Caregiver education in Parkinson's disease: Formative evaluation of a standardized program in seven European countries

Quality of Life Research

Volumn 19, Issue 1, 2010, Pages 55-64

  A'Campo, L E I ^a   Spliethoff Kamminga, N G A ^a   MacHt, M ^b   Roos, R A C ^a  

^a LEIDEN UNIVERSITY MEDICAL CENTER   (Netherlands)

^b UNIVERSITY OF WÜRZBURG   (Germany)

Author keywords

Caregivers; Parkinson's disease; Patient education; Psychosocial; Quality of life

Indexed keywords

AGED; ANXIETY; ARTICLE; ATTITUDE TO HEALTH; CAREGIVER; COST OF ILLNESS; CURRICULUM; DEPRESSION; EDUCATION; EUROPE; FEASIBILITY STUDY; FEMALE; HEALTH CARE QUALITY; HEALTH STATUS; HUMAN; MALE; MIDDLE AGED; NURSING; PARKINSON DISEASE; PSYCHOLOGICAL ASPECT; QUALITY OF LIFE; QUESTIONNAIRE; SOCIAL SUPPORT; TREATMENT OUTCOME;

AGED; AGED, 80 AND OVER; ANXIETY; CAREGIVERS; COST OF ILLNESS; CURRICULUM; DEPRESSION; EUROPE; FEASIBILITY STUDIES; FEMALE; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HEALTH STATUS; HUMANS; MALE; MIDDLE AGED; OUTCOME AND PROCESS ASSESSMENT (HEALTH CARE); PARKINSON DISEASE; PROGRAM EVALUATION; QUALITY OF LIFE; QUESTIONNAIRES; SOCIAL SUPPORT;

EID: 75149195733     PISSN: 09629343     EISSN: None     Source Type: Journal    
DOI: 10.1007/s11136-009-9559-y     Document Type: Article

References (37)

1. MC De Rijk C Tzourio MM Breteler JF Dartiques L Amaducci S Lopez-Pousa, et al. 1997 Prevalence of Parkinsonism and Parkinson's disease in Europe: the Europarkinson collaborative study Journal of Neurology, Neurosurgery and Psychiatry 62 10 15 10.1136/jnnp.62.1.10
2. D Aarsland JP Larsen K Karlsen NG Lim E Tandberg 1999 Mental symptoms in Parkinson's disease are important contributors to caregiver distress International Journal of Geriatry and Psychiatry 14 866 874 10.1002/(SICI)1099- 1166(199910)14:10<866::AID-GPS38>3.0.CO;2-Z 1:STN:280:DyaK1MvltlWquw%3D%3D (Pubitemid 29495548)
3. B Thommessen D Aarsland A Braekhus AR Oksengaard K Engedal K Laake 2002 The psychosocial burden on spouses of the elderly with stroke, dementia and Parkinson's disease International Journal of Geriatric Psychiatry 17 78 84 10.1002/gps.524 11802235 (Pubitemid 34121101)
4. P Martinez-Martin J Benito-Leon F Alonso MJ Catalan M Pondal I Zamarbide, et al. 2005 Quality of life of caregivers in Parkinson's disease Quality of Life Research 14 463 472 10.1007/s11136-004-6253-y 15892435 (Pubitemid 40576396)
5. JH Carter BJ Stewart PG Archbold I Inoue J Jaglin M Lannon Parkinson's Study Group, et al. 1998 Living with a person who has Parkinson's disease: the spouse's perspective by stage of disease Movement Disorders 13 20 28 10.1002/mds.870130108 1:STN:280:DyaK1c7ht1Ojsg%3D%3D 9452321 (Pubitemid 28029847)
6. DL Secker RG Brown 2005 Cognitive behavioural therapy (CBT) for carers of patients with Parkinson's disease: a preliminary randomised controlled trial Journal of Neurology, Neurosurgery and Psychiatry 76 491 497 10.1136/jnnp.2004.042291 1:STN:280:DC%2BD2M7ktlelsQ%3D%3D (Pubitemid 40486571)
7. S Bhatia A Gupta 2003 Impairments in activities of daily living in Parkinson's disease: implications for management NeuroRehabilitation 18 209 214 14530586
8. WH Oertel H Ellgring 1995 Parkinson's disease: medical education and psychosocial aspects Patient Eduation and Counseling 26 71 79 10.1016/0738-3991(95)00757-Q 1:STN:280:DyaK28%2FjslCltA%3D%3D
9. J Spector R Tampi 2005 Caregiver depression Annals of Long-Term Care 13 34 39
10. NG Spliethoff-Kamminga AH Zwinderman MP Springer RA Roos 2003 A disease-specific psychosocial questionnaire for Parkinson's disease caregivers Journal of Neurology 250 1162 1168 10.1007/s00415-003-0165-6 14586595 (Pubitemid 37289645)
11. JJ Cochrane PN Goering JM Rogers 2002 The mental health of informal caregivers in Ontario: an epidemiological survey American Journal of Public Health 87 2002 2007 10.2105/AJPH.87.12.2002
12. B Habermann LL Davis 2006 Lessons learned from a Parkinson's disease caregiver intervention pilot study Applied Nursing Research 19 212 215 10.1016/j.apnr.2005.12.003 17098159 (Pubitemid 44693187)
13. B Han WE Haley 1999 Family caregiving for patients with stroke: review and analysis Stroke 30 1478 1485 1:STN:280:DyaK1MzhvFWitQ%3D%3D 10390326
14. M Mittelman 2005 Taking care of the caregivers Current Opinion in Psychiatry 18 633 639 10.1097/01.yco.0000184416.21458.40 16639087
15. GJ Acton J Kang 2001 Interventions to reduce the burden of caregiving for an adult with dementia: a meta-analysis Research in Nursing and Health 24 349 360 10.1002/nur.1036 1:STN:280:DC%2BD3Mnps1emsg%3D%3D 11746065 (Pubitemid 33604347)
16. M Pinquart S Sorensen 2006 Helping caregivers of persons of dementia: which interventions work and how large are their effects? International Psychogeriatrics 11 1 19
17. S Sorensen M Pinquart P Duberstein 2002 How effective are interventions with caregivers? an updated meta-analysis Gerontologist 42 356 372 12040138
18. Ellgring, H., Gerlich, C., Macht, M., Schradi, M., & EduPark-Konsortium. (2006). Psycholosoziales Training bei neurologischen Erkrankungen-Schwerpunkt Parkinson. Stuttgart: W. Kohlhammer.
19. Smith Pasqualini, M. C., & Simons, G. (2006). Patient education for people with Parkinson's disease and their carers: a manual. Chichester: Wiley.
20. Spliethoff-Kamminga, N. G. A., & Vreugd, J. (2006). Patiënt Educatie Programma Parkinson (PEPP). Amsterdam: Harcourt Publishers.
21. Lankinen, A., Viemerö, V., Lehtonen, A., & EduPark- projektityöryhmä. (2005). Psykososiaalinen valmennusohjelma Parkinsonin tautia sairastaville ja heidän Iäheisilleen. Turku: Suomen Parkinson-liitto ry.
22. Ricci Bitti, P. E., Candini, L., Carlini, M., Melanie, P., Razzaboni, E., & Consorzio EduPark. (2006). Intervento psicoeducativo nella malattia di Parkinson. Gardolo: Erickson.
23. Taba, P., Kanarik, Krikmann, E., & Ja EduPark-konsortium. (2005). Koolitusprogramm Parkinsoni tovega inimestele ja nende tugiisikutele. Tartu: Tartu Parkinsoni Haiguise Selts.
24. M Macht C Gerlich H Ellgring M Schradi AB Rusinol M Crespo, et al. 2007 Patient education in Parkinson's disease: formative evaluation of a standardized programme in seven European countries Patient Education and Counseling 65 245 252 10.1016/j.pec.2006.08.005 16965885 (Pubitemid 46073566)
25. G Simons SB Thompson MC Smith Pasqualini 2006 An innovative education programme for people with Parkinson's disease and their carers Parkinsonism and Related Disorders 12 478 485 10.1016/j.parkreldis.2006.05.003 16781881 (Pubitemid 44793112)
26. MM Hoehn MD Yahr 2001 Parkinsonism: onset, progression, and mortality. 1967 Neurology 57 S11 S26 1:STN:280:DC%2BD38%2Fks1ymug%3D%3D 11775596
27. MF Folstein SE Folstein PR McHugh 1975 Mini-mental state. A practical method for grading the cognitive state of patients for the clinician Journal of Psychiatric Research 12 189 198 10.1016/0022-3956(75)90026-6 1:STN:280:DyaE28%2FntFKjtw%3D%3D 1202204
28. NG Spliethoff-Kamminga AH Zwinderman MP Springer RA Roos 2003 Psychosocial problems in Parkinson's disease: evaluation of a disease-specific questionnaire Movement Disorders 18 503 509 10.1002/mds.10388 12722163 (Pubitemid 36675312)
29. The EuroQol Group 1990 EuroQol: a new facility for the measurement of health-related quality of life Health Policy 16 199 208 10.1016/0168-8510(90) 90421-9
30. V Peto C Jenkinson R Fitzpatrick R Greenhall 1995 The development and validation of a short measure of functioning and well being for individuals with Parkinson's disease Quality of Life Research 4 241 248 10.1007/BF02260863 1:STN:280:DyaK2MzjvVWqug%3D%3D 7613534
31. WW Zung 1965 A Self-rating Depression Scale Archives of General Psychiatry 12 63 70 1:STN:280:DyaF2M%2Fis1SqsQ%3D%3D 14221692
32. JT Biggs LT Wylie VE Ziegler 1978 Validity of the zung self-rating depression scale British Journal of Psychiatry 132 381 385.33 10.1192/bjp.132.4.381 1:STN:280:DyaE1c7ksFeqtg%3D%3D 638392
33. RE Luria 1975 The validity and reliability of the visual analogue mood scale Journal of Psychiatric Research 12 51 57 10.1016/0022-3956(75)90020-5 1:STN:280:DyaE2M7ptFOqsQ%3D%3D 806683
34. Macht, M., & Ellgring, H. (2003). Psychologische Interventionen bei der Parkinson-Erkrankung: Ein Behandlungsmanual. Stuttgart: W. Kohlhammer GmbH.
35. M Neuhauser 2006 How to deal with multiple endpoints in clinical trials Fundamental and Clinical Pharmacology 20 515 523 10.1111/j.1472-8206.2006.00437. x 17109645 (Pubitemid 44760171)
36. Yalom, I. (1975). Theory and practice of group psychotherapy. New York: Basic Books.
37. M Visser D Verbaan S van Rooden J Marinus J van Hilten A Stiggelbout 2009 A longitudinal evaluation of health-related quality of life of patients with Parkinson's disease Value in Health 12 392 396 10.1111/j.1524-4733.2008.00430.x