TY - JOUR
T1 - Development and Validation of a Community Assessment Survey for Diverse Rural Family Caregivers of People with Alzheimer Disease and Related Dementias
AU - McCarthy, Michael J.
AU - Hustead, Morgan Lee Regalado
AU - Bacon, Rachel
AU - Evie Garcia, Y.
AU - Dunn, Dorothy J.
AU - Williamson, Heather J.
AU - Baldwin, Julie
N1 - Funding Information:
Author Affiliations: Departments of Social Work, College of Social and Behavioral Sciences (Dr McCarthy), Educational Psychology, College of Education (Ms Lee-Regalado Hustead and Dr Garcia), and Occupational Therapy (Dr Williamson) and Health Sciences (Dr Baldwin), Center for Health Equity Research, Northern Arizona University, Flagstaff; Center for Health Equity Research (Dr Bacon), Northern Arizona University, Flagstaff; and School of Nursing, College of Health & Human Services (Dr Dunn), Northern Arizona University, Flagstaff. The authors thank Dr Heidi Wayment for her assistance with this study and to the expert panel members for the valuable feedback they provided. They also thank the community organizations with whom they have partnered on this project who generously provided their time and support. This work was supported by the National Institute on Minority Health and Health Disparities - NIH under grant number U54MD012388. The authors have no disclosures to make, financial or otherwise, relevant to this submission. Correspondence: Michael J. McCarthy, PhD, Department of Social Work, College of Social and Behavioral Sciences, Northern Arizona University, PO Box 15350, Flagstaff, AZ 86011 (michael.j.mccarthy@nau.edu). Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved. DOI: 10.1097/FCH.0000000000000297
Publisher Copyright:
Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.
PY - 2021/7
Y1 - 2021/7
N2 - Many individuals with Alzheimer disease and related dementias receive care from family members and friends. Rurality adds increased complexity to care, especially for diverse caregivers. This study details the development and content validation process for a community assessment survey for rural white, Latinx, and American Indian/Alaska Native Alzheimer disease and related dementias caregivers. Foundational survey items were based upon instruments validated with diverse rural caregivers. A modified Delphi process (2 rounds) was used to refine items. The process concluded when 75%+ of experts agreed that the survey was (1) inclusive of different cultural groups; (2) respectful of cultural values and norms; (3) comprehensive with respect to needs, assets, and resources, and (4) relevant to the experiences of diverse rural caregivers. Round 1 of the process (N = 9 panelists) resulted in the elimination of 2 survey sections, a greater focus on issues including transportation and roles of extended family members, and the inclusion of open-ended questions. Round 2 (N = 6 panelists) resulted in further improvements, particularly to the sections about cultural customs, beliefs, and traditions and interactions with health care and other providers. Benefits of the process included raising awareness about rural caregiving issues and maximizing data quality. Challenges included honoring the diversity of respondents’ opinions and balancing research rigor with community utility. This community assessment survey may help researchers better understand the needs and culturally–based strengths of diverse rural family caregivers.
AB - Many individuals with Alzheimer disease and related dementias receive care from family members and friends. Rurality adds increased complexity to care, especially for diverse caregivers. This study details the development and content validation process for a community assessment survey for rural white, Latinx, and American Indian/Alaska Native Alzheimer disease and related dementias caregivers. Foundational survey items were based upon instruments validated with diverse rural caregivers. A modified Delphi process (2 rounds) was used to refine items. The process concluded when 75%+ of experts agreed that the survey was (1) inclusive of different cultural groups; (2) respectful of cultural values and norms; (3) comprehensive with respect to needs, assets, and resources, and (4) relevant to the experiences of diverse rural caregivers. Round 1 of the process (N = 9 panelists) resulted in the elimination of 2 survey sections, a greater focus on issues including transportation and roles of extended family members, and the inclusion of open-ended questions. Round 2 (N = 6 panelists) resulted in further improvements, particularly to the sections about cultural customs, beliefs, and traditions and interactions with health care and other providers. Benefits of the process included raising awareness about rural caregiving issues and maximizing data quality. Challenges included honoring the diversity of respondents’ opinions and balancing research rigor with community utility. This community assessment survey may help researchers better understand the needs and culturally–based strengths of diverse rural family caregivers.
KW - Alzheimer disease
KW - American Indian/Alaska Native
KW - Dementia
KW - Latinx
KW - Rural
UR - http://www.scopus.com/inward/record.url?scp=85106668312&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85106668312&partnerID=8YFLogxK
U2 - 10.1097/FCH.0000000000000297
DO - 10.1097/FCH.0000000000000297
M3 - Article
C2 - 33646980
AN - SCOPUS:85106668312
SN - 0160-6379
VL - 44
SP - 126
EP - 135
JO - Family and Community Health
JF - Family and Community Health
IS - 3
ER -