428
Views
27
CrossRef citations to date
0
Altmetric
Original Articles

Do People With Aphasia Want Written Stroke and Aphasia Information? A Verbal Survey Exploring Preferences for When and How to Provide Stroke and Aphasia Information

, , &
Pages 79-98 | Published online: 05 Jan 2015

REFERENCES

  • Murdoch BE. Acquired Speech and Language Disorders: A Neuro anatomical and Functional Approach. Cheltenham, UK: Stanley Thornes; 1997.
  • Matsumoto N, Whisnant JP, Kurland LT, Okazaki H. Natural history of stroke in Rochester, Minnesota, 1955 through 1969: an extension of a previous study, 1945 through 1954. Stroke. 1973;4(1): 20–29.
  • Wade D, Hewer R, David R, Enderby P. Aphasia after stroke: natural history and associated deficits. Neurol Neurosurg Psychiatry. 1986;49(1):11–16.
  • Barnes MP, Ward AB. Textbook of Rehabilitation Medicine. Oxford: Oxford University Press; 2000.
  • Worrall L, Rose T, Howe T, et al. Access to written information for people with aphasia. Aphasiology. 2005;19(10/11):923–929.
  • Rose TA, Worrall LE, McKenna K. The effectiveness of aphasia-friendly principles for printed health education materials for people with aphasia following stroke. Aphasiology. 2003;1 7(1 0): 947–963.
  • Rose TA, Worrall LE, McKenna KT, Hickson LM, Hoffmann TC. Do people with aphasia receive written stroke and aphasia information? Aphasiology. 2009;23(3):364–392.
  • Worrall L, Rose T, Howe T, McKenna K, Hickson L. Developing and evidence-base for accessibility for people with aphasia. Aphasiology. 2007;21(1): 134–136.
  • Berarducci M, Cooper L, Giles V. Aphasia-friendly materials: are we really producing them? Acquir Knowledge Speech Lang Hear. 2007;9(3):99–103.
  • Eames S, McKenna K, Worrall L, Read S. The suitability of written education materials for stroke survivors and their carers. Top Stroke Rehabil. 2003;10(3):70–83.
  • 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 Counsel. 2006;60(3):286–293.
  • Worrall L, Howe T, Rose T. Educating clients with speech and language impairments. In: McKenna K, Tooth L, eds. Client Education: A Partnership Approach for Health Practitioners. Sydney: UNSW Press Ltd; 2006:206–225.
  • Gardner H, Denes G, Zurif E. Critical reading at the sentence level. Cortex. 1975;11(1):60–72.
  • Parr S, Byng S, Gilpin S, Ireland C. Talking About Aphasia: Living with Loss of Language After Stroke. Buckingham: Open University Press; 1997.
  • National Aphasia Association. Aphasia Bill of Rights. 2005. Available at: http://www.aphasia.org/docs/Bill%20of%20Rights.pdf. Accessed March 18, 2008.
  • 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.
  • Simmons-Mackie N, Kagan A, O'Neill Christie C, Huijbregts M, McEwen S, Willems J. Communicative access and decision making for people with aphasia: implementing sustainable healthcare systems change. Aphasiology. 2007;21(1):39–66.
  • Cruice M. Issues of access and inclusion with aphasia. Aphasiology. 2007;21(1):3–8.
  • Greveson G, James O. Improving long-term outcome after stroke - the views of patients and carers. Health Trends. 1991;23(4):161–162.
  • Hoffmann T, McKenna K, Worrall L, Read S. Evaluating current practice in the provision of written information to stroke patients and their carers. Intl Ther Rehabil. 2004;11 (7):303–31 O.
  • Suhonen R, Nenonen H, Laukka A, Valimaki M. Patients' informational needs and information received do not correspond in hospital. Issues Clin Nurs. 2005;14(10):1167–1176.
  • Elman R, Ogar J, Elman S. Aphasia: awareness, advocacy and activism. Aphasiology. 2000; 14(5616):455–1459.
  • Maycock J. Role of health professionals in patient education. Ann Rheumatic Dis. 1991;50(Suppl 3):429–434.
  • O'Mahony P, Rodgers H, Thomson R, Dobson R, James 0. Satisfaction with information and advice received by stroke patients. Clin Rehabil. 1997;11(1):68–72.
  • Philipp R, Hughes A, Wood N, Burns-Cox C, Cook N, Fletcher G. Information needs of patients and visitors in a district general hospital. I Royal Soc Promotion Health. 1990;110(1):10–12.
  • Kessels R. Patients' memoryfor medical information. I Royal Soc Med. 2003;96(5):219–222.
  • Klein-Fedyshin M, Burda M, Epstein B, Lawrence B. Collaborating to enhance patient education and recovery. I Med Libr Assoc. 2005;93(4):440–445.
  • Edwards G. Good practice for keeping stroke patients and carers informded. Professional Nurse. 2003;18(9):529–532.
  • Cameron JI, Gignac MA. "Timing it right": a conceptual framework for addressing the support needs of family caregivers to stroke survivors from the hospital to the home. Patient Educ Counsel. 2008;70(3):305–314.
  • 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(7): 88–97.
  • Hanger H, Wilkinson T. Stroke education: can we rise to the challenge? Age Ageing. 2001;30(2): 113–114.
  • 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(1):45–52.
  • National Stroke Foundation Australia. Walk in our shoes: stroke survivors and carers report on support after stroke. 2007. Available at: www.strokefoundation.com.au. Accessed April 10, 2009.
  • 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.
  • Wachters-Kaufmann C, Schuling J, The H, Meyboom-de Jong B. Actual and desired information provision after a stroke. Patient Educ Counsel. 2005;56(2):211–217.
  • Smith J, Forster A, Young J, Knapp P, House A, Wright J. Information provision for stroke patients and their caregivers. Cochrane Database Syst Rev. 2008; 2:CD001919. doi: 10.1002/14651858. CD001919.pub2.
  • Eames S, Hoffmann T, McKenna K, Worrall. L. Community-based stroke information for clients with stroke and their carers: is there congruency between actual and recommended practice? Top Stroke Rehabil. 2008;15(4):295–306.
  • Ford S, Fallowfield A, Hall S, Lewis S. The influence of audiotapes on patient participation in the cancer consultation. Eur I Cancer. 1995;31(13-14):2264–2269.
  • Eames S, Hoffmann T, Worrall. L, Read S. Delivery styles and formats for different stroke information topics: patient and carer preferences. Submitted for publication.
  • Wiles R, Pain H, Buckland S, McLellan L. Providing appropriate information to patients and carers following a stroke. I Adv Nurs. 1998;28(4): 794–801.
  • Patterson C, Teale C. Influence of written information on patients' knowledge of their diagnosis. Age Ageing. 1997;26(1):41–42.
  • Farrell-Miller P, Gentry R How effective are you patient education materials? Guidelines for developing and evaluating written education materials. Diabetes Educator. 1989;15(5):418–422.
  • Myerscough PR. Talking with Patients: A Basic Clinical Tool. Oxford: Oxford University Press; 1989.
  • Bernier MJ. Developing and evaluating printed education materials: a prescriptive model for quality. Orthop Nurs. 1993;12(6):39–46.
  • Lomer M, McLellan D. Informing hospital patients and their relatives about stroke. Clin Rehabil. 1987;1(1):33–37.
  • Wellwood I, Dennis M, Warlow C. Patients' and carers' satisfaction with acute stroke management. Age Ageing. 1995;24(6):519–524.
  • Wellwood I, Dennis M, Warlow C. Perceptions and knowledge of stroke among surviving patients with stroke and their carers. Age Ageing. 1994;23(4):293–298.
  • Pound P, Gompertz P, Ebrahim S. Patients' satisfaction with stroke services. Clin Rehabil. 1994;8(1):7–17.
  • Garrett D, Cowdell F. Information needs of patients and carers following stroke. Nurs Older People. 2005;17(6):14–16.
  • Braunack-Mayer A, Hersh D. An ethical voice in the silence of aphasia: judging understanding and consent in people with aphasia. I Clin Ethics. 2001;12(4):388–396.
  • Kagan AK, Kimelman DZ. Informed consent in aphasia research: myth or reality? Clin Aphasiol. 1995;23:65–75.
  • Kertesz A. The Western Aphasia Battery. New York: The Psychological Corporation, Harcourt Brace Jovanovich; 1982.
  • Sandelowski M. Whatever happened to qualitative description? Res Nurs Health. 2000;23(4): 334–340.
  • La Pointe L, Horner J. Reading Comprehension Battery for Aphasia 2. Austin, TX: Pro-Ed; 1998.
  • Brennan AD, Worrall LE, McKenna KT. The relationship between specific features of aphasia-friendly written material and comprehension of written material for people with aphasia. Aphasiology. 2005;19(8):693–711.
  • Polgar S, Thomas S. Introduction to Research in the Health Sciences. London: Churchill-Livingston; 1995.
  • Worrall L, Davidson B, Hersh D, Ferguson A, Howe T, Sherratt S. Meeting the needs of people with aphasia, their families and speech language pathologists: tensions in the goal-setting process. Presented at: Clinical Aphasiology Conference; 2009; Colorado.
  • Arnaert A, Filteau N, Sourial R. Stroke patients in the acute care phase: role of hope in self-healing. Holistic Nurs Practice. 2006;20(3):137–146.
  • Bluvol A, Ford-Gilboe M. Hope, health work and quality of life in families of stroke survivors. I Adv Nurs. 2004;48(4):322–332.
  • Aleligay A, Worrall LE, Rose TA. Readability of written health information provided to people with aphasia. Aphasiology. 2008;22(4): 383–407.
  • van Veenendaal H, Grinspun DR, Adriaanse HR Educational needs of stroke survivors and their family members, as perceived by themselves and by health professionals. Patient Educ Counsel. 1996;28:265–276.
  • Avent J, Gilista S, Wallace S, Jackson J, Nishioka J, Yip W. Family information needs about aphasia. Aphasiology. 2005;19(3/4/5):365–375.
  • Sharry R, McKenna K, Tooth L. Occupational therapists' use and perceptions of written client education materials. Am I Occup Ther. 2002;56(5):573–576.
  • Marshall RC. Having the courage to be competent: persons and families living with aphasia. I Commun Disord. 2002;35(2):139–152.
  • McKenna K, Tooth L, Strong J, Ottenbacher K, Connell J, Cleary M. Predicting discharge outcomes for stroke patients in Australia. Am J Phys Med Rehabil. 2002;81(1):47–56.
  • Granger CV, Hamilton BB, Fiedler RC. Discharge outcomes after stroke rehabilitation. Stroke. 1992;23(7):978–982.
  • Sim TC, Lum CM, Sze FK, Or KH, Woo J. Outcome after stroke rehabilitation in Hong Kong. Clin Rehabil. 1997;11(3):236–242.
  • Kapral M, Devon J, Winter A, Wang J, Peters A, Bondy S. Gender differences in stroke care decision-making. Med Care. 2006;44(1):70–80.
  • Stewart DE, Abbey SE, Shnek ZM, Irvine J, Grace SL. Gender differences in health information needs and decisional preferences in patients recovering from an acute ischemic coronary event. Psychosomatic Med. 2004;66(1):42–48.
  • Hoffmann T, Cochrane T. What education do stroke patients receive in Australian hospitals? Patient Educ Counsel. 2009;77(2):187–191.
  • Roter D, Hall J. Doctors Talking with Patients/Patients Talking with Doctors: Improving Communication in Medical Visits. Westport: Auburn House; 1992.
  • Kagan A, LeBlanc K. Motivating for infrastructure change: toward a communicatively accessible, participation-based stroke care system for all those affected by aphasia. I Commun Disord. 2002;35(2):153–169.
  • Mason I. Developing and implementing aphasia-friendly stroke information for patients, families and carers. Nurs Times. 2006;102(47):32–33.
  • Lewinter M, Mikkelsen S. Patients' experience of rehabilitation after stroke. Disabil Rehabil. 1995;7(1):3–9.
  • Shafer DN. Aphasia: the great leveler. ASHA Leader. 2008;13(8):26–27.
  • Hartwell L. Patients educating patients. Nephrol News Issues. 2003;17(10):69.
  • Schneider AT, Pancioli AM, Khoury JC, et al. Trends in community knowledge of the warning signs and risk factors for stroke. I Am Med Assoc. 2003;289(3):343–346.
  • Pribble JM, Goldstein KM, Majersik JJ, Barsan WG, Brown DL, Morgenstern LB. Stroke information reported on local television news. Stroke. 2006;37(6):1556–1557.
  • Cartwright J, Elliot K. Promoting strategic television viewing in the context of progressive language impairment. Aphasiology. 2009;23(2):266–285.
  • Trevena L, Davey H, Barratt A, Butow P, Caldwell P. A systematic review on communication with patients about evidence. I Eval Clin Practice. 2006;12(1):13–23.
  • Gagliano ME. A literature review on the efficacy of video in patient education. I Med Educ. 1988;63(10):785–792.
  • Hutchison C, McCreaddie M. The process of developing audiovisual patient information: challenges and opportunities. Issues Clin Nurs. 2007;16(11):2047–2055.
  • Weinhardt J, Parker C. Developing a patient education video as a tool to case manage patients who have had strokes. Nurs Care Management. 1999;4(4):198–200.
  • Kleemeier CP, Hazzard AP. Videotaped parent education in pediatric waiting rooms Patient Educ Counsel. 1988;6(3):122–124.
  • Wagner LS, Wagner TH. The effect of age on the use of health and self-care information: confronting the stereotype. Gerontologist. 2003;43(3): 318–324.
  • 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: UNSW Press; 2006:128–158.
  • Denby F, Harvey R. An educational intervention for stroke rehabilitation patients and their families: healthy living after stroke. Top Stroke Rehabil. 2003;9(4):34–45.
  • Hoffmann T, Tooth L. Talking with clients about evidence. In: Hoffmann T, Bennett S, Del Mar C, eds. Evidence-Based Practice: Across the Health Professionals. Sydney: Elsevier; 2010:276–299.
  • Queensland Government: Queensland Health. Speech Pathology and Stroke: General Information [brochure]. Brisbane: Queensland Government; 2003.
  • National Stroke Foundation Australia. Stroke Attacks the Brain: Answers to the Top Ten Questions About Stroke [brochure]. Victoria: National Stroke Foundation; 2000.
  • National Stroke Foundation Australia. The Brain at Risk: Understanding and Preventing Stroke [booklet]. Victoria: National Stroke Foundation; 2002.
  • Donnan GA. What Is a Stroke? An Information Paper for Persons Affected by Stroke and Their Carers [information sheet]. Victoria: Brain Foundation Victoria; 2003.
  • Queensland Government: Queensland Health. Speech Pathology and Dysphasia: Difficulty with Comprehension and Expression [brochure]. Brisbane: Princess Alexandra Hospital Public Relations Unit.
  • Hudson C, Timms D. Speech and Communication Problems Following a Stroke [information sheet]. Victoria: Brain Foundation Victoria; 2003.
  • Podolosky L, Bindman B, Cohen-Schneider R. What Is Aphasia? An Interactive Booklet for Aphasic Adults, Their Families and Caregivers. Toronto: Aphasia Institute; 1996.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.