Information, communication, advocacy, and complaint: how the spouse of a man with aphasia managed his discharge from hospital

References

• Almborg, A.-H., Ulander, K., Thulin, A., & Berg, S. (2009). Discharge planning of stroke patients: The relatives’ perceptions of participation. Journal of Clinical Nursing, 18(6), 857–865. https://doi.org/10.1111/j.1365-2702.2008.02600.x
   PubMed Web of Science ®Google Scholar
• Anderson, S., & Marlett, N. J. (2004). The language of recovery: How effective communication of information is crucial to restructuring post-stroke life. Topics in Stroke Rehabilitation, 11(4), 55–67. https://doi.org/10.1310/NPC4-01YV-P66Q-VM9R
   PubMedGoogle Scholar
• Avent, J., Glista, S., Wallace, S., Jackson, J., Nishioka, J., & Yip, W. (2005). Family information needs about aphasia. Aphasiology, 19(3–5), 365–375. https://doi.org/10.1080/02687030444000813
   Web of Science ®Google Scholar
• Bakas, T., Kroenke, K., Plue, L., Perkins, S., & Williams, L. (2006). Outcomes among family caregivers of aphasic versus nonaphasic stroke survivors. Rehabilitation Nursing, 31(1), 33–42. https://doi.org/10.1002/j.2048-7940.2006.tb00008.x
   PubMed Web of Science ®Google Scholar
• Croteau, C., & Le Dorze, G. (2001). Spouses’ perceptions of persons with aphasia. Aphasiology, 15(9), 811–825. https://doi.org/10.1080/02687040143000221
   Web of Science ®Google Scholar
• Denman, A. (1998). Determining the needs of spouses caring for aphasic partners. Disability and Rehabilitation, 20(11), 411–423. https://doi.org/10.3109/09638289809166103
   PubMed Web of Science ®Google Scholar
• Eames, S., Hoffmann, T., Worrall, L., & Read, S. (2010). Stroke patients’ and carers’ perception of barriers to accessing stroke information. Topics in Stroke Rehabilitation, 17(2), 69–78. https://doi.org/10.1310/tsr1702-69
   PubMed Web of Science ®Google Scholar
• Ellis-Hill, C., Robison, J., Wiles, R., McPherson, K., Hyndman, D., & Ashburn, A. (2009). Going home to get on with life: Patients and carers experiences of being discharged from hospital following a stroke. Disability and Rehabilitation, 31(2), 61–72. https://doi.org/10.1080/09638280701775289
   PubMed Web of Science ®Google Scholar
• Forster, A., Brown, L., Smith, J., House, A., Knapp, P., Wright, J., & Young, J. (2012). Information provision for stroke patients and their caregivers. Cochrane Database of Systematic Reviews, (11), Art. No.: CD001919. https://doi.org/10.1002/14651858.CD001919.pub3
   PubMed Web of Science ®Google Scholar
• Foster, A., Worrall, L., Rose, M., & O’Halloran, R. (2016). ‘I do the best I can’: An in-depth exploration of the aphasia management pathway in the acute hospital setting. Disability and Rehabilitation, 38(18), 1765–1779. https://doi.org/10.3109/09638288.2015.1107766
   PubMed Web of Science ®Google Scholar
• Grawburg, M., Howe, T., Worrall, L., & Scarinci, N. (2013). A qualitative investigation into third-party functioning and third-party disability in aphasia: Positive and negative experiences of family members of people with aphasia. Aphasiology, 27(7), 828–848. https://doi.org/10.1080/02687038.2013.768330
   Web of Science ®Google Scholar
• Halliday, M. A. K. (2009). Complementarity and complexity in language. In J. J. Webster (Ed.), The Essential Halliday. Continuum International Publishing Group (pp.35-54).
   Google Scholar
• Halliday, M. A. K., & Matthiessen, C. M. I. M. (2004). An introduction to functional grammar. 3rd ed. Arnold.
   Google Scholar
• Hemsley, B., Georgiou, A., Hill, S., Rollo, M., Steel, J., & Balandin, S. (2016). An integrative review of patient safety in studies on the care and safety of patients with communication disabilities in hospital. Patient Education and Counseling, 99(4), 501–511. https://doi.org/10.1016/j.pec.2015.10.022
   PubMed Web of Science ®Google Scholar
• Hemsley, B., Werninck, M., & Worrall, L. (2013). “That really shouldn’t have happened”: People with aphasia and their spouses narrate adverse events in hospital. Aphasiology, 27(6), 706–722. https://doi.org/10.1080/02687038.2012.748181
   Web of Science ®Google Scholar
• Hersh, D. (2009). Breaking the Connection: Why is it so difficult to talk about discharge with our clients with aphasia? International Journal of Speech Language Pathology, 11/2(2), 147–154. https://doi.org/10.1080/17549500802579103
   Web of Science ®Google Scholar
• Hilari, K., Owen, S., & Farrelly, S. J. (2007). Proxy and self-report agreement on the stroke and aphasia quality of life scale-39. Journal of Neurology, Neurosurgery, and Psychiatry, 78(10), 1072–1075. https://doi.org/10.1136/jnnp.2006.111476
   PubMed Web of Science ®Google Scholar
• Hilton, R., Leenhouts, S., Webster, J., & Morris, J. (2014). Information, support and training needs of relatives of people with aphasia: Evidence from the literature. Aphasiology, 28(7), 797–822. https://doi.org/10.1080/02687038.2014.906562
   Web of Science ®Google Scholar
• Holland, A., & Fridriksson, J. (2001). Aphasia management during the early phases of recovery following stroke. American Journal of Speech-Language Pathology, 10(1), 19–28. https://doi.org/1058-0360/01/1001-0019
   Web of Science ®Google Scholar
• Howe, T., Davidson, B., Worrall, L., Hersh, D., Ferguson, A., Sherratt, S., & Gilbert, J. (2012). “You needed to rehab … families as well”: Family members’ own goals for aphasia rehabilitation. International Journal of Language and Communication Disorders, 47/5(5), 511–521. https://doi.org/10.1111/j.1460-6984.2012.00159.x
   Web of Science ®Google Scholar
• Kagan, A., & Simmons-Mackie, N. (2013). Changing the aphasia narrative. ASHA Leader, 18, 6–8.
   Google Scholar
• Kertesz, A. (1982). Western Aphasia Battery. Grune and Stratton.
   Google Scholar
• Le Dorze, G., & Signori, F. (2010). Needs, barriers and facilitators experienced by spouses of people with aphasia. Disability and Rehabilitation, 32(13), 1073–1987. https://doi.org/10.3109/09638280903374121
   PubMed Web of Science ®Google Scholar
• Lutz, B. J., Young, M. E., Cox, K. J., Martz, C., & Creasy, K. R. (2011). The crisis of stroke: Experiences of patients and their family caregivers. Topics in Stroke Rehabilitation, 18(6), 786–797. https://doi.org/10.1310/tsr1806-786
   PubMed Web of Science ®Google Scholar
• Martin, J. R., & White, P. R. R. (2005). The language of evaluation: Appraisal in English. Palgrave Macmillan.
   Google Scholar
• Michallet, B., Le Dorze, G., & Tétreault, S. (2001). The needs of spouses caring for severely aphasic persons. Aphasiology, 15(8), 731–747. https://doi.org/10.1080/02687040143000087
   Web of Science ®Google Scholar
• Nätterlund, B. (2010). Being a close relative of a person with aphasia. Scandinavian Journal of Occupational Therapy, 17(1), 18–28. https://doi.org/10.3109/11038120902833218
   PubMed Web of Science ®Google Scholar
• Parr, S., Byng, S., Gilpin, S., & Ireland, C. (1997). Talking about aphasia: Living with loss of language after stroke. Open University Press.
   Google Scholar
• Perry, L., & Middleton, S. (2011). An investigation of family carers’ needs following stroke survivors’ discharge from acute hospital care in Australia. Disability and Rehabilitation, 33(19–20), 1890–1900. https://doi.org/10.3109/09638288.2011.553702
   PubMed Web of Science ®Google Scholar
• Pincock, S. (2004). Poor communication lies at the heart of NHS complaints. BMJ, 328(7430), 10. https://doi.org/10.1136/bmj.328.7430.10-d
   Google Scholar
• Plank, A., Mazzoni, V., & Cavada, L. (2012). Becoming a caregiver: New family carers’ experience during the transition from hospital to home. Journal of Clinical Nursing, 21(13–14), 2072–2082. https://doi.org/10.1111/j.1365-2702.2011.04025.x
   PubMed Web of Science ®Google Scholar
• Riessman, C. K. (2008). Narrative methods for the human sciences. Sage Publications.
   Google Scholar
• Rose, T., Wallace, S., & Leow, S. (2019). Family members’ experiences and preferences for receiving aphasia information during early phases in the continuum of care. International Journal of Speech-language Pathology, 21(5), 470–482. https://doi.org/10.1080/17549507.2019.1651396
   PubMed Web of Science ®Google Scholar
• Servaes, P., Draper, B., Conroy, P., & Bowring, G. (1999). Informal carers of aphasic stroke patients: Stresses and interventions. Aphasiology, 13(12), 889–900. https://doi.org/10.1080/026870399401632
   Web of Science ®Google Scholar
• Shafer, J. S., Shafer, P. R., & Hayley, K. L. (2019). Caregivers navigating rehabilitative care for people with aphasia after stroke: A multi-lens perspective. International Journal of Language and Communication Disorders, 54(4), 634–644. https://doi.org/10.1111/1460-6984.12467
   PubMed Web of Science ®Google Scholar
• Tyson, S., & Turner, G. (2000). Discharge and follow-up for people with stroke: What happens and why. Clinical Rehabilitation, 14(4), 381–392. https://doi.org/10.1191/0269215500cr331oa
   PubMed Web of Science ®Google Scholar
• Visser-Meily, A., Post, M., Gorter, J. W., Berlekom, S. B. V., Bos, T. V. D., & Lindeman, E. (2006). Rehabilitation of stroke patients needs a family-centred approach. Disability and Rehabilitation, 28(24), 1557–1561. https://doi.org/10.1016/j.pec.2004.02.013
   PubMed Web of Science ®Google Scholar
• Visser-Meily, A., Post, M., Schepers, V., & Lindeman, E. (2005). Spouses’ quality of life 1 year after stroke: Prediction at the start of clinical rehabilitation. Cerebrovascular Diseases, 20(6), 443–448. https://doi.org/10.1159/000088983
   PubMed Web of Science ®Google Scholar
• Wachters-Kaufmann, C., Schuling, J., The, H., & Meyboom-de Jong, B. (2005). Actual and desired information provision after a stroke. Patient Education and Counselling, 56(2), 211–217. https://doi.org/10.1016/j.pec.2004.02.012
   PubMed Web of Science ®Google Scholar
• Worrall, L. (2019). The seven habits of highly effective aphasia therapists: The perspective of people living with aphasia. International Journal of Speech-language Pathology, 21(5), 438–447. https://doi.org/10.1080/17549507.2019.1660804
   PubMed Web of Science ®Google Scholar
• Worrall, L., Sherratt, S., Rogers, P., Howe, T., Hersh, D., Ferguson, A., & Davidson, B. (2011). What people with aphasia want: Their goals according to the ICF. Aphasiology, 25(3), 309–322. https://doi.org/10.1080/02687038.2010.508530
   Web of Science ®Google Scholar
• Zemva, N. (1999). Aphasic patients and their families: Wishes and limits. Aphasiology, 13(3), 219–224. https://doi.org/10.1080/0268703
   Web of Science ®Google Scholar