Patterns of Family Caregiving and Support Provided to Older Psychiatric Patients in Long-Term Care

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.

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 protected]).