Advanced search
Publication Cover
Journal of Aging & Social Policy Volume 36, 2024 - Issue 4: Special Issue: Advances in Family Caregiving Policy
Submit an article Journal homepage
159
Views
0
CrossRef citations to date
0
Altmetric
Special Issue Articles

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

Rebecca M. Goodwina College of Nursing, University of Utah, Salt Lake City, USA;b National Library of Medicine, National Institutes of Health, Bethesda, USACorrespondence[email protected]
ORCID Iconhttps://orcid.org/0000-0001-8792-8845View further author information
ORCID Icon,
Rebecca L. Utzc College of Social and Behavioral Science, University of Utah, Salt Lake City, USA;d Consortium for Families & Health Research, University of Utah, Salt Lake City, USA;e Family and Consumer Studies, University of Utah, Salt Lake City, USA;f Center on Aging, University of Utah, Salt Lake City, USA;g Family Caregiving Collaborative – Utah Caregiving Population Science, University of Utah, Salt Lake City, USAORCID Iconhttps://orcid.org/0000-0001-7734-7676View further author information
ORCID Icon,
Catherine E. Elmorea College of Nursing, University of Utah, Salt Lake City, USAORCID Iconhttps://orcid.org/0000-0002-5908-8727View further author information
ORCID Icon,
Katherine A. Ornsteinh Center for Equity in Aging, Johns Hopkins University, Baltimore, USAORCID Iconhttps://orcid.org/0000-0001-6270-4423View further author information
ORCID Icon,
Djin L. Taya College of Nursing, University of Utah, Salt Lake City, USA;c College of Social and Behavioral Science, University of Utah, Salt Lake City, USA;e Family and Consumer Studies, University of Utah, Salt Lake City, USA;i Huntsman Cancer Institute, University of Utah, Salt Lake City, USAORCID Iconhttps://orcid.org/0000-0001-5247-0010View further author information
ORCID Icon,
Lee Ellingtona College of Nursing, University of Utah, Salt Lake City, USA;d Consortium for Families & Health Research, University of Utah, Salt Lake City, USA;f Center on Aging, University of Utah, Salt Lake City, USA;g Family Caregiving Collaborative – Utah Caregiving Population Science, University of Utah, Salt Lake City, USAView further author information
,
Ken R. Smithc College of Social and Behavioral Science, University of Utah, Salt Lake City, USA;e Family and Consumer Studies, University of Utah, Salt Lake City, USA;g Family Caregiving Collaborative – Utah Caregiving Population Science, University of Utah, Salt Lake City, USA;i Huntsman Cancer Institute, University of Utah, Salt Lake City, USAORCID Iconhttps://orcid.org/0000-0003-0682-3705View further author information
ORCID Icon &
Caroline E. Stephensa College of Nursing, University of Utah, Salt Lake City, USA;d Consortium for Families & Health Research, University of Utah, Salt Lake City, USA;f Center on Aging, University of Utah, Salt Lake City, USA;g Family Caregiving Collaborative – Utah Caregiving Population Science, University of Utah, Salt Lake City, USAORCID Iconhttps://orcid.org/0009-0009-9814-4654View further author information
ORCID Icon show all
Pages 562-580 | Received 02 May 2023, Accepted 17 Nov 2023, Published online: 16 Apr 2024

References

  • AARP & National Alliance for Caregiving. (2020). Caregiving in the United States 2020. https://www.aarp.org/pri/topics/ltss/family-caregiving/caregiving-in-the-united-states/
  • Albright, D. L., Washington, K., Parker-Oliver, D., Lewis, A., Kruse, R. L., & Demiris, G. (2016). The social convoy for family caregivers over the course of hospice. Journal of Pain and Symptom Management, 51(2), 213–219. https://doi.org/10.1016/j.jpainsymman.2015.09.005
  • American Psychological Association. (2011). Zarit Burden interview. American Psychological Association. https://www.apa.org/pi/about/publications/caregivers/practice-settings/assessment/tools/zarit
  • Amjad, H., Mulcahy, J., Kasper, J. D., Burgdorf, J., Roth, D. L., Covinsky, K., & Wolff, J. L. (2021). Do caregiving factors affect hospitalization risk among disabled older adults? Journal of the American Geriatrics Society, 69(1), 129–139. https://doi.org/10.1111/jgs.16817
  • ARCHANGELS. (n.d.). Caregiver intensity index. https://www.archangels.me/
  • Bauer, J. M., & Sousa-Poza, A. (2015). Impacts of informal caregiving on caregiver employment, health, and family. Journal of Population Ageing, 8(3), 113–145. https://doi.org/10.1007/s12062-015-9116-0
  • Berg, C. A., Kelly, C. S., & Utz, R. L. (2021). Family care exchanges across the life span. In K. W. Schaie & S. L. Willis (Eds.), Handbook of the psychology of aging (pp. 263–274). Academic Press.
  • Bjelland, I., Dahl, A. A., Haug, T. T., & Neckelmann, D. (2002). The validity of the Hospital Anxiety and Depression Scale: An updated literature review. Journal of Psychosomatic Research, 52(2), 69–77. https://doi.org/10.1016/s0022-3999(01)00296-3
  • Boyd, R. W., Lindo, E. G., Weeks, L. D., & McLemore, M. R. (2020). On racism: A new standard for publishing on racial health inequities. Health Affairs (Project Hope). https://doi.org/10.1377/forefront.20200630.939347
  • Brayne, C., & Moffitt, T. E. (2022). The limitations of large-scale volunteer databases to address inequalities and global challenges in health and aging. Nature Aging, 2(9), 775–783. https://doi.org/10.1038/s43587-022-00277-x
  • Broese van Groenou, M. I., de Boer, A., & Iedema, J. (2013). Positive and negative evaluation of caregiving among three different types of informal care relationships. European Journal of Ageing, 10(4), 301–311. https://doi.org/10.1007/s10433-013-0276-6
  • Brooks, R.(1996). EuroQol: The current state of play. Health Policy, 37(1), 53–72. https://doi.org/10.1016/0168-8510(96)00822-6
  • Centers for Disease Control and Prevention (CDC). (2018). Caregiving for family and friends: A public health issue. https://www.cdc.gov/aging/caregiving/caregiver-brief.html
  • Charlson, M. E., Carrozzino, D., Guidi, J., & Patierno, C.(2022). Charlson comorbidity index: A critical review of clinimetric properties. Psychotherapy & Psychosomatics, 91(1), 8–35. https://doi.org/10.1159/000521288
  • Committee on Family Caregiving for Older Adults, Board on Health Care Services, Health and Medicine Division, & National Academies of Sciences, Engineering, and Medicine. (2016). Families caring for an aging America In R. Schulz & J. Eden, (Eds.), National Academies Press (US). https://doi.org/10.17226/23606
  • Congressional Research Service (CRS). (2018). Who pays for long-term services and supports?. United States Government.
  • Crouch, E., Probst, J., & Bennett, K. (2017). Rural-urban differences in unpaid caregivers of adults. Rural and Remote Health, 17(4), 4351. https://doi.org/10.22605/RRH4351
  • Douglas, S. L., Mazanec, P., Lipson, A., & Leuchtag, M. (2016). Distance caregiving a family member with cancer: A review of the literature on distance caregiving and recommendations for future research. World Journal of Clinical Oncology, 7(2), 214–219. https://doi.org/10.5306/wjco.v7.i2.214
  • Edwards, V. J., Bouldin, E. D., Taylor, C. A., Olivari, B. S., & McGuire, L. C. (2020). Characteristics and health status of informal unpaid caregivers - 44 states, District of Columbia, and Puerto rico, 2015-2017. MMWR. Morbidity and Mortality Weekly Report, 69(7), 183–188. https://doi.org/10.15585/mmwr.mm6907a2
  • Fabius, C. D., & Parker, L. J. (2023). Paid help and caregiving experiences of black caregivers of community-dwelling older adults. Clinical Gerontologist, 46(1), 91–100. https://doi.org/10.1080/07317115.2022.2099776
  • Feldman, S. J., Solway, E., Kirch, M., Malani, P., Singer, D., & Roberts, J. S.(2021). Correlates of formal support service use among dementia caregivers. Journal of Gerontological Social Work, 64(2), 135–150. https://doi.org/10.1080/01634372.2020.1816589
  • Fox-Grage, W. (2020). Inventory of key family caregiver recommendations. National Academy for State Health Policy (NASHP).
  • Freedman, V. A., Crimmins, E., Schoeni, R. F., Spillman, B. C., Aykan, H., Kramarow, E., Land, K., Lubitz, J., Manton, K., Martin, L. G., Shinberg, D., & Waidmann, T. (2004). Resolving inconsistencies in trends in old-age disability: Report from a technical working group. Demography, 41(3), 417–441. https://doi.org/10.1353/dem.2004.0022
  • Galvin, J. E., Tolea, M. I., & Chrisphonte, S. (2020). The positive and negative appraisals of caregiving (PANAC) scale: A new measure to examine the caregiving experience in Alzheimer’s disease and related dementias. Alzheimer’s & Dementia: Translational Research & Clinical Interventions, 6(1), e12104. https://doi.org/10.1002/trc2.12104
  • Giovannetti, E. R., & Wolff, J. L. (2010). Cross-survey differences in national estimates of numbers of caregivers of disabled older adults. The Milbank Quarterly, 88(3), 310–349. https://doi.org/10.1111/j.1468-0009.2010.00602.x
  • Given, C. W., Given, B., Stommel, M., Collins, C., King, S., & Franklin, S. (1992). The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Research in Nursing & Health, 15(4), 271–283. https://doi.org/10.1002/nur.4770150406
  • Griffin, J. M., Kaufman, B. G., Bangerter, L., Holland, D. E., Vanderboom, C. E., Ingram, C., Wild, E. M., Dose, A. M., Stiles, C., & Thompson, V. H. (2022). Improving transitions in care for patients and family caregivers living in rural and underserved areas: The caregiver advise, record, enable (CARE) act. Journal of Aging & Social Policy, 1–8. https://doi.org/10.1080/08959420.2022.2029272
  • Hollingshaus, M., Smith, K., Meeks, H., Ornstein, K., Iacob, E., Tay, D., Stephens, C., & Utz, R. (2024). Mortality risk following end-of-life caregiving: A Population-Based Analysis of Hospice Users and their families. Social Science & Medicine.
  • Keita Fakeye, M. B., Samuel, L. J., Drabo, E. F., Bandeen-Roche, K., & Wolff, J. L. (2023). Caregiving-related work productivity loss among employed family and other unpaid caregivers of older adults. Value in Health: The Journal of the International Society for Pharmacoeconomics and Outcomes Research, 26(5), 712–720. https://doi.org/10.1016/j.jval.2022.06.014
  • Kent, E. E., Mollica, M. A., Dionne-Odom, J. N., Ferrer, R. A., Jensen, R. E., Ornstein, K. A., & Smith, A. W. (2020). Effect of instrumental support on distress among family caregivers: Findings from a nationally representative study. Palliative & supportive care, 18(5), 519–527. https://doi.org/10.1017/S1478951520000036
  • Kindratt, T. B. (2022). Big data for epidemiology: Applied data analysis using national health surveys. Mavs Open Press.
  • Koehly, L. M., Ashida, S., Schafer, E. J., & Ludden, A. (2015). Caregiving networks —using a network approach to identify missed opportunities. The Journals of Gerontology, Series B, Psychological Sciences and Social Sciences, 70(1), 143–154. https://doi.org/10.1093/geronb/gbu111
  • Kristensen, M. S., Thygesen, L. C., Tay, D. L., Kumar, R., Grønvold, M., Aldridge, M., & Ornstein, K. A. (2021). Size and composition of family networks of decedents: A nationwide register-based study. Palliative Medicine, 35(9), 1652–1662. https://doi.org/10.1177/0269216321998602
  • Kroenke, K., Spitzer, R. L., & Williams, J. B.(2001). The PHQ-9: Validity of a brief depression severity measure. Journal of General Internal Medicine, 16(9), 606–613. https://doi.org/10.1046/j.1525-1497.2001.016009606.x
  • Leighton, C., Fields, B., Rodakowski, J. L., Feiler, C., Hawk, M., Bellon, J. E., James, A. E., & Meeks, S. (2020). A multisite case study of caregiver advise, record, enable act implementation. The Gerontologist, 60(4), 776–786. https://doi.org/10.1093/geront/gnz011
  • Levitsky, S. R. (2014). Caring for our own: Why there is no political demand for American social welfare rights. Oxford University Press.
  • Litzelman, K., Witt, W. P., Gangnon, R. E., Nieto, F. J., Engelman, C. D., Mailick, M. R., & Skinner, H. G. (2014). Association between informal caregiving and cellular aging in the survey of the health of Wisconsin: The role of caregiving characteristics, stress, and strain. American Journal of Epidemiology, 179(11), 1340–1352. https://doi.org/10.1093/aje/kwu066
  • Löwe, B., Decker, O., Müller, S., Brähler, E., Schellberg, D., Herzog, W. & Herzberg, P. Y.(2008). Validation and standardization of the generalized anxiety disorder screener (GAD-7) in the general population. Medical Care, 46(3), 266–274. https://doi.org/10.1097/MLR.0b013e318160d093
  • Lowers, J., Zhao, D., Bollens-Lund, E., Kavalieratos, D., & Ornstein, K. A. (2023). Solo but not alone: An examination of social and help networks among community-dwelling older adults without close family. Journal of Applied Gerontology: The Official Journal of the Southern Gerontological Society, 42(3), 419–426. https://doi.org/10.1177/07334648221135588
  • Marani, H. (2021). Limitations in representative sampling of unpaid caregivers from minority ethnocultural backgrounds in a population-based survey. BMC Research Notes, 14(1), 357. https://doi.org/10.1186/s13104-021-05775-6
  • Marino, V. R., Haley, W. E., & Roth, D. L. (2017). Beyond hedonia: A theoretical reframing of caregiver well-being. Translational Issues in Psychological Science, 3(4), 400–409. https://doi.org/10.1037/tps0000134
  • Martin, M. P., McEntee, M. L., & Suri, Y. (2021). Caregiver quality of life: How to measure it and why. American Journal of Health Promotion, 35(7), 1042–1045. https://doi.org/10.1177/08901171211030142f
  • Martire, L. M., Zhaoyang, R., Marini, C. M., & Nah, S.(2022). Dyadic links between health changes and well-being: The role of non-spousal confidants. Journal of Social & Personal Relationships, 39(8), 2617–2638. https://doi.org/10.1177/02654075221086509
  • Mellins, C. A., Blum, M. J., Boyd-Davis, S. L., & Gatz, M. (1993). Family network perspectives on caregiving. Generations: Journal of the American Society on Aging, 17(1), 21–24. https://www.jstor.org/stable/44877146
  • Meyer, K., Zachmeyer, M., Paccione, J., Cardenas, C., Zernial, C., & Smith, C. (2023). A community initiative to engage employers to support caregiving employees and build an advocacy alliance. Journal of Aging & Social Policy, 1–15. https://doi.org/10.1080/08959420.2023.2226340
  • Miller, K. E. M., Ornstein, K. A., & Coe, N. B. (2023). Rural disparities in use of family and formal caregiving for older adults with disabilities. Journal of the American Geriatrics Society. https://doi.org/10.1111/jgs.18376
  • Moorman, S. M. (2011). Older adults’ preferences for independent or delegated end-of-life medical decision making. Journal of Aging & Health, 23(1), 135–157. https://doi.org/10.1177/0898264310385114
  • Mudrazija, S. (2019). Work-related opportunity costs of providing unpaid family care in 2013 and 2050. Health Affairs, 38(6), 1003–1010. https://doi.org/10.1377/hlthaff.2019.00008
  • National Institutes of Health (NIH). (2023). Scientific Data Sharing. https://sharing.nih.gov/
  • Parr, L. C., & Mielenz, T. J.(2023). Correlates of caregiver well-being: The national study of caregivers. Frontiers in Public Health, 10, 1059164. https://doi.org/10.3389/fpubh.2022.1059164
  • Ponce, N. A., Shimkhada, R., & Adkins‐Jackson, P. B. (2023). Making communities more visible: Equity‐centered data to achieve health equity. The Milbank Quarterly, 101(S1), 302–332. https://doi.org/10.1111/1468-0009.12605
  • Pruchno, R. A., Brill, J. E., Shands, Y., Gordon, J. R., Genderson, M. W., Rose, M., & Cartwright, F. (2008). Convenience samples and caregiving research: How generalizable are the findings? The Gerontologist, 48(6), 820–827. https://doi.org/10.1093/geront/48.6.820
  • Pysklywec, A., Plante, M., Auger, C., Mortenson, W. B., Eales, J., Routhier, F., & Demers, L. (2020). The positive effects of caring for family carers of older adults: A scoping review. International Journal of Care and Caring, 4(3), 349–375. https://doi.org/10.1332/239788220X15925902138734
  • RAISE Family Caregiving Advisory Council & The Advisory Council to Support Grandparents Raising Grandchildren. (2022). 2022 National Strategy to Support Family Caregivers. https://acl.gov/CaregiverStrategy
  • Reinhard, S. C., Caldera, S., Houser, A., & Choula, R. (2023). Valuing the invaluable: 2023 update. AARP. https://doi.org/10.26419/ppi.00082.006
  • Rocco, P. (2017). Informal caregiving and the politics of policy drift in the United States. Journal of Aging & Social Policy, 29(5), 413–432. https://doi.org/10.1080/08959420.2017.1280748
  • Rote, S. M., Angel, J. L., Moon, H., & Markides, K. (2019). Caregiving across diverse populations: New evidence from the national study of caregiving and hispanic EPESE. Innovation in Aging, 3(2), igz033. https://doi.org/10.1093/geroni/igz033
  • Schulz, R., Beach, S. R., Czaja, S. J., Martire, L. M., & Monin, J. K. (2020). Family caregiving for older adults. Annual Review of Psychology, 71(1), 635–659. https://doi.org/10.1146/annurev-psych-010419-050754
  • Smaling, H. J., Joling, K. J., Achterberg, W. P., Francke, A. L., & van der Steen, J. T. (2021). Measuring positive caregiving experiences in family caregivers of nursing home residents: A comparison of the positive experiences scale, gain in alzheimer care INstrument, and positive aspects of caregiving questionnaire. Geriatrics & Gerontology International, 21(8), 636–643. https://doi.org/10.1111/ggi.14210
  • Smith, K. R., Fraser, A., Reed, D. L., Barlow, J., Hanson, H. A., West, J., Knight, S., Forsythe, N., & Mineau, G. P. (2022). The Utah population database: A model for linking medical and genealogical records for population health research. Historical Life Course Studies, 12, 58–77. https://doi.org/10.51964/hlcs11681
  • Stephens, C. E., Tay, D. L., Iacob, E., Hollingshaus, M., Goodwin, R. M., Kelly, B., Smith, K. R., Ellington, L., Utz, R. L., & Ornstein, K. A. (2023). Family ties at end-of-life: Characteristics of nursing home decedents with and without family. Palliative Medicine Reports, 4(1), 308–315. https://doi.org/10.1089/pmr.2023.0023
  • Stephens, C. E., Utz, R., Tay, D., Iacob, E., Hollingshaus, M., Goodwin, R., Farrell, T. W., Bouldin, E., Edelman, L., Reinke, L. F., Smith, K., Ellington, L., & Ornstein, K. (2024). Dying with dementia in nursing homes: A Population-based study of decedents and their families. Journal of the American Geriatrics Society. Epub ahead of print. https://doi.org/10.1111/jgs.18770
  • Stites, S. D., Gurian, A., Coykendall, C., Largent, E. A., Harkins, K., Karlawish, J., & Coe, N. B.(2023). Gender of study partners and research participants associated with differences in study partner ratings of cognition and activity level. Journals of Gerontology, Series B: Psychological Sciences & Social Sciences. https://doi.org/10.1093/geronb/gbad026
  • Stokes, J. E., & Patterson, S. E. (2022). Caregiving and self-esteem in mid and later life: Is there variation by age, parental status, and gender?. International Journal of Aging & Human Development, 914150221128976. https://doi.org/10.1177/00914150221128976
  • Tarlow, B. J., Wisniewski, S. R., Belle, S. H., Rubert, M., Ory, M. G., & Gallagher-Thompson, D.(2004). Positive aspects of caregiving: Contributions of the REACH project to the development of new measures for Alzheimer’s caregiving. Research on Aging, 26(4), 429–453. https://doi.org/10.1177/0164027504264493
  • Tay, D. L., Ornstein, K. A., Meeks, H., Utz, R. L., Smith, K. R., Stephens, C., Hashibe, M., & Ellington, L. (2022). Evaluation of family characteristics and multiple hospitalizations at the end of life: Evidence from the Utah population database. Journal of Palliative Medicine, 25(3), 376–387. https://doi.org/10.1089/jpm.2021.0071
  • Thornton, M., & Travis, S. S.(2003). Analysis of the reliability of the modified caregiver strain index. Journals of Gerontology, Series B: Psychological Sciences & Social Sciences, 58(2), S127–32. https://doi.org/10.1093/geronb/58.2.S127
  • van Exel, N. J. A., Brouwer, W. B. F., van den Berg, B., Koopmanschap, M. A., & van den Bos, G. A. M.(2004). What really matters: An inquiry into the relative importance of dimensions of informal caregiver burden. Clinical rehabilitation, 18(6), 683–693. https://doi.org/10.1191/0269215504cr743oa
  • Zarit, S. H., Reever, K. E., & Back-Peterson, J.(1980). Relatives of the impaired elderly: Correlates of feelings of burden. The Gerontologist, 20, 649–655.
  • Zhang, X., Pérez-Stable, E. J., Bourne, P. E., Peprah, E., Duru, O. K., Breen, N., Berrigan, D., Wood, F., Jackson, J. S., Wong, D. W. S., & Denny, J. (2017). Big data science: Opportunities and challenges to address minority health and health disparities in the 21st century. Ethnicity & Disease, 27(2), 95–106. https://doi.org/10.18865/ed.27.2.95

Related research

People also read lists articles that other readers of this article have read.

Recommended articles lists articles that we recommend and is powered by our AI driven recommendation engine.

Cited by lists all citing articles based on Crossref citations.
Articles with the Crossref icon will open in a new tab.