Research report
Family caregiving in depression: impact on caregivers' daily life, distress, and help seeking

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Abstract

Background: Attention to caregiving consequences has been mainly restricted to schizophrenia, although studies suggest that relatives of depressed patients also experience considerable distress. These studies, however, were conducted on small samples or with nonvalidated instruments. In our study, the caregiving consequences of 260 spouses and relatives of depressed patients were assessed with a well-validated 31-item questionnaire, the Involvement Evaluation Questionnaire (IEQ). Methods: The IEQ was mailed to spouses and relatives of patients with major depression, dysthymic disorder, or other depressive disorders. Other instruments used were the Ways of Coping Checklist (WCC), a Dutch Social Support Questionnaire, and the Zung Self-rating Depression Scale (SDS). Results: About 25–50% of caregivers worried about the patient's general health, treatment, safety, and future. They had to urge the patient to undertake activities, or took over tasks. There were relational strains, and they felt burdened, especially when the patient was in an acute phase. Caregivers often felt distressed and had to visit a (mental) health practitioner. Also, children were affected; caregivers reported high levels of difficult behavior, loss of appetite, sleeplessness, less playing, and less attention at school. Caregiving consequences occur less often than in schizophrenia, but the patterns are quite comparable. Conclusions: Caregiving consequences in depression occur frequently and cause distress in caregivers and patient's children. Attention should be paid to support relatives and spouses of depressed patients. Special attention should be paid to patient's children.

Introduction

Living with a person suffering from a severe mental illness often causes considerable personal, social, and economic burden on individuals and communities, sometimes detriment to caregivers' own health Schene, 1986, Hatfield and Lefley, 1987, Fadden et al., 1987b, Schene et al., 1994, Schene et al., 1996. However, in the past, caregivers often lacked support from the psychiatric teams in coping with the patient's symptoms and behavior, and on the whole, the emotional experience of caregiving had no priority in therapy Fadden et al., 1987b, Muscroft and Bowl, 2000. In recent years, there has been a growing concern for the consequences experienced by patient's caregivers, and in several countries, deinstionalization of psychiatric care led to the founding of organizations for families of patients with serious mental illness (Schene and van Wijngaarden, 1995).

Despite the fact that 15 years ago, Fadden et al. (1987a) already stated that families of other patient groups were also seriously affected by the patient's illness, studies are mainly restricted to schizophrenia or other psychotic disorders. The reason why the caregiving consequences of affective disorders did not attract much attention presumably lies in the episodic nature of these disorders and the erroneous notion that unlike schizophrenia, affective disorders do not entail chronicity or adverse effect on the functioning of the patient (Chakrabarti et al., 1992). The scant information about the consequences of affective disorders exclusively deals with the effects on spouses, probably because depressive patients are much more likely to be married. Marital and sexual relationships often are badly affected, and spouses take over various roles normally done by patient, causing restrictions in their own social activities and high levels of subjective burden Fadden et al., 1987a, Fadden et al., 1987b, Jacob et al., 1987. The few studies on the caregiving consequences of affective disorders suggest that also the relatives of these patients experience considerable distress, sometimes strikingly parallel to that in schizophrenia Targum et al., 1981, Fadden et al., 1987a, Fadden et al., 1987b, Chakrabarti et al., 1992. Schizophrenia research showed that the level of caregiving consequences can be predicted from a number of interrelated variables: patient–caregiver relationship characteristics like the amount of time spent together, patient characteristics like symptoms and disabilities, and caregiver characteristics like coping and social support Schene and van Wijngaarden, 1993, Schene, 1990, Schene et al., 1998, Magliano et al., 1998, Magliano et al., 2000. Similar results were found in studies on the caregiving consequences of affective or bipolar disorders. Those living with patients experienced most consequences that were higher if the caregiver was female, if the patient was in an acute phase, had more symptoms and a long psychiatric history, and if caregivers felt that they had no control over patient's illness Chakrabarti et al., 1992, Fadden et al., 1987b, Jacob et al., 1987, Perlick et al., 1999.

Also, the effects on the (mental) health of caregivers of patients with affective disorders were comparable to findings in schizophrenia research Fadden et al., 1987a, Schene et al., 1998. Between 31% (Dyck et al., 1999) and 40% (Struening et al., 1995) of caregivers have above threshold scores for clinically significant depression on self-report measures like the CES-D (Perlick et al., 2001), with higher scores in case of more burden Struening et al., 1995, Barrowclough and Parle, 1997, Dyck et al., 1999.

Although these studies suggest that caregiving consequences of affective disorders can be serious, all had one or more methodological drawbacks. Most did not include comparison groups, instruments generally were not validated, or/and were not designed to measure burden. In addition, these studies mainly focused on bipolar or schizo-affective disorders instead of depression. Given these methodological shortcomings, there was a need for a study on caregiving consequences in ‘true’ depressive disorders, using a validated and applicable instrument. This study was designed to answer the following questions:

  • 1.

    What are the consequences for caregivers of sharing daily life with depressed patients?

  • 2.

    Are these consequences related to diagnosis (major depression vs. dysthymia), illness phase, duration and severity of the illness, and patient or caregivers' (socio-) demographic characteristics?

  • 3.

    Are these consequences related to caregivers' feelings of distress, and to which extent do they lead to use of (mental) health care?

Section snippets

Inclusion criteria and patient samples

The study was conducted amongst relatives, friends, partners, or other caregivers of patients fulfilling the clinical DSM-IV criteria of

  • major depressive disorder, single episode, or recurrent (296.2×, 296.3×),

  • dysthymic disorder (300.40),

  • other depressive disorders (309.00, 311.00).

Patients were recruited at the inpatient and outpatient department of an Academic Medical Center and the outpatient departments of two mental hospitals. All departments were specialized in the treatment of depression.

Socio-demographic characteristics

Table 1 contains the socio-demographic characteristics of patients and caregivers. Of the 260 patients, two-third had a clinical diagnosis of major depression, and one-fifth had dysthymia.

The nonacute outpatient sample scored somewhat lower on the Zung SDS sumscore (one-way ANOVA, F=7.2, df=2, p=0.001), and the inpatient sample patients had a shorter psychiatric history (χ2=13.8, df=6, p=0.032).

In total, 61.2% of the patients were female, the average age was 45.4 years (S.D.=13.9). The

Conclusion and discussion

This is the first large sample study that describes the consequences of depression for caregivers of patients, assessed with a validated instrument. The Involvement Evaluation Questionnaire (IEQ), originally developed for schizophrenia research and later adapted for use in depression research, has proven to be a valid, reliable, sensitive to change, and cultural sensitive instrument, suitable for assessing caregiving consequences van Wijngaarden et al., 1996, van Wijngaarden et al., 2000, van

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