Recruitment Strategies for Studying Dementia in Later Life among Diverse Cultural Groups

Dilworth‐Anderson, Peggye; Thaker, Samruddhi; Burke, Joan Maxine Detry

doi:10.1097/01.wad.0000190803.11340.66

Cited by 23 publications

(19 citation statements)

References 15 publications

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“…Similar to other studies, the most common reasons for refusal to participate were: not interested (or denying having memory problems) and conflict with spouse‘s work schedule (Dilworth-Anderson, Thaker, & Detry Burke, 2005; Shatenstein, Kergoat, & Reid, 2008). The DEMA might not be useful to those unwilling to admit any problems, because the DEMA depends on being willing to acknowledge and discuss problems.…”

Section: Discussionmentioning

confidence: 64%

Content Validity and Acceptability of the Daily Enhancement of Meaningful Activity Program

Haase

2011

Journal of Neuroscience Nursing

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Persons with mild cognitive Impairment (PwMCI) are at greater risk for developing Alzheimer’s disease and they experience various difficulties that decrease their quality of life. Very few interventions focus on helping PwMCI improve or maintain functional performance and enhance quality of life through meaningful activity engagement. The purpose of the study was to explore PwMCI and their spouses’ perspectives on the content validity, usefulness, and acceptability of the daily enhancement of meaningful activity (DEMA) program, which included 6 bi-weekly face-to-face sessions, between session assignments, and a self-management tool kit of written educational handouts. Nine PwMCI-care partner dyads participated in three focus groups (PwMCI alone, spouses alone, couples) to capture their perspectives on DEMA. The transcribed focus group data were analyzed through content analysis. The three groups provided support for content validity and acceptability of the program, and they suggested additional content areas important to couples experiencing MCI. They also attested to the usefulness of the tool kit and gave suggestions for its further improvement. The findings provide evidence of the content validity and acceptability of the DEMA program. A pilot study to assess feasibility and preliminary efficacy of the DEMA on health-related outcomes is the recommended next research step for this program.

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Section: Discussionmentioning

confidence: 64%

Content Validity and Acceptability of the Daily Enhancement of Meaningful Activity Program

Haase

2011

Journal of Neuroscience Nursing

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“…Some recommendations that have been made by families of patients with Alzheimer's disease to increase retention in research include providing feedback about the patient's evaluations at each data collection timepoint, increasing public awareness of research opportunities, and sending newsletters to families to help them stay informed on research findings and study updates (Connell, Shaw, Holmes, & Foster, 2001). In addition, strategies that have been used to address barriers in recruitment and retention in dementia research should also be explored, including increased communication, becoming familiar with the community and recruitment sites before beginning recruitment, being flexible with recruitment approaches, and being aware of cultural differences in participants (Dilworth-Anderson, Thaker, & Burke, 2005). Work should also continue to focus on strategies that improve the retention of participants who have cognitive deficits or who have a limited number of years of formal education.…”

Section: Discussionmentioning

confidence: 99%

Understanding Recruitment and Retention in Neurological Research

Newberry

Sherwood

Hricik

et al. 2010

Journal of Neuroscience Nursing

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Cognitive deficits in participants and the abrupt and traumatic way in which many neurological conditions present are two examples of the unique challenges in recruiting and retaining subjects with neurological injury for research studies. The purpose of this investigation was to identify obstacles to recruitment and retention in three ongoing research studies. These studies involve persons with neurological disorders across the continuum of care, from those newly diagnosed and with emergent presentation to those with more established, chronic neurological conditions. For the purpose of this analysis, we evaluated the effectiveness of the strategies employed to improve participation rates. The first study was an NIH funded project designed to identify biomarkers of vasospasm in persons (N=496) with aneurysmal subarachnoid hemorrhage (SAH) who presented to the neurovascular intensive care unit (NINR, RO1 NR004339). The purpose of the second study was to examine bio-behavioral interactions in family caregivers (N=59) of persons with a primary malignant brain tumor (PMBT) recruited in the community setting. The third project involved recruiting persons (N=1019) within an outpatient neurosurgical center to participate in a research registry. To determine differential effectiveness of strategies, consent and attrition rates were calculated at serial points over time in three studies and recruitment and retention strategies were compared. Sentinel time points in participants' disease trajectories played a key role in determining whether those who were approached to participate gave consent and were retained, particularly in the studies involving persons with aneurysmal SAH (consent = 85%; retention = 89%) and persons with PMBTs and their caregivers (consent = 68%; retention = 83%). In addition, several specific recruiter and interviewer training techniques were associated with higher recruitment and retention. Targeted strategies to improve participation rates are vital for neuroscience nurses involved in any aspect of clinical research, including those who conduct studies, assist with data collection, and recruit potential participants. IntroResearch has led to tremendous advances in the field of neuroscience. Basic science research has set the stage for technological, pharmaceutical, and behavioral interventions, which show a great deal of promise in improving the lives of persons with a neurologic disorder. The translation of basic science research to clinical practice, however, is dependent upon studies that are able to recruit and retain participants over time. Unfortunately, recruitment in neurological research is challenging due to potential barriers such as cognitive dysfunction in the participant and the often traumatic onset of neurologic insult. In other areas of health care NIH-PA Author ManuscriptNIH-PA Author Manuscript NIH-PA Author Manuscript research, participants are typically screened for cognitive dysfunction and those that do not meet criteria are excluded from participation. In neuroscie...

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“…39–40 A significant literature exists regarding the need for awareness of the culture, partnership with community leaders, staff who can relate to the population to be recruited, and continued presence in the community in order to be successful. 41 We address some of these points below.…”

Section: Methods To Improve Ad Trial Recruitmentmentioning

confidence: 99%

Facilitating Alzheimer Disease Research Recruitment

Grill

Galvin

2014

Alzheimer Disease &Amp; Associated Disorders

108

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Alzheimer’s disease (AD) research faces challenges to successful enrollment, especially to clinical trials and biomarker studies. Failure to recruit the planned number of participants in a timely fashion threatens the internal validity and success of clinical research, raising concerns about external validity and generalizability of results, and possibly leading to disparities in disease treatment. Methods to improve recruitment exist, but require varying levels of staff effort and financial resources and evidence of effectiveness is often lacking or inconsistent. In this review, we summarize some of the available methods to improve AD research recruitment, the available literature to support or refute these strategies, and some of the experiences at the authors’ AD Research Centers. We discuss the use of community-based participatory research principles and participant registries as a means to enhance research enrollment and increase diversity of research samples.

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Recruitment Strategies for Studying Dementia in Later Life among Diverse Cultural Groups

Cited by 23 publications

References 15 publications

Content Validity and Acceptability of the Daily Enhancement of Meaningful Activity Program

Content Validity and Acceptability of the Daily Enhancement of Meaningful Activity Program

Understanding Recruitment and Retention in Neurological Research

Facilitating Alzheimer Disease Research Recruitment

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