Public Health Model Identifies Recruitment Barriers among Older Adults with Delirium and Dementia

Abstract

Recruiting older adults and their family caregivers into research studies presents challenges. Although the literature notes some general recruitment challenges, no studies specifically address the unique challenges of recruiting older adults who have Alzheimer's Disease (AD) and their family caregivers in studies about delirium or suggest using a framework to identify barriers to recruiting this population. In conducting a pilot study about preparing family caregivers to detect delirium symptoms in older adults with (AD) the researchers used the Public Health Model for identifying barriers to recruitment. The goals of this methodological article are to: (1) briefly describe the methodology of the pilot study to illustrate how the Public Health Model was applied in the context of the present study and (2) discuss the benefits of the Public Health Model for identifying the barriers to recruitment in a study that prepared family caregivers to detect delirium symptoms in older adults with AD. The Public Health Model helped us to identify four specific barriers to recruitment (lack of knowledge about delirium, desire to maintain normalcy, protective caregiving behaviors, and older adult's fears) and ways to overcome them. The Public Health Model might also help other researchers address similar issues.

Reasons for nonparticipation in the Valuing Active Life in Dementia randomised controlled trial of a dyadic occupational therapy intervention: An interview study

“…Inconveniences have previously been cited as a significant barrier to participation in dementia trials. 5 , 14 – 21 It is accepted that not all expressions of interest in trials will convert into participants due to the time constraints inherent in caring. 29 However, it is possible that inconveniences were considered easier to talk about as reasons for declining than risk opening the ‘Pandora’s box’ of caring for a person with dementia.…”

“… 13 Some reasons for declining psychosocial dementia trials are reported, either with the trial outcome 5 , 14 – 19 or when reflecting on recruitment issues. 20 , 21 These papers reported multifaceted reasons for declining, including time constraints, the wish to maintain normality, perceived insufficient value exchange, dissonance between dyad’s health and the study requirements, and protection of the person with dementia. Reports also state that many people do not provide a reason for declining, although it is unclear how formally the information was obtained.…”

A Personal Touch: The Most Important Strategy for Recruiting Latino Research Participants

“…They may also be deterred from participating in research by their perceptions of cultural differences between their own experiences and researchers’ expectations of participants’ knowledge, skill, or attitudes (Medina, 2013). In addition, Latinos might not participate because of language barriers and concerns about undocumented immigration status (Bull, Boaz, & Sjostedt, 2014; Crist et al, 2013; Ejiogu et al, 2011; Ford et al, 2013). …”

Recruiting Community-Based Dementia Patients and Caregivers in a Nonpharmacologic Randomized Trial

“…Although barriers to participation in ADRD clinical trials are well documented (Bull, Boaz, & Sjostedt, 2013; Connell, Shaw, Holmes, & Foster, 2001; Murphy et al, 2007; Rabinowitz & Gallagher-Thompson, 2010; Schneider, 2012; Snyder et al, 2009), few studies examine the effectiveness and cost of different recruitment strategies (Buckwalter, 2009; Carr et al, 2010; Cole, Doan, Ballinger, & Brown, 2009; Dowling, Olson, Mish, Kaprakattu, & Gleason, 2012; Tarlow & Mahoney, 2000). Previous research provides recommendations for recruitment (Connell et al, 2001; Dowling & Wiener, 1997; Murphy et al, 2007; Nichols et al, 2004; Shatenstein, Kergoat, & Reid, 2008; Snyder et al, 2009) and enhancing ethnic/racial minority enrollment (Bachman et al, 2009; Gallagher-Thompson et al, 2006; Gallagher-Thompson, Solano, Coon, & Areán, 2003; Gelman, 2010; Hinton et al, 2010; Olin, Dagerman, Fox, Bowers, & Schneider, 2002; Rabinowitz & Gallagher-Thompson, 2010; Souder & Terry, 2009), but these are either for pharmacologic interventions (Carr et al, 2010; Schneider, 2012), or with few exceptions (Tarlow & Mahoney, 2000), have not compared the cost of methods for enrolling community-based dyads into nonpharmacologic dementia studies.…”