Abstract
Purpose
The aim of the present research was to determine the predictors of quality of life (QOL) among carers for people living with a chronic degenerative neurological illness, with comparisons of the differences in significant predictors of QOL between illness groups.
Methods
Psychosocial and economic variables were examined among 192 carers for people living at home with motor neurone disease, Huntington’s disease, multiple sclerosis, and Parkinson’s, over a twelve-month period, to determine their contribution to the prediction of carer QOL.
Results
Mood was the only consistent predictor of carer QOL across groups; however, marital relationship satisfaction, social support satisfaction, income, and economic pressure significantly predicted carer QOL for at least one of the illness groups, in addition to mood.
Conclusions
The findings highlight the importance of recognising the varying roles that psychosocial and economic variables play on the prediction of carer QOL within each of these illness groups.
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Abbreviations
- MND:
-
Motor neurone disease (also known as amyotrophic lateral sclerosis in some areas)
- HD:
-
Huntington’s disease
- MS:
-
Multiple sclerosis
- QOL:
-
Quality of life
References
Aronson, K. J. (1997). Quality of life among persons with multiple sclerosis and their caregivers. Neurology, 48, 74–80.
Helder, D. I., Kaptein, A. A., van Kempen, G. M., Weinman, J., van Houwelingen, J. C., & Roos, R. A. (2002). Living with Huntington’s disease illness perceptions, coping mechanisms, and spouses’ quality of life. International Journal of Behavioural Medicine, 9, 37–52.
Kaub-Witterner, D., Steinbuchel, N., Wasner, M., Laier-Groeneveld, G., & Borasio, G. D. (2003). Quality of life and psychosocial issues in ventilated patients with amyotrophic lateral sclerosis and their caregivers. Journal of Pain and Symptom Management, 26, 890–897.
Trail, M., Nelson, N. D., Van, J. N., Appel, S. H., & Lai, E. C. (2003). A study comparing patients with amyotrophic lateral sclerosis and their caregivers on measures of quality of life, depression, and their attitudes toward treatment options. Journal of the Neurological Sciences, 209, 79–86.
Behari, M., Srivastava, A. K., & Pandey, R. M. (2005). Quality of life in patients with Parkinson’s disease. Parkinsonism and Related Disorders, 11, 221–226.
Kubler, A., Winter, S., Ludolph, A. C., Hautzinger, M., & Birbaumer, N. (2005). Severity of depressive symptoms and quality of life in patients with amyotrophic lateral sclerosis. Neurorehabilitation & Neural Repair, 19, 182–193.
McCabe, M. P. (2005). Mood and self-esteem of persons with multiple sclerosis following an exacerbation. Journal of Psychosomatic Research, 59, 161–166.
McCabe, M. P., & McKern, S. (2002). Quality of life and multiple sclerosis: Comparison between people with multiple sclerosis and people from the general population. Journal of Clinical Psychology in Medical Settings, 9, 287–295.
Menza, M., & Dobkin, R. D. (2005). Anxiety and Parkinson’s disease. Primary Psychiatry, 12, 63–68.
WHOQOL Group. (1998). Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychological Medicine, 28, 551–558.
Pakenham, K. I. (1998). Couple coping and adjustment to multiple sclerosis in care receiver-carer dyads. Family Relations, 47(3), 269–277.
Pakenham, K. I. (2005). Relations between coping and positive and negative outcomes in carers of persons with multiple sclerosis (MS). Journal of Clinical Psychology in Medical Settings, 12(1), 25–38.
Pakenham, K. I. (2005). The positive impact of multiple sclerosis (MS) on carers: Associations between carer benefit finding and positive and negative adjustment domains. Disability and Rehabilitation, 27(17), 985–997.
Pakenham, K. I. (2008). Making sense of caregiving of persons with multiple sclerosis (MS): The dimensional structure of sense making and relations with positive and negative adjustment. International Journal of Behavioural Medicine, 15(3), 241–252.
Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer.
Haley, W. E., Levine, E. G., Brown, S. L., & Bartolucci, A. A. (1987). Stress, appraisal, coping, and social support as predictors of adaptational outcome among dementia caregivers. Psychology and Aging, 2, 323–330.
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. Journal of Gerontology, 55B, 142–150.
Dupont, S. (1996). Sexual function and ways of coping in patients with multiple sclerosis and their partners. Sexual and Marital Therapy, 11, 359–372.
O’Connor, E. J., McCabe, M. P., & Firth, L. (2008). The impact of neurological illness on marital relationships. Journal of Sex and Marital Therapy, 34, 115–132.
McCabe, M. P. (2002). Relationship functioning and sexuality among people with multiple sclerosis. Journal of Sex Research, 39, 302–309.
Gordon, P. A., & Perrone, K. M. (2004). When spouses become caregivers: Counselling implications for younger couples. Journal of Rehabilitation, 70, 27–32.
Brown, M., Lipscomb, J., & Snyder, C. (2001). The burden of illness of cancer: Economic cost and quality of life. Annual Review of Public Health, 22, 91.
Jonsson, B. (1998). The economic impact of diabetes. Diabetes Care, 21, 7–10.
Waldron, N. (2006). Funding decisions in chronically sick individuals. British Journal of Nursing, 15, 286–291.
Moore, M. J., Zhu, C. W., & Clipp, E. C. (2001). Informal costs of dementia care: Estimates from the national longitudinal caregiver study. Journal of Gerontology, 56B, S219–S228.
Grunfeld, E., Coyle, D., Whelan, T., Clinch, J., Reyno, L., Earle, C. C., et al. (2004). Family caregiver burden: Results of a longitudinal study of breast cancer patients and their principal caregivers. Canadian Medical Association Journal, 170, 1795–1801.
Harwood, D., Hawton, K., Hope, T., Harriss, L., & Jacoby, R. (2006). Life problems and physical illness as risk factors for suicide in older people: A descriptive and case-control study. Psychological Medicine, 36, 1265–1274.
Hanratty, B., Holland, P., Jacoby, A., & Whitehead, M. (2007). Financial stress and strain associated with terminal cancer—A review of the evidence. Palliative Medicine, 21, 595–607.
McCabe, M. P., Firth, L., & O’Connor, E. J. (2009). A comparison of mood and quality of life among people with progressive neurological illnesses and their carers. Journal of Clinical Psychology in Medical Settings, 16, 355–362.
Goldstein, L. H., Atkins, L., Landau, S., Brown, R., & Leigh, P. N. (2006). Predictors of psychological distress in carers of people with amyotrophic lateral sclerosis: A longitudinal study. Psychological Medicine, 36, 865–875.
McCabe, M. P., & O’Connor, E. J. (2010). The economic impact of progressive neurological illness on quality of life in Australia. Journal of Family and Economic Issues, 31, 82–89.
McCluskey, L. (2007). Amyotrophic lateral sclerosis: Ethical issues from diagnosis to end of life. Neuro Rehabilitation, 22(6), 463–472.
Tamparo, C. D., & Lewis, M. A. (2005). Diseases of the human body (4th ed.). Philadelphia: FA Davis Company.
Clarke, S., Hickey, A., O’Boyle, C., & Hardiman, O. (2001). Assessing individual quality of life in amyotrophic lateral sclerosis. Quality of Life Research, 10, 149–158.
Brouwer-DudokdeWit, A. C., Savenije, A., Zoetewij, M. W., Maat-Kievit, A., & Tibben, A. (2002). A hereditary disorder in the family and the family life cycle: Huntington disease as a paradigm. Family Process, 41(4), 677–692.
McCabe, M. P., Firth, L., & O’Connor, E. J. (2009). Mood and quality of life among people with progressive neurological illnesses. International Journal of Clinical and Health Psychology, 9, 21–35.
Buhse, M. (2008). Assessment of caregiver burden in families of persons with multiple sclerosis. Journal of Neuroscience Nursing, 40, 25–31.
Iezzoni, L., & Ngo, L. (2007). Health, disability, and life insurance experiences of working-age persons with multiple sclerosis. Multiple Sclerosis, 13, 534–546.
Hendrick, S. S. (1988). A generic measure of relationship satisfaction. Journal of Marriage and the Family, 50(1), 93–98.
Curran, S. L., Andrykowski, M. A., & Studts, J. L. (1995). Short form of the profile of mood states (POMS-SF): Psychometric information. Psychological Assessment, 7(1), 80–83.
Sarason, I. G., Sarason, B. R., Shearin, E. N., & Pierce, G. R. (1987). A brief measure of social support: Practical and theoretical implications. Journal of Social and Personal Relationships, 4, 497–510.
Conger, R. D., Conger, K. J., Elder, G. H., Lorenz, F. O., Simons, R. L., & Whitbeck, L. B. (1992). A family process model of economic hardship and adjustment of early adolescent boys. Child Development, 63, 526–541.
Faul, F., Erdfelder, E., Buchner, A., & Lang, A.-G. (2009). Statistical power analyses using G*Power 3.1: Tests for correlation and regression analyses. Behaviour Research Methods, 41, 1149–1160.
Tabachnick, B. G., & Fidell, L. S. (2001). Using multivariate statistics (4th ed.). Boston: Allyn & Bacon.
Kaptein, A. A., Scharloo, E. M., Helder, D. I., Snoei, L., van Kempen, G. M. J., Weinman, J., et al. (2007). Quality of life in couples living with Huntington’s disease: The role of patients’ and partners’ illness perceptions. Quality of Life Research, 16, 793–801.
Tooth, L., Russell, A., Lucke, J., Byrne, G., Lee, C., Wilson, A., et al. (2008). Impact of cognitive and physical impairment on carer burden and quality of life. Quality of Life Research, 17, 267–273.
Jenkinson, C., Fitzpatrick, R., Swash, M., & Peto, V. (2000). The ALS health profile study: Quality of life of amyotrophic lateral sclerosis patients and carers in Europe. Journal of Neurology, 415, 835–840.
Martinez-Martin, P., Benito-Leon, J., Alonso, F., Catala, M. J., Pondal, M., Zamarbide, I., et al. (2005). Quality of life of caregivers in Parkinson’s disease. Quality of Life Research, 14, 463–472.
Hawthorne, G., Herrmann, H., & Murphy, B. (2006). Interpreting the WHOQOL-BREF: Preliminary population norms and effect sizes. Social Indicators Research, 77, 37–59.
A’Campo, L. E. I., Spliethoff-Kamminga, N. G. A., Macht, M., The EduPark Consortium, & Roos, R. A. C. (2010). Caregiver education in Parkinson’s disease: Formative evaluation of a standardized program in seven European countries. Quality of Life Research, 19, 55–64.
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O’Connor, E.J., McCabe, M.P. Predictors of quality of life in carers for people with a progressive neurological illness: a longitudinal study. Qual Life Res 20, 703–711 (2011). https://doi.org/10.1007/s11136-010-9804-4
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DOI: https://doi.org/10.1007/s11136-010-9804-4