Abstract

Current privacy legislation precludes home care researchers from using information sources such as the CCAC provincial database, to recruit subjects. Researchers in the homecare sector continue to rely on hospital staff and homecare agencies as recruitment intermediaries for the foreseeable future. When planning recruitment, academic researchers must recognize the unique challenges to full participation faced by homecare agencies and sector partners, including scarce financial and labour resources. To undertake research, all stakeholders in research projects (academics and home care partners) should be involved in project design with clearly articulated roles and responsibilities pertaining to recruitment. Background: Due to rapid growth and change in the Canadian homecare sector, there is a critical need for evidence-based research to inform policy makers, sector leaders, and academics on future program directions. Difficulties recruiting research subjects has been identified as a serious barrier to increasing the volume and quality of evidence offered by homecare studies. The investigators aimed to determine the nature of recruitment problems encountered, and the extent to which these difficulties were unique to homecare research.

Method: First, a systematic review of the health services and homecare research literature was conducted. Second, semi-structured interviews (n=9) were conducted with researchers involved in 8 homecare studies in Ontario. Sampling methodology was non-random, and was designed to capture a range of hospital and university affiliated studies (2 randomized control trials, 1 randomized crossover trial, 5 descriptive or observational).

Findings: Between 5% and 70% of homecare patients refused to participate in the 8 studies. Strong patient preference for either home or hospital care was found to be one of the strongest barriers to recruiting participants to randomized control trials, and 37% to 100% of subjects refused to participate after being randomized to the hospital- rather than homesetting. This was noted particularly among studies involving paediatric and geriatric populations, where family members of patients were involved in the decision to participate.

Breakdown in the referral process from hospital and homecare agency staff to researchers was another major factor. Problems included: the failure of homecare agency staff to contact as many as 46% of potential participants; selective bias in not contacting difficult clients to participate; large time lapses between initial contact with participants by homecare agencies and subsequent follow-up by researchers. Financial and labour cutbacks among homecare agencies that had offered in-kind services was another area of concern, and two agencies withdrew from projects due to lack of resources.

Other recruitment problems unique to homecare research included: fear by women and elderly homecare recipients of strangers entering their homes; non-participation by subjects after the clinical component of care was complete; a reluctance by potential participants to allow their homes to be sites of research; differing expectations between academics and homecare agencies on the roles and responsibilities involved in partnering; and high caregiver burden. Identified solutions ranged from: relaxing or altering study design; using media and outreach recruitment strategies; hiring dedicated recruiters; and financial remuneration for homecare agencies to cover costs.

Conclusions: Current privacy legislation precludes home care researchers from using information sources, such as the CCAC provincial database, to recruit subjects. Researchers in the homecare sector continue to rely on hospital staff and homecare agencies as recruitment intermediaries for the foreseeable future. When planning recruitment, academic researchers must recognize the unique challenges to full participation faced by homecare agencies and sector partners, including scarce financial and labour resources. To undertake research, all stakeholders in research projects (academics and home care partners) should be involved in project design with clearly articulated roles and responsibilities pertaining to recruitment.

Reference: Miller KL, McKeever P, Coyte PC. Recruitment issues in healthcare research: the situation in home care. Health and Social Care in the Community 2003; 11(2): 111-123.