Young Caregivers in the End-of-Life Setting: A Population-Based Profile of an Emerging Group
Publication: Journal of Palliative Medicine
Volume 13, Issue Number 10
Abstract
Purpose: Little is known about young caregivers of people with advanced life-limiting illness. Better understanding of the needs and characteristics of these young caregivers can inform development of palliative care and other support services.
Methods: A population-based analysis of caregivers was performed from piloted questions included in the 2001–2007 face-to-face annual health surveys of 23,706 South Australians on the death of a loved one, caregiving provided, and characteristics of the deceased individual and caregiver. The survey was representative of the population by age, gender, and region of residence.
Findings: Most active care was provided by older, close family members, but large numbers of young people (ages 15–29) also provided assistance to individuals with advanced life-limiting illness. They comprised 14.4% of those undertaking “hands-on” care on a daily or intermittent basis, whom we grouped together as active caregivers. Almost as many young males as females participate in active caregiving (men represent 46%); most provide care while being employed, including 38% who work full-time. Over half of those engaged in hands-on care indicated the experience to be worse or much worse than expected, with young people more frequently reporting dissatisfaction thereof. Young caregivers also exhibited an increased perception of the need for assistance with grief.
Conclusion: Young people can be integral to end-of-life care, and represent a significant cohort of active caregivers with unique needs and experiences. They may have a more negative experience as caregivers, and increased needs for grief counseling services compared to other age cohorts of caregivers.
Get full access to this article
View all available purchase options and get full access to this article.
References
1.
Kurtz MEKurtz JCGiven CWGiven B. Relationship of caregiver reactions and depression to cancer patients' symptoms, functional states and depression—A longitudinal viewSoc Sci Med199540837-846. 1. Kurtz ME, Kurtz JC, Given CW, Given B: Relationship of caregiver reactions and depression to cancer patients' symptoms, functional states and depression—A longitudinal view. Soc Sci Med 1995;40:837–846.
2.
Howe ALSchofield HHerrman H. Caregiving: A common or uncommon experience?Soc Sci Med1997451017-1029. 2. Howe AL, Schofield H, Herrman H: Caregiving: A common or uncommon experience? Soc Sci Med 1997;45:1017–1029.
3.
Nijboer CTempelaar RSanderman RTriemstra MSpruijt RJvan den Bos GA. Cancer and caregiving: The impact on the caregiver's healthPsychooncology199873-13. 3. Nijboer C, Tempelaar R, Sanderman R, Triemstra M, Spruijt RJ, van den Bos GA: Cancer and caregiving: The impact on the caregiver's health. Psychooncology 1998;7:3–13.
4.
Emanual EJFairclough DLSlutsman JHillel AdeWitt BEmanual LL. Assistance from family members, friends, paid care givers, and volunteers in the care of terminally ill patientsN Engl J Med1999341956-963. 4. Emanual EJ, Fairclough D L, Slutsman J, Hillel A deWitt B, Emanual LL: Assistance from family members, friends, paid care givers, and volunteers in the care of terminally ill patients. N Engl J Med 1999;341:956–963.
5.
Burns CMSmith WTDixon TCraft PSBroom D. Caregiver knowledge of treatment intent in a longitudinal study of patients with advanced cancer [see editorial 617–619]Support Care Cancer200311629-637. 5. Burns CM, Smith WT, Dixon T, Craft PS, Broom D: Caregiver knowledge of treatment intent in a longitudinal study of patients with advanced cancer [see editorial 617–619]. Support Care Cancer 2003;11:629–637.
6.
Aoun SMKristjanson LJCurrow DCHudson PL. Caregiving for the terminally ill: At what cost?Palliat Med200519551-555. 6. Aoun SM, Kristjanson LJ, Currow DC, Hudson PL: Caregiving for the terminally ill: At what cost? Palliat Med 2005;19:551–555.
7.
Aldridge JBeckers S. Children Who Care: Inside the World of Young CaregiversLoughboroughLoughborough University Young Carers Research Group1993. 7. Aldridge J, Beckers S: Children Who Care: Inside the World of Young Caregivers. Loughborough: Loughborough University Young Carers Research Group, 1993.
8.
Aldridge JBecker S. Befriending Young CarersA Pilot StudyLoughboroughLoughborough University Young Carers Research Group1996. 8. Aldridge J, Becker S: Befriending Young Carers. A Pilot Study. Loughborough: Loughborough University Young Carers Research Group, 1996.
9.
NATSEM (National Centre for Social and Economic Modelling). Who's going to care? Informal care and an ageing populationReport prepared for Carers Australia2004. 9. NATSEM (National Centre for Social and Economic Modelling): Who's going to care? Informal care and an ageing population. Report prepared for Carers Australia. 2004.
10.
National Alliance for Caregivers. Young Caregivers in the US. Report of FindingsNational Alliance for Caregivers and The United Hospital Fund2005. 10. National Alliance for Caregivers. Young Caregivers in the US. Report of Findings. National Alliance for Caregivers and The United Hospital Fund, 2005.
11.
Becker S. Young Carers in Europe: An explanatory Cross-national Study in Britain, France, Sweden & GermanyLoughboroughLoughborough University Young Carers Research Group1995. 11. Becker S: Young Carers in Europe: An explanatory Cross-national Study in Britain, France, Sweden & Germany. Loughborough: Loughborough University Young Carers Research Group, 1995.
12.
Doran TDrever FWhitehead M. Health of young and elderly informal carers: Analysis of UK census dataBMJ20033271388. 12. Doran T, Drever F, Whitehead M: Health of young and elderly informal carers: Analysis of UK census data BMJ 2003;327:1388.
13.
Aldridge JBecker S. Children as carers: The impact of parental illness and disability on children's caring rolesJ Fam Ther199921303-320. 13. Aldridge J, Becker S: Children as carers: The impact of parental illness and disability on children's caring roles. J Fam Ther 1999;21:303–320.
14.
Disability, Ageing and Carers Australia: Caring in the CommunityReport 4436.0CanberraAustralian Bureau of Statistics1998. 14. Disability, Ageing and Carers Australia: Caring in the Community. Report 4436.0. Canberra: Australian Bureau of Statistics, 1998.
15.
Schulz RVisintainer PWilliamson GM. Psychiatric and physical morbidity effects of caregivingJ Gerontol199045181-191. 15. Schulz R, Visintainer P, Williamson GM: Psychiatric and physical morbidity effects of caregiving. J Gerontol 1990;45:181–191.
16.
Schulz RBeach SR. Caregiving as a risk factor for mortality. The Caregiver Health Effects StudyJAMA19992822215-2219. 16. Schulz R, Beach SR: Caregiving as a risk factor for mortality. The Caregiver Health Effects Study. JAMA 1999;282:2215–2219.
17.
Levenson JWMcCarthy EPLynn JDavis RBPhillips RS. The last six months of life for patients with congestive heart failureJ Am Geriatr Soc2000485 SupplS101-109. 17. Levenson JW, McCarthy EP, Lynn J, Davis RB, Phillips RS: The last six months of life for patients with congestive heart failure. J Am Geriatr Soc 2000;48(5 Suppl):S101–109.
18.
Tranmere JEHeyland DDudgeon DGroll DSquires-Graham MCoulson K. Measuring the symptom experience of seriously ill cancer and non-cancer hospitalized patients near the end of life with the memrial symptom assessment scaleJ Pain Symptom Manage200325420-429. 18. Tranmere JE, Heyland D, Dudgeon D, Groll D, Squires-Graham M, Coulson K: Measuring the symptom experience of seriously ill cancer and non-cancer hospitalized patients near the end of life with the memrial symptom assessment scale. J Pain Symptom Manage 2003;25:420–429.
19.
Weisbord SDCarmody SSBruns FJRotondi AJCohen LMZeidel MLArnold RM. Symptom burden, quality of life, advance care planning and the potential value of palliative care in severely ill haemodialysis patientsNephrol Dial Transplant2003181345-1352. 19. Weisbord SD, Carmody SS, Bruns FJ, Rotondi AJ, Cohen LM, Zeidel ML, Arnold RM: Symptom burden, quality of life, advance care planning and the potential value of palliative care in severely ill haemodialysis patients. Nephrol Dial Transplant 2003;18:1345–1352.
20.
Solano JPGomes BHigginson IJ. A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal diseaseJ Pain Symptom Manage20063158-69. 20. Solano, JP, Gomes B, Higginson IJ: A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease. J Pain Symptom Manage 2006;31:58–69.
21.
Currow DCAbernethy APFazekas BS. Specialist palliative care needs of whole populations: A feasibility study using a novel approachPalliat Med200418239-247. 21. Currow DC, Abernethy AP, Fazekas BS: Specialist palliative care needs of whole populations: A feasibility study using a novel approach. Palliat Med 2004;18:239–247.
22.
Wilson DHWakefield MTaylor AW. The South Australian Health Omnibus SurveyHealth Promotion J Aust1992247-49. 22. Wilson DH, Wakefield M, Taylor AW: The South Australian Health Omnibus Survey. Health Promotion J Aust 1992;2:47–49.
23.
2001 Census Basic Community Profile and Snapshot—South Australia, Australian Bureau of Statistics2004. 23. 2001 Census Basic Community Profile and Snapshot—South Australia, Australian Bureau of Statistics, 2004.
24.
Curtin LKlein RDirect standardization (age-adjusted death rates), Statistical Notes, no 6Hyattsville, MDNational Center for Health Statistics1995. 24. Curtin L, Klein R: Direct standardization (age-adjusted death rates), Statistical Notes, no 6. Hyattsville, MD: National Center for Health Statistics, 1995.
25.
SASThe SAS System, release 9.1CaryNC. 25. SAS: The SAS System, release 9.1, Cary, NC.
26.
Abernethy APCurrow DCFazekas BSLuszcz MAWheeler JLKuchibhatla M. Specialized palliative care services are associated with improved short- and long-term caregiver outcomesSupport Care Cancer200816585-597. 26. Abernethy AP, Currow DC, Fazekas BS, Luszcz MA, Wheeler JL, Kuchibhatla M: Specialized palliative care services are associated with improved short- and long-term caregiver outcomes. Support Care Cancer 2008;16:585–597.
27.
Abernethy APBurns CMWheeler JCurrow DC. Defining distinct caregiver sub-populations by intensity of end-of-life care providedPalliat Med20092366-79. 27. Abernethy AP, Burns CM, Wheeler J, Currow DC: Defining distinct caregiver sub-populations by intensity of end-of-life care provided. Palliat Med 2009;23:66–79.
28.
Ell K. Social networks, social support and coping with serious illness: The family connectionSoc Sci Med199642173-183. 28. Ell K: Social networks, social support and coping with serious illness: The family connection, Soc Sci Med 1996;42:173–183.
29.
Dellman-Jenkins MBlankemeyer MPinkard O. Young adult children and grandchildren in primary caregiver froles to older relatives and their service needsFamily Relat200049177-186. 29. Dellman-Jenkins M, Blankemeyer M, Pinkard O: Young adult children and grandchildren in primary caregiver froles to older relatives and their service needs. Family Relat 2000;49:177–186.
30.
Hirst M. Transitions to informal care in Great Britain during the 1990sJ Epidemiol Commun Health200256579-587. 30. Hirst M: Transitions to informal care in Great Britain during the 1990s. J Epidemiol Commun Health 2002;56:579–587.
31.
Harris PB. Listening to caregiving sons: Misunderstood realitiesGerontologist199838342-352. 31. Harris PB: Listening to caregiving sons: Misunderstood realities. Gerontologist 1998;38:342–352.
32.
Campbell LDCarroll MP. The incomplete revolutionMen Masc20079491-508. 32. Campbell LD, Carroll MP: The incomplete revolution. Men Masc 2007;9:491–508.
33.
Carers Australia. Young carers research project: Background papersCommonwealth Department of Family and Community Services2002. 33. Carers Australia: Young carers research project: Background papers. Commonwealth Department of Family and Community Services. 2002.
34.
Cree VE. Worries and problems of young carers: Issues for mental healthChild Fam Soc Work20038301-209. 34. Cree VE: Worries and problems of young carers: Issues for mental health. Child Fam Soc Work 2003;8:301–209.
35.
Lackey NRGates MF. Adults recollections of their experiences of young caregivers of family members with chronic physical illnessesJ Adv Nurs200134320-328. 35. Lackey NR, Gates MF: Adults recollections of their experiences of young caregivers of family members with chronic physical illnesses. J Adv Nurs 2001;34:320–328.
36.
Nostlinger CJonckheer Tde Belder Evan Wijngaerden EWylock CPelgrom JColebunders R. Families affected by HIV: Parents' and children's characteristics and disclosure to the childrenAIDS Care200416641-648. 36. Nostlinger C, Jonckheer T, de Belder E, van Wijngaerden E, Wylock C, Pelgrom J, Colebunders R: Families affected by HIV: Parents' and children's characteristics and disclosure to the children. AIDS Care 2004;16:641–648.
37.
Schrag AHovris AMorley DQuinn NJahanshahi M. Caregiver-burden in parkinson's disease is closely associated with psychiatric symptoms, falls, and disabilityParkinsonism Relat Disord20061235-41. 37. Schrag A, Hovris A, Morley D, Quinn N, Jahanshahi M: Caregiver-burden in parkinson's disease is closely associated with psychiatric symptoms, falls, and disability. Parkinsonism Relat Disord 2006;12:35–41.
38.
Siskowski CDiaz NConnors LNeal MA. Recognition and assessment of caregiving youth in hospice and home healthcareHome Health Care Nurs200725433-438. 38. Siskowski C, Diaz N, Connors L, Neal MA: Recognition and assessment of caregiving youth in hospice and home healthcare. Home Health Care Nurs 2007;25:433–438.
39.
Moore TMcArthur M. We're all in it together: Supporting young carers and their families in AustraliaHealth Soc Care Commun200815561-568. 39. Moore T, McArthur M: We're all in it together: Supporting young carers and their families in Australia. Health Soc Care Commun 2008;15:561–568.
40.
McPherson CJAddington-Hall JM. Judging the quality of care at the end of life: Can proxies provide reliable information?Soc Sci Med20035695-109. 40. McPherson CJ, Addington-Hall JM: Judging the quality of care at the end of life: Can proxies provide reliable information? Soc Sci Med 2003;56:95–109.
Information & Authors
Information
Published In
Journal of Palliative Medicine
Volume 13 • Issue Number 10 • October 2010
Pages: 1225 - 1235
PubMed: 20858060
Copyright
Copyright 2010, Mary Ann Liebert, Inc.
History
Published online: 14 October 2010
Published in print: October 2010
Published ahead of print: 21 September 2010
Accepted: 12 May 2010
Topics
Authors
Author Disclosure Statement
No competing financial interests exist.
Metrics & Citations
Metrics
Citations
Export Citation
Export citation
Select the format you want to export the citations of this publication.
View Options
Get Access
Access content
To read the fulltext, please use one of the options below to sign in or purchase access.⚠ Society Access
If you are a member of a society that has access to this content please log in via your society website and then return to this publication.