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Abstract

End-of-life care is a form of unpaid care work that is primarily the responsibility of women and can affect their career development, employment, finances, and vocational success. This paper provides a review of the literature on the career and economic effects of providing unpaid end-of-life care for women caregivers. Illustrative reflections from women caregivers highlight challenging and positive aspects of providing end-of-life care. Challenges identified by the women caregivers included managing conflicting demands among work, home and caregiving as well as experiencing emotional strain, financial burden and economic instability. In addition, work schedules had to be altered and career trajectories were interrupted. Interestingly, caregivers reported receiving support from their employers and co-workers and few work-related benefits were used. Despite the many challenges in managing work and end-of-life care, many participants felt positively about their ability to provide a caring environment for a loved one at the time of their death. Recommendations for individual, familial, workplace, and societal changes related to unpaid end-of-life care will be provided.

Keywords

unpaid end-of-life care caregiving women caregiver career

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References

Blustein

D. L.

(2006). The psychology of working: A new perspective for career development, counseling, and public policy. Routledge.

Blustein

D. L.

(2011). A relational theory of working. Journal of Vocational Behavior, 79, 1–17. https://doi.org/10.1016/j.jvb.2010.10.004

Blustein

D. L.

Schultheiss

D. E. P.

Flum

(2004). Toward a relational perspective of the psychology of careers and working: A social constructionist analysis. Journal of Vocational Behavior, 64, 423–440.

Born

Greiner

K. A.

Sylvia

Butler

Ahluwalia

J. S.

(2004). Knowledge, attitudes, and beliefs about end-of-life care among inner-city African Americans and Latinos. Journal of Palliative Medicine, 7(2), 247–256. https://doi.org/10.1089/109662104773709369

Cross

S. H.

Warraich

H. J.

(2019). Changes in the place of death in the United States. New England Journal of Medicine, 381(24), 2369–2370. https://doi.org/10.1056/NEJMc1911892

Dentinger

Clarkberg

(2002). Informal caregiving and retirement timing among men and women: Gender and caregiving relationships in late midlife. Journal of Family Issues, 23(7), 857–879. https://doi.org/10.1177/019251302236598

Elder

G. H.

Shanahan

M. J.

(2006). The life course and human development. In Lerner

R. M.

(Ed.), Handbook of child psychology, Vol. 1. Theoretical models of human development (pp. 665–715). John Wiley.

Fahle

McGarry

(2017). Caregiving and work: The relationship between labor market attachment and parental caregiving. Innovation in Aging, 2, 580. https://doi.org/10.1093/geroni/igy023.2150

Giddens

(1991). Modernity and self-identity. Stanford University Press.

10.

Giesbrecht

Crooks

V. A.

Williams

Hankivsky

(2012). Critically examining diversity in end-of-life family caregiving: Implications for equitable caregiver support and Canada’s compassionate care benefit. International Journal for Equity in Health, 11(1), 1–13. https://doi.org/10.1186/1475-9276-11-65

11.

Girgis

Lambert

Johnson

Waller

Currow

(2013). Physical, psychosocial, relationship, and economic burden of caring for people with cancer: A review. Journal of Oncology Practice, 9(4), 197–202. https://doi.org/10.1200/JOP.2012.000690

12.

Gupta

Goldman

Hernandez

Rose

(2018). Paid family and medical leave is critical for low-wage workers and their families. Center for Law and Social Policy. https://www.clasp.org/publications/fact-sheet/paid-family-and-medical-leave-critical-low-wageworkers-and-their-families

13.

Hegewisch

Tesfaselassie

(2019). The gender wage gap: 2018; Earnings differences by gender, race, and ethnicity. Institute for Women’s Policy Research. https://iwpr.org/publications/annual-gender-wage-gap-2018/

14.

Horowitz

J. M.

Parker

Graf

Livingston

(2017). Americans widely support paid family and medical leave, but differ over specific policies. Pew Research Center. https://wwwpewsocialtrends.org/2017/03/23/americans-widely-support-paid-family-and-medical-leave-but-differ-over-specific-policies/

15.

Hrovat

A. M.

Thompson

L. K.

Thaxton

S. L.

(2012). Preparing counselors-in-training for multidisciplinary collaboration: Lessons learned from a pilot program [Paper presentation] . NARACES Conference. https://wwwcounseling.org/docs/default-source/vistas/preparing-counselors-in-trainingfor-multidisciplinary-collaboration.pdf

16.

Hsieh

Shannon

S. E.

(2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15(9), 1277–1288. https://doi.org/10.1177/1049732305276687

17.

Hughes

M. C.

Vernon

(2019). Closing the gap in hospice utilization for the minority Medicare population. Gerontology and Geriatric Medicine, 5, 1–8. https://doi.org/10.1177/2333721419855667

18.

Jung

A. K.

Heppner

M. J.

(2015). Work of full-time mothers: Putting voice to the relational theory of working. The Career Development Quarterly, 63, 253–267. https://doi.org/10.1002/cdq.12017

19.

Jung

A. K.

O’Brien

K. M.

(2019). The profound influence of unpaid work on women’s lives: An overview and future directions. Journal of Career Development, 46(2), 184–200. https://doi.org/10.1177/0894845317734648

20.

Kim

Mitchell

H. R.

Ting

(2019). Application of psychological theories on the role of gender in caregiving to psycho-oncology research. Psycho-Oncology, 28(2), 228–254. https://doi.org/10.1002/pon.4953

21.

Kwok

Alma

Wong

Mak

(2014). Effectiveness of online cognitive behavioral therapy on family caregivers of people with dementia. Clinical Interventions in Aging, 9, 631–636. https://doi.org/10.2147/CIA.S56337

22.

Lahaie

Earle

Heymann

(2012). An uneven burden: Social disparities in adult caregiving responsibilities, working conditions, and caregiver outcomes. Research on Aging, 35(3), 243–274. https://doi.org/10.1177/0164027512446028

23.

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

24.

McDermott

C. L.

Engelberg

Ramsey

S. D.

Curtis

J. R.

Woo

Starks

(2018). Financial burden at end of life: Findings from interviews with caregivers of patients with cancer. Journal of Clinical Oncology, 36, 14.

25.

MetLife Mature Market Institute. (2011). Market survey of long-term care costs. https://wwwaarp.org/content/dam/aarp/livable-communities/old-learn/health/the-metlife-market-survey-of-nursing-home-assisted-living-adult-day-services-and-home-care-costs-2011-aarp.pdf

26.

Morgan

Williams

A. L.

Trussardi

Gott

(2016). Gender and family caregiving at the end-of-life in the context of old age: A systematic review. Palliative Medicine, 30(7), 616–624. https://doi.org/10.1177/0269216315625857

27.

National Institute on Aging. (2019). Caregiving. U.S. Department of Health and Human Services. https://wwwnia.nih.gov/health/caregiving

28.

Orlovic

Smith

Mossialos

(2019). Racial and ethnic differences in end-of-life care in the United States: Evidence from the Health and Retirement Study (HRS). SSM—Population Health, 7, 100331. https://doi.org/10.1016/j.ssmph.2018.100331

29.

Ornstein

K. A.

Kelley

A. S.

Bollens-Lund

Wolff

J. L.

(2017). A national profile of end-of-life caregiving in the United States. Health Affairs, 36(7), 1184–1192. https://doi.org/10.1377/hlthaff.2017.0134

30.

Oxfam International. (2020). Time to care: Unpaid and underpaid care work and the global inequality crisis. Retrieved from https://ousweb-prodv2-shared-media.s3.amazonaws.com/media/documents/FINAL_bp-time-to-care-inequality-200120-en.pdf?te=1&nl=inher%20words&emc=edit_gn_20200123?campaign_id=10&instance_id=15395&segment_id=20585&user_id=e93cdb24104c5614c06af6d9d7031cec&regi_id=8484256220200123

31.

Parker

Wang

. (2013). Modern parenthood: Roles of moms and dads converge as they balance work and family. Pew Research Center. https://wwwpewsocialtrends.org/2013/03/14/modern-parenthood-roles-of-moms-and-dads-converge-as-they-balance-work-and-family/

32.

Rabow

M. W.

Hauser

J. M.

Adams

(2004). Supporting family caregivers at the end of life: They don’t know what they don’t know. JAMA: Journal of the American Medical Association, 291(4), 483–491. https://doi.org/10.1001/jama.291.4.483

33.

Richardson

M. S.

(1993). Work in people’s lives: A location for counseling psychologists. Journal of Counseling Psychology, 40(4), 425–433.

34.

Richardson

M. S.

(2012a). Counseling for work and relationship. The Counseling Psychologist, 40(2), 190–242. http://dx.doi.org.proxy-um.researchport.umd.edu/10.1177/0011000011406452

35.

Richardson

M. S.

(2012b). The ongoing social construction of the counseling for work and relationship perspective. The Counseling Psychologist, 40(2), 279–290. http://dx.doi.org.proxy-um.researchport.umd.edu/10.1177/0011000011430097

36.

Roberts

(2001). Content analysis. In Smelser

N. J.

Baltes

P. B.

(Eds.), International encyclopedia of the social and behavioral sciences (Vol. 4, pp. 2697–2702). Elsevier.

37.

Schultheiss

D. E. P.

(2006). The interface of work and family life. Professional Psychology: Research and Practice, 37, 334–341. http://dx.doi.org.proxy-um.researchport.umd.edu/10.1037/0735-7028.37.4.334

38.

Schultheiss

D. E. P.

(2007). The emergence of a relational cultural paradigm for vocational psychology. International Journal for Educational and Vocational Guidance, 7, 191–201. http://dx.doi.org.proxy-um.researchport.umd.edu/10.1007/s10775-007-9123-7

39.

Schultheiss

D. E. P.

(2009). To mother or matter: Can women do both? Journal of Career Development, 36, 25–48. http://dx.doi.org.proxy-um.researchport.umd.edu/10.1177/0894845309340795

40.

Schulz

Sherwood

(2008). Physical and mental health effects of family caregiving. American Journal of Nursing, 108, 23–27. https://doi.org/10.1097/01.NAJ.0000336406.45248.4c

41.

Sörensen

Pinquart

Duberstein

(2002). How effective are interventions with caregivers? An updated meta-analysis. The Gerontologist, 42(3), 356–372. https://doi.org/10.1093/geront/42.3.356

42.

Stajduhar

K. I.

Funk

Toye

Grande

G. E.

Aoun

Todd

C. J.

(2010). Part 1: Home-based family caregiving at the end of life: A comprehensive review of published quantitative research (1998-2008). Palliative Medicine, 24(6), 573–593. https://doi.org/10.1177/0269216310371412

43.

Super

(1980). A life-span, life-space approach to career development. Journal of Vocational Behavior, 16, 282–298.

44.

Trivedi

Beaver

Bouldin

E. D.

Eugenio

Zeliadt

S. B.

Nelson

Rosland

A. M.

Szarka

J. G.

Piette

J. D.

(2014). Characteristics and well-being of informal caregivers: Results from a nationally-representative US survey. Chronic Illness, 10(3), 167–179. https://doi.org/10.1177/1742395313506947

45.

Wakabayashi

Donato

K. M.

(2006). Does caregiving increase poverty among women in later life? Evidence from the health and retirement survey. Journal of Health and Social Behavior, 47(3), 258–274. https://doi.org/10.1177/002214650604700305

46.

Washington

K. T.

Pike

K. C.

Demiris

Oliver

D. P.

Albright

D. L.

Lewis

A. M.

(2015). Gender differences in caregiving at end of life: Implications for hospice teams. Journal of Palliative Medicine, 18 (12), 1048–1053. https://doi.org/10.1089/jpm.2015.0214

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Women’s Experiences of Managing Work and End-of-Life Care: Challenges,Rewards and Recommendations for Vocational Psychologists

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