Indispensable intermediaries. The role of informal caregivers in the discharge process of older relatives

Abstract

Frail, older individuals are especially vulnerable in the discharge process due to complex continuing care needs. Patients and informal caregivers frequently experience the discharge planning as fragmented. Informal caregivers can play an important role in securing patients’ autonomy and in supporting their older relative during the discharge process.

This dissertation within the field of health services research was designed to describe the informal caregivers’ participation in the discharge process using a mixed methods design with a sequential explanatory approach. Recruitment of participants and data collection for this PhD study was carried out in two phases between October 2007 and July 2010. A cross-sectional study using structured questionnaire interviews with a consecutive sample of 254 patients and 262 informal caregivers was followed by a qualitative interview study with 19 informal caregivers.

The specific aims of this dissertation were to describe the informal caregivers’ participation in the discharge planning, to describe which factors contributed to a successful post-discharge outcome, and to explore the informal caregivers’ experiences of influencing decision-making at and after hospital discharge.

This doctoral dissertation highlights how the younger and older generations of informal caregivers experience the discharge process differently. The younger generation caregivers, mainly adult children, appear to be better informed and they engage in dialogue and cooperate with the personnel at the hospital to a greater degree than the older generation caregivers, mainly consisting of spouses. Only half of the informal caregivers in the study reported participation in the discharge process. The informal caregivers appear to be indispensable intermediaries without whom the patients become even more vulnerable in the discharge process.