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Original

Perceptions of quality of life in people with ALS: Effects of coping and health care

, &
Pages 164-169 | Received 21 Apr 2006, Accepted 12 Dec 2006, Published online: 10 Jul 2009

References

  • O'Boyle C. A., McGee H., Hickey A., O'Malley K., Joyce C. R. B. Individual quality of life in patients undergoing hip replacement. Lancet 1992; 339: 1088–91
  • Brogly S., Mercier C., Bruneau J., Palepu A., Franco E. Towards more effective public health programming for injection drug users: development and evaluation of the Injection Drug User Quality of Life Scale. Substance Use and Misuse 2003; 38: 965–92
  • Hubley A. M., Russell L. B., Palepu A. Injection Drug Users Quality of Life Scale (IDUQOL): a validation study. Health and Quality of Life Outcomes 2005; 3
  • Neudert C., Wasner M., Borasio G. D. Individual quality of life is not correlated with health‐related quality of life or physical function in patients with amyotrophic lateral sclerosis. Journal of Palliative Medicine 2004; 7: 551–7
  • Bolmsjo I. Existential issues in palliative care: interviews with patients with amyotrophic lateral sclerosis. Journal of Palliative Medicine 2001; 4: 499–505
  • Young J. M., McNicoll P. Against all odds: positive life experiences of people with advanced amyotrophic lateral sclerosis. Health & Social Work 1998; 23: 35–43
  • Kattilakoski H. To be taken ill with amyotrophic lateral sclerosis. The experiences of ALS patients living at home (Finnish). Sairannhoitaja 2004; 77: 17–9
  • Hughes R. A., Sinha A., Higginson I., Down K., Leigh P. N. Living with motor neuron disease: lives, experiences of services and suggestions for change. Health & Social Care in the Community 2005; 13: 64–74
  • Young J. M., Marshall C. L., Anderson E. J. Amyotrophic lateral sclerosis patients' perspectives on use of mechanical ventilation. Health & Social Work 1994; 19: 253–60
  • Brown J. B. User, carer and professional experiences of care in motor neuron disease. Primary Health Care Research & Development 2003; 4: 207–17
  • Brown J. B., Lattimer V., Tudball T. An investigation of patients' and providers' views of services for motor neuron disease. British Journal of Neuroscience Nursing 2005; 1: 249–52
  • Goodwin D. M., Higginson I. J., Myers K., Douglas H. R., Normand C. E. Effectiveness of palliative day care in improving pain, symptom control, and quality of life. Journal of Pain & Symptom Management 2003; 25: 202–12
  • Douglas H. R., Normand C. E., Higginson I. J., Goodwin D. M. A new approach to eliciting patients' preferences for palliative day care: the choice experiment method. Journal of Pain & Symptom Management 2005; 29: 435–45
  • Colaizzi P. F. Psychological research as the phenomenologist views it. Existential‐phenomenological alternative for psychology, R Valle, M King. Oxford University Press, New York 1978
  • Clarke S., Hickey A., O'Boyle C., Hardiman O. Assessing individual quality of life in amyotrophic lateral sclerosis. Quality of Life Research 2001; 10: 149–58
  • Nud*ist Version 6 (N6). QSR International Pty. Ltd, Melbourne 2003
  • Cedarbaum J. M., Stambler N., Malta E., Fuller C., Hilt D., Thurmond B., et al. The ALSFRS‐R: a revised ALS functional rating scale that incorporates assessments of respiratory function. Journal of the Neurological Sciences 1999; 169: 13–21
  • Reynolds F., Prior S. ‘Sticking jewels in your life’: exploring women's strategies for negotiating an acceptable quality of life with multiple sclerosis. Qualitative Health Research 2003; 13: 1225–51
  • Carter H., MacLeod R., Brander P., McPherson K. Living with a terminal illness: patients' priorities. Journal of Advanced Nursing 2004; 45: 611–20
  • Ekman I., Bergbom I., Ekman T., Berthold H., Mahsneh S. M. Maintaining normality and support are central issues when receiving chemotherapy for ovarian cancer. Cancer Nursing 2004; 27: 177–82
  • Pilkington F. B. A qualitative study of life after stroke. Journal of Neuroscience Nursing 1999; 31: 336–47
  • Habermann B. Continuity challenges of Parkinson's disease in middle life. Journal of Neuroscience Nursing 1999; 31: 200–7
  • Soderberg S., Lundman B., Norberg A. Struggling for dignity: the meaning of women's experiences of living with fibromyalgia. Qualitative Health Research 1999; 9: 575–87
  • Miller C. M. The lived experience of relapsing multiple sclerosis: a phenomenological study. Journal of Neuroscience Nursing 1997; 29: 294–304
  • Fegg M. J., Wasner M., Neudert C., Borasio G. D. Personal values and individual quality of life in palliative care patients. Journal of Pain & Symptom Management 2005; 30: 154–9
  • Nordeson A., Engstrom B., Norberg A. A self‐reported quality of life for patients with progressive neurological diseases. Quality of Life Research 1998; 7: 257–66
  • Goldtein L. H., Atkins L., Leigh P. N. Correlates of quality of life in people with motor neuron disease (MND). Amyotroph Lateral Scler Other Motor Neuron Disord 2002; 3: 123–9
  • Simmons Z., Bremer B. A., Robins R. A., Walsh S. M., Fischer S. Quality of life in ALS depends on factors other than strength and physical function. Neurology 2000; 55: 388–92
  • Ganzini L., Johnston W. S., Hoffman W. F. Correlates of suffering in amyotrophic lateral sclerosis. Neurology 1999; 52: 1434–40
  • Walsh S. M., Bremer B. A., Felgoise S. H., Simmons Z. Religiousness is related to quality of life in patients with ALS. Neurology 2003; 60: 1527–9
  • Dal Bello‐Hass V., Andrews‐Hinders D., Bocian J., Mascha E., Wheeler T., Mitsumoto H. Spiritual well‐being of the individual with amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord 2000; 1: 337–41
  • Chio A., Gauthier A., Montuschi A., Calvo A., Di Vito N., Ghiglione P., et al. A cross‐sectional study on determinants of quality of life in ALS. Journal of Neurology, Neurosurgery & Psychiatry 2004; 75: 1597–1601
  • van Teijlingen E. R., Friend E., Kamal A. D. Service use and needs of people with motor neuron disease and their carers in Scotland. Health & Social Care in the Community 2001; 9: 397–403
  • Hardiman O., Corr B., Frost E., Gibbons P., Mahon L., Traynor B. J. Access to health services in Ireland for people with multiple sclerosis and motor neuron disease. Irish Medical Journal 2003; 96: 200–3
  • Comhairle Na nOspideal. Report of the Committee to Review Neurology and Neurophysiology Services. 2003
  • Neurological Alliance of Ireland. Standards of Care for People with Disabling (Progressive and Static Neurological Conditions) in the Hospital and Community. 2000, Vol 1
  • Beisecker A. E., Kuckelman Cobb A., Ziegler D. K. Patients' perspectives of the role of care providers in amyotrophic lateral sclerosis. Archives of Neurology 1988; 45: 553–6

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