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Social aspects of caregiving for people living with motor neurone disease: Their relationships to carer well-being

Published online by Cambridge University Press:  24 August 2005

ANTHONY LOVE ,
ANNETTE STREET ,
ROBIN RAY ,
ROD HARRIS  and
ROGER LOWE
ANTHONY LOVE
Affiliation:
School of Psychological Sciences, La Trobe University, Bendigo, Australia
ANNETTE STREET
Affiliation:
School of Nursing & Midwifery, La Trobe University, Melbourne, Australia
ROBIN RAY
Affiliation:
School of Nursing & Midwifery, La Trobe University, Melbourne, Australia
ROD HARRIS
Affiliation:
MND Association of Victoria, Victoria, Australia
ROGER LOWE
Affiliation:
School of Nursing & Midwifery, La Trobe University, Melbourne, Australia
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Abstract

Objective: To investigate social aspects of caregiving for people living with motor neurone disease (MND) and examine their relationships to carers' well-being.

Methods: A questionnaire was developed to assess carers' perceptions of their social support network (the Caregiver Network Scale, CNS), including measures of sociodemographic status and general well-being (GHQ-12), and mailed to carers of people living with MND.

Results: Seventy-five surveys were returned (response rate: 33%). In univariate analyses, relationships between well-being and carer age, time as caregiver, and four subscales of the CNS were found to be significant. However, multivariate analyses combining their effects revealed that stress on carer social networks was the best single contributor to predictions of carer well-being.

Significance of results: Results indicate that prolonged caring for others living with MND has substantial costs for the carer in terms of loss of social support, which affects carer well-being and impacts ultimately on those living with MND. The CNS offers promise as a measure for screening at-risk carers; those who are distressed become candidates for professional intervention to help them cope better. Further research, providing validation of the scale for this task, is recommended.

Keywords

Social supportCaregiver well-beingLong-term caregivingMotor neurone disease
Type
Research Article
Information
Palliative & Supportive Care , Volume 3 , Issue 1 , March 2005 , pp. 33 - 38
Copyright
© 2005 Cambridge University Press

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References

REFERENCES

Aoun, S. (2004). The hardest thing we have ever done: The social impact of caring for terminally ill people in Australia 2004: Full report of the National Inquiry into the social impact of caring for terminally ill people. Canberra: Palliative Care Australia.
Australian Bureau of Statistics. (1999). Disability, ageing and carers: Summary of findings. Canberra: Author.
Australian Institute of Health and Welfare (1999a). In Australia's Welfare. Canberra: Australian Government Publishing Service.
Australian Institute of Health and Welfare (1999b). Older Australia at a Glance. Canberra: Australian Government Publishing Service.
Bittman, M. & Thomson, C. (2000). Invisible Support: The determinants of time spent in informal care. In Volunteers and Volunteering, Warburton, J. & Oppenheimer, M. (eds.), pp. 98–112. Sydney: The Federation Press.
Campbell, A., Walker, J., & Farrell, G. (2003). Confirmatory factor analysis of the GHQ-12: Can I see that again? Australian and New Zealand Journal of Psychiatry, 37, 475–483.Google Scholar
d'Abbs, P. (1991). Who Helps: Support Networks and Social Policy in Australia. Monograph Number 12, Melbourne: Australian Institute of Family Studies.
Flicker, L. (1992). The effects of caregiving for the demented elderly. Australian Journal on Ageing, 11, 9–15.Google Scholar
Goldberg, D.P. & Williams, P. (1988). A User's Guide to the General Health Questionnaire. Windsor, UK: NFER-Nelson.
Goldstein, L.H., Adamson, M., Barby, T., et al. (2000). Attributions, strain and depression in carers of partners with MND: A preliminary investigation. Journal of Neurological Sciences, 180, 101–106.Google Scholar
Hoad, P. (2002). Drawing the line: The boundaries of volunteering in the community care of older people. Health and Social Care in the Community, 10, 239–246.Google Scholar
Jarrett, N.J., Payne, S.A., & Wiles, R.A. (1999). Terminally ill patients' and lay-carers' perceptions and experiences of community-based services. Journal of Advanced Nursing, 29, 476–483.Google Scholar
Kinsella, G., Cooper, B., Picton, C., et al. (1998). A review of the measurement of caregiver burden and family burden in palliative care. Journal of Palliative Care, 14, 37–45.Google Scholar
Levine, C. (Ed.). (2000). Always on Call: When Illness Turns Families into Caregivers. New York: United Hospital Fund.
McGarry, J. & Arthur, A. (2001). Informal caring in late life: A qualitative study of the experiences of older carers. Journal of Advanced Nursing, 33, 182–189.Google Scholar
Monat, A. & Lazarus, R.S. (Eds.). (1991). Stress and Coping. New York: Columbia University Press.
Nolan, M. (1996). Supporting family carers: The key to successful long-term care? British Journal of Nursing, 5, 836.Google Scholar
Nolan, M. (2001). Professional issues. Supporting family carers in the UK: Overview of issues and challenges. British Journal of Nursing, 10, 608–609, 611–613.Google Scholar
Nolan, M., Keady, J., & Grant, G. (1995a). CAMI: A basis for assessment and support with family carers. British Journal of Nursing, 4, 822–826.Google Scholar
Nolan, M., Keady, J., & Grant, G. (1995b). Developing a typology of family care: Implications for nurses and other service providers. Journal of Advanced Nursing, 21, 256–265.Google Scholar
Richter, A. (2003). The challenge of motor neurone disease: The importance of respite care in supporting quality of life for people with MND and their carers. Concord: The Motor Neurone Disease Association of New South Wales.
Robinson, I. & Hunter, M. (1998). Motor Neurone Disease. London: Routledge.
Sach and Associates. (2003). Future service directions review 2003. Melbourne: Motor Neurone Association of Victoria.
Small, N. & Rhodes, P. (2000). Too Ill to Talk: User Involvement and Palliative Care. London: Routledge.
Stajduhar, K.I. & Davies, B. (1998). Palliative care at home: Reflections on HIV/AIDS family caregiving experiences. Journal of Palliative Care, 14, 14–22.Google Scholar
Thomas, S. (2001). Caring for people with motor neurone disease. Primary Health Care, 11, 27–30.Google Scholar
van Teijlingen, E.R., Friend, E., & Kamal, A.D. (2001). Service use and needs of people with motor neurone disease and their carers in Scotland. Health and Social Care in the Community, 9, 397–403.Google Scholar
Waltrowicz, W., Ames, D., McKenzie, S., et al. (1996). Burden and stress on relatives (informal carers) of dementia suffers in psychogeriatric nursing homes. Australian Journal on Ageing, 15, 115–118.Google Scholar
Wellman, B. & Hiscott, R. (1983). From social support to social network. Toronto: Centre for Urban and Community Studies, University of Toronto.
Wilkinson, J. & Bittman, M. (2001). Volunteering: The human face of democracy. Sydney: Social Policy Research Centre.
Young, J.M. & McNicoll, P. (1998). Against all odds: Positive life experiences of people with advanced amyotrophic lateral sclerosis. Health and Social Work, 23, 35–43.Google Scholar