Community-based stroke information for clients with stroke and their carers: Is there congruency between actual and recommended practice?

Topics in Stroke Rehabilitation

Volumn 15, Issue 4, 2008, Pages 295-306

  Eames, Sally ^a   Hoffmann, Tammy ^a   McKenna, Kryss ^a   Worrall, Linda ^a  

^a UNIVERSITY OF QUEENSLAND   (Australia)

Author keywords

Cerebrovascular accident; Consumer health information; Health education; Patient education; Stroke; Teaching

Indexed keywords

ARTICLE; CAREGIVER; HUMAN; MEDICAL INFORMATION; MEDICAL PRACTICE; QUESTIONNAIRE; SOCIAL WELFARE; STROKE;

AUSTRALIA; COMMUNITY HEALTH SERVICES; GUIDELINE ADHERENCE; HUMANS; PATIENT EDUCATION AS TOPIC; PHYSICIAN'S PRACTICE PATTERNS; PRACTICE GUIDELINES AS TOPIC; QUESTIONNAIRES; STROKE; TEACHING MATERIALS;

EID: 50249156934     PISSN: 10749357     EISSN: None     Source Type: Journal    
DOI: 10.1310/tsr1504-295     Document Type: Article

References (89)

1. National Stroke Association. What is stroke? Available at: http://www.stroke.org/site/PageServer?pagename=STROKE. Accessed May 13, 2008.
2. The Stroke Association. Information. Available at: http://www.stroke.org. uk/information/index.html. Accessed March 11, 2008.
3. National Stroke Foundation. What is a stroke? Fact, figures and stats. December 7, 2007. Available at: http://www.strokefoundation.com.au/facts- figures-and-stats. Accessed March 11, 2008.
4. Senes S. How We Manage Stroke in Australia. Canberra: Australian Institute of Health and Welfare; 2006.
5. National Stroke Foundation. Clinical Guidelines for Acute Stroke Management. Melbourne: National Stroke Foundation; 2007.
6. National Stroke Foundation. Clinical Guidelines for Stroke Rehabilitation and Recovery. Melbourne: National Stroke Foundation; 2005.
7. Intercollegiate Stroke Working Party. National Guidelines for Stroke: Second Edition. London: Royal College of Physicians: Clinical Effectiveness and Evaluation Unit; 2004.
8. Smith I, Forster A, House A, Knapp P, Wright J, Young J. Information provision for stroke patients and their caregivers. Cochrane Database of Systematic Reviews. 2008, Issue 2. Art. No.: CD001919. DOI: 10.1002/14651858.CD001919.pub2.
9. Garrett D, Cowdell F. Information needs of patients and carers following stroke. Nurs Older People. 2005;17(6):14-16.
10. Hoffmann T, McKenna K, Worrall L, Read S. Evaluating current practice in the provision of written information to stroke patients and their carers. Int J Ther Rehabil. 2004;11(7):303-310.
11. Mak AKM, Mackenzie A, Lui MHL. Changing needs of Chinese family caregivers of stroke survivors. J Clin Nurs. 2007;16(5):971-979.
12. Wachters-Kaufmann C, Schuling J, The H, Meyboom-de-Jong B. Actual and desired information provision after a stroke. Patient Educ Couns. 2005;56(2):211-217.
13. Wiles R, Pain H, Buckland S, McLellan L, Wiles R. Providing appropriate information to patients and carers following a stroke. J Adv Nurs. 1998;28(4):794-801.
14. National Stroke Foundation. "Walk in Our Shoes": Stroke Survivors and Carers Report on Support After Stroke. Melbourne: National Stroke Foundation; 2007.
15. Hanger H, Walker G, Paterson L, McBride S, Sainsbury R. What do patients and their carers want to know about stroke? A two-year follow-up study. Clin Rehabil. 1998;12:45-52.
16. Hanger H, Mulley G. Questions people ask about stroke. Stroke. 1993;24(4):536-538.
17. O'Mahony PG, Rodgers H, Thomson RG, Dobson R, Jarnes OF. Satisfaction with information and advice received by stroke patients. Clin Rehabil. 1997;11(1):68-72.
18. van Veenendaal H, Grinspun DR, Adriaanse HP. Educational needs of stroke survivors and their family members, as perceived by themselves and by health professionals. Patient Educ Couns. 1996;28(3):265-276.
19. Lorig K, Harris M. How do I get from a needs assessment to a program? Program planning and implementation. In: Lorig K, ed. Patient Education: A Practical Approach. 3rd ed. Thousand Oaks, CA: Sage Publications, Inc; 2001:85-142.
20. Mackenzie A, Perry L, Lockhart E, Cottee M, Cloud G, Mann H. Family carers of stroke survivors: needs, knowledge, satisfaction and competence in caring. Disabil Rehabil. 2007;29(2):111-121.
21. Neufeld P. The adult learner in client-practitioner partnerships. In: McKenna K, Tooth L, eds. Client Education: A Partnership Approach for Health Practitioners. Sydney, Australia: UNSW Press; 2006:57-87.
22. Wellwood I, Dennis MS, Warlow CP. Perceptions and knowledge among surviving patients with stroke and their carers. Age Ageing. 1994;23:293-298.
23. Bakas T, Austin JK, Okonkwo KF, Lewis RR, Chadwick L. Needs, concerns, strategies, and advice of stroke caregivers the first 6 months after discharge. J Neurosci Nurs. 2002;34(5):242-251.
24. Choi-Kwon S, Lee SK, Park HA, Kwon SU, Ahn JS, Kim JS. What stroke patients want to know and what medical professionals think they should know about stroke: Korean perspectives. Patient Educ Couns. 2005;56(1):85-92.
25. Tooth L, Refshauge K. The effectiveness of client education: a review of the evidence and future challenges. In: McKenna K, Tooth L, eds. Client Education: A Partnership Approach for Health Practitioners. Sydney, Australia: UNSW Press; 2006:22-56.
26. McKenna K, Tooth L. Deciding the content and format of education interventions. In: McKenna K, Tooth L, eds. Client Education: A Partnership Approach for Health Practitioners. Sydney, Australia: UNSW Press; 2006:128-158.
27. Rankin S, Duffy Stallings K, London F. Educational interventions for patients and families. In: Rankin S, Duffy Stallings K, London F, eds. Patient Education in Health and Illness. 5th ed. Philadelphia, PA: Lippincott Williams and Wilkins; 2005:216-267.
28. Janz N, Champion V, Strecher V. The health belief model. In: Glanz K, Rimer B, Lewis F, eds. Health Behavior and Health Education: Theory Research and Practice. 3rd ed. San Francisco, CA: Jossey-Bass; 2002:45-66.
29. Schure L, van den Heuvel E, Stewart R, Sanderman R, de Witte L, Meyboom-de Jong B. Beyond stroke: description and evaluation of an effective intervention to support family caregivers of stroke patients. Patient Educ Couns. 2006;62:46-55.
30. van den Heuvel ETP, Witte LPd, Stewart RE, Schure LM, Sanderman R, Meyboom-de Jong B. Long-term effects of a group support program and an individual support program for informal caregivers of stroke patients: which caregivers benefit the most? Patient Educ Couns. 2002;47(4):291-299.
31. Stewart MJ, Doble S, Hart G, Langille L, MacPherson K. Peer visitor support for family caregivers of seniors with stroke. Can J Nurs Res. 1998;30(2):87-117.
32. Frank G, Johnston M, Morrison V, Pollard B, MacWalter R. Perceived control and recovery from functional limitations: preliminary evaluation of a workbook-based intervention for discharged stroke patients. Br J Health Psychol. 2000;5(4):413-420.
33. Johnson J, Pearson V. The effects of a structured education course on stroke survivors living in the community. Rehabil Nurs. 2000;25(2):59-65.
34. Larson J, Franzen-Dahlin A, Billing E, von Arbin M, Murray V, Wredling R. The impact of a nurse-led support and education programme for spouses of stroke patients: a randomized controlled trial. J Clin Nurs. 2005;14:995-1003.
35. Rodgers H, Atkinson C, Bond S, Suddes M, Dobson R, Curless R. Randomized controlled trial of a comprehensive stroke education program for patients and caregivers. Stroke. 1999;30:2585-2591.
36. Rimmer JH, Braunschweig C, Silverman K, Riley B, Creviston T, Nicola T. Effects of a short-term health promotion intervention fora predominantly African-American group of stroke survivors. Am J Prev Med. 2000;18(4):332-338.
37. Grant JS, Elliott TR, Newman Giger J, Bartolucci AA. Social problem-solving telephone partnerships with family caregivers of persons with stroke. Int J Rehabil Res. 2001;24(3):181-189.
38. Goldberg G, Segal M, Berk S, Schall R, Gershkoff AT. Stroke transition after inpatient rehabilitation. Top Stroke Rehabil. 1997;4:64-79.
39. Baranowski T, Perry C, Parcel G. How individuals, environments, and health behavior interact: social cognitive theory. In: Glanz K, Rimer B, Lewis F, eds. Health Behavior and Health Education: Theory, Research and Practice. San Francisco, CA: Jossey-Bass; 2002:165-184.
40. Thomas C, Parry A. Research on users' views about stroke services: towards an empowerment research paradigm or more of the same? Physiotherapy. 1996;82(1):6-12.
41. Johnson J, Pearson V, McDivitt L. Stroke rehabilitation: assessing stroke survivors' long-term learning needs. Rehabil Nurs. 1997;22(5):243-248.
42. Castro CM, King AC. Telephone-assisted counseling for physical activity. Exerc Sport Sci Rev. 2002;30(2):64-68.
43. Bhogal S, Teasell R, Foley N, Speechley M. Community reintergration after stroke. Top Stroke Rehabil. 2003;10(2):107-129.
44. Coulter A, Ellins J. Effectiveness of strategies for informing, educating, and involving patients. BMJ. 2007;335(7609):24-27.
45. Theis SL, Johnson JH. Strategies for teaching patients: a meta-analysis. Clin Nurse Spec. 1995;9(2):100-105.
46. Johnson A, Sandford J. Written and verbal information versus verbal information only for patients being discharged from acute hospital settings to home: systematic review. Health Educ Res. 2005;20(4):423-429.
47. Griffin J, McKenna K, Tooth L. Written health education materials: making them more effective. Aust Occup Ther J. 2003;50:170-177.
48. Hoffmann T, McKenna K. Analysis of stroke patients' and carers' reading ability and the content and design of written materials: recommendations for improving written stroke information. Patient Educ Couns. 2006;60(3):286-293.
49. Griffin J, McKenna K, Tooth L. Discrepancy between older clients' ability to read and comprehend and the reading level of written educational materials used by occupational therapists. Am J Occup Ther. 2006,60(1):70-80.
50. Rose T, Worrall L, McKenna K. The effectiveness of aphasia-friendly principles for printed health education materials for people with aphasia following stroke. Aphasiology. 2003;17(10):947-963.
51. Hoffmann T, Worrall L. Designing effective written health education materials: considerations for health professionals Disabil Rehabil. 2004;26(19):1166-1173.
52. Sullivan K, O'Conor F. A readability analysis of Australian stroke information. Top Stroke Rehabil. 2001;7:52-60.
53. Worrall L, Howe T, Rose T. Educating clients with speech and language impairments. In: McKenna K, Tooth L, eds. Client Education: A Partnership Approach. Sydney, Australia: UNSW Press; 2006:206-225.
54. Brennan A, Worrall L, McKenna K. The relationship between specific features of aphasia-friendly written material and comprehension of written material for people with aphasia: an exploratory study. Aphasiology. 2005;19(8):693-711.
55. Skinner CS, Campbell MK, Rimer BK, Curry S, Prochaska JO. How effective is tailored print communication? Ann Behav Med. 1999;21(4):290-298.
56. Hoffmann T, McKenna K, Worrall L, Read S. Randomised trial of a computer-generated tailored written education package for patients following stroke. Age Ageing. 2007;36(3):280-286.
57. Lowe D, Sharma A, Leathley M. The CareFile Project: a feasibility study to examine the effects of an individualised information booklet on patients after stroke. Age Ageing. 2007;26:83-89.
58. Owens J. Accessible information for people with complex communication needs. Augmentative Alternative Communication. 2006;22(3):196-208.
59. Rose T, Worrall L, McKenna K, Hoffmann TC, Hickson L. Unpublished data; 2008.
60. Easton K, Zemen D, Kwiatkowski S. Developing and implementing a stroke education series for patients and families. Rehabil Nurs. 1994;19(6):348-351.
61. Griffin E, McKenna K, Worrall L. Stroke education materials on the World Wide Web: an evaluation of their quality and suitability. Top Stroke Rehabil. 2004;11(3):29-40.
62. Buckley KM, Tran BQ, Prandoni CM. Receptiveness, use and acceptance of telehealth by caregivers of stroke patients in the home. Online J Issues Nurs. 2004;9(3):9.
63. Maasland E, Koudstaal PJ, Habbema JDF, Dippel DWJ. Effects of an individualized multimedia computer program for health education in patients with a recent minor stroke or transient ischemic attack - a randomized controlled trial. Acta Neurol Scand. 2007;115(1):41-48.
64. Elasy TA, Ellis SE, Brown A, Pichert JW. A taxonomy for diabetes educational interventions. Patient Educ Couns. 2001;43(2):121-127.
65. Gallagher P. Comprehensive education plan for a discrete stroke population: needs, considerations, and gaps. Axon. 1999:88-92.
66. Kalra L, Evans A, Perez I, et al. Training carers of stroke patients: randomised controlled trial. BMJ. 2004;328(7448):1099.
67. Wenzel L, Glanz K, C L. Stress, coping and health behavior. In: Glanz K, BK R, Lewis F, eds. Health Behavior and Health Education: Theory, Research and Practice. San Francisco, CA: Jossey-Bass; 2002:210-239.
68. McKenna K, Liddle J. Educating older clients. In: McKenna K, Tooth L, eds. Client Education: A Partnership Approach for Health Practitioners. Sydney, Australia: UNSW Press; 2006:183-205.
69. Printz-Feddersen V. Group process effect on the caregiver burden. J Neurosci Nurs. 1990;22(3):164-168.
70. Lawler J, Dowswell G, Hearn J, Forster A, Young J, Lawler J. Recovering from stroke: a qualitative investigation of the role of goal setting in late stroke recovery. J Adv Nurs. 1999;30(2):401-409.
71. McClain C. Collaborative rehabilitation goal setting. Top Stroke Rehabil. 2005;12(4):56-60.
72. Roberts J, Browne GB, Streiner D, et al. Problem-solving counselling or phone-call support for outpatients with chronic illness: effective for whom? Can J Nurs Res. 1995;27(3):111-137.
73. Lui MHL, Ross FM, Thompson DR. Supporting family careqivers in stroke care: a review of the evidence for problem solving. Stroke. 2005;36(11):2514-2522.
74. Grant J, Elliott T, Weaver M, Bartolucci A, Giger J. Telephone intervention with family caregivers of stroke survivors after rehabilitation. Stroke. 2002;33(8):2060-2065.
75. Lorig K, Ritter P, Laurent D, Plant K. Internet-based chronic disease self-management: a randomized trial. Med Care. 2006;44(11):964-971.
76. Lorig K, Ritter P, Stewart A, et al. Chronic disease self-management program: 2-year health status and health care utilization outcomes. Med Care. 2001;39(11):1217-1223.
77. Jones F. Strategies to enhance chronic disease self-management: how can we apply this to stroke? Disabil Rehabil. 2006;28(13-14):841-847.
78. Kendall E, Catalano T, Kuipers P, Posner N, Buys N, Charker J. Recovery following stroke: the role of self-management education. Soc Sci Med. 2007;64(3):735-746.
79. Rodgers H, Bond S, Curless R. Inadequacies in the provision of information to stroke patients and their families. Age Ageing. 2001;30(2):129-133.
80. Hoffmann T, McKenna K, Herd C, Wearing S. Written education materials for stroke patients and their carers: perspectives and practices of health professionals. Top Stroke Rehabil. 2007;14(1):88-97.
81. Broadstock MJ, Hill D. Evaluation and impact of promotion of a cancer helpline to cancer patients through their specialists. Patient Educ Couns. 1997;32(3):141-146.
82. Knight K, Worrall L, Rose T. The provision of health information to stroke patients within an acute hospital setting: what actually happens and how do patients feel about it? Top Stroke Rehabil. 2006;13(1):78-97.
83. McKenna KT, Tooth LR, King D, et al. Older patients request more information: a survey of use of written patient education materials in general practice. Aust J Ageing. 2003;22(1):15-19.
84. Best JT. Effective teaching for the elderly: back to basics. Orthop Nurs. 2001;20(3):46-52.
85. Fleming J, Ownsworth T. Educational partnerships with clients who have cognitive impairment. In: McKenna K, Tooth L, eds. Client Education: A Partnership Approach for Health Practitioners. Sydney, Australia: UNSW Press; 2006:246-269.
86. Tse S, Lloyd CA, McKenna K. When clients are from diverse linguistic and cultural backgrounds In: McKenna K, Tooth L, eds. Client Education: A Partnership Approach for Health Practitioners. Sydney, Australia: UNSW Press; 2006:307-266.
87. Gonzalez V, Lorig K. Working cross-culturally. In: Lorig K, ed. Patient Education: A Practical Approach. 3rd ed. Thousand Oaks, CA: Sage Publications, Inc.; 2001:163-182.
88. The National Aphasia Association. Impact of Aphasia on Patients and Families. Available at: http://www.aphasia.org/aphasia_community/ impact_of_aphasia_on_patients_and_families.html. Accessed March 18, 2008.
89. Worrall L, Rose T, Howe T, McKenna K, Hickson L. Developing an evidence-base for accessibility for people with aphasia. Aphasiology. 2007;21(1):124-136.