of the problems. These caregivers have limited local knowledge about their caregiving situation.

Caregivers also seem to differ in their ability to use their local knowledge to develop effective intervention and management strategies. They may be able to recognize the subtle cues or factors that contribute to their problem situation; however, they may not be able to see how to use their local knowledge to devise effective solutions. Some caregivers, however, seem to have a keen sense of how to use their local knowledge to intervene effectively; they tailor the approach to meet the unique needs of the care receiver.

Finally, caregivers seem to differ in the extent to which their local knowledge is informed by cosmopolitan knowledge. For example, some caregivers have a good understanding of the illness that the care receiver has, and understand the importance of the various symptoms that may arise; other caregivers are unable to link symptoms to a disease.

Using the concepts local and cosmopolitan knowledge, gerontological nurses can intervene with families who are caring for an older family member at home:

* Acknowledge and affirm the family's local knowledge when it is adequate;

* Develop or enhance local knowledge when it is inadequate;

* Apply local knowledge for problem-solving when caregivers are not able to themselves; and

* Blend local knowledge with cosmopolitan knowledge.

These interventions are illustrated below by cases from the PREP project. (Some of the identifying information has been altered in order to protect the anonymity of the participants.)

Acknowledging and Affirming Adequate Local Knowledge

In the PREP project, a 25-year-old woman cared for her 95-year-old grandmother, who had congestive heart failure. One day the caregiver noted that the grandmother had developed a cough. Although it was not unusual for the older woman to cough in order to clear her throat of secretions, this cough sounded different. The caregiver noticed that the cough became "wet" within 24 hours. Although the caregiver did not fully understand the implications, she knew that something was not right. She became concerned and called the PREP nurse for advice. Based on her discussion with the PREP nurse, the caregiver took her grandmother to the clinic. The patient's diuretic medications were modified and the cough subsided within a day.

This caregiver's knowledge of what was "normal" for her grandmother helped her to detect an important change in status. Although she frequently made astute observations, she did not trust her observations and sometimes was not sure how to interpret the information. The PREP nurse worked to increase this caregiver's preparedness for managing her grandmother's congestive heart failure by acknowledging the caregiver's local knowledge and by helping her to understand the implications of her observations and respond appropriately.

PREP nurses conveyed the value they placed on local knowledge by telling the caregivers stories that described how different families' local knowledge helped solve particular problems. As a result, the caregivers were more willing to share their own local knowledge with the PREP nurse. This valuing of caregivers' local knowledge by PREP nurses seemed to increase the caregivers' trust in PREP nurses and confidence in their own abilities.

Developing and Enhancing Inadequate Local Knowledge

One of the PREP nurses worked with a woman in her 50s who cared for her 82-year-old mother. The mother had suffered a stroke that caused almost total blindness and significant hemiparesis. Before the stroke, the mother lived independently in her own home. She moved in with her daughter after the stroke because she required assistance with bathing, dressing, walking, and toileting.

The daughter tended to move through caregiving activities quickly. In a conversation with the PREP nurse, she expressed frustration that her mother walked so slowly to the bathroom and resisted her efforts to move more quickly. The PREP nurse believed that the mother's slow and careful stride was due to her fear of negotiating the daughter's house because of her loss of vision and unfamiliarity with the house. In order to help the daughter appreciate what her mother was experiencing, the PREP nurse blindfolded the daughter (with her approval) and guided her through the house. This exercise had an immediate effect; the daughter expressed concern regarding how difficult the loss of vision must be for her mother.

On subsequent home visits to this family, the PREP nurse noted that the daughter used more verbal cues when guiding her mother. The PREP nurse enhanced the caregiver's local knowledge by helping the daughter empathize with her mother. As a result, the caregiver developed a better understanding of her mother's fear; this insight allowed her to develop more effective ways of helping her mother.

Helping Caregivers Apply Local Knowledge

One care receiver had suffered multiple cerebral infarcts during the past year, resulting in cognitive impairment and episodes of severe agitation and restlessness. His nocturnal restlessness created a major problem for his wife: He would toss and turn in bed, kick off the covers, get cold, and call out for her. This caregiver believed that her husband's restlessness was caused in part by emotional and physical discomfort, but she did not know what to do with her knowledge. The PREP nurse thought that the wife had accurately assessed the situation. The nurse affirmed the assessment of the care receiver's behavior and suggested that the caregiver "swaddle" her husband at night, tucking his covers around him securely. This not only reduced his restlessness, but also seemed to help him feel warm and secure. Both caregiver and care receiver were then able to sleep for longer periods.

Blending Local and Cosmopolitan Knowledge

In each of the situations described above, the PREP nurse drew on her cosmopolitan knowledge to assist the caregiver in managing complex caregiving situations. The following account, of a wife caring for her chronically ill husband illustrates how PREP nurses blended their cosmopolitan knowledge with local knowledge.

The caregiver reported feeling unprepared to manage her husband's aggressive behavior. She described how her husband - who had extremely poor hearing and a history of diabetes, retinal detachments, and multiple cerebral vascular accidents - was prone to sudden, angry outbursts. The caregiver attributed this behavior to the care receiver's temper and believed he should be able to control it. When the PREP nurse explored the situation further, however, the caregiver noted that the aggressive behavior represented a significant departure from the care receiver's premorbid personality. The PREP nurse then questioned whether the behavior could be related to the recent strokes, episodes of hyper- or hypoglycemia, or sensory deficits. The caregiver found these alternative explanations plausible and noted that her diabetic neighbor had related how nervous and irritable she was when her blood sugar was elevated.

Thus, using her cosmopolitan knowledge of how strokes, disturbances in blood sugar, and sensory deficits can influence behavior, the PREP nurse helped the caregiver to reinterpret the potential cause of the care receiver's angry outbursts. Although his episodes of aggressive behavior remained difficult for her, she had new insight into how changes in the environment or his blood sugar might trigger these outbursts, and this insight provided her with new strategies for preventing and managing his aggressive behavior.

A second example of blending local and cosmopolitan knowledge involved a medication regimen. A physician ordered a medication to be given to a care receiver three times a day with meals. The family, however, ate only two meals a day, rising rmcbnorning for a late brunch, and having an early supper at about 5 p.m. The nurse and family thought through a variety of strategies for following the medication regimen without interrupting their established and satisfying pattern, and decided to delay dessert until immediately before bedtime so that the third dose of medication could be taken with food.

CONCLUSION

When we provided the type of care described in this article, the caregivers were better able to manage caregiving. This finding highlights the need to develop enduring partnerships between families and nurses. Caring for an older family member can be difficult; in terms of the analogy presented at the beginning of the article, families must often negotiate waters that tax their navigational skills to stay afloat. However, we think that by developing partnerships between family caregivers and the professional community - by blending local and cosmopolitan knowledge - it is possible to find safe passage for all.

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10.3928/0098-9134-19940201-07

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