FOR A LONG TIME, psychiatric research only showed an interest in parents of patients with schizophrenia in so far as assigning them an illness-causing role (eg, [Bateson et al 1956]; [Lidz and Lidz 1949]). Although the hypothesis that parents’ “pathogenic” behavior and communication patterns represent a major cause of schizophrenia is now considered outdated, there are numerous studies documenting that the emotional climate in the family, in the sense of the “expressed emotion” concept, plays a significant role in affecting the course of the illness (for review, see [Bebbington and Kuipers 1994]). Furthermore, it has been pointed out by some researchers that “expressed emotion” can be interpreted as a complex pattern of interaction between the patient and his or her family that at the same time represents the general conditions and consequences of the mental illness. In this connection, a series of studies yielded that parents tending to behave in a hostile, critical, or overprotective manner toward the patient often experience especially heavy levels of stress and judge their own possibilities for coping in a rather pessimistic way ( [Budd et al 1998]; [Scazufca and Kuipers 1996]).

The consequences of schizophrenia for the patients’ caregivers have been investigated since the mid-1950s as a result of a change in research perspective that formerly centered exclusively on the patient (for an overview, see [Baronet 1999]; [Rose 1996]). With reference to the “classic” concept of [Hoenig and Hamilton 1966], the impairments and problems of the patients’ relatives had been mostly differentiated between objective and subjective dimensions of burden; according to this hypothesis, objective burden results from the concrete and observable negative effects of the mental illness, such as disturbance of family life because of psychotic symptoms, necessary care services or financial expenses. Subjective burden, on the other hand, is defined by the extent to which caregivers actually feel burdened because of this situation. Regarding the subjective experience of burden, different aspects are described in the research literature. During acute psychotic episodes, feelings of powerlessness and helplessness often come to the forefront, but so do strong fears, such as the fear that the patient could commit suicide [Magliano et al 1998]. Apart from the worry regarding a possible relapse, feelings of annoyance and anger might be dominant in everyday life with the patient, especially if psychotic symptoms and behavior are not ascribed to the schizophrenia, but to the intentions or lack of self-control of the patient. Such feelings of annoyance are often related to negative symptoms of schizophrenia such as apathy, social withdrawal, and lack of drive [Provencher and Mueser 1997]. The belief of being personally responsible for the illness because of poor parenting is a painful experience for many parents of patients with schizophrenia [Doerner et al 1997]. In view of the many hopes destroyed because of the illness and the changed personality of the patient, grief and feelings of loss are experienced as well [Tuck et al 1997]. Parents’ worries regarding the future, however, are often related to their permanent responsibility for the patient and the question of who will take care of the patient if they no longer can, if, for instance, they themselves become in need of care or die ( [Eakes 1995]; [Jungbauer and Angermeyer 2002]).

Despite the highly differentiated level of knowledge in the field of caregiver-burden research, there have hardly been any publications regarding middle- and long-term changes of burden load. Therefore, this study, which is based on analyses of qualitative follow-up interviews, aims at making a contribution to investigating such time-related developments. What kind of burden-related developments can be described in parents of patients with schizophrenia over a period of 12 months, and how are changes or invariance perceived and interpreted by the parents? Under which conditions do changes in the subjective burden level occur? Under which conditions do no changes occur? To allow an in-depth portrait of subjective burden load, narrative interviews with parents of patients with schizophrenia were conducted and analyzed. In doing so, the methodical desideratum of not only applying quantitative-statistical, but also qualitative-interpretative methods in psychiatric research was taken up ([Karp nad Watts-Roy 1999]; [Rose 1996]). This approach allows an understanding interpretation of conditions and connections in line with Karl Jaspers: “Comprehensible correlations…are not proved by numbers, but by understanding the individual case-numbers just show the frequency of their occurrence” ([Jaspers 1972], p. 598).

Method and sample

This study was carried out in Leipzig, Germany, within the scope of the research project “Health and Financial Burden on Caregivers of Mentally Ill Patients” ([Angermeyer et al 2002]). Among other relatives, 51 parents of patients with schizophrenia were questioned regarding their present living situation and illness-related burdens. To be able to document temporal developments and processes of change, a prospective study design was chosen. Three detailed interviews were conducted with the parents at intervals of 6 months. The interviews were conducted by qualified psychologists trained in using the technique of narrative interviews ( [Riessmann 1993]).

The study participants were recruited from inpatient, day care, and outpatient psychiatric facilities in Leipzig. On the condition that the patients agreed to their parents’ interviews, the latter were contacted by telephone or mail. Fifty-one of the 74 parents who had been contacted agreed to participate in the study; at the time of the first interview (t0), 42 mothers and 9 fathers of patients with schizophrenia were interviewed. The average age of study participants was 60 years; the age span ranged from 36 to 85 years. The patients’ average age was 33 years, and most of them had been under psychiatric treatment for 11 years at the outset of the study. Forty-one percent of the patients still lived with their parents, whereas 59% lived independently. To record the functional impairment of the patients, the psychiatrist in attendance was asked to make a quantitative assessment according to Axis V of DSM-IV (Global Assessment of Functioning [GAF]). An average GAF value of 52 showed a moderately severe impairment.

The interviews were largely conducted in the form of home visits. First, the study participants were asked to report about their changed situation regarding the mental illness (“What has changed for you since your son’s/daughter’s illness?”). In the follow-up interviews, the opening question was: “What has happened since our last interview?” In compliance with the nondirective method of narrative interviews, the interviewer intervened and directed as little as possible during the subsequent reports and descriptions. As soon as a topic was completed or longer gaps in the conversation occurred, the study participants were prompted with questions to continue their narration, such as “What occupies you the most at the moment?” and “Was there anything lately which represented an extreme burden for you?” In addition, the interviewer had the possibility to generate concrete narrating and description of situations by means of narrative-deepening questions, especially in cases in which the study participant had a strong tendency toward argumentative or abstracting description. On average, the interviews lasted 30 minutes; after all interview contacts, detailed contact protocols were produced