Substudy 4 Executive summary
Substudy 4: Pilot Study of the Costs and Outcomes of Home Care and Residential Long Term Care
by Marcus J. Hollander, Neena Chappell,
Substudy 4 was a pilot for a second, larger-scale study, Substudy 5. Both studies focus on seniors. The main goal of the studies is to document the typical costs and outcomes of care for clients in home care compared to similar clients in residential care. These studies examine whether there are differences in the formal costs of services and in the health outcomes of clients living in the community versus in long term care facilities. They also measure the informal costs of care by identifying the psychological, social, and financial burdens shouldered by family, friends, and volunteers looking after clients in the community and in facilities. Thus, Substudies 4 and 5 address the impact of home care and residential care services on both clients and their families. The principal investigators for these two substudies are Dr. Neena Chappell, Dr. Marcus Hollander, Dr. Betty Havens, Professor and Senior Scholar, Department of Community Health Sciences, University of Manitoba, and Dr. Carol McWilliam, Professor, School of Nursing, Faculty of Health Sciences, University of Western Ontario.
The primary purpose of Substudy 4 was to test instrumentation and determine the feasibility of data collection strategies in order to identify the final structure of the interview process and the format for the data collection tools for Substudy 5. The pilot study was designed to include more measures than were needed so as to identify those measures that were critical and workable.
The major data collection tools were: a multi-section Client Questionnaire which was used to obtain information about the client directly; a multi-section Caregiver Questionnaire which was used to obtain information from an informal caregiver about his or her experience of providing care to the client; and diaries which assessed health related expenditures for the client as well as assistance and time provided by both informal caregivers and formal service providers. For each tool, information was collected regarding: the amount of time required to complete each instrument; difficulties encountered by clients, informal caregivers, and interviewers with the measurement instruments; and difficulties encountered with obtaining participation. In general, it was noted that both the Client and Caregiver Questionnaires were too long and needed to be revised to be more manageable. As well, the diaries were often incomplete or not completed at all.
Regular teleconferences were held with the investigators and research assistants to determine which of the measures used in the pilot study would be used in Substudy 5. Instruments were revised based on the results of the interviewing process, the time required to administer the instruments, and the results of the analyses. The instruments for Substudy 5 were gradually refined and included only those items that tapped information relevant to the purposes of the study. In addition, a number of issues which could affect the conduct of Substudy 5 were identified and possible solutions were discussed.