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RESEARCH ARTICLE |
a Department of Anthropology, History and Social Medicine, University of California, San Francisco
Judith C. Barker, Department of Anthropology, History and Social Medicine, University of California, 3333 California Street, Suite 485, San Francisco, CA 94143-0850 E-mail: jcbark{at}itsa.ucsf.edu.
Decision Editor: Fredric D. Wolinsky, PhD
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Abstract |
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Methods. Face-to-face, semistructured interviews were conducted with a convenience sample of 114 caregivers and care recipients recruited from the community through a variety of organizations. Standard techniques for thematic analysis of qualitative data were used along with descriptive and other statistics as appropriate for numerate data.
Results. Nonkin caregiving proved to be heterogeneous in initiation of relationship, form, duration, tasks performed, and association with family caregivers. Partnerships ranged from 0.1 to 57 years in duration, with just over half (58%) starting with the provision of care. Many caregivers (47%) were themselves older adults, aged 65 or older. There was little variation in what motivated or rewarded caregivers, many of whom felt morally obligated to help. More than half the sample used kin terms to characterize their relationship. Four distinct styles of relationship were discerned, varying by degree of emotional intimacy and types of assistance given. All relationships, however, involved socializing and help with at least two instrumental tasks of daily life.
Discussion. This kind of caregiving is important for sustaining community living for about 10% of frail elderly persons. A greater understanding is needed, from both theoretical and practical perspectives, of when and how nonkin relationships are beneficial and why they in many ways successfully mirror the actions and sentiments of family caregivers.
Astrongly held, culturally approved presumption is that family is the appropriate resource on which people should rely for assistance in old age. This expectation underlies much social policy and provision of services to older people. Family, especially wives, daughters, and daughters-in-law, do in fact comprise the majority of people providing informal care and assistance to frail older people (Abel 1991
; Olesen 1997; Stephens and Christianson 1986; Sussman 1985). Many elderly people, however, either never had or have already exhausted family resources, and in large part end up receiving care from a variety of other informal sources as well as paid professionals. Thus, despite the predominance of family, a significant proportion of dependent elderly adults receives informal help from others (Qureshi and Walker 1989; Stoller and Earl 1985; Stoller and Pugliesi 1988).
One informal caregiving linkage is that between an older person and his or her friends, neighbors, or other unrelated people. Estimates have suggested that between 5% and 10% of community-living elderly people regularly receive informal assistance from this kind of unpaid, nonprofessional, nonkin caregiver (Barker and Mitteness 1990; Nocon and Pearson 2000; Stephens and Christianson 1986; Stone, Cafferata, and Sangl 1987; Wenger 1990).
This type of nonkin caregiving relationship is well recognized by both the lay public and gerontological professionals. Many writers make frequent but often only casual or passing reference to the impact of friends or neighbors on the well-being and continued community living of many frail elderly people. These authors represent a wide range of disciplines, such as adult protective services, social work, gerontological nursing, geriatric medicine, and various social sciences, (e.g., Arling 1976; Peters and Kaiser 1985; Quinn and Tomita 1986; Wilcox and Taber 1991). For some older people, the deliberate development of nontraditional households centered on nonkin has become an important strategy for offsetting the effects of poverty and lack of familial resources (Chalfie 1995). Despite this persistent commentary on the presence and importance of nonkin caregivers to the daily well-being of elderly people in the community, few investigators have undertaken a sustained examination of this phenomenon. The literature focusing specifically on nonprofessional, unpaid, nonkin caregivers is sparse.
In their most generic form, nonkin caring relationships are naturally occurring and ubiquitous, built out of unremarkable acts of sharing and kindness between people, especially neighbors—acts such as watering plants or caring for pets during absences, sharing homemade edible items and handmade goods, dealing with mail and packages, occasionally picking up groceries, sharing meals or jointly undertaking other leisure activities, and exchanging information about events or acquaintances. These sharing–caring behaviors have long been documented as important in the lives of many elderly people, whether they be living in the general community (Cantor 1979; O'Bryant 1985; Rowles 1978; Rubinstein 1986), in age-segregated communities (Hochschild 1973; Kontos 1998), or in apartment buildings and hotels (Barker, Mitteness, and Wood 1988). On the basis of actions and symbols meaningful to the participants (Karner 1998), these everyday behaviors are the social glue that bonds, shapes, and even creates community. The overwhelming prevalence of this very ordinary relationship, however, has tended to obscure the importance of occasions on which such association between nonkin takes on a particular salience—namely, when neighboring becomes caregiving.
Kin are expected to provide care for young, sick, or disabled family members, especially care of a personal nature or over a long period of time (Croog, Lipson, and Levine 1972; Litwak 1985; Litwak and Szelenyi 1969; Qureshi and Walker 1989). Barker and Mitteness 1990, however, discovered that some relationships between physically dependent older adults and nonkin caregivers were long lasting, for 5 or more years. Nonkin caregiving often included the provision of personal, even intimate, care, and occasionally involved inversion of the usual sociodemographic patterns, with young men caring for very elderly women. Nonkin caregivers, aware of the ambivalence and tensions inherent in relationships in which strangers act like kin, were especially vigilant about behaving in ways that could suggest financial or other abuse of the dependent elder (Barker and King 2001). MacRae 1992, studying 60 elderly women in Nova Scotia, Canada, reported that individuals classed as fictive kin were long-time companions, acted as confidantes, used kin terms in describing one another, and frequently provided social support. Often, fictive kin were the persons of first resort, even when family existed. O'Bryant 1985 noted that performance of "checking on" nearby elderly residents and other neighborly caring functions depends on proximity and a degree of familiarity with an older person's typical activities—noticing, for example, when blinds remain lowered or when garbage cans, mail, or newspapers are not retrieved. Proximity and social intimacy were important aspects of the nonkin relationships that Nocon and Pearson 2000 studied in England. They found friends and neighbors often acted as substitutes for family caregivers or formal service providers. Spontaneity in "just popping in" to check on neighbors or to chat briefly was especially appreciated. The more flexible schedules of nonkin caregivers particularly suited them for providing care at nights or weekends when formal services or family were not available.
These studies call attention to the important consequences that occur when neighboring exceeds simple acts of sharing and caring and becomes caregiving. Caregiving between nonkin is the topic of this article. Reported here are results from a study investigating how such naturally occurring informal care relationships come into being, what kinds of individuals are engaged in them, what activities they encompass, and what sustains them.
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Methods |
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, p. 119). Of particular interest were cases involving intensive personal care (usually for medical reasons, such as tube feeding) and cases of long duration, over 5 years. Communication from the helper could be restricted on occasions to just checking in by telephone, but in general the relationship had to include regular, active provision of direct help to the older dependent. Nonkin associates who helped on a less frequent basis were not included in the sample. A few cases concerned former nurse's aides or chore workers who did a great many "extras" for the frail older adult, and several other cases involved volunteers from social service agencies who had been introduced to the care recipient for "socializing" purposes. In all these instances, however, over time the helpers had moved out of the formal, professional role but continued assisting the older individual without being paid (see also Nocon and Pearson 2000). To be included in the sample, however, these people had to do tasks regularly for the care recipient strictly outside those authorized by the agency and to spend additional uncompensated time with the recipient. Duration of relationship was purposely allowed to vary, from very short (less than 6 months) to long (more than 20 years). The sample intentionally included caregivers of all ages, as well as caregivers and care recipients of both genders and any ethnicity. People unable to be interviewed in English were excluded from the sample. This strategy reduced both the cost of the study and, unfortunately, the ethnic diversity of the sample. The various large Asian populations in the recruitment area, for example, are not well represented in this study. For reasons that are unclear, it proved difficult to recruit Latino participants. African Americans, however, comprised one fifth (n = 23) of caregivers.
Intensive, semistructured face-to-face interviews were used to investigate the dimensions and qualities of nonkin relationships. Interviews were audiotaped and transcribed and then subject to systematic coding and thematic analysis typical in qualitative research. Study participants were interviewed on recruitment (Time 1) and again 12 months later (Time 2), with two or three telephone calls in the intervening period to maintain contact and track significant changes in the interval. Major topics of investigation were (a) sociodemographics of participants; (b) the "natural history" of the relationship—its origins, trajectory, and change over time; (c) the kinds of activities engaged in and tasks undertaken; and (d) the experience of the relationship from each participant's perspective.
There is no single or clear source through which to recruit people in naturally occurring, unpaid, nonkin caregiving relationships. Hence, participants were sought through a variety of community-based establishments, such as guardianship courts, welfare agencies, and voluntary organizations (e.g., churches). Nor is there a local or national database documenting the prevalence and characteristics of unpaid, nonprofessional, nonkin caregiving. So, it was not possible to generate a random sample, nor was it possible to know whether the distribution of features found among these participants was generally representative of the nonkin caregiving population. Unfortunately, too, only "successful" relationships were able to be studied directly. Evidence about short-lived or unsuccessful relationships was largely anecdotal and used only to further illuminate the social context for such relationships. Instances of unsuccessful or exploitative nonkin relationships are constantly alluded to in the scholarly literature and media reports (e.g., Pojmann 1996; Quinn and Tomita 1986; State of California 1999). Little is known, however, about factors leading to breakdown of nonkin relationships in general, let alone in instances that result in abuse, neglect, or grossly inadequate care or that involve criminal conversion of property or abrogation of civil liberties. Because of these limitations, caution needs to be exercised in generalizing findings from this study.
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Results |
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The study was conducted in northern California. One half (50%) of the sample lived in San Francisco, 39% in the East Bay area (primarily Oakland or Fremont), and the remainder in diverse communities in the southern reaches of the greater San Francisco Bay area. Recruitment sources for the 156 cases consisted of social service or welfare agencies (23%), public housing (21%), religious institutions or churches (18%), home health care agencies (17%), general community or personal contacts (16%), and probate court (5%). The social service agencies were predominantly concerned with organizing volunteers to visit and provide socializing to elderly shut-ins. The large pool of participants coming from this source indicates how easily socializing activities spill over into caregiving, albeit often not of an intimate nature, especially at the beginning of a relationship. Examination of the 472 probate court records definitively identified 27 nonkin cases (6%), but only 8 of these 27 caregivers (30%) agreed to be interviewed. The reason given for refusal was the great time and oversight commitment involved in acting as a legal guardian (Barker and King 2001).
The 156 cases generated a total of 208 recruitment (Time 1) interviews, most of which (80%, n = 166) represented complete cases. Data presented in this report refer to recruitment (Time 1) only; follow-up data will be reported elsewhere. Whenever possible, each party—caregiver and care recipient—was interviewed. However, care recipients were far more willing to refer researchers to their care providers than vice versa: Of the 114 interviews, 57% were with caregivers only, 26% were with both parties, and 17% were with older care recipients only. Six people refused to participate, 5 dependents and 1 caregiver. A very large proportion of caregivers simply refused to introduce researchers to the care recipient on the (unsubstantiated) grounds that the older person "would not be interested in the study" (39% of noninterviewed dependents; n = 27 cases). Many other caregivers claimed that their older dependents were too physically or mentally impaired to engage in an interview or to provide informed consent (28% of noninterviewed dependents; n = 19 cases). Four other reasons were cited for lack of participation. In order of frequency, these were the very recent death of the care recipient or his or her spouse, making for an inopportune moment to interview partners in the nonkin relationship; the caregiver's being too busy to be interviewed due to numerous caregiving responsibilities; a recent lack of contact due to residential moves by one or the other party in the relationship, the majority being due to institutionalization of the care recipient; and the dependent's not speaking English.
That there is a very fine distinction between everyday neighborliness and informal caregiving was very evident. When initially approached about participating, almost all caregivers at first demurred, doubting they fit the criteria. They claimed to not be eligible because they were "just a friend, not a caregiver" or "just a good neighbor" or "really do just a little to help." Such claims were especially common when the relationship was new, when the shift from caring to caregiving was recent, or when the relationship involved what people classed as "minimal help." Definitions of minimal help, however, were broad—ranging from literally doing a couple of nonintimate instrumental tasks once a week, such as small amounts of paperwork or checking on the elder's well-being by telephone or brief visits, through daily provision of essential personal care, such as grooming or transferring.
Nonkin caregiving is not composed solely of dyadic relationships between a single caregiver and a single care recipient (or a dependent married couple). Of the 156 cases encountered, just over half (54%) of the relationships were dyadic. A further 29% of cases involved 1 caregiver assisting 2 or more unrelated older adults between whom there were no social ties. The remaining 17% of cases concerned a single elderly care recipient with 2 or more nonkin caregivers, many of whom were known by or related to each other (e.g., members of the same church congregation or spouses). In cases where more than one caregiver or care recipient existed, data are reported only for the major participant in each category, defined by the performance of the greatest number of tasks or the most time spent helping. Among the 114 complete cases, the 12 (10%) people who reported having between 3 and 6 care recipients did so largely by virtue of their occupation but outside of their job description (e.g., apartment manager, mail carrier). These caregivers tended to have the most able care recipients to whom they primarily provided socializing and minor instrumental help, such as delivering the daily newspaper, mailing letters, supplying sweets or cigarettes, overseeing medication use, and the like.
Demographics
As expected, caregivers and care recipients matched the general demographic profiles reported in previous studies (e.g., Nocon and Pearson 2000; Stone et al. 1987). As Table 1 shows, caregivers were predominantly female, represented a wide range of ages, and generally had modest economic resources, with an average annual income of around $25,000. Care recipients were more highly educated than is common among this age group: Almost one fourth (22%) had postgraduate degrees. Women especially were highly educated, many having master's degrees, most commonly in library science or (early childhood) education.
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2 (1, N = 81) = 4.55, p < .03. Caregivers under 45 years of age were significantly more likely than caregivers over age 45 to have commenced their association with caregiving (86% vs 48%), Kruskal-Wallis 2 (1, N = 81) = 8.05, p < .005. This was especially true for male caregivers, for whom 100% of those under age 45 began the relationship as caregivers, whereas only 25% of men over 45 commenced their nonkin associations this way, Kruskal-Wallis 2 (1, N = 20) = 5.84, p < .02.
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).
Almost half (47%) of the caregivers in this study were themselves elderly, aged 65 or older, a slightly higher proportion than that reported by Nocon and Pearson 2000 and perhaps due to strong representation of participants living in age-segregated public housing. Indeed, 12% of caregivers were aged 80 or older. A considerable proportion (almost one third; 31%) were age peers, defined as partners within 10 years of each other in age. In many instances concerning older caregivers, however, it was unclear who actually cared for whom, especially as the majority of age-peer partnerships were of more than 10 years' standing and the history of the relationship often detailed assistance flowing back and forth between the partners, depending on need at the time.
Although most partners in nonkin caregiving relationships came from similar sociodemographic backgrounds, in multiple instances partners crossed gender, age, ethnic, and economic boundaries. It is conventional to find a gender–age crossover involving women of all ages caring for older men. It is less usual, however, to discover a young man caring for an older woman, as was true for a dozen cases (10%) in this study. With a different sample, Barker and Mitteness 1990 also reported that 10% of their respondents were young men caring for older women. Around one fifth of cases in this study involved ethnic crossover, most frequently but not always a person of color giving care to a White partner.
Tasks Undertaken
Approximately one fourth (24%) of these dependent older adults experienced minor impairments, whether physical or mental in nature. The majority, however, had more severe impairments that were largely physical in nature (see Table 3 ). This explains why most tasks undertaken by the caregivers involved socializing (86%) and instrumental care (71%) rather than personal care (Table 3 ). Socializing often involved engaging in mutually pleasurable activities outside the care recipient's home; for example, going out for a meal; going to church; attending a play, concert, or sports event; driving around sightseeing; or playing bridge or bingo. Almost one in five partnerships (17%) involved the provision of heavy physical or personal care for multiple (four to six) activities of daily living limitations. These were, on the whole, stable, long-standing relationships, many having existed for over 5 years. As previously noted by O'Bryant 1985, too, accomplishing many of the activities and tasks of these relationships was enhanced by frequent contact between partners as well as by physical proximity (Table 3 ).
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A typical example of each style of relationship is given here. To protect participants, all names are pseudonyms and minor, incidental details have been altered slightly by using information from similar cases. In addition, Table 4 presents some central characteristics for each style of relationship.
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Joan is a 37-year-old White, female part-time teacher. She cares for Mary, an 84-year-old who has been a homemaker all her life. Their relationship began 3 years ago through a chance encounter and conversation at the local grocery store. Now, they chat on the telephone regularly, and every week Joan socializes with Mary, helps her with her bills, takes her shopping, and occasionally provides transportation to appointments.
Bounded relationships generally involved more extensive contacts between the parties than did Casual ones, but these were still focused largely on impersonal, instrumental task performance in carefully circumscribed domains of daily life. Like Casual relationships, Bounded partnerships were shorter lived than Committed or Incorporative ones. These were limited, socially cautious associations, although they were usually warm and supportive in emotional tone. One fourth of nonkin relationships comprised this style of interaction. This style often appeared as an early stage in the development of many partnerships.
Andy, a 67-year-old Chinese man, a retired accountant, cares for Ms. Hayes, a Black lady whom he thinks is in her 70s. They were introduced to each other 5 years ago at church. They have a very cordial, warm, and friendly relationship but have a strictly limited range of interaction. Andy helps her set up appointments and provides transportation, as well as taking her on sightseeing trips and to church. Generally, Andy socializes with her outside her home but refuses to go beyond the front room of her house or to get more intimately involved in other aspects of her life. In turn, Ms. Hayes will not divulge to Andy any personal, medical, or financial information, nor will she allow him to assist her with paperwork even though she has a great deal of difficulty reading these days.
Committed relationships made up another one fourth of the partnerships. This style had the greatest degree of internal variation in form, ranging from strictly dyadic relationships, through a variety of caregiving groups or networks, to career caregivers who moved serially from one nonkin care recipient to another, usually after the death or residential relocation of the first recipient. For this style of partnership, duration of relationship usually exceeded duration of caregiving by several years. Committed relationships involved a degree of emotional intimacy and encompassed complex material exchanges and instrumental task performance in multiple domains of daily life. Over time, the tasks undertaken by caregivers in these relationships often increased in number and complexity, in many instances coming to include personal care or help with activities of daily living.
Jeremy is a 47-year-old unemployed African American man who lives in a halfway house and gets by with a disability check as a result of schizophrenia. He provides care for 82-year-old Ms. Gandy, an African American woman with severe arthritis that limits her mobility and movement of her upper body. Ms. Gandy's sister introduced them at church 13 years ago. Jeremy does personal care for Ms. Gandy; 7 days a week he goes to her house several blocks away and helps her bathe, groom, toilet, and walk. As well as providing daily socializing, Jeremy also occasionally does some cooking and shopping for Ms. Gandy. Jeremy says, "I really like having someone to eat dinner with every day." In turn, Ms. Gandy greatly appreciates Jeremy's gentle and consistent help and provides emotional support and stability in his life, giving him a strong and very real sense of purpose and accomplishment.
Incorporative relationships composed the remaining one fifth of relationships. They not only encompass the same multidimensional components as Committed relationships but have in addition an even greater emotional intimacy and involvement in the life world of the care recipient. These are connections with a history of complex exchange and interaction. They are distinct from the other styles of relationship in three key ways: having the youngest caregivers, a significantly longer duration of relationship than either the Casual or Bounded style, and the greatest proportion of caregivers providing personal care. Most significantly, one or the other participant, either caregiver or care recipient, ends up becoming centrally incorporated into the other's family nexus.
A self-employed handyman/gardener, Wally, is a 67-year-old White man who never married. Thirty years ago he became close to a neighbor and her family, especially to Maria, the neighbor's daughter. Maria and Wally stayed in touch even after she married and moved to a neighboring town, and Wally was always included in Maria's family's outings and events. Twenty years ago, when Maria's daughter was young, Wally would take her on vacation visits to his family in the Midwest. Over the intervening years, the relationship continued in the same fashion. Eight months ago, however, Wally had a stroke that left him partially incapacitated, so Maria moved him into her home so he could receive round-the-clock attention. At the same time, Maria moved her daughter, who was looking for housing, into Wally's apartment, and her daughter's husband started using Wally's truck because they had no other vehicle. Daily, Maria does personal care (bathing and grooming) for Wally, or "Grandpa," as he's generally called in this family. Maria's live-in boyfriend takes Wally to and from an adult day health center and helps Maria with most aspects of Wally's daily care. In fact, however, it is Maria's 15-year-old son, Jason, who is named on state documents for receipt of funds for providing care. Jason, whose other grandparents are all dead, is very attached to Grandpa. He not only provides help with meals, but he also does Wally's laundry, bed making, and phone calls and helps him up and down stairs. Jason generally spends hours after school each day socializing with Wally, playing card games and telling and listening to stories.
Motivations and Rewards
The three motivations most often mentioned by caregivers were prior history of volunteering, especially of providing care (21%); seeing an otherwise unfilled need (19%); and religious belief (19%). These motivations were surprisingly robust, not varying by age or gender of caregiver, by duration of relationship or of caregiving, recruitment source, or relationship style. Caregivers mentioned several rewards they experienced from being in partnership with older dependents. Just over one quarter of the caregivers (27%) said the relationship made them feel good or gratified; another 20% said the reward was friendship. A smaller but still sizable proportion of caregivers liked being appreciated (12%), felt rewarded by feeling that they were family (12%), and treasured the opportunity to learn from the older adult (12%). Caregivers simply seemed to like their dependents and chosen vocation. One nonkin caregiver expressed it thus: "It's my pleasure to help without any kind of pay, without anything, no attachments whatsoever. I think it's a moral duty, it's my just course. It does me a lot of good to be able to help someone else." Several others summed it up as "I'm just being a good neighbor."
These associations were not always rosy—nonkin caregivers did mention difficulties, but not nearly as often or as spontaneously as they mentioned pleasures in the relationship. Top-ranked concerns or difficulties were getting too involved and not being able to set boundaries (28%), getting too attached (16%), and the dependent's being too demanding or unappreciative (15%). Despite probing by the interviewers, there were one fifth as many negative as positive comments. Cases concerning heavy physical care or very long duration were not the ones that generated the most negative comments. Rather, caregiver dissatisfactions with the relationship tended to be associated with shorter term connections between the parties (under 5 years' duration), with extensive or rapidly escalating requests for assistance from the care recipient, particularly from care receivers with demanding personalities or an abrasive or abusive manner. Recipients experiencing cognitive decline were not always viewed negatively. Although changes over time in their partners' mental abilities were almost always distressing to them, caregivers did not necessarily retreat from providing help. Caregivers fondly sustained relationships with people with increasing mental fragility or with those with difficult personalities because of warm memories of past sentiments and rewarding activities.
Connections to Family
The amount and type of help given by the 114 nonkin caregivers was compared with the availability and help given to the dependent elder by others (paid professionals and family). Over one third (38%) of nonkin partners were the primary or sole caregiver of the dependent elder, doing tasks necessary for day-to-day well-being that no one else did. Most (53%) nonkin caregivers provided essential back-up and supplementation to formal services and family (when available), fulfilling needs that would otherwise be unmet. The remaining 9% of partnerships comprised more tentative arrangements that were often in the process of being established or dissolved. Nonkin not only tended to undertake different tasks than did paid professionals or family, but often did so on a more flexible schedule and at times more convenient to the care recipient, a finding reminiscent of those in Nocon and Pearson 2000 study. The majority of secondary nonkin caregivers had on occasion, for varying periods of time, been primary caregivers giving more extensive help, especially during an emergency or other special circumstance. Virtually all nonkin caregivers expressed willingness to step up the amount of help provided during times of crisis or extreme need.
A strong affective bond sustained the majority of relationships (more than 80%), even as the elder became more dependent physically or mentally or, in many cases, after the elder was institutionalized or moved away. Many participants signaled this closeness by claiming that their relationship had a kin or familylike quality. In fact, 10% of caregivers claimed they were family. In over half the cases (56%), kin terms were actually used to describe the quality of relationship: "She's the grandchild I never had," "she's like a grandmother to me," or "depending on her mood, I go from hired hand to grandson and back again." Both the caregivers and the care recipients used kin terms. Male caregivers under 45 years of age tended to use kin terms more often than did other caregivers. This is just one strategy by which they normalized their otherwise suspect relationship with their mainly very elderly female dependents (see also Barker and King 2001; Barker and Mitteness 1990). Not surprisingly, the kin terms younger caregivers usually used were those for people two generations apart—grandparent/grandchild. Age peers, however, referred to each other as siblings: Almost half of them (45%) called their partner brother or sister, whereas the remainder simply used the term friend.
Only 40% (n = 45) of elderly care recipients in the study had living kin, such as offspring, spouses, siblings, or distant kin such as cousins, nieces, and so forth. Most dependents either never had children or their children were deceased. This is similar to Nocon and Pearson 2000 finding that two thirds of their sample were childless or no longer had living children. For a handful of people, distant kin existed but were unavailable because they lived overseas or there had been no contact for decades.
When kin did exist, for the majority of care recipients (70%) family was also active in providing care, as Table 5 reveals. Family members most involved were female, especially daughters or daughters-in-law.
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Many times (55%; n = 62) the caregiver's family also got drawn into the nonkin caregiving relationship. Altogether, 39% of caregivers' spouses, 23% of their children, 28% of other kin, and 15% of their friends were active participants in the support network surrounding a dependent elder. These other family members or friends largely confined their activities to socializing with the elder and doing mundane, emotionally neutral, nonintimate instrumental tasks. In 12% of cases, however, the caregiver's other family member (usually a spouse) was very extensively involved in providing more elaborate forms of care. For caregivers with children, socializing frequently became a reciprocal engagement, with the older care recipient becoming an important source of conversation, encouragement, support, and information for the caregiver's youngsters. One 80-year-old woman, for instance, formed a strong, affectionate bond with the son of her care provider, a nearby neighbor, and faithfully accompanied the family to every high school baseball game in which this boy played.
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Discussion |
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; Barker and Mitteness 1990; Cantor 1979; Nocon and Pearson 2000; O'Bryant 1985; Peters and Kaiser 1985). Community-based, unpaid, nonprofessional, nonkin caregiving relationships occur naturally in a variety of ways. Some begin before the need for caregiving arises, as sharing–caring–neighboring relations, but many helping connections between nonkin commence with caregiving. Dependent older adults receive assistance, mainly but not exclusively of an instrumental nature, from a broad range of willing but unrelated helpers, including age peers. Many older care recipients lack kin to whom they might otherwise turn for assistance.
Four distinct styles of relationship between the nonkin partners exist, based on history and duration of relationship and caregiving, number, type and degree of intimacy of task undertaken, emotional quality of relationship, and extent of integration into family or social nexus. No matter the style of relationship, caregivers engaged with their dependents out of a sense of moral obligation. In this they are dissimilar to Nocon and Pearson 2000 participants, who explicitly and repeatedly denied being morally obligated to provide care for their nonkin neighbors. Possibly this reflects a social or cultural difference in the meaning and attributes of the concept of moral obligation between the two study sites, northern California and northern England. Some nonkin relationships become extrafamilial or quasi-kinlike, with all the ambivalence, obligation, exasperation, trouble, joy, and pleasure that kin relations entail (Sussman 1985). These findings bolster the suggestion that nonkin caregivers are important, even essential, to the well-being of a small but nonetheless significant segment of the older population living in the community. Even so, relatively little is known about nonkin caregiving relationships, and further research is much needed.
The strength of these naturally occurring relationships seems to be their unscripted ordinariness, their everyday quality. These partnerships focus largely but not exclusively on the minor, mundane tasks of everyday life in a context of fluid, spontaneous, personal interactions and a variety of social structural opportunities. It is important to frail elderly people to have someone to chat with regularly, someone to do the small but important household and everyday jobs that paid services do not do or cannot do, someone willingly available to help at night or other times when formal services or family are unreachable. These associations have a material base, often beginning in small ways that are not necessarily explicitly negotiated but continuing over time to develop into multifaceted, complex emotional commitments and consequential exchanges, even involving for some caregivers the provision of intimate personal care. There is a fuzzy boundary between neighborliness and friendship and care (Nocon and Pearson 2000, p. 364). Prospective studies are needed to document more certainly the various pathways by which neighborliness and friendship become care, by which adventitious relationships built on emotionally limited, nonintimate activities turn into more complex psychosocial care commitments in multiple domains of life.
Given the strength and centrality of family and caregiving as cultural symbols in society (Karner 1998; O'Rand and Agree 1993), it is not surprising to find the creation of fictive kin or familylike relationships between partners in naturally occurring nonkin care relationships. Indeed, fictive kin behaviors and sentiments have often been noted in a variety of other settings, such as nursing homes (Gubrium 1987; Gubrium and Buckholt 1982), as well as among less strictly regulated long-term care providers, such as homecare workers (Barer 1992; Karner 1998; Piercy 2000) and residential board-and-care operators (Eckert, Cox, and Morgan 1999). Comparison of the social, temporal, emotional, and material qualities of caring commitments among kin and nonkin alike are needed. There is a need to understand far better how people perceive, manipulate, and strategically deploy caring behaviors; how such qualities come to be juxtaposed in various constellations; and how such qualities both constitute and are constituted by the fuzzy boundaries between neighborliness and caring.
Some authors (e.g., Nocon and Pearson 2000) have suggested that nonkin relationships have a key preventative role to play, through social interaction with frail dependents that will reduce anxieties and stave off institutionalization. These claims, however, have yet to be substantiated. Better documentation is required, too, of the interface between formal services, family (when they exist), and nonkin care providers. Payment is already obtainable in California for supportive services to elderly people with a certain level of need or frailty, although very few caregivers in this study availed themselves of it, largely because they were unaware of its existence. The degree to which it is possible or desirable to provide formal support via public policy for nonkin relationships needs careful examination. Turning a naturally occurring friendship into a social care package is fraught with danger. A particular danger is that of creating an unwieldy, rigid, and formal bureaucracy that inadvertently stifles and extinguishes the very natural processes it sets out to enhance (cf. Nocon and Pearson 2000, p. 345). Another is that of further devaluing or exploiting the labor of that vast cadre of underpaid (migrant) women (of color) whose skills and accomplishments are downplayed, thereby excluding them from other occupations, but who in fact are essential because they provide the bulk of hands-on care in both community and institutional long-term care settings (Cancian and Oliker 2000; Meyer 2000).
The vast majority of nonkin relationships probably blossom and fade without anyone other than the immediate interested parties being aware of their existence. They are relationships that come to the attention of service providers and policymakers only when things go wrong or are feared to be going wrong (Barker and King 2001; Quinn and Tomita 1986). What brings suspicion seems to be, first, a general lack of knowledge about these relationships and, second, pervasive but often erroneous assumptions about the basic nature and motivations for nonkin care, that is, assumptions that nonkin care provision lacks moral underpinnings. Further investigation of successful and unsuccessful nonkin care partnerships will refine these assumptions to be more usefully workable. Though variable in form, these relationships seem to work precisely because they are "natural" (i.e., unregulated), based on sentiments and activities that are mutually meaningful and rewarding to the participants, as well as congruent with cultural values about families, neighbors, and care.
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Acknowledgments |
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I thank Geoffrey Hunt, PhD, David King, Joy Hansen, Heidi Kooy, Kathleen MacKenzie, and Karin Patterson for their assistance with various phases of this project.
Received for publication October 3, 2000. Accepted for publication July 17, 2001.
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