Information, support and training needs of relatives of people with aphasia: Evidence from the literature

References

• Anderson, C. S., Linto, J., & Stewart-Wynne, E. G. (1995). A population-based assessment of the impact and burden of caregiving for long-term stroke survivors. Stroke, 26, 843–849. doi:10.1161/01.STR.26.5.843
   PubMed Web of Science ®Google Scholar
• Avent, J., Glista, S., Wallace, S., Jackson, J., Nishioka, J., & Yip, W. (2005). Family information needs about aphasia. Aphasiology, 19, 365–375. doi:10.1080/02687030444000813
   Web of Science ®Google Scholar
• Bakas, T., Kroenke, K., Plue, L. D., Perkins, S. M., & Williams, L. S. (2006). Outcomes among family caregivers of Aphasic versus nonaphasic stroke survivors. Rehabilitation Nursing, 31, 33–42. doi:10.1002/j.2048-7940.2006.tb00008.x
   PubMed Web of Science ®Google Scholar
• Blom Johansson, M., Carlsson, M., Östberg, P., & Sonnander, K. (2012). Communication changes and SLP services according to significant others of persons with aphasia. Aphasiology, 26, 1005–1028. doi:10.1080/02687038.2012.671927
   Web of Science ®Google Scholar
• Blom Johansson, M., Carlsson, M., Östberg, P., & Sonnander, K. (2013). A multiple-case study of a family-oriented intervention practice in the early rehabilitation phase of persons with aphasia. Aphasiology, 27, 201–226. doi:10.1080/02687038.2012.744808
   Web of Science ®Google Scholar
• Blom Johannson, M., Carlsson, M., & Sonnander, K. (2011). Working with families of persons with aphasia: A survey of Swedish speech and language pathologists. Disability and Rehabilitation, 33, 51–62. doi:10.3109/09638288.2010.486465
   Google Scholar
• Booth, S., & Swabey, D. (1999). Group training in communication skills for carers of adults with Aphasia. International Journal of Language & Communication Disorders, 34, 291–309. doi:10.1080/136828299247423
   Google Scholar
• Bowling, J. H. (1977). Emotional problems of relatives of dysphasic patients. Australian Journal of Human Communication Disorders, 5, 29–41.
   Google Scholar
• Brown, K., Worrall, L., Davidson, B., & Howe, T. (2011). Living successfully with aphasia: Family members share their views. Topics in Stroke Rehabilitation, 18, 536–548. doi:10.1310/tsr1805-536
   PubMed Web of Science ®Google Scholar
• Brumfitt, S., Atkinson, J., & Greated, C. (1994). The carer’s response to written information about acquired communication problems. Aphasiology, 8, 583–590. doi:10.1080/02687039408248683
   Web of Science ®Google Scholar
• Care Quality Commission. (2011). Supporting life after stroke: A review of services for people who have had a stroke and their carers. London: Author.
   Google Scholar
• Carnwath, T. C., & Johnson, D. A. (1987). Psychiatric morbidity among spouses of patients with stroke. BMJ, 294, 409–411. doi:10.1136/bmj.294.6569.409
   PubMed Web of Science ®Google Scholar
• Denman, A. (1998). Determining the needs of spouses caring for aphasic partners. Disability and Rehabilitation, 20, 411–423. doi:10.3109/09638289809166103
   PubMed Web of Science ®Google Scholar
• Department of Health. (2007). National stroke strategy. Retrieved from http://www.nhs.uk/NHSEngland/NSF/Pages/Nationalstrokestrategy.aspx
   Google Scholar
• Evans, R. L., Matlock, A.-L., Bishop, D. S., Stranahan, S., & Pederson, C. (1988). Family intervention after stroke: Does counseling or education help? Stroke, 19, 1243–1249. doi:10.1161/01.STR.19.10.1243
   PubMed Web of Science ®Google Scholar
• Forster, A., Smith, J., Young, J., Knapp, P., House, A., & Wright, J. (2001). Information provision for stroke patients and their caregivers. Cochrane Database System Review, 3:CD001919. The Cochrane Library.
   Google Scholar
• Greenwood, N., Mackenzie, A., Cloud, G., & Wilson, N. (2010). Loss of autonomy, control and independence when caring: A qualitative study of informal carers of stroke survivors in the first three months after discharge. Disability and Rehabilitation, 32, 125–133. doi:10.3109/09638280903050069
   PubMed Web of Science ®Google Scholar
• Greveson, G. C., Gray, C. S., French, J. M., & James, O. F. W. (1991). Long-term outcome for patients and carers following hospital admission for stroke. Age and Ageing, 20, 337–344. doi:10.1093/ageing/20.5.337
   PubMed Web of Science ®Google Scholar
• Hafsteinsdóttir, T. B., Vergunst, M., Lindeman, E., & Schuurmans, M. (2011). Educational needs of patients with a stroke and their caregivers: A systematic review of the literature. Patient Education and Counseling, 85, 14–25. doi:10.1016/j.pec.2010.07.046
   PubMed Web of Science ®Google Scholar
• Hilton, R., & Leenhouts, S. (2013). Recommendations from relatives of people with aphasia for information, support and training: A service audit tool (Unpublished Report). North East Trust for Aphasia & Newcastle University.
   Google Scholar
• Hinckley, J. J., & Packard, M. E. W. (2001). Family education seminars and social functioning of adults with chronic aphasia. Journal of Communication Disorders, 34, 241–254. doi:10.1016/S0021-9924(01)00049-1
   PubMed Web of Science ®Google Scholar
• Hoffmann, T., McKenna, K., Worrall, L., & Read, S. J. (2004). Evaluating current practice in the provision of written information to stroke patients and their carers. International Journal of Therapy and Rehabilitation, 11, 303–310.
   Google Scholar
• Horton, S., Mudd, D., & Lane, J. (1998). Is anyone speaking my language? International Journal of Language & Communication Disorders, 33, 126–131. doi:10.3109/13682829809179409
   PubMedGoogle 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 & Communication Disorders, 47, 511–521. doi:10.1111/j.1460-6984.2012.00159.x
   PubMed Web of Science ®Google Scholar
• Intercollegiate Stroke Working Party. (2012). National clinical guidelines for stroke (4th ed.). London: Royal College of Physicians.
   Google Scholar
• Kertesz, A. (1982). Western Aphasia battery. New York, NY: Grune & Stratton.
   Google Scholar
• Law, J., Huby, G., Irving, A.-M., Pringle, A.-M., Conochie, D., Haworth, C., & Burston, A. (2010). Reconciling the perspective of practitioner and service user: Findings from The Aphasia in Scotland study. International Journal of Language & Communication Disorders, 45, 551–560. doi:10.3109/13682820903308509
   PubMed Web of Science ®Google Scholar
• Le Dorze, G., & Brassard, C. (1995). A description of the consequences of aphasia on aphasic persons and their relatives and friends, based on the WHO model of chronic diseases. Aphasiology, 9, 239–255. doi:10.1080/02687039508248198
   Web of Science ®Google Scholar
• Le Dorze, G., & Signori, F.-H. (2010). Needs, barriers and facilitators experienced by spouses of people with aphasia. Disability and Rehabilitation, 32, 1073–1087. doi:10.3109/09638280903374121
   PubMed Web of Science ®Google Scholar
• Linebaugh, C. W., & Young-Charles, H. Y. (1978). The counseling needs of the families of aphasic patients. In R. Brookshire (Ed.), Clinical aphasiology: Conference proceedings (pp. 304–312). Minneapolis, MN: BRK Publishers.
   Google Scholar
• Mak, A. K. M., Mackenzie, A., & Lui, M. H. L. (2007). Changing needs of Chinese family caregivers of stroke survivors. Journal of Clinical Nursing, 16, 971–979. doi:10.1111/j.1365-2702.2006.01754.x
   PubMed Web of Science ®Google Scholar
• Manders, E., Mariën, A., & Janssen, V. (2011). Informing and supporting partners and children of persons with aphasia: A comparison of supply and demand. Logopedics Phoniatrics Vocology, 36, 139–144. doi:10.3109/14015439.2011.562534
   PubMed Web of Science ®Google Scholar
• Michallet, B., Le Dorze, G., & Tétreault, S. (2001). The needs of spouses caring for severely aphasic persons. Aphasiology, 15, 731–747. doi:10.1080/02687040143000087
   Web of Science ®Google Scholar
• Miller, N., Noble, E., Jones, D., Deane, K. H. O., & Gibb, C. (2011). Survey of speech and language therapy provision for people with Parkinson’s disease in the United Kingdom: Patients’ and carers’ perspectives. International Journal of Language & Communication Disorders, 46, 179–188.
   PubMed Web of Science ®Google Scholar
• National Institute for Health and Care Excellence (NICE). (2010). Quality standard 2 stroke. Retrieved from http://guidance.nice.org.uk/QS2
   Google Scholar
• Parr, S. (2007). Living with severe aphasia: Tracking social exclusion. Aphasiology, 21, 98–123. doi:10.1080/02687030600798337
   Web of Science ®Google Scholar
• Paul, N. A., & Sanders, G. F. (2010). Applying an ecological framework to education needs of communication partners of individuals with aphasia. Aphasiology, 24, 1095–1112. doi:10.1080/02687030903383720
   Web of Science ®Google Scholar
• Pound, C., Parr, S., & Duchan, J. (2001). Using partners’ autobiographical reports to develop, deliver, and evaluate services in aphasia. Aphasiology, 15, 477–493. doi:10.1080/02687040143000159
   Web of Science ®Google Scholar
• Purdy, M., & Hindenlang, J. (2005). Educating and training caregivers of persons with aphasia. Aphasiology, 19, 377–388. doi:10.1080/02687030444000822
   Web of Science ®Google Scholar
• Rau, M. T. (1991). Care gving in stroke. In D. E. Biegel, E. Sales, & R. Schulz (Eds.), Family caregiving in chronic illness: Alzheimer’s disease, cancer, heart disease, mental illness, and stroke (Vol. 1), Family Caregiver Applications Series. Newbury Park, CA: Sage Publications.
   Google Scholar
• Royal College and Speech and Language Therapists (RCSLT). (2005). Clinical guidelines. Bicester: Speechmark.
   Google Scholar
• Royal College of Speech and Language Therapists (RCSLT). (2009). Resource manual for commissioning and planning services for SLCN: Aphasia. London: Author.
   Google Scholar
• Schulz, R., Tompkins, C. A., & Rau, M. T. (1988). A longitudinal study of the psychosocial impact of stroke on primary support persons. Psychology and Aging, 3, 131–141. doi:10.1037/0882-7974.3.2.131
   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, 889–900. doi:10.1080/026870399401632
   Web of Science ®Google Scholar
• Simmons-Mackie, N., Kearns, K., & Potechin, G. (2005). Treatment of aphasia through family member training. Aphasiology, 19, 583–593. doi:10.1080/02687030444000408
   Web of Science ®Google Scholar
• The Stroke Association. (2013). Feeling overwhelmed: The emotional impact of stroke. Life after stroke campaign report. London: Stroke Association.
   Google Scholar
• Turner, S., & Whitworth, A. (2006). Clinicians’ perceptions of candidacy for conversation partner training in aphasia: How do we select candidates for therapy and do we get it right? Aphasiology, 20, 616–643. doi:10.1080/02687030600687860
   Web of Science ®Google Scholar
• Visser-Meily, A., Post, M., Gorter, J. W., Berlekom, S. B. V., Van Den Bos, T., & Lindeman, E. (2006). Rehabilitation of stroke patients needs a family-centred approach. Disability and Rehabilitation, 28, 1557–1561. doi:10.1080/09638280600648215
   PubMed Web of Science ®Google Scholar
• Wade, D. T., Hewer, R. L., David, R. M., & Enderby, P. M. (1986). Aphasia after stroke: Natural history and associated deficits. Journal of Neurology, Neurosurgery & Psychiatry, 49, 11–16. doi:10.1136/jnnp.49.1.11
   PubMed Web of Science ®Google Scholar
• Walker, E., & Jane Dewar, B. (2001). How do we facilitate carers’ involvement in decision making? Journal of Advanced Nursing, 34, 329–337. doi:10.1046/j.1365-2648.2001.01762.x
   PubMed Web of Science ®Google Scholar
• Webster, E. J. (1980). Home and family: Problems and pay offs. In E. Biegel, E. Sales, & R. Schulz (Eds.), Family care giving in chronic illness. NewBury Park, CA: Sage Publications.
   Google Scholar
• Whitworth, A., Perkins, L., & Lesser, R. (1997). Conversation analysis profile for people with aphasia (CAPPA). London: Whurr Publishers.
   Google Scholar
• Williams, S. E. (1993). The impact of aphasia on marital satisfaction. Archives of Physical Medicine and Rehabilitation, 74, 361–367.
   PubMed Web of Science ®Google Scholar
• World Health Organisation (WHO). (2001). International classification of functioning, disability and health (ICF). Geneva: Author.
   Google Scholar