Research report
What really matters to bipolar patients' caregivers: Sources of family burden

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Abstract

Background

Identifying and modifying burdensome aspects might reduce the level of burden and their negative effects both on caregivers and patients' outcome. Most studies evaluate acutely ill patients, whereas the most relevant problems may be related to subthreshold symptoms and long-term outcome. The aims of the present study were to assess caregiver's subjective burden, to analyse which were the most burdensome aspects for caregivers and to study which variables could explain the caregiver's subjective burden.

Methods

Caregivers of 86 euthymic bipolar patients completed the subjective burden subscale from an adapted version of the Social Behaviour Assessment Schedule.

Results

Caregivers showed a moderate level of subjective burden. The highest levels of distress were reported regarding the patient's behaviour; the most distressing behaviours were hyperactivity, irritability, sadness and withdrawal. Regarding the patient's role performance, the most worrying aspects were those associated with the patient's work or study and social relationships. Regarding adverse effects on others, caregivers were especially distressed by the way the illness had affected their emotional health and their life in general. Poorer social and occupational functioning, an episode in the last 2 years, history of rapid cycling and the caregiver being responsible for medication intake explained a quarter of the variance of the caregiver's subjective burden.

Limitations

This was a cross-sectional study focused only on primary caregivers, there was no control group of non-bipolar patients.

Conclusions

This study provides relevant data concerning the burden of caregivers of stable bipolar patients, pointing at potential targets for psychosocial interventions.

Introduction

Bipolar disorder is a chronic and recurrent illness that constitutes the sixth leading cause of disability amongst the physical and psychiatric disorders (López and Murray, 1998). Psychosocial and occupational difficulties (MacQueen et al., 2001, Goldberg and Harrow, 2004), financial problems (Kleinman et al., 2003), marital failure (Brodie and Leff, 1971, Kessler et al., 1998), substance abuse (Kessler et al., 1996, Levin and Hennessy, 2004), neuropsychological deficits (Martínez-Arán et al., 2004) and suicide (Hawton et al., 2005) are some of the possible consequences of the illness impairment. Even during remission, residual symptoms may still be present in a high proportion of patients (Fava, 1999, Judd et al., 2002, Judd et al., 2003) and, although syndromal recovery may be achieved soon after hospitalization, functional recovery seems to be more difficult to achieve (Tohen et al., 2000). The disease has a significant impact on the patient's perception of the quality of life both within and outside the family (Morselli et al., 2004). Every episode of the illness is a stressful life event for all the family members and, even when the illness is stabilized, the fear of new relapses is often present.

Since families became more actively involved in the care of the patient as a consequence of deinstitutionalization, the effects of the family's attitudes on the patient's illness course (Miklowitz et al., 1988, Priebe et al., 1989, Mino et al., 2001, Yan et al., 2004) have been complemented by research related to the impact of the illness on caregivers (Reinares and Vieta, 2004). The caregiving role is very demanding, frequently distressing, and harmful to health and quality of life (Struening et al., 2001). Family burden is commonly defined as the consequences that living with an ill relative has on caregivers. A high burden level on relatives of bipolar patients has been reported (Chakrabarti et al., 1992, Perlick et al., 1999, Dore and Romans, 2001) and recent studies have shown that caregiver's burden may influence the clinical outcome of bipolar disorder (Perlick et al., 2001, Perlick et al., 2004).

Identifying and modifying burdensome aspects might help to reduce the level of burden and their negative effects both on the caregivers and patient outcome. A prolonged illness and high levels of dysfunction among patients (Chakrabarti et al., 1992), caregiver illness beliefs (Perlick et al., 1999) and coping style (Chakrabarti and Gill, 2002) are some of the factors that have been reported in the literature as influencing the family burden perceived by relatives of bipolar patients. However, the predictors of burden have to be more deeply investigated. Another area of research is to analyse which were the most troublesome aspects of burden (Targum et al., 1981). Unfortunately, burden studies of bipolar patients and their families are scarce and most of the existing ones have mainly used small and/or heterogeneous patient samples. Data on caregivers' burden in samples of non-acutely ill patients are particularly scant. Judd et al., 2002, Judd et al., 2003 reported that patients spent more time in remission or subthreshold symptoms. As suggested by Ogilvie et al. (2005), there is a need to understand caregivers' views and perceptions of the stresses and demands arising from caring for someone with bipolar disorder in order to develop practical, appropriate, and acceptable interventions and to improve the training of professionals working with bipolar patients and their caregivers.

The aims of this study were to assess the level of subjective burden in a sample of euthymic bipolar patients' caregivers, to analyse what the most burdensome aspects for caregivers were and to study which variables (sociodemographic and related to the illness) may influence the subjective burden as experienced by caregivers.

Section snippets

Subjects

The sample was obtained from the Bipolar Disorders Program of the Hospital Clínic of Barcelona. To be enrolled, patients were required to fulfill DSM-IV criteria for bipolar I or bipolar II disorder, being euthymic for at least 3 months (scoring lower than 9 on the HDRS and lower than 7 on the YMRS) and aged between 18 and 65 years. All the patients received standard pharmacological treatment following the treatment algorithms of the Barcelona Bipolar Disorders Program. Exclusion criteria were

Sample description and patients' flow

The first 100 consecutive patients and their caregivers fulfilling inclusion criteria were invited to participate in the study. Fourteen cases refused to join the study giving general reasons, mainly due to lack of available time. Table 1 shows the characteristics of the patient and caregiver sample.

Degree of subjective burden and most burdensome aspects

With respect to subjective burden, as a mean, the caregiver sample showed a moderate level of distress. The highest levels of distress were reported regarding the patient's behaviour, followed by

Discussion

The caregivers in this sample had a moderate level of subjective burden. The highest levels of distress were reported regarding the patient's behaviour, followed by the distress related to adverse effects on others and finally by the patient's role dysfunction. Although the literature is limited, other authors have also described high levels of burden related to bipolar disorder, but in contrast with our study, most of them included symptomatic patients (Fadden et al., 1987a, Chakrabarti et

Acknowledgements

This study was supported in part by grants from the Stanley Medical Research Institute (Bethesda, MD, USA) and FIS-PI051542.

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