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Abstract

This mixed-methods study examined the health information-seeking behavior of Latino caregivers of people living with dementia. A structured survey and semi-structured interviews were conducted with 21 Latino caregivers in Los Angeles, California. For triangulation, semi-structured interviews were also conducted with six healthcare and social service providers. The interview transcripts were coded and analyzed via thematic analysis, while the survey data were summarized using descriptive statistics. The results show that caregivers sought information on what changes to expect as dementia progresses. Some desired detailed (limited) information to be better prepared (to worry less). The most common action to address their information needs was searching the Internet. However, those who did this tended to be concerned about the quality of information. Overall, this study sheds light on how much detail Latino caregivers desire in the information they need and the actions they take to obtain this information.

Keywords

information needs information barriers dementia caregiving qualitative analysis Hispanic Americans

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References

Allen

Cain

Meyer

(2018). Seeking relational information sources in the digital age: A study into information source preferences amongst family and friends of those with dementia. Dementia. https://doi.org/10.1177/1471301218786568

Beyene

Becker

G. A. Y.

Mayen

(2002). Perception of aging and sense of well-being among Latino elderly. Journal of Cross-Cultural Gerontology, 17(2), 155–172. https://doi.org/10.1023/A:1015886816483

Black

B. S.

Johnston

Rabins

P. V.

Morrison

Lyketsos

Samus

Q. M.

(2013). Unmet needs of community-residing persons with dementia and their informal caregivers: Findings from the maximizing independence at home study. Journal of the American Geriatrics Society, 61(12), 2087–2095. https://doi.org/10.1111/jgs.12549

Braun

Clarke

(2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa, http://www.tandfonline.com/action/journalInformation?journalCode=uqrp20%5Cnhttp://www.tandfonline.com/action/journalInformation?journalCode=uqrp20

Bruening

Sperber

Miller

Andrews

Steinhauser

Wieland

G. D.

Lindquist

Shepherd-Banigan

Ramos

Henius

Kabat

Van Houtven

(2020). Connecting caregivers to support: Lessons learned from the VA caregiver support program. Journal of Applied Gerontology: The Official Journal of the Southern Gerontological Society, 39(4), 368–376. https://doi.org/10.1177/0733464818825050

Butow

P. N.

Maclean

Dunn

S. M.

Tattersall

M. H. N.

Boyer

M. J.

(1997). The dynamics of change: Cancer patients’ preferences for information, involvement and support. Annals of Oncology: Official Journal of the European Society for Medical Oncology, 8(9), 857–863, https://doi.org/10.1023/a:1008284006045

Cabrera

L. Y.

Parker

Vega

I. E.

(2021). Knowledge and attitudes of two latino groups about alzheimer disease: A qualitative study. Journal of Cross-Cultural Gerontology, 36(3), 265–284. https://doi.org/10.1007/s10823-021-09432-0

Callahan

C. M.

Arling

Rosenman

M. B.

Counsell

S. R.

Stump

T. E.

Hendrie

H. C.

(2012). Transitions in care for older adults with and without dementia. Journal of the American Geriatrics Society, 60(5), 813–820. https://doi.org/10.1111/j.1532-5415.2012.03905.x

Ford

Wilson

T. D.

Foster

Ellis

Spink

(2002). Information seeking and mediated searching, Part 4: Cognitive styles in information seeking. Journal of the American Society for Information Science and Technology, 53(9), 728–735, https://doi.org/10.1002/asi.10084

10.

Friedman

E. M.

Shih

R. A.

Langa

K. M.

Hurd

M. D.

(2015). US prevalence and predictors of informal caregiving for dementia. Health Affairs, 34(10), 1637–1641. https://doi.org/10.1377/hlthaff.2015.0510

11.

Friis

L. S.

Elverdam

B. E.

Schmidt

K. G.

(2003). The patient's perspective: A qualitative study of acute myeloid leukaemia patients' need for information and their information-seeking behaviour. Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer, 11(3), 162–170, https://doi.org/10.1007/s00520-002-0424-6

12.

Fripp

J. A.

Carlson

R. G.

(2017). Exploring the influence of attitude and stigma on participation of african American and latino populations in mental health services. Journal of Multicultural Counseling and Development, 45(2), 80–94. https://doi.org/10.1002/jmcd.12066

13.

Gallagher-Thompson

Leary

M. C.

Ossinalde

Romero

J. J.

Wald

M. J.

Fernandez-Gamarra

(1997). Hispanic caregivers of older adults with dementia: Cultural issues in outreach and intervention. Group, 21(2), 211–232, https://doi.org/10.1007/bf02872747

14.

Gilhooly

K. J.

Gilhooly

M. L. M.

Sullivan

M. P.

McIntyre

Wilson

Harding

Woodbridge

Crutch

(2016). A meta-review of stress, coping and interventions in dementia and dementia caregiving. BMC Geriatrics, 16(1), 106–108. https://doi.org/10.1186/s12877-016-0280-8

15.

Gillespie

R. J.

Harrison

Mullan

(2015). Medication management concerns of ethnic minority family caregivers of people living with dementia. Dementia, 14(1), 47–62. https://doi.org/10.1177/1471301213488900

16.

Hack

T. F.

Degner

L. F.

Dyck

D. G.

(1994). Relationship between preferences for decisional control and illness information among women with breast cancer: A quantitative and qualitative analysis. Social Science & Medicine (1982), 39(2), 279–289, https://doi.org/10.1016/0277-9536(94)90336-0

17.

Hodgson

Gitlin

L. N.

Winter

Hauck

W. W.

(2014). Caregiver’s perceptions of the relationship of pain to behavioral and psychiatric symptoms in older community residing adults with dementia. The Clinical Journal of Pain, 30(5), 421. 427, https://doi.org/10.1097/AJP.0000000000000018

18.

Iribarren

Stonbraker

Suero-Tejeda

Granja

Luchsinger

J. A.

Mittelman

Bakken

Lucero

(2019). Information, communication, and online tool needs of Hispanic family caregivers of individuals with Alzheimer’s disease and related dementias. Informatics for Health & Social Care, 44(2), 115–134. https://doi.org/10.1080/17538157.2018.1433674

19.

Lambert

S. D.

Loiselle

C. G.

(2007). Health information seeking behavior. Qualitative Health Research, 17(8), 1006–1019. https://doi.org/10.1177/1049732307305199

20.

Leydon

G. M.

Boulton

Moynihan

Jones

Mossman

Boudioni

McPherson

(2000). Cancer patients’ information needs and information seeking behaviour: In depth interview study. BMJ, 320(7239), 909–913, https://doi.org/10.1136/bmj.320.7239.909

21.

List of HIPAA Identifiers . (2022). California department of health care services. https://www.dhcs.ca.gov/dataandstats/data/Pages/ListofHIPAAIdentifiers.aspx

22.

Martinez

I. L.

Acosta Gonzalez

(2022). Care v. caring: Obligation, duty, and love among latino alzheimer’s family caregivers. Journal of Applied Gerontology: The Official Journal of the Southern Gerontological Society, 41(7), 1744–1751. https://doi.org/10.1177/07334648221084998

23.

Mastel-Smith

Stanley-Hermanns

(2012). “It’s like we’re grasping at anything”: Caregivers’ education needs and preferred learning methods. Qualitative Health Research, 22(7), 1007–1015. https://doi.org/10.1177/1049732312443739

24.

McCabe

You

Tatangelo

(2016). Hearing their voice: A systematic review of dementia family caregivers’ needs. The Gerontologist, 56(5), e70–e88. https://doi.org/10.1093/geront/gnw078

25.

National Alliance for Caregiving . (2020). Caregiving in the U.S. National alliance for caregiving, November, 1–79. https://www.caregiving.org/caregiving-in-the-us-2020/

26.

Peterson

Hahn

Lee

A. J.

Madison

C. A.

Atri

(2016). In the information age, do dementia caregivers get the information they need? Semi-Structured interviews to determine informal caregivers’ education needs, barriers, and preferences. BMC Geriatrics, 16(1), 1–13. https://doi.org/10.1186/s12877-016-0338-7

27.

Sage

Benavides-Vaello

Flores

LaValley

Martyak

(2018). Strategies for conducting health research with Latinos during times of political incivility. Nursing Open, 5(3), 261–266. https://doi.org/10.1002/nop2.166

28.

Schulz

Eden

(2016). Families caring for an aging America. National Academies Press. https://doi.org/10.17226/23606

29.

Soong

S. T.

Kyaw

B. M.

Theng

Y. L.

Tudor Car

(2020). Information needs and information seeking behaviour of people with dementia and their non-professional caregivers: A scoping review. BMC Geriatrics, 20(1), 61–17. https://doi.org/10.1186/s12877-020-1454-y

30.

Steiner

Pierce

L. L.

Salvador

(2016). Information needs of family caregivers of people with dementia. Rehabilitation Nursing: The Official Journal of the Association of Rehabilitation Nurses, 41(3), 162–169. https://doi.org/10.1002/rnj.214

31.

Tolley

Ulin

Mack

Robinson

Succop

(2016). Chapter 8: Putting it into words reporting qualitative research results in scientific journals and reports objectives. In Qualitative methods in public health: A field guide for applied research. John Wiley & Sons, Incorporated. http://ebookcentral.proquest.com/lib/washington/detail.action?docID=4461564

32.

Topo

(2009). Technology studies to meet the needs of people with dementia and their caregivers: A literature review. In Journal of Applied Gerontology (Vol. 28, 1). 5, 37, https://doi.org/10.1177/0733464808324019

33.

USC

OPRS.

(2022). Levels of IRB review: Exempt. Office for the Protection of Research Subjects. https://oprs.usc.edu/irb/exempt-level-of-review/#cat2

34.

Whitlatch

C. J.

Orsulic-Jeras

(2018). Meeting the informational, educational, and psychosocial support needs of persons living with dementia and their family caregivers. The Gerontologist, 58(suppl_1), S58–S73. https://doi.org/10.1093/geront/gnx162

35.

Vega

Resendez

Jin

(2016). Latinos & Alzheimer’s disease: New numbers behind the crisis.

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