Factors influencing informal care-giving

BACKGROUND: As downsizing of institutional care continues, patients discharged are likely to have more severe mental illnesses, and to have experienced longer tenures within institutions than patients who have been discharged in the past. As greater numbers of patients are removed from mental hospitals, the objective burden experienced by informal care-givers may increase, particularly if formal care levels are inadequate. AIMS OF THE STUDY: This paper documents who assumes informal care-giver roles, and the form such care-giving takes for patients discharged from a state hospital. Specifically, this paper identifies (i) what factors affect a person's decision to assume a care-giver role, including the participation of other network members in care-giving, (ii) what factors influence whether care-giving is provided in time or in direct purchase of care and (iii) how the patient's treatment location affects the decision of the network member to assume any care-giving role. DATA AND ANALYTICAL METHODS: Data for this paper are taken from a longitudinal study of the closure of a state mental hospital in central Indiana. Seventy-seven patients were asked to identify their community networks. Ninety-eight network members were surveyed about the informal care, both in time or through direct expenditures, they provided to these patients one year after discharge. Care-giving relationships were estimated using a multivariate probit model. Such a model estimates the extent to which the decision to provide care in either form depends on the care-giving activities assumed by other network members associated with a given patient, as well as the characteristics of individual patients and network members. RESULTS: Forty-one per cent of network members provided some level of informal care, with 13.3% providing some care in time, and 35.7% providing some care through direct expenditures. A positive relationship was found between participation in informal care-giving and the perception by the network member that patient needs were not being met by professionals. The decision to provide informal care was also found to be sensitive to the level of informal and formal care received by the patient. Care-giving in expense was found to be positively related to the care-giving decisions of other informal care-givers, but care-giving in time was not. Network members were more likely to provide care in time for patients who had been recently discharged to the community than for patients who remained in institutional settings. CONCLUSIONS: These results suggest the transfer of persons with severe mental illnesses from state hospitals to the community may shift the care burden between formal and informal providers. If this is the case, discharge criteria should include such factors as the community resources available to the patient. IMPLICATIONS FOR HEALTH CARE PROVISION AND USE: The responsiveness of network members to perceived unmet need bespeaks the importance of informal care when the continuity of formal care cannot be assured. Findings also suggest there may be some substitution of formal and informal care when patients are discharged from institutions. Further analysis is required to determine whether network members' perceptions of unmet need are accurate, and means by which network members can be made better attuned to unmet needs actually experienced by patients.