Home and Community Care Digest

Home and Community Care Digest 6(3) September 2007 : 0-0

Family involvement in care for stroke patients - Complements or Substitutes?


Stroke survivors and survivors of other serious brain injuries are often faced with a lengthy recovery lasting from months to several years. The purpose of this study was to determine the division of labour between family and paid caregivers before and after home care agency involvement. The study found that families substituted their care for paid care, such that the patient received the same amount of care over time.
Background: Stroke survivors and survivors of other serious brain injuries are often faced with a lengthy recovery lasting from months to several years. Home care services provide access to skilled services such as physical therapy and nursing, but only for a limited duration. Families are faced with the difficult task of assuming full control for care when home care agencies close the case. Little is known about total levels of patient care during home care provision and after discharge. The purpose of this study was to understand the patient and family experience of the transition period after paid home care services ends.

Methods: This study enrolled 99 family caregivers looking after stroke and brain injury patients in New York City. Eligible patients were discharged from hospital or nursing home to a certified home health agency. Family caregivers were interviewed several times - both while the case was open and after it was closed. Almost half of the study volunteers had dropped out of the study by ten months. Family caregivers were asked to estimate how much patient care was provided on a typical day (unpaid family and paid care). Care provided by volunteers and friends was less than one hour per day and, therefore, was not included in any analyses. Study authors assumed that most paid care was provided by the home care agency while the case was open. They also assumed that after the case was closed, families purchased paid care privately.

Findings: Three-quarters of the family caregivers were women and about half lived with the care recipient. The average duration of paid home care services was 40 days. Patients with greater mobility impairments received more paid home care on average compared to those with no impairment (59 versus 28 days). The home health agency provided a range of services. All but one patient received skilled nursing care, and the majority also received physical therapy from the home health agency. Half had assistance from personal aides who assisted with activities of daily living such as dressing, grooming, and toileting. One-third of patients were visited by social workers and one-fifth received speech therapy. Approximately half of the patients were covered by Medicaid insurance and half were not.

(Note: The results that follow refer to the patients without Medicaid insurance. Results are limited by the fact that severity of illness was not controlled for in this study. Because Medicaid status can be viewed as a substitute measure for increasing dependency, Medicaid patients may have required more hours of care). When the case was open, patients received approximately 40 hours of care on average with the home care agency. Approximately 75% of this care was provided by family members. After the home care agency closed the case, total care for patients remained the same - families provided more care but the amount of paid care decreased from 12 to 3 hours per week. At nine months, families were providing approximately 40 hours of patient care per week.

Conclusions: This study suggests that in New York City, families of patients without Medicaid insurance substitute their care for paid services such that the patient receives the same amount of care throughout the involvement of formal home care services.

Reference: Levine C, Albert SM, Hokenstad A, Halper DE, Hart AY, Gould DA. This Case Is Closed: Family caregivers and the termination of home health care services for stroke patients. The Milbank Quarterly. 2006; 84: 305- 31.


Be the first to comment on this!

Note: Please enter a display name. Your email address will not be publically displayed