Journal of Religion and Health

, Volume 57, Issue 3, pp 1146–1167 | Cite as

Helping Carers Care: An Exploratory Study of Factors Impacting Informal Family Carers and Their Use of Aged Care Services

Original Paper

Abstract

This exploratory study considered the role of informal carers and their decision-making regarding various aged care services that supposedly support their ageing relatives. Consideration was given to the stressors and overall well-being of informal carers and the support services they did or did not receive during their time of caregiving. A questionnaire was utilised to gain exploratory quantitative and qualitative data plus basic demographic information from informal carers who connected with a single caregiver association based in Victoria, Australia. Several themes emerged from the analysis of data regarding carer well-being, carer decision-making and carer relationships—particularly with respect to the various authorities and organisations ostensibly responsible for supporting carers. While the majority of participants indicated a religious association, nevertheless spiritual considerations were not stress factors paramount in their decision-making or their criticism of carer support services. Other concerns dominated such as the need of having appropriate practical support, better case management, organisational transparency and greater recognition of the role of informal carers. Although this research was isolated to a particular locality, carers in similar situations globally have indicated comparable stresses and challenges further indicating that greater accountability and improved organisation are required for the support of carers internationally. Recommendations are suggested for how service providers can support carers—most importantly, the need for ongoing government assessment and government service improvement in order to help carers care into the future.

Keywords

Aged care Carers Caregiving Caregivers Palliative care 

Notes

Acknowledgments

The authors wish to acknowledge the support of the Palliative Care Unit, Department of Public Health, La Trobe University (Melbourne, Australia) and Carers Victoria (Melbourne, Australia) for their support of this research.

Compliance with Ethical Standards

Conflict of interest

The authors declare they have no conflict of interest.

Ethical Approval

All applicable national and institutional guidelines for the care of humans were followed during this research in compliance with Australian ‘National statement on ethical conduct in human research’ (NHMRC, 2007), and thus, accordingly informed consent was obtained from all participants.

References

  1. Abel, J., Walter, T., Carey, L. B., Rosenberg, J., Noonan, K., Horsfall, D., et al. (2013). Circles of care: Should community development redefine the practice of palliative care? BMJ Supportive and Palliative Care, 3(4), 383–388.  https://doi.org/10.1136/bmjspcare-2012-000359.CrossRefPubMedGoogle Scholar
  2. ABS. (2012). Australian Bureau of StatisticsDisability, ageing and carers, Victoria: Summary of findings, 2012 (cat. no. 4430.0). Canberra: Australian Bureau of Statistics.Google Scholar
  3. Abu Bakar, S. H., Weatherley, R., Omar, N., Abdullah, F., & Mohamad Aun, N. S. (2014). Projecting social support needs of informal caregivers in Malaysia. Health and Social Care in the Community, 22(2), 144–154.  https://doi.org/10.1111/hsc.12070.CrossRefPubMedGoogle Scholar
  4. Alrashed, A. M. (2016). Illustration of informal caregiving within Saudi society: Demography, scope of care and enabling arrangements. Scandinavian Journal of Caring Sciences, 31(2), 263–272.  https://doi.org/10.1111/scs.12339.CrossRefPubMedGoogle Scholar
  5. Aneshensel, C. S., Pearlin, L. I., & Schuler, R. H. (1993). Stress, role captivity, and the cessation of caregiving. Journal of Health and Social Behaviour, 34(1), 54–70.CrossRefGoogle Scholar
  6. Bauer, M., & Nay, R. (2003). Family and staff partnerships in long-term care—A review of the literature. Journal of Gerontological Nursing, 29(10), 46–53.CrossRefPubMedGoogle Scholar
  7. Bigby, C., Bowers, B., & Webber, R. (2011). Planning and decision making about future care of older group home residents and transition to residential aged care. Journal of Intellectually Disabled Research, 55(8), 777–789.CrossRefGoogle Scholar
  8. Boston, P. H., & Mount, B. M. (2006). The caregiver’s perspective on existential and spiritual distress in palliative care. Journal of Pain and Symptom Management, 32(1), 13–26.CrossRefPubMedGoogle Scholar
  9. Bryman, A. (2012). Social research methods. Oxford: Oxford University Press.Google Scholar
  10. Burns, C. M., Dixon, T., Broom, D., Smith, W. T., & Craft, P. S. (2003). Family caregiver knowledge of treatment: A longitudinal study of patients with advanced cancer. Supportive Care in Cancer, 11(10), 629–637.CrossRefPubMedGoogle Scholar
  11. Cantor, M. H. (1991). Family and community: Changing roles in an aging society. The Gerontologist, 31(3), 337–346.  https://doi.org/10.1093/geront/31.3.337.CrossRefPubMedGoogle Scholar
  12. Carey, L. B., & Cohen, J. (2009). Religion, spirituality and health care treatment decisions: The role of chaplains in the Australian clinical context. Journal of Health Care Chaplaincy, 15(1), 25–39.CrossRefGoogle Scholar
  13. Carers Victoria. (2016). Carers VictoriaThe facts. Footscray, Melbourne: Carers Victoria Incorporated. Retrieved March 6, 2018 from http://www.carersvictoria.org.au/publications/factsheets
  14. CRA. (2012). Victoria Government Carers Recognition Act. From Victorian Legislation & Parliamentary Documents. Retrieved March 6, 2018 from http://www.legislation.vic.gov.au/Domino/Web_Notes/LDMS/PubStatbook.nsf/edfb620cf7503d1aca256da4001b08af/023a825c23e20790ca2579c7000fb0bb/$FILE/12-010abookmarked.pdf
  15. Doyle, C., & Capon, H. (Eds.). (2016). National guidelines for spiritual care in aged care: Background and literature review. Parkville, Victoria: Meaningful Ageing Australia.Google Scholar
  16. Ducharme, F., Coulture, M., & Lamontagne, J. (2012). Decision-making process of family caregivers regarding placement of a cognitively impaired elderly relative. Home Health Care Services Quarterly, 31(3), 197–218.CrossRefPubMedGoogle Scholar
  17. Fetherstonhaugh, D., Tarzia, L., & Nay, R. (2013). Being central to decision making means I am still here!: The essence of decision making for people with dementia. Journal of Aging Studies, 27(2), 143–150.CrossRefPubMedGoogle Scholar
  18. Firbank, O. E., & Johnson-Lafleur, J. (2007). Older persons relocating with a family caregiver: Processes, stages, and motives. Journal of Applied Gerontology, 26(2), 182–207.CrossRefGoogle Scholar
  19. Hoefman, R. J., van Exel, N. J. A., Looren de Jong, S., Redekop, W. K., & Brouwer, W. B. F. (2010). A new test of the construct validity of the CarerQOL instrument: Measuring the impact of informal caregiving. Quality of Life Research, 20(6), 875–887.CrossRefGoogle Scholar
  20. Ineichen, B. (1998). Influences on the care of demented elderly people in the People’s Republic of China. International Journal of Geriatric Psychiatry, 13(2), 122–126.CrossRefPubMedGoogle Scholar
  21. Kellett, U. M. (1999). Searching for new possibilities to care: A qualitative analysis of family caring involvement in nursing homes. Nursing Enquiry, 6(1), 9–16.CrossRefGoogle Scholar
  22. Kellett, U. M., & Mannion, J. (1999). Meaning in caring: Reconceptualising the nurse-family carer relationship in community practice. Journal of Advanced Nursing, 29(3), 697–703.CrossRefPubMedGoogle Scholar
  23. MacKinlay, E. (2012). Care of the elderly. In M. Cobb, C. Puchalski, & B. Rumbold (Eds.), Oxford textbook of spirituality in healthcare (pp. 253–263). Oxford: Oxford University Press.Google Scholar
  24. Miller, N. A. (1997). Patient centered long-term care. Health Care Financing Review, 19(2), 1–10.PubMedPubMedCentralGoogle Scholar
  25. Minichiello, M. V. (1987). Someone’s decision: That is how I got here. Australian Journal of Social Issues, 22(4), 345–356.CrossRefGoogle Scholar
  26. Nathenson, P. (2012). Application of holistic nursing in the rehabilitation setting. Rehabilitation Nursing, 37(3), 114–118.CrossRefPubMedGoogle Scholar
  27. Ottmann, G., Allen, J., & Feldman, P. (2013). A systematic narrative review of consumer-directed care for older people: Implications for model development. Health and Social Care in the Community, 21, 563–581.PubMedGoogle Scholar
  28. Pearlin, L. I., & Aneshensel, C. S. (1994). Caregiving: The unexpected career. Social Justice Research, 7(4), 373–390.CrossRefGoogle Scholar
  29. Pearlin, L. I., Mullan, J. T., Semple, S. J., & Skaff, M. M. (1990). Caregiving and the stress process: An overview of concepts and their measures. Gerontologist, 30(5), 583–594.CrossRefPubMedGoogle Scholar
  30. Penrod, J., Dellasega, C., Strang, V. R., Neufeld, A., & Nolan, M. (1998). Caregiver experiences in making placement decisions. Western Journal of Nursing Research, 20(6), 706–732.CrossRefPubMedGoogle Scholar
  31. Rani, U. (2012). Coping styles and interventions to reduce psychological distress in care givers for the mentally challenged. Indian Journal of Positive Psychology, 3(3), 281–284.Google Scholar
  32. Schultz, C. L., & Schultz, N. C. (1998). The caregiving years. Melbourne: The Australian Council for Educational Research Ltd.Google Scholar
  33. Schultz, C. L., Smyrnios, K. X., Grbich, C. F., & Schultz, N. C. (1993). Caring for family caregivers in Australia: A model of psychoeducational support. Ageing & Society, 13(1), 1–25.CrossRefGoogle Scholar
  34. Schulz, R., & Sherwood, P. R. (2008). Physical and mental health effects of family caregiving. American Journal of Nursing, 108(9), 23–27.CrossRefPubMedPubMedCentralGoogle Scholar
  35. Stockwell-Smith, G., Kellett, U., & Moyle, W. (2010). Why carers of frail older people are not using available respite services: An Australian study. Journal of Clinical Nursing, 19(13–14), 2057–2064.PubMedGoogle Scholar
  36. Tamiya, N., Chen, L., & Sugisawa, H. (2009). Caregiver decisions on placement of family members in long-term care facilities in Japan: Analysis of caregiver interviews. Social Behaviour and Personality, 37(3), 393–410.CrossRefGoogle Scholar
  37. Walker, A. J., Pratt, C. C., Martell, L. K., & Martin, S. S. K. (1991). Perceptions of aid and actual aid in intergenerational caregiving. Family Relations, 40(3), 318–323.CrossRefGoogle Scholar
  38. Willemse, E., Anthierens, S., Farfan-Portet, M. I., Schmitz, O., Macq, J., Bastiaens, H., et al. (2016). Do informal caregivers for elderly in the community use support measures? A qualitative study in five European countries. BMC Health Services Research, 16, 270.  https://doi.org/10.1186/s12913-016-1487-2.CrossRefPubMedPubMedCentralGoogle Scholar
  39. Wylie, L. E., & Brank, E. M. (2009). Assuming elder care responsibility: Am I a caregiver? Journal of Empirical Legal Studies, 6(4), 899–924.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2018

Authors and Affiliations

  1. 1.Palliative Care Unit, Department of Public HealthLa Trobe UniversityBundoora, MelbourneAustralia

Personalised recommendations