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Recruitment and retention strategies to improve inclusion of family caregivers of African American older adults with dementia in advance care planning research
Author(s) -
Grieff Abigail M,
Moss Karen,
Hurst Laurel Myers,
Wills Celia
Publication year - 2020
Publication title -
alzheimer's and dementia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 6.713
H-Index - 118
eISSN - 1552-5279
pISSN - 1552-5260
DOI - 10.1002/alz.047416
Subject(s) - socioeconomic status , qualitative research , inclusion (mineral) , dementia , gerontology , psychological intervention , family caregivers , research design , medicine , participatory action research , psychology , nursing , medical education , population , sociology , environmental health , disease , social psychology , social science , pathology , anthropology
Background Recruitment and retention approaches for including family caregivers of lower socioeconomic status African American older adults living with dementia for advance care planning research are currently inadequate. Such underrepresented populations often face multiple and suboptimally‐addressed obstacles to research participation. Subsequently, they are less likely than Caucasians to participate in research. Adequate recruitment and retention is essential for the conduct of high quality research to improve communication about advance directives and to achieve improved interventions to better meet the needs of underserved populations. The purpose of this study is to use a participatory design process to assess and develop enhanced approaches to optimize research recruitment and retention strategies for caregivers of lower socioeconomic status African American older adults living with dementia for advance care planning research. Method This qualitative descriptive study uses audio‐recorded telephone interviews conducted with up to 20 current and 20 former caregivers of lower socioeconomic status African American older adults living with dementia who previously participated in at least one research study. Interviews will be conducted with participants that will broadly explore barriers and facilitators to research participation. Audio recordings will be transcribed verbatim. Content analysis will be conducted using qualitative descriptive methods to describe themes that emerge from these data. Transcribed qualitative data will be coded using Dedoose software for qualitative analysis. SPSS software will be used for demographic data analysis. Result We anticipate that study findings will fill essential gaps in existing knowledge about recruitment and retention for advance care planning research participation for caregivers of lower socioeconomic status African American older adults living with dementia. This knowledge will inform changes to improve advance care planning research participation towards receipt of preference‐consistent healthcare and increasing advance directive completion rates. Study results will be provided to participants at study completion. Conclusion Study results will yield insights to increase advance care planning research participation in this population and will be scalable to support recruitment and retention of other underrepresented vulnerable populations for other research studies. This will lead to the use of more culturally‐tailored approaches to research recruitment and retention to increase research participation by people from diverse backgrounds.