Schizophrenia is a disabling, chronic psychiatric disorder that poses numerous challenges in its management and consequences. It extols a significant cost to the patient in terms of personal suffering, on the caregiver as a result of the shift of burden of care from hospital to families, and on society at large in terms of significant direct and indirect costs that include frequent hospitalizations and the need for long-term psychosocial and economic support, as well as life-time lost productivity. ‘Burden of care’ is a complex construct that challenges simple definition, and is frequently criticized for being broad and generally negative. Frequently, burden of care is more defined by its impacts and consequences on caregivers. In addition to the emotional, psychological, physical and economic impact, the concept of ‘burden of care’ involves subtle but distressing notions such as shame, embarrassment, feelings of guilt and self-blame. The early conceptualization of ‘burden of care’ into two distinct components (objective and subjective) has guided research efforts until the present time. Objective burden of care is meant to indicate its effects on the household such as taking care of daily tasks, whereas subjective burden indicates the extent to which the caregivers perceive the burden of care. Research contributions in later years (1980s to the present) have added more depth to understanding of the construct of burden of care by exploring important determinants and factors that likely contribute or mediate the caregiver’s perception of burden of care. Several studies examined the role of gender, and reported that relatives of male patients with schizophrenia frequently experience more social dysfunction and disabilities than those of female patients. Similarly, a number of other studies documented the contribution of ethnicity and cultural issues to subjective burden of care. Although there is no complete agreement on whether a specific cluster of psychotic symptoms has the most impact on a caregiver’s burden of care, there is agreement that the severity of symptoms increases it. An extensive literature concerning family interventions in schizophrenia has demonstrated the positive impact of various family interventions in improving family environment, reducing relapse and easing the burden of care. Although the evidence of such positive impact of family interventions in schizophrenia is well documented, such interventions are neither widely used nor appropriately integrated in care plans, and are frequently underfunded. Although the cost of caregiving is considered to be significant, there are no reliable estimates of the costs associated with such care. The majority of available literature categorized the cost of burden of care among the indirect costs of schizophrenia in general. In recent years, attempts to compare the costs of caregiving in several countries have been reported in the evolving literature on this topic. ‘Burden of care’ as a complex construct certainly requires the development of appropriate methodology for its costing. In achieving a balance between the patients’ and caregivers’ perspectives, caregivers have to be included in the care plan and adequate information and support extended to the family and caregivers. Access to better treatment for patients, including medications, psychosocial interventions and rehabilitation services, are important basic elements in easing the burden on caregivers. Other measures such as availability of crisis management, provision of legally mandated community treatment to avert hospitalization, and well informed and balanced advocacy are also important. Although research efforts have been expanded in the last 3 decades, an urgent need exists for enhancing such efforts, particularly in the development and evaluation of effective family interventions strategies. There is also a need for continued improvement in the delivery of psychiatric services to the severely psychiatrically ill and their families. As there is a lack of reliable cost information about the family burden of care specific to schizophrenia, there is an urgent need to develop reliable approaches that can generate data that can inform in policy making and organization of services.

The burden of schizophrenia on caregivers: a review.

OBJECTIVES: Pediatric chronic physical illness and adult psychiatric disorders are substantial sources of burden for family care-takers, but little attention has been paid to parental burden resulting from children's or adolescents' psychiatric disorders. This paper describes the predictors of perceived parental burden and its impact on the use of specialty mental health and school services. METHODS: A representative general population sample of 1015 9-, 11-, and 13-year-olds and their parents completed structured psychiatric diagnostic interviews and the Child and Adolescent Burden Assessment. RESULTS: Weighted estimates indicated that 10.7% of parents in the general population perceived burden resulting from their children's symptomatology. Significant predictors of perceived burden were levels of child symptomatology and impairment and parental mental health problems. Children's depressive and anxiety disorders were associated with less burden than other diagnoses. The effects of child disorder severity on specialty mental health service use appeared to be mediated by the level of burden induced. CONCLUSIONS: Substantial levels of parental burden resulted from child psychiatric disorders and were a major reason for specialist mental health service use.

Perceived parental burden and service use for child and adolescent psychiatric disorders.

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Perceived Parental Burden andService UseforChild andAdolescent Psychiatric Disorders

A close relative of 55 severely head injured adults (post-traumatic amnesia greater than or equal to 2 days) was interviewed 3, 6 and 12 months after injury to obtain information about psychosocial changes in the patient. The problems most frequently reported were emotional disturbances, poor memory, and subjective symptoms, with physical disability much less common. The amount of stress experienced by relatives did not diminish between 3 and 12 months, and was related to the incidence of mental and behavioural changes in the patient. The question of whether or not compensation was being claimed did not appear to influence the outcome.

https://jnnp.bmj.com/content/jnnp/44/6/527.full.pdf

The short-term outcome of severe blunt head injury as reported by relatives of the injured persons.

The aim of this study was to develop a practical, comprehensive, and valid self-report measure of the experience of caring for a relative with a serious mental illness. The notion of caregiver "burden' was rejected; instead caregiving was conceptualised within a 'stress-appraisal-coping' framework. A 66-item version of the Experience of Caregiving Inventory (ECI) was derived from analyses of responses from 626 caregivers, and then tested on an independent sample of 63 relatives of patients with schizophrenia recently in acute care. The extent to which the ECI complied with the stress-coping model was tested, especially the degree to which it, in association with coping, predicted psychological morbidity in carers. Ten sub-scales with good internal consistency resulted from our analyses, eight negative (difficult behaviours; negative symptoms; stigma; problems with services; effects on the family; the need to provide backup; dependency; loss) and two positive (rewarding personal experiences; good aspects of the relationship with the patient). The ECI, in conjunction with coping style, predicted a large proportion of the variance in the General Health Questionnaire (GHQ). We concluded that the ECI taps salient dimensions of caregiving distinct from, although linked with, coping and psychological morbidity. It has potential as a useful outcome measure for interventions aimed at promoting caregiver well-being.

Caring for relatives with serious mental illness: the development of the Experience of Caregiving Inventory.

et al., 1961, Grad et al., 1963, Hoenig et crl., 1965). Wing et al. (1964) have pointed out, however, that this may only be achieved at a price: ... &dquo;the policy of early discharge of schizophrenic patients is based to a large degree on the willingness of relatives to attempt the role of nurse and put up with considerable discomfort and distress&dquo;. Financial and other difficulties for the family may also be involved.

Marian W. Hamilton

Papers

The schizophrenic patient in the community and his effect on the household.

The desegregation of the mentally ill