[The effect on family members of treating home-hospitalized patients]

In recent years, chronic patients being treated at home are being joined by increasing numbers of acute and sub-acute patients. Although there has been a considerable expansion of formal services for home hospitalization, nevertheless a significant part of the burden of caring for these patients falls on their families. Many studies have examined the effect on the family of treating chronic patients at home, but very little is known about the effects on the family caregiver of treating an acute or sub-acute patient at home.

a. To determine the main areas of care involving family members within the framework of home hospitalization. b. To assess the caregivers' sense of burden. c. To identify the causes of the feelings of burden. d. To examine the caregivers' specific difficulties. e. To identify the areas in which they are particularly interested in additional guidance.

The study population included 179 primary caregivers of patients registered in four home hospitalization units. The data were collected during face-to-face interviews with the primary caregivers, in the patient's homes.

Half (49%) of the caregivers were the patients' spouses, and the rest were other family members, 67% were women. The average age was 56, and about a third were over 65. On average, they were involved in six areas of care. Fifty three percent reported that the burden they had to contend with was too heavy, 28% said it was not so heavy, and 19% said it was not heavy at all. A multi-variate analysis revealed that the feeling that the burden was too heavy had a statistically significant correlation with caring for another family member at home, being involved in 3+ areas of treatments, being married, 9+ years of education, the patients suffering from frequent pain or unable to reach the bathroom independently. Most (75%) of the caregivers reported three or more areas of burden which include the time devoted to care giving, and the effect of the treatment on the patient's health, mental and physical condition. Although 77% of them had received instruction on how to treat the patients, 29% cited at least one area in which they would have liked to receive more instruction, noting in particular the need to learn how to deal with changes in the patient's mental status.

Family members caring for home-hospitalized patients require more instruction and advice from the formal agencies during the daily care of the patient, particularly in specific subjects. There is a need to develop additional instruments for advice and instruction, in a broad range of areas, in order to assist the caregivers in their complex role. There is a need to continue to examine specific areas in which the family members require additional counselling and instruction, in order to better plan these services, and help improve the quality of care for home-hospitalized patients.