Top

Quality of Life Research

Gepubliceerd in:

21-03-2018

A systematic review of Indigenous caregiver functioning and interventions

Auteurs: Lesli Hokanson, Michael Gerhardt Quinn, Natalie Schüz, Kristy de Salas, Jenn Scott

Gepubliceerd in: Quality of Life Research | Uitgave 8/2018

Abstract

Purpose

There is a global increase in chronic, degenerative illnesses that require long-term intervention and support as a result of the aging population. The majority of support needs are met by informal family caregivers. While there have been three decades of research focusing on caregivers in general, the extent to which research has focused on Indigenous caregivers is unclear. Worldwide, Indigenous peoples face severe economic and health disadvantages that may make them even more vulnerable to the negative aspects of informal caregiving. The current systematic review aimed to synthesize the extant literature on Indigenous caregiver functioning and the interventions that are efficacious in alleviating Indigenous caregiver distress.

Methods

Systematic review Inclusion criteria were peer-reviewed quantitative studies examining Indigenous caregiver functioning or evaluating Indigenous caregiver interventions.

Results

1172 unique records were located in the final search undertaken; only 7 articles, representing 6 unique studies, met the full inclusion criteria. Most studies contained numerous methodological weaknesses that compromised the reliability and validity of findings. Available studies suggest poor health and high burden among Indigenous relative to non-Indigenous caregivers. However, high levels of positive aspects of caregiving were reported in one study. A single intervention study suggests that poor health outcomes among Indigenous caregivers can be alleviated, though the quality and focus of this study was sub-optimal.

Conclusions

Overall, there is very little quality evidence around Indigenous caregiver functioning. Future research in this area would benefit from greater adherence to the standards of research that contribute to a strong and reliable evidence base.

vorige artikel Systematic review of quality of life in Turner syndrome

volgende artikel Impact of orthodontic treatment on adolescents’ quality of life: a longitudinal evaluation of treated and untreated individuals

A follow-up study [49] was excluded as it was reported as a conference proceeding.

World Health Organization. (2011). Global health and aging: Brief report.

World Health Organization. (2015). World report on ageing & health. Geneva: WHO.

Feinberg, L., Reinhard, S. C., Houser, A., & Choula, R. (2011). Valuing the invaluable: 2011 update: The growing contributions and costs of family caregiving. Washington, DC: AARP Public Policy Institute.

Cummins, R. A., Hughes, J., Tomyn, A., Gibson, A., Woerner, J., & Lai, L. (2007). The wellbeing of Australians: Carer health and wellbeing Australian Unity Wellbeing Index Survey 17.1. Melbourne: Deakin University & Carers Australia.

Kenny, P., King, M. T., & Hall, J. (2014). The physical functioning and mental health of informal carers: Evidence of care-giving impacts from an Australian population-based cohort. Health & Social Care in the Community, 22, 646–659. https://doi.org/10.1111/hsc.12136.CrossRef

Pinquart, M., & Sörensen, S. (2003). Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis. Psychology and Aging, 18, 250–267. https://doi.org/10.1093/geronb/54B.1.P12.CrossRefPubMed

Robison, J., Fortinsky, R., Kleppinger, A., Shugrue, N., & Porter, M. (2009). A broader view of family caregiving: Effects of caregiving and caregiver conditions on depressive symptoms, health, work, and social isolation. Journals of Gerontology Series B-Psychological Sciences and Social Sciences, 64, 788–798. https://doi.org/10.1093/geronb/gbp015.CrossRef

Pinquart, M., & Sörensen, S. (2005). Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: A meta-analysis. The Gerontologist, 45, 90–106. https://doi.org/10.1093/geront/45.1.90.CrossRefPubMed

Behrendt, L. (2009). Indigenous peoples. Hot Topics: Legal Issues in Plain Language, 68, 1–36.

10.

United Nations Inter-Agency Support Group (IASG). (2014). The Health of Indigenous Peoples: Thematic paper towards the preparation of the 2014 World Conference on Indigenous Peoples.

11.

Norris, T., Vines, P. L., & Hoeffel, E. M. (2012). The American Indian and Alaska Native Population: 2010 (2010 Census Briefs). Suitland: United States Census Bureau.

12.

Statistics Canada. (2017). Aboriginal peoples in Canada: Key results from the 2016 Census. Ottawa: Statistics Canada.

13.

Australian Bureau of Statistics. (2016). 2016 Census Data Summary: Snapshot of Australia. Canberra, ACT: Australian Bureau of Statistics.

14.

Statistics New Zealand. (2013). 2013 Census QuickStats about Māori.

15.

Cooke, M., Mitrou, F., Lawrence, D., Guimond, E., & Beavon, D. (2007). Indigenous well-being in four countries: An application of the UNDP’s Human Development Index to Indigenous Peoples in Australia, Canada, New Zealand, and the United States. BMC International Health and Human Rights, 7, 9. https://doi.org/10.1186/1472-698X-7-9.CrossRefPubMedPubMedCentral

16.

Freemantle, J., Officer, K., McAullay, D., & Anderson, I. (2007). Australian Indigenous Health: Within an International Context. Darwin: Cooperative Research Centre for Aboriginal Health.

17.

Office for Disability Issues and Statistics New Zealand. (2010). Disability and Mäori in New Zealand in 2006: Results from the New Zealand Disability Survey. Wellington: Statistics New Zealand.

18.

Cotter, P., Anderson, I., & Smith, L. R. (2007). Indigenous Australians. In A. Borowski, S. Encel & E. Ozanne (Eds.), Longevity and social change in Australia (p. 65). Sydney: UNSW Press.

19.

Hayward, M. D., & Heron, M. (1999). Racial inequality in active life among adult Americans. Demography, 36, 77–91.CrossRefPubMed

20.

Indian Health Service. (2013). Indian Health Disparities. http://www.ihs.gov/newsroom/includes/themes/newihstheme/display_objects/documents/factsheets/Disparities_2013.pdf.

21.

Zhao, Y., Condon, J. R., Guthridge, S., & You, J. (2010). Living longer with a greater health burden—Changes in the burden of disease and injury in the Northern Territory Indigenous population between 1994–1998 and 1999–2003. Australian and New Zealand Journal of Public Health, 34, S93-S98. https://doi.org/10.1111/j.1753-6405.2010.00561.x.CrossRef

22.

Edwards, B., Gray, M., Baxter, J., & Hunter, B. (2009). The Tyranny of Distance. Commonwealth of Australia & Carers Australia.

23.

Corbett, A., Francis, K., & Chapman, Y. (2006). The experience of Whanau caring for members disabled from the effects of a cerebro-vascular accident. Contemporary Nurse, 22, 255–263. https://doi.org/10.5172/conu.2006.22.2.255.CrossRefPubMed

24.

Dyall, L., Feigin, V., Brown, P., & Roberts, M. (2008). Stroke: A picture of health disparities in New Zealand. Social Policy Journal of New Zealand, 33, 178–191.

25.

Emden, C., Kowanko, I., de Crespigny, C., & Murray, H. (2005). Better medication management for Indigenous Australians: Findings from the field. Australian Journal of Primary Health, 11, 80–90. https://doi.org/10.1071/PY05011.CrossRef

26.

McGrath, P. (2008). Family care giving for Aboriginal peoples during end-of-life: Findings from the Northern Territory. Journal of Rural and Tropical Public Health, 7, 1–10.

27.

Smith, K., Flicker, L., Shadforth, G., Carroll, E., Ralph, N., Atkinson, D., et al. (2011). ‘Gotta be sit down and worked out together’: Views of Aboriginal caregivers and service providers on ways to improve dementia care for Aboriginal Australians. Rural and Remote Health, 11, 1650.PubMed

28.

Ward, N. J., Jowsey, T., Haora, P. J., Aspin, C., & Yen, L. E. (2011). With good intentions: Complexity in unsolicited informal support for Aboriginal and Torres Strait Islander peoples. A qualitative study. BMC Public Health, 11, 686. https://doi.org/10.1186/1471-2458-11-686.CrossRefPubMedPubMedCentral

29.

Hennessy, C. H., & John, R. (1995). The interpretation of burden among Pueblo-Indian caregivers. Journal of Aging Studies, 9, 215–229. https://doi.org/10.1016/0890-4065(95)90003-9.CrossRef

30.

Crosato, K. E., Ward-Griffin, C., & Leipert, B. (2007). Aboriginal women caregivers of the elderly in geographically isolated communities. Rural and Remote Health, 7, 796.PubMed

31.

Hennessy, C. H., & John, R. (1996). American Indian family caregivers’ perceptions of burden and needed support services. Journal of Applied Gerontology, 15, 275–293. https://doi.org/10.1177/073346489601500301.CrossRef

32.

Hennessy, C. H., John, R., & Anderson, L. A. (1999). Diabetes education needs of family members caring for American Indian elders. The Diabetes Educator, 25, 747–754. https://doi.org/10.1177/014572179902500507.CrossRefPubMed

33.

McGrath, P., Patton, M. A., McGrath, Z., Olgivie, K., Rayner, R., & Holewa, H. (2006). ‘It’s very difficult to get respite out here at the moment’: Australian findings on end-of-life care for Indigenous people. Health & Social Care in the Community, 14, 147–155. https://doi.org/10.1111/j.1365-2524.2006.00604.x.CrossRef

34.

Anngela-Cole, L., & Busch, M. (2011). Stress and grief among family caregivers of older adults with cancer: A multicultural comparison from Hawai’i. Journal of Social Work in End-of-Life & Palliative Care, 7, 318–337. https://doi.org/10.1080/15524256.2011.623460.CrossRef

35.

Anngela-Cole, L., & Hilton, J. M. (2009). The role of attitudes and culture in family caregiving for older adults. Home Health Care Services Quarterly, 28, 59–83. https://doi.org/10.1080/0162140903014790.CrossRefPubMed

36.

Evans-Campbell, T., Fredriksen-Goldsen, K. I., Walters, K. L., & Stately, A. (2005). Caregiving experiences among American Indian two-spirit men and women: Contemporary and historical roles. Journal of Gay & Lesbian Social Services: Issues in Practice, Policy & Research, 18, 75–92. https://doi.org/10.1300/J041v18n03_05.CrossRef

37.

Shamseer, L., Moher, D., Clarke, M., Ghersi, D., Liberati, A., Petticrew, M., et al. (2015). Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015: Elaboration and explanation. BMJ, 349, g7647. https://doi.org/10.1136/bmj.g7647.CrossRef

38.

Moher, D., Hopewell, S., Schulz, K. F., Montori, V., Gøtzsche, P. C., Devereaux, P. J., et al. (2010). CONSORT 2010 Explanation and elaboration: Updated guidelines for reporting parallel group randomised trials. BMJ. https://doi.org/10.1136/bmj.c869.CrossRefPubMedPubMedCentral

39.

Des Jarlais, D. C., Lyles, C., & Crepaz, N. (2004). Improving the reporting quality of non-randomized evaluations of behavioral and public health interventions. The TREND statement. American Journal of Public Health, 94, 360–366.CrossRef

40.

Kelley, K., Clark, B., Brown, V., & Sitzia, J. (2003). Good practice in the conduct and reporting of survey research. International Journal for Quality in Health Care, 15, 261–266.CrossRefPubMed

41.

Alpass, F., Pond, R., Stephens, C., Stevenson, B., Keeling, S., & Towers, A. (2013). The influence of ethnicity and gender on caregiver health in older New Zealanders. The Journals of Gerontology: Series B: Psychological Sciences and Social Sciences, 68B, 783–793. https://doi.org/10.1093/geronb/gbt060.CrossRef

42.

Caqueo-Urizar, A., Gutierrez-Maldonado, J., Ferrer-Garcia, M., & Darrigrande-Molina, P. (2012). Burden of care in Aymara caregivers of patients with schizophrenia. Revista De Psiquiatria Y Salud Mental, 5, 191–196. https://doi.org/10.1016/j.rpsm.2011.07.001.CrossRefPubMed

43.

Caqueo-Urizar, A., Gutierrez-Maldonado, J., Ferrer-Garcia, M., & Miranda-Castillo, C. (2012). Coping strategies in Aymara caregivers of patients with schizophrenia. Journal of Immigrant and Minority Health, 14, 497–501. https://doi.org/10.1007/s10903-011-9563-5.CrossRefPubMed

44.

Magliano, L., Guarneri, M., Marasco, C., Tosini, P., Morosini, P., & Maj, M. (1996). A new questionnaire assessing coping strategies in relatives of patients with schizophrenia: Development and factor analysis. Acta Psychiatrica Scandinavica, 94, 224–228.CrossRefPubMed

45.

Spencer, S. M., Goins, R. T., Henderson, J. A., Wen, Y., & Goldberg, J. (2013). Influence of caregiving on health-related quality of life among American Indians. Journal of the American Geriatrics Society, 61(9), 1615–1620. https://doi.org/10.1111/jgs.12409.CrossRefPubMedPubMedCentral

46.

Jervis, L. L., Boland, M. E., & Fickenscher, A. (2010). American Indian family caregivers’ experiences with helping elders. Journal of Cross-Cultural Gerontology, 25, 355–369. https://doi.org/10.1007/s10823-010-9131-9.CrossRefPubMedPubMedCentral

47.

John, R., Hennessy, H., Dyeson, C., T. B., & Garrett, M. D. (2001). Toward the conceptualization and measurement of caregiver burden among Pueblo Indian family caregivers. The Gerontologist, 41, 210–219. https://doi.org/10.1093/geront/41.2.210.CrossRefPubMed

48.

Korn, L., Logsdon, R. G., Polissar, N. L., Gomez-Beloz, A., Waters, T., & Ryser, R. (2009). A randomized trial of a CAM therapy for stress reduction in American Indian and Alaskan Native family caregivers. The Gerontologist, 49, 368–377. https://doi.org/10.1093/geront/gnp032.CrossRefPubMedPubMedCentral

49.

Korn, L., Logsdon, R., Polissar, N., Gomez-Beloz, A., Waters, T., & Ryser, R. (2012). A randomized trial of Polarity therapy for stress and pain reduction in American Indian and Alaska Native family dementia caregivers. BMC Complementary and Alternative Medicine, 12, P140.CrossRefPubMedCentral

50.

Moher, D., Liberati, A., Tetzlaff, J., Altman, D., PRISMA Group (2009). Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. PLoS Med, 6, e1000097. https://doi.org/10.1371/journal.pmed.1000097.CrossRefPubMedPubMedCentral

51.

Slavin, R. E., & Smith, D. The relationship between sample sizes and effect sizes in systematic reviews in education. Educational Evaluation and Policy Analysis, 31(4), 500–506, https://doi.org/10.3102/0162373709352369.

52.

Eagar, K., Owen, A., Williams, K., Westera, A., Marosszeky, N., England, R., et al. (2007). Effective Caring: A synthesis of the international evidence on carer needs and interventions (Vol. 1, p. 27). Wollongong: Centre for Health Service Development-CHSD.

53.

Taylor, J. (2013). Practical ways to overcome isolation for Aboriginal and Torres Strait Islander Carers: Literature Review. Canberra: Carers Australia.

54.

National Health and Medical Research Council. (2012). NHMRC funding for research into Aboriginal and Torres Strait Islander health issues 2000/01 to 2012/13 NHMRC.

55.

Wright, M. (2012). Giving and receiving care: Reframing the work of Aboriginal care-giving. In B. F. McCoy, P. Stewart & N. Poroch (Eds.), Urban Health: Strengthening our voice, culture and partnerships (p. 105). Canberra: Australian Institute of Aboriginal and Torres Strait Islander Studies.

56.

Hilgeman, M. M., Durkin, D. W., Sun, F., DeCoster, J., Allen, R. S., Gallagher-Thompson, D., et al. (2009). Testing a theoretical model of the stress process in Alzheimer’s caregivers with race as a moderator. The Gerontologist, 49, 248–261. https://doi.org/10.1093/geront/gnp015.CrossRefPubMedPubMedCentral

57.

Knight, B. G., Silverstein, M., McCallum, T. J., & Fox, L. S. (2000). A sociocultural stress and coping model for mental health outcomes among African American caregivers in Southern California. The Journals of Gerontology: Series B: Psychological Sciences and Social Sciences, 55B, 142–150. https://doi.org/10.1093/geronb/55.3.P142.CrossRef

58.

Rickwood, D., Dudgeon, P., & Gridley, H. (2010). A history of psychology in Aboriginal and Torres Strait Islander mental health. In N. Purdie, P. Dudgeon & R. Walker (Eds.), Working together: Aboriginal and Torres Strait Islander mental health and wellbeing principles and practice (pp. 13–24). Canberra: Office of Aboriginal and Torres Strait Islander Health, Department of Ageing.

59.

Tuhiwai Smith, L. (1999). Decolonizing Methodologies: Research and Indigenous peoples. London: Zed Books Ltd.

60.

Tsey, K., Wilson, A., Haswell-Elkins, M., Whiteside, M., McCalman, J., Cadet-James, Y., et al. (2007). Empowerment-based research methods: A 10-year approach to enhancing Indigenous social and emotional wellbeing. Australiasian Psychiatry, 15(Supplement), S34–S38. https://doi.org/10.1080/10398560701701163.CrossRef

Titel: A systematic review of Indigenous caregiver functioning and interventions
Auteurs: Lesli Hokanson
Michael Gerhardt Quinn
Natalie Schüz
Kristy de Salas
Jenn Scott
Publicatiedatum: 21-03-2018
Uitgeverij: Springer International Publishing
Gepubliceerd in: Quality of Life Research / Uitgave 8/2018
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-018-1836-1

Bohn Stafleu van Loghum

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Purpose

Methods

Results

Conclusions

Log in om toegang te krijgen

Andere artikelen Uitgave 8/2018

Long-term quality of life improvement for chronic intractable back and leg pain patients using spinal cord stimulation: 12-month results from the SENZA-RCT

Measuring quality of life in patients with stress urinary incontinence: is the ICIQ-UI-SF adequate?

Measuring health-related quality of life in patients with advanced cancer: a systematic review of self-administered measurement instruments

Impact of orthodontic treatment on adolescents’ quality of life: a longitudinal evaluation of treated and untreated individuals

Documenting an epidemic of suffering: low health-related quality of life among transgender youth

Measurement properties of ThyPRO short-form (ThyPRO-39) for use in Chinese patients with benign thyroid diseases