Informal care of patients with schizophrenia.

BACKGROUND

Schizophrenia is a disease that causes strong societal rejection and requires a significant allocation of healthcare and social resources. The chronicity and characteristics of the disease require continued care, often provided by nonprofessionals close to the person diagnosed with schizophrenia.

AIM OF STUDY

To analyze the value of informal care associated with the loss of personal autonomy (dependency) caused by schizophrenia in Spain; to study the association between the level of dependency and the number of hours of informal care provided; and to examine the association between the level of dependency/hours of informal care and the burden borne by caregivers.

METHODS

We used the Survey on Disabilities, Autonomy and Dependency to obtain information on the characteristics of disabled individuals with schizophrenia and the individuals who provide them with personal care. Assessment of informal care time was performed using the proxy good method. Statistical multivariate analyses using ordered probit models were conducted to study the impact of the degree of dependency on the hours of care provided and probit models to study the burden placed on caregivers in terms of health, professional, and leisure/social dimensions.

RESULTS

The economic value of care varies between 523.06 and 866.7 euro per week censoring at 16 hours of care per day (667.22-1,105.66 when no time censored). A primary informal caregiver of a severe or greatly dependent individual with schizophrenia was between 20.5% and 23.8% more likely to provide a high level of informal care (over 70 hours per week), between 6.1% and 6.4% less likely to provide a medium level of informal care (between 31 and 70 hours per week), and between 14.4% and 17.6% less likely to provide low-level care (30 hours or less per week). Informal caregivers who provide care for severely/greatly dependent or moderately dependent people had a higher probability of suffering from health, professional, and family/socially related problems than caregivers who cared for non-dependent people.

DISCUSSION AND CONCLUSIONS

The results show a part of the high social cost of schizophrenia in Spain. At the same time, the study provides evidence that more severe levels of dependency are positively associated with more hours of informal care and higher caregiver burden.

IMPLICATIONS FOR HEALTH POLICY

The results show that health or social care programs targeted at persons with autonomy limitations cannot overlook the importance of informal care, since doing so would lead to inefficiencies or inequities and reduce the well-being of citizens.

IMPLICATIONS FOR FURTHER RESEARCH

Information on informal care should be incorporated in the design of health and social care policies geared toward improving equity and efficiency in the allocation of social resources. Longitudinal studies of patients diagnosed with schizophrenia would provide further information on the characteristics and impact of informal care.