Family members are likely to experience stress and burden associated with caring for relatives who suffer from persistent psychiatric illness (1,2,3,4,5). However, the literature on the burden experienced by family members has focused largely on younger psychiatric patients who live with the family caregiver or live independently in the community (6). Two gaps in current research on family caregiving are notable: families of older mentally ill relatives have not been studied in detail (7,8), and little attention has been given to family caregivers whose ill relative is living in an institution.
This paper presents preliminary findings from a project investigating patterns of caregiving between family members and older psychiatric patients placed in a long-term-care facility. Here we report results of a brief survey of residents living in an intermediate care facility, focusing on the people from whom they receive support and assistance. The second part of the project, in which data are being collected from individuals identified by residents as their primary support, will be reported later.
All participants were residents of a 450-bed intermediate care facility for psychiatric patients in Chicago. Participants were randomly selected from a list of all persons age 45 and older who were residents of the facility during the period from March through July 1997. Residents who agreed to participate were paid $3; the refusal rate was 4 percent.
Information was gathered through a brief structured interview. Residents were asked to identify the persons with whom they had contact outside of the facility as well as the frequency and nature of that contact, such as visits, phone calls, and letters. Demographic information and treatment information, including the number of hospitalizations since first admission and diagnosis, were obtained through chart review.
The sample consisted of 109 residents, age 45 through 91, with a mean age of 59 years. It included almost equal numbers of men and women. The study participants were primarily white (73 percent); the rest were African-American (25 percent) or of other backgrounds (2 percent). The predominant diagnoses were schizophrenia, for 45 percent of the sample, and schizoaffective disorder, for 38 percent. The interview data were evaluated with SPSS software using t tests, chi square tests, and one-way analyses of variance.
Among the 109 study participants, 66.1 percent were single (75 percent of the men and 58 percent of the women), 23.9 percent were divorced (19.2 percent of the men and 28.1 percent of the women), 8.3 percent were widowed, (3.8 percent of the men and 12.3 percent of the women), and 1.8 percent were currently married (one man and one woman). No significant racial, ethnic, or sex differences among participants grouped by marital status were noted.
Although these data reinforce the observation that adults with chronic mental illness tend not to be married, the surprisingly high number who had been married and were either divorced or widowed suggests that marital relationships were significant at some point in their lives. A significant association was found between age at onset of illness and marital status (χ2=16.3, df=8, p<.05). (The analysis included the marital statuses of single, divorced, and widowed. Married participants were excluded due to low numbers.) The mean age of onset for single participants was 25.5±10.8 years; for divorced and widowed participants the mean ages of onset were 32.7±14.2 years and 42.1±21.5 years, respectively.
We found that 73.4 percent of the sample had family contact. No significant differences in contact were found by sex or race. However, the mean± SD age of those who had family contact was 56.6±9.9 years, compared with 64.3±14 years for those who did not have contact (t=3.2, df=107, p<.01). This finding suggests that older individuals may indeed be at a higher risk for having no family contact.
Among participants who had contact with their families, 17.7 percent had contact with one support person, 27.8 had contact with two persons, 15.2 percent with three, and 30.4 percent with four. This finding is notable because it suggests that patients with any family contact are likely to have contact with at least two to four persons (73.4 percent). No significant differences were found in the number of support persons by race, marital status, or age.
Study participants whose mothers were still living tended to have a greater support network (85 percent had a network with two or more persons, compared with 48 percent of participants whose mothers were deceased; t=3.44, df=105, p<.01). Moreover, participants whose mothers were still alive were more likely to have contact with siblings than were those whose mothers were deceased, although this difference only approached significance. Sixty-five percent had contact with siblings, compared with 42 percent of participants whose mothers were deceased (chi;2=8.95, df=4, p=.06). This finding suggests that the mother is not only an important support person herself but that she helps maintain a support network for her adult son or daughter.
Among the study participants who had contact with family members, relatively few had contact with parents—22.9 percent had contact with mothers, and 11 percent with fathers. These numbers reflect the study subjects' older age, which increased the likelihood that their parents would be deceased. When subjects who did not have a living mother or father were excluded from the analysis, rates of contact increased dramatically to 80.6 percent for mothers and 66.7 percent for fathers.
Nearly half of the subjects had contact with their siblings, and a quarter had contact with their own offspring. When subjects without siblings and without children were excluded from the analysis, the rate of contact with siblings and with offspring was 75 percent for both groups. Thus in this sample of older psychiatric patients, siblings and offspring represented the bulk of familial contact and relationships.
To analyze the frequency of subjects' contacts, we examined two questions. First, among mothers, siblings, offspring, and other relatives, what was the frequency of visits? We found that as a group, mothers tended to visit most frequently, with 58 percent visiting weekly. Siblings most commonly visited either biweekly or monthly (37.9 percent combined), although more than a third visited weekly. Children visited primarily weekly (35 percent) or monthly (30 percent).
Our second question was framed in reverse—of patients who were visited weekly, monthly, and so on, what percentage of the weekly visitors were mothers, siblings, offspring, and other relatives? Weekly contact was largely distributed between mothers (31.3 percent), siblings (31.3 percent), and offspring (21.9 percent), with fathers, friends, and other relatives contributing the remaining 15.5 percent. However, among subjects who received biweekly visits, fully 62 percent were visited by siblings. Monthly contact was largely split between siblings and children (40 percent for each group). Siblings also were the largest source of quarterly or yearly contact. Thus although both mothers and siblings had a pattern of high-frequency contact, less frequent contact was primarily with siblings.
These findings suggest two important points. First, older psychiatric patients are at risk of diminished family contact as siblings shift into the role of primary caregiver. Of equal importance is the observation that siblings may be more willing to become involved and maintain regular contact than might be expected, as indicated by the surprising number who maintained weekly or biweekly contact.
There is often a presumption that adults with chronic mental illness, particularly those who are older and institutionalized, tend to have little to no family contact. Our findings suggest that fully three-fourths of this population have some degree of family contact. We found that increasing age was not a risk factor for having no family contact.
Although almost all of the study participants were single at the time of the study, approximately a third had been married at some point. More important, approximately a third had children. Much of the literature addressing the family of mentally ill persons focuses on the parents of patients. Although our data suggest that mothers and fathers play an important role in the lives of many older adults with chronic mental illness, siblings, offspring, and other relatives clearly become increasingly important. Siblings were by far the most frequently identified primary support. However, fully one-fourth of the study participants identified children as primary caregivers. Among participants who had children—approximately one-third of the total—more than half identified a child as their primary caregiver.
Intuitively we might expect that the nature of the support, the impact and burden on the caregiver, and the meaning of the relationship, as well as the needs of the caregiver, would vary considerably between parents, children, and siblings. We know little, however, about how siblings and children function as caregivers. Further study is needed to clarify the role of these groups as caregivers and providers of support for older patients with schizophrenia. Finally, institutions caring for these patients should consider developing staff training to increase awareness of family relationships and to help staff deal effectively and appropriately with families.
The authors thank Bridget Freisthler, A.M., for help in analyzing the data and Kyoung Ja Hyun, Ph.D., for comments on the survey instrument.
Mr. Beeler is a doctoral student in human development at the University of Chicago and a clinical trainer at Somerset House, an intermediate care facility in Chicago. Ms. Rosenthal is a therapist at Jewish Family and Community Services in Skokie, Illinois. Dr. Cohler is a professor on the committee on human development at the University of Chicago. Send correspondence to Mr. Beeler, 5009 North Sheridan, Chicago, Illinois 60640 (e-mail, email@example.com).