Leveraging Existing Datasets to Advance Family Caregiving Research: Opportunities to Measure What Matters

Rebecca M. Goodwin; Rebecca L. Utz; Catherine E. Elmore; Katherine A. Ornstein; Djin L. Tay; Lee Ellington; Ken R. Smith; Caroline E. Stephens

doi:10.1080/08959420.2024.2320043

Leveraging Existing Datasets to Advance Family Caregiving Research: Opportunities to Measure What Matters

Rebecca M. Goodwin, Rebecca L. Utz, Catherine E. Elmore, Katherine A. Ornstein, Djin L. Tay, Lee Ellington, Ken R. Smith, Caroline E. Stephens

Research output: Contribution to journal › Comment/debate

1 Scopus citations

Abstract

More than 17.7 million people in the U.S. care for older adults. Analyzing population datasets can increase our understanding of the needs of family caregivers of older adults. We reviewed 14 U.S. population-based datasets (2003–2023) including older adults’ and caregivers’ data to assess inclusion and measurement of 8 caregiving science domains, with a focus on whether measures were validated and/or unique variables were used. Challenges exist related to survey design, sampling, and measurement. Findings highlight the need for consistent data collection by researchers, state, tribal, local, and federal programs, for improved utility of population-based datasets for caregiving and aging research.

Original language	English
Pages (from-to)	562-580
Number of pages	19
Journal	Journal of Aging and Social Policy
Volume	36
Issue number	4
DOIs	https://doi.org/10.1080/08959420.2024.2320043
State	Published - 2024
Externally published	Yes

Keywords

Big data
caregiver
family
health equity
long-term services and supports
older adult
population data
secondary data
social determinants of health

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10.1080/08959420.2024.2320043

Cite this

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title = "Leveraging Existing Datasets to Advance Family Caregiving Research: Opportunities to Measure What Matters",

abstract = "More than 17.7 million people in the U.S. care for older adults. Analyzing population datasets can increase our understanding of the needs of family caregivers of older adults. We reviewed 14 U.S. population-based datasets (2003–2023) including older adults{\textquoteright} and caregivers{\textquoteright} data to assess inclusion and measurement of 8 caregiving science domains, with a focus on whether measures were validated and/or unique variables were used. Challenges exist related to survey design, sampling, and measurement. Findings highlight the need for consistent data collection by researchers, state, tribal, local, and federal programs, for improved utility of population-based datasets for caregiving and aging research.",

keywords = "Big data, caregiver, family, health equity, long-term services and supports, older adult, population data, secondary data, social determinants of health",

author = "Goodwin, {Rebecca M.} and Utz, {Rebecca L.} and Elmore, {Catherine E.} and Ornstein, {Katherine A.} and Tay, {Djin L.} and Lee Ellington and Smith, {Ken R.} and Stephens, {Caroline E.}",

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year = "2024",

doi = "10.1080/08959420.2024.2320043",

language = "English",

volume = "36",

pages = "562--580",

journal = "Journal of Aging and Social Policy",

issn = "0895-9420",

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number = "4",

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T1 - Leveraging Existing Datasets to Advance Family Caregiving Research

T2 - Opportunities to Measure What Matters

AU - Goodwin, Rebecca M.

AU - Utz, Rebecca L.

AU - Elmore, Catherine E.

AU - Ornstein, Katherine A.

AU - Tay, Djin L.

AU - Ellington, Lee

AU - Smith, Ken R.

AU - Stephens, Caroline E.

PY - 2024

Y1 - 2024

N2 - More than 17.7 million people in the U.S. care for older adults. Analyzing population datasets can increase our understanding of the needs of family caregivers of older adults. We reviewed 14 U.S. population-based datasets (2003–2023) including older adults’ and caregivers’ data to assess inclusion and measurement of 8 caregiving science domains, with a focus on whether measures were validated and/or unique variables were used. Challenges exist related to survey design, sampling, and measurement. Findings highlight the need for consistent data collection by researchers, state, tribal, local, and federal programs, for improved utility of population-based datasets for caregiving and aging research.

AB - More than 17.7 million people in the U.S. care for older adults. Analyzing population datasets can increase our understanding of the needs of family caregivers of older adults. We reviewed 14 U.S. population-based datasets (2003–2023) including older adults’ and caregivers’ data to assess inclusion and measurement of 8 caregiving science domains, with a focus on whether measures were validated and/or unique variables were used. Challenges exist related to survey design, sampling, and measurement. Findings highlight the need for consistent data collection by researchers, state, tribal, local, and federal programs, for improved utility of population-based datasets for caregiving and aging research.

KW - Big data

KW - caregiver

KW - family

KW - health equity

KW - long-term services and supports

KW - older adult

KW - population data

KW - secondary data

KW - social determinants of health

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U2 - 10.1080/08959420.2024.2320043

DO - 10.1080/08959420.2024.2320043

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AN - SCOPUS:85190972720

SN - 0895-9420

VL - 36

SP - 562

EP - 580

JO - Journal of Aging and Social Policy

JF - Journal of Aging and Social Policy

IS - 4

ER -

Leveraging Existing Datasets to Advance Family Caregiving Research: Opportunities to Measure What Matters

Abstract

Keywords

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