Abstract
Recruitment is the cornerstone of research involving human beings. Most of what has been written involved institutional recruitment, yet the past two decades have seen an exponential rise in the delivery of home care. This shift has been accompanied by an increase in the volume of research conducted in homecare, and the majority of home care recipients are elderly. The elderly experience a disproportionate occurrence of consumer fraud and are increasingly reluctant to give strangers access to their homes. Advocacy groups have made formidable contributions to raising the awareness among older persons of risks to their person and finances. The aim of this article is to raise awareness of the importance of recruitment in the home care community and to recommend to researchers that they partner with community agencies and advocacy groups to inform citizens of the value of their participation in research in home care, and the benefits.
The media report the latest in research findings on a daily basis. The public increasingly expect the generation of knowledge to be continuous, and that access to this knowledge is available. Answers to research questions depend on the participation of citizens. Recruitment of the citizenry is the cornerstone of the carefully conceptualized applied research study involving human participants. Recruitment refers to the steps taken to attract potential study participants to decide to be part of the research experience. Recruitment challenges have been studied and discussed over the past three decades and include some of the following; participant health limitations, inconvenience, timing of a diagnosis such as cancer, distrust of research, low literacy levels, and lack of awareness regarding various studies (Cooley et al., 2003; Sood et al., 2009).
Home care has increased in Canada by 51% since 1997 (Canadian Home Care Association, 2008). Compared to hospital or institutional care, home care is unique with respect to the nature of the formal service provision, role of family members, client autonomy, and regulations (Hirdes et al., 2004; Lang & Edwards, 2006; Lang et al., 2006). Home care clients are generally older, more likely to be functionally impaired, and receiving a variety of medications (Madigan, 2007). The increase in home care provision has naturally led to an increase in the amount of research conducted in home care. At the same time, recipients of home care, most of whom are elderly are reluctant to have strangers in their homes (Miller, McKeever, & Coyte, 2003).
Increasingly, the elderly are being targeted for telephone scams involving such things as notification of lower interest rates with recommendations to invest, prizes, and pleas from con artists posing as grandchildren and demanding cash for an emergency (Canadian Anti-Fraud Centre, 2009; www.phonebusters.com). In response to these threats and to the graying of the population, a number of advocacy groups have experienced a rise in membership to protect the interests of the elderly, such as The Canadian Association of Retired Persons (CARP, 2009) and the long-standing American Association of Retired Persons (AARP, n.d.). Advocacy groups have made important and significant progress in raising the awareness among the elderly to all forms of risk, and the children of the elderly are equally informed. Although all research receives formal ethical approval, this does not mean that potential research participants, their families, and care providers are knowledgeable about ethical approval or about the research process; and the research community has an important role to play in engaging stakeholders such as advocacy groups in raising awareness about the importance of citizen participation, and of the research process.
Most of the literature related to research recruitment has been written based on institutional experience. Very little literature exists regarding recruitment issues in home care. Absent from the literature on recruitment is any discussion about strategy in the present era of scams that are focused on the elderly, and the rise in advocacy groups for the elderly. The purpose of this manuscript is to raise awareness in the home care community of the value of recruitment while respecting the rights and priorities of home care recipients, and home care personnel. This article will address recruitment in general, challenges and strategies, recruitment in home care, recruitment in an era of scams and advocacy, and last, recruitment implications for clients, home care providers, and researchers.
Recruitment
Researchers overwhelmingly agree that inadequate attention has been given to describing recruitment successes, challenges and strategies (Andersen et al., 2010; Chlan, Guttormson, Tracy, & Lindstrom Bremer, 2009; Clutter Snyder et al., 2009; Cooley et al., 2003; Fredman et al., 2009; Gul & Ali, 2010; Higgins, 1998; MacDougall & Fudge, 2001; Marcellus, 2004; Sood et al., 2009; Williams, 2007). Insufficient recruits jeopardize research results in quantitative studies such as randomized control trials (RCT) and longitudinal designs, cause study delays, increase costs, and may lead to study termination (Gul & Ali, 2010; Miller et al., 2003). Although qualitative research designs do not require the numbers associated with quantitative work recruitment, challenges remain. Researchers commonly fall prey to the myth that the greatest challenge to research is to obtain the funds necessary to conduct the study and often will not have a separate budget line for recruitment assuming that this step is relatively easy, and that recruitment is a minor detail. One RCT with a home-based intervention for older cancer survivors reported accrual necessitated 9 weeks of a full-time equivalent (Clutter Snyder, 2009). Qualitative research necessitates purposefully recruiting participants that are knowledgeable about the phenomenon being studied and representative of all aspects of the phenomenon. The researcher will need to spend considerable time preparing the recruiter with the study details, and how to think about recruitment. This means the recruiter needs to have an interest in research and in the aims of the study.
Ethics committees diligently try to assist researchers to understand the importance of the recruitment process. The ethics application usually has several questions requiring the researcher to explain exactly how recruitment will unfold. This exercise initiates the thinking process around recruiting and may well be an ideal vehicle for requiring even greater detail including budgetary estimates and rationale for study recruitment.
Recruitment Challenges
The literature reviewed for this article highlighted that most study findings are written up as though the research process was smooth and uneventful, and there may in fact be some reluctance to admitting to challenges encountered in the research process. Marcellus (2004) in discussing study attrition advances the notion that because attrition is seen as a practical and not a theoretical concern, it is less deserving of discussion. This same notion may have some bearing on the scholarly writing on the subject of recruitment, although there is more written about recruitment than attrition. The challenges outlined with regards to recruitment in the past decade include; an under representation of older people particularly women in research (Andersen et al., 2010), a lack of leadership and research knowledge among staff at research sites, staff turnover, and past negative research experiences, (Chlan et al., 2009), low self-referral, failure to invest in recruitment (Clutter Snyder et al., 2009; Higgins, 1998), failing health, time, disinterest in research, distance from study centers, parking costs, illness trajectory, low literacy levels, and community-based care recipients are less likely to participate in research than hospital or clinic-based patients (Cooley et al., 2003; Fredman et al., 2009; Sood et al., 2009; Williams, 2007). Additional challenges include a lack of overt endorsement of research by study centers, and physicians (Fredman et al., 2009), failure to negotiate the routines of the research setting and to establish meaningful relationships with staff and participants, (Chlan et al., 2009; Higgins, 1998), and a lack of information about clinical trials resulting in providers not informing potential participants about the study (Sood et al., 2009). Participant focused challenges have been well-documented for over two decades and include age, meaning younger individuals are more likely to participate; gender, in that more men than women enroll in research studies; and those with higher income and education are more likely to participate in research (Gross, Julion, & Fogg, 2001; Hunninghake & Probstfield, 1987).
All of the challenges outlined above are important, however, three deserve further elaboration. First, the knowledge that men are more likely to self-select to participate in clinical trials lends itself to the possibility of using findings from research primarily conducted with males to care for both men and women. Male-dominated research studies frequently happened until the present decade (Cooley et al., 2003) however; considerable efforts continue to be made to address this. Despite this, women remain underrepresented in clinical trials. FDA data submitted for 2006-2007 revealed 120 trials (34.1%) with males only, and 232 trials (65.9%) with both men and women (Pinnow, Sharma, Parekh, Gevorkian, & Uhl, 2009).
The second challenge highlighted here is self-referral or passive recruitment versus active recruitment and provides relevant information and points for reflection when considering recruitment strategies. Active recruitment involves directly approaching potential individuals to inform and invite them to participate in studies, whereas passive involves advertisements, and posters. Most reported research used active recruitment strategies or a combination of both active and passive approaches (Chlan et al., 2009; Clutter Snyder et al., 2009; Cooley et al., 2003; Fredman et al., 2009; Gul & Ali, 2010; Jancey et al., 2006; MacDougall & Fudge, 2001; McDonald, 1999; Sood et al., 2009). Clutter Snyder (2009) reported that self-referral from passive recruitment strategies in older cancer survivors was ineffective, and Andersen et al. (2010) reported positive self referral response in Alzheimer’s Disease (AD) research from population-based screening and speculated that people in the early stages of the disease may have been motivated to respond based on the symptoms they were experiencing. This was deemed positive because the medications used to treat cognitive decline are more effective when used in the early stages of AD.
Conducting research in community-based settings is the third highlighted recruitment challenge (Cooley et al., 2003). Traditionally, most health-related research has been conducted in association with institutional settings. The past two decades have seen a shift in care to the home and community setting (Canadian Home Care Association, 2008). Researchers have not established networks of research associates in the home and community setting, and realize the need for this and the need to invest in continuing education of community stakeholders on the research process (Cooley et al., 2003).
Recruitment Strategies
Challenges require strategy and researchers have steadily innovated to succeed by employing strategies at each phase of the research cycle (planning, conducting, and follow up). The planning stage necessitates the identification of the study sample and the researcher needs to be thinking about the likelihood of access and what is known about the research participation behaviors in the targeted sample. For example, if research is to be conducted with participants who will be experiencing fatigue, then the need to be careful in the length and number of participant activities is of utmost importance, so that, the decision to participate is not affected by a feeling of being overwhelmed (Cooley et al., 2003; MacDougall & Fudge, 2001). At the same time that the sample identification is taking place, contacts with agencies and personnel that need to know about the study and who may be potential champions of the research need to be contacted and informed, and obtaining letters of support for the proposed research will also aid in the eventual recruitment (Chlan et al., 2009). This contact can serve as an opportunity to find out what other research projects–targeted agencies are involved in that may impact recruitment for a proposed study.
Planning also involves the actual recruitment and the recruiters are key. A complete palate of recruitment activities can be prepared (video, posters, in-service training, attending staff meetings, newspaper interviews), however if the intended audience does not have confidence in the messenger, then recruitment will fall short of targets. The recruiter needs to be able to communicate the value of the research and be attuned to how messages are being received because the responsibilities involved include; informing staff in areas involved in the research about the project to seek support, informing patients/potential participants about the proposed study as well as involving family members in discussions about the study. Careful attention to the development and maintenance of good relationships with all involved is paramount to recruitment success (Chlan et al., 2009; Cooley et al., 2003; Fredman et al., 2009; Gross, et al., 2001; MacDougall & Fudge, 2001).
Recruitment is central to the conduct of the research, and investment in this effort cannot be underestimated. Recruiters need to work closely with data collectors to make sure that the changing health status and individual needs of research participants are being respected, these individuals pay close attention to what works and with whom, and in doing so are able to enhance recruitment. Recruiters maintain regular and meaningful contact with agencies and personnel involved in the study, updating them on how the study is progressing, seeking feedback on any concerns at recruitment sites, and familiarizing themselves with work patterns at recruitment sites (Clutter Snyder et al., 2009; Cooley et al., 2003; Fredman et al., 2009; Gross, et al., 2001; Higgins, 1998).
Follow-up is equally important as every other step in the research process. Achieving recruitment targets is admirable; however, inattention to participant and stakeholder satisfaction has the potential to jeopardize recruitment in future research projects. When participants have had considerable involvement over a period of time with a study, relationships are established and care must be paid to the closure of these relationships, and to assuring that those involved are asked what information they hoped to have regarding the study they made possible. This same follow-up and relationship respect is owed to participating agencies and personnel who need to know what findings the study produced and what difference the study made. This attention to follow-up pays respect to all involved and paves the way for ongoing research partnerships (Fredman et al., 2009; MacDougall & Fudge, 2001).
Recruitment in Home Care
As stated earlier, there has been a significant increase in home care over the past decade and with this has come an increase in the number of research studies conducted in home care. Home care presents many of the same recruitment challenges as discussed above, but also has unique challenges, and little has been written about recruitment in home care. The only relatively recent review of recruitment challenges in home care revealed the following: (a) general reliance on home care nurses to recruit, (b) nurse shortages and wait lists for enrolment in home care result in missing out on potential participants, (c) institutional ethical review for home care studies, (d) physician reluctance to refer potential home care participants based on clinical safety concerns, (e) no Canadian database of home care recipients, and provincial privacy legislation around access to such a database, and (f) citizen concerns about the use of home as a site of care and research (Miller et al., 2003).
The reliance on home care nurses to recruit places additional burden on an already over-extended resource, nurses may not receive adequate in-servicing on research protocols, and may avoid approaching certain potential clients knowing that recruitment will take valuable time that may not be recovered. Reliance on agency staff to recruit needs reflection because the clients they are recruiting may experience fears that participation is somehow linked to services and may feel compelled to participate, (Ploeg, Biehler, Willison, Hutchinson, & Blythe, 2001) and staff may also unknowingly exercise a gatekeeper role with certain potential participants deciding that study participation may be too much for them, rather than let the client decide (Groger, Mayberry, & Straker, 1999).
The institutional and the home care context vary dramatically. In the institution, study participants are normally expected to follow routines, whereas, the participant in a study in home care decides when they would like to participate. Home care clients have an autonomy that institutional clients do not, therefore institutional review boards need to ensure that they have home care representation to assure decisions are made with the home care context in mind. Physician reluctance to support client participation in research as with reluctance on the part of anyone associated with home care needs to be explored to determine the source and if client safety is an issue, this will need to be addressed by all involved.
Of particular interest was the finding regarding participant and family concern about the “home” as site for care and research. This author in a pilot study of the perspectives of clients, family members, and unpaid caregivers on the meaning of safety in home care encountered reluctance on the part of participants to associate home with safety concerns because the home was considered a safe haven (Lang et al., 2009). Conclusions from both Miller et al., (2003) and Lang et al., (2009) recommend that home care researchers further explore the meaning of home and the extent to which home care participants experience a certain invasion of their domain by researchers as well as home care providers. In the case of Lang et al., (2009) the findings were instructive to researchers as to the attention that needs to be given to the language that is used to describe the planned research. Participants felt unease with researchers, implying that safety issues existed in their homes. They described themselves as experiencing problems or facing challenges but that home was their haven and they expected researchers and providers to respect the home as such.
Recruitment in an Era of Scams and Consumer Fraud
Consumer fraud and elder abuse (financial, physical, and psychological) are well-documented in the literature, with financial abuse the most commonly occurring. The typical victim of fraud is female, about 85, and suffering some cognitive impairment (Cohen, 2006). The top three sources of fraud reported in Canada for 2010 were telephone notification of lower interest rates with a recommendation to invest now, prizes, and pleas from con artists posing as grandchildren and demanding cash for an emergency (www.phonebusters.com). The population targeted usually have some financial reserve, have been unused to managing financial affairs, are socially isolated, and reluctant to reveal that they have been defrauded (Cohen, 2008). The dollar loss incurred by Canadians in 2009 from mass marketing fraud (MMF) was 59 million, down from 67 million in 2007. U.S. dollar loss on Canadian-based MMF was 14.5 million in 2009, down from 19 million in 2007. Dollar loss by Canadian identity theft victims almost doubled between 2007 and 2009, rising from 6.5 million to 11 million. Unlike the typical fraud victim described by Cohen (2006), the Canadian Anti-Fraud Centre Criminal Intelligence Report of 2009 noted 50- to 59-year-olds reported the greatest dollar loss imposed by MMF.
On the North American scene, both the United States and Canada have organizations that promote and protect the interests and rights of citizens as they age, namely the American AARP and CARP. Membership in CARP affords access to services such as driver improvement programs, discounts on dining, theatre, park and museum visiting, financial advice, and insurance (home, auto, health). CARP also lobbies government and generates regular reports on matters of concern to citizens such as the Elder Care Report of 2009 noting that citizens needing care prefer to remain at home, increases in in-home services are required, and more regulation in the expertise of in-home care providers is required.
Advocacy groups could become clearinghouses for information on research studies in progress and seeking participants. Study self-referral has not been stellar in the past, however if target groups like the elderly have more information about research and secure places to get information, this will increase the likelihood of participation. Norwegian researchers studied the characteristics of individuals recruited from physician’s offices compared to self-referrals in an AD study and found those who self-referred were generally younger, predominantly male, and had less cognitive decline (Andersen et al., 2010; Cooley et al., 2003). The self-referred were actually ideal candidates for the proposed treatment of early AD. This has important implications for promoting citizen engagement in research and advocacy groups can aid with this.
In addition, most jurisdictions across North America have legislation in place mandating the reporting of abuse, and media campaigns illustrating the various forms of abuse have raised awareness among all citizens regardless of age. The success of these initiatives in raising awareness regarding consumer fraud is important and instructive for research recruitment. Researchers often rely on providers to recruit home care clients. The name and telephone number of a potential participant is then given to a researcher or research assistant who follow-up with a telephone call to confirm participation. The nature of some studies and the health status of the participant necessitate conducting the research in the home. Knowing that most home care clients are elderly and reluctant to open their homes to strangers (Canadian Home Care Association, 2008; Miller et al., 2003), researchers need to consider planning recruitment strategy with advocacy groups to raise awareness about the importance of the participation of the elderly in research, information about the research process, and how potential participants may be assured their rights as citizens and participants are respected.
Recruitment Implications.for Clients/Families
Home care is on the rise and we have just begun to explore the limits of the care that can be accommodated at home. Home care clients and families have already expressed that they prefer to receive care at home (CARP, 2009), at the same time they expressed concern about the transformation of the home into a care space (Lang et al., 2009; Miller et al., 2003). The rapid expansion of home care, the pushing of the boundaries of home care, and the concerns of home care clients are a few examples of the importance of expanding the research agenda in home care. Clients, their families, and unpaid caregivers are essential to the research agenda and the research community needs to further the development of partnerships with recipients, home care agencies, and care providers, both regulated and unregulated. Home care is not unique to older members of society; however, they do make up the greatest users of home care. Researchers also need to partner with advocacy groups for the elderly and transfer research-related information via these groups. Information regarding planned studies, the research ethics approval process, and the rights of research participants can be communicated via existing advocacy groups potentially augmenting the awareness among the elderly about research, the contribution they can make, and enhancing recruitment.
Recruitment Implications for Home Care Providers
Home care providers, both the agencies and the regulated and unregulated staff, have not traditionally experienced the conduct of research as part of their mandate (Miller et al., 2003). This necessitates a re-visioning of agency mandates and attention to the incorporation of varying levels of research involvement as part of staff workload. Regulated health care professionals such as nurses, physicians, physical therapists, occupational therapists, respiratory therapists, dieticians, and social workers learn the research process and will undoubtedly welcome the opportunity to participate in some way in the research process, provided workload allows. Providers, both regulated and unregulated, develop ongoing and meaningful relationships with clients and family members and can be instrumental in recruiting clients or in providing research-related information to clients who are in the process of deciding about participating in a research project. Researchers also need to be including home care staff as members of research teams as projects are planned to facilitate learning the research process, and to inform researchers on the feasibility of the proposed research methods including recruitment.
Recruitment Implications for Researchers
One caveat for the researcher in the home care setting is to pay particular attention to the concerns raised in previous work regarding the meaning of home and the transformation of home for the purposes of home care. Important lessons related to home care were highlighted in the inaugural report on the state of the knowledge on safety in home care (Lang & Edwards, 2006). This report cautioned against the unilateral application of institutionally developed safety programs, that client and family member safety was inextricably linked, and that a “new set of glasses” be used with which to view safety in home care. These findings are cautionary as well as visionary and call for home care researchers to partner with all involved in the conduct of research with clients in the home. Full partnerships with home care stakeholders, as well as advocacy groups will involve a considerable investment of time with the potential of better research-informed stakeholders, advocacy groups supporting the research process, and the advancement of recruitment.
Conclusion
Recruitment is central to the conduct of research, and the importance and value of citizen participation cannot be underestimated. The population is aging, and home care is an integral aspect of the lives of many older citizens. The research agenda in home care will grow in the coming years. Current and future home care clients need information and opportunity to fully participate in the research concerning their well-being. Advocacy groups exist to protect the interests of citizens and the elderly in particular. Researchers are ideally situated to push the boundaries of recruitment by developing partnerships with advocacy groups for the purpose of informing the citizenry of the research agenda in home care, how as citizens they can participate, and how participation will shape the future of home care and the health of the citizenry.
Footnotes
The author(s) declared no potential conflicts of interest with respect to the authorship and/or publication of this article.
The author(s) received no financial support for the research and/or authorship of this article.
