Palliative stage Parkinson's disease: Patient and family experiences of health-care services

Palliative Medicine

Volumn 23, Issue 2, 2009, Pages 120-125

  Giles, Stephen ^a   Miyasaki, J ^b  

^a TORONTO WESTERN HOSPITAL   (Canada)

^b UNIVERSITY OF TORONTO   (Canada)

Author keywords

Lived experience; Neurodegenerative diseases; Palliative care; Parkinson's disease; Patient and family needs; Phenomenology

Indexed keywords

ADULT; AGED; ARTICLE; CAREGIVER SUPPORT; CASE REPORT; FAMILY ASSESSMENT; FEMALE; HEALTH CARE NEED; HEALTH CARE QUALITY; HEALTH SERVICE; HUMAN; INTERDISCIPLINARY COMMUNICATION; MALE; PALLIATIVE THERAPY; PARKINSON DISEASE; PERSONAL EXPERIENCE; PSYCHOSOCIAL CARE; QUALITY OF LIFE; QUANTITATIVE ANALYSIS; SEMI STRUCTURED INTERVIEW;

ADULT; AGED; ATTITUDE TO HEALTH; CAREGIVERS; CROSS-SECTIONAL STUDIES; FAMILY; FEMALE; HUMANS; MALE; MIDDLE AGED; PALLIATIVE CARE; PARKINSON DISEASE; PATIENT SATISFACTION; PROFESSIONAL-FAMILY RELATIONS; PROFESSIONAL-PATIENT RELATIONS; QUALITATIVE RESEARCH; QUALITY OF HEALTH CARE; TERMINAL CARE;

EID: 62549101654     PISSN: 02692163     EISSN: None     Source Type: Journal    
DOI: 10.1177/0269216308100773     Document Type: Article

References (23)

1. Pahwa R Kelly EL. Parkinson's disease: Management of motor and nonmotor symptoms. Parkinson's disease management guide. Montvale: Thomson PDR; 2005.
2. Lee MA Walker R Prentice W. The role of palliative care Parkinson's disease. Geriatric Medicine 2004; 34: 51-54.
3. Thomas S MacMahon D. Continuing professional development. Parkinson's disease, palliative care and older people: Part 1. Nurs Older People 2004; 16: 22-26.
4. Thomas S MacMahon D. Continuing professional development. Parkinson's disease, palliative care and older people: Part 2. Nurs Older People 2004; 16: 22-26.
5. Oliver D. Palliative care. In: R Voltz J Bernat G Borasio I Maddocks D Oliver R Portnoy, (eds), Palliative care in neurology. Oxford: Oxford Universiy Press; 2004. p. 3-7.
6. Diamond A Jankovic J. The effect of deep brain stimulation on quality of life in movement disorders. J Neurol Neurosurg Psychiatry 2005; 76: 1188-1193.
7. Welsh M. Parkinson's disease and quality of life: Issues and challenges beyond motor symptom. Neurol Clin 2004; 22: S141-S148.
8. Haapaniemi T Sintonen H Sotaniemi K Sintonen H Taimela E. The generic 15D instrument is valid and feasible for measuring health related quality of life in Parkinson's disease. J Neurol Neurosurg Psychiatry 2004; 75: 976-983.
9. Clough C Blockey A. Parkinson's disease and related disorders. In: R Voltz J Bernat G Borasio I Maddocks D Oliver R Portnoy, (eds), Palliative care in neurology. Oxford: Oxford University Press; 2004. p. 48-53.
10. van Manen M. Researching lived experience: Human science for an action pedagogy. London: Althouse Press; 1997.
11. Smith J Flowers P Osborn M. Interpretive phenomenological analysis and the psychology of health and illness. In: L Yardley, (ed), Material discourses of health and illness. London: Routledge; 1997. p. 66-90.
12. Kvale S. Interviews: An introduction to qualitative research interviewing. Thousand Oaks: Sage; 1996.
13. Strauss A Corbin J. Basics of qualitative research; techniques and procedure for developing grounded theory. London: Sage; 1998.
14. Curtis J Patrick DL Caldwell E Greenlee H Collier AC. The quality of patient-doctor communication about end-of-life care: A study of patients with advanced AIDS and their primary care clinicians. Aids 1999; 13: 1123-1131.
15. Milberg A Strang P. Met and unmet needs in hospital-based home care: qualitative evaluation through open-ended questions. Palliat Med 2000; 14: 533-534.
16. Aoun S Kristjanson L Oldham L. The challenges and unmet needs of people with neurodegenerative conditions and their carers. ACCNS J Community Nurs 2006; 11: 17-20.
17. Giles S Miysaki J. Assessing the multi-disciplinary team based healthcare needs of patients and families with end stage Parkinson's disease: University of Toronto. 2007 [manuscript in preparation].
18. Egan M. Kadushin G. Managed care in home health: Social work practice and unmet client needs. Soc Work Health Care 2005; 41: 1-18.
19. Pasetti C Rossi Ferrario S Fornara R Picco D Foglia C Galli J. Caregiving and Parkinson's disease. Neurol Sci 2003; 24: 203-204.
20. Kutner JS Steiner JF Corbet KK Jahnigen DW Bartob PL. Information needs in terminal illness. Soc Sci Med 1999; 48: 1341-1352.
21. Benzein E Norberg A Saveman B. The meaning of the lived experience of hope in patients with cancer in palliative home care. Palliat Med 2001; 15: 117-126.
22. Waitzkin H. Doctor-patient communication. JAMA 1984; 252: 2441-2446.
23. Hudson PL Toye C Kristjanson LJ. Would people with Parkinson's disease benefit from palliative care. Palliat Med 2006; 20: 87-94.