Supporting people with post-stroke aphasia to live well: A cross-sectional survey of Speech & Language Therapists in Ireland.
Community-Based Participatory Research
Health services research
Language Therapy
aphasia
cross-sectional survey
rehabilitation
stroke
Journal
Health & social care in the community
ISSN: 1365-2524
Titre abrégé: Health Soc Care Community
Pays: England
ID NLM: 9306359
Informations de publication
Date de publication:
11 2020
11 2020
Historique:
received:
13
11
2019
revised:
02
04
2020
accepted:
19
04
2020
pubmed:
29
5
2020
medline:
6
5
2021
entrez:
29
5
2020
Statut:
ppublish
Résumé
Living well with post-stroke aphasia is supported by responsive, collaborative heath and related services, aphasia information and training for people with aphasia (PWA) and their social networks, and opportunities to contribute and participate autonomously in their communities. Several international surveys indicate shortcomings in the provision of long-term support and, in Ireland, while there is a lack of data around service provision for PWA, there is evidence that post-acute stroke services are fragmented and under-resourced. The aim of this study was to survey Speech & Language Therapists (SLTs), due to their unique role in aphasia management, to understand what SLT and related support services and aphasia information and training are currently available to support living well with aphasia in Ireland. We developed and piloted a self-administered, web-based cross-sectional survey with questions informed by a systematic review and qualitative evidence synthesis around living well with aphasia, and with input from a Public and Patient Involvement aphasia advisory group. Data from 95 SLTs working with PWA were analysed using descriptive statistics. Although SLT was generally available for PWA, the results highlight access barriers and evidence-practice gaps in terms of the amount, intensity and timing of SLT to be maximally effective and there was a lack of PWA input into service design and evaluation. Access to other relevant supports such as mental health services was inconsistent and there was a lack of community support for families. There were shortcomings in access to aphasia information/training for PWA, families, friends and other healthcare professionals. There is a need for a coordinated and standardised approach to supporting PWA across Ireland. This study addresses an evidence gap around the provision of stroke services for PWA and is part of a larger project aiming to produce recommendations for improving person-centred support to facilitate living well with aphasia.
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
2105-2116Informations de copyright
© 2020 John Wiley & Sons Ltd.
Références
Aphasia United. (2018). Best practice recommendations. Retrieved from http://www.aphasiaunited.org/best-practice-recommendations/
Ayerbe, L., Ayis, S., Wolfe, C. D., & Rudd, A. G. (2013). Natural history, predictors and outcomes of depression after stroke: Systematic review and meta-analysis. British Journal of Psychiatry, 202(1), https://doi.org/10.1192/bjp.bp.111.107664
Baker, C., Worrall, L., Rose, M., Hudson, K., Ryan, B., & O'Byrne, L. (2017). A systematic review of rehabilitation interventions to prevent and treat depression in post-stroke aphasia. Disability and Rehabilitation, 19, 1-23. https://doi.org/10.1080/09638288.2017.1315181
Baker, C., Worrall, L., Rose, M., & Ryan, B. (2019). Stroke health professionals’ management of depression after post-stroke aphasia: A qualitative study. Disability and Rehabilitation, 1-12, https://doi.org/10.1080/09638288.2019.1621394
Black-Schaffer, R., & Osberg, J. (1990). Return to work after stroke: Development of a predictive model. Archives of Physical Medicine and Rehabilitation, 71, 285-290.
Brady, M. C., Fredrick, A., & Williams, B. (2013). People with aphasia: Capacity to consent, research participation and intervention inequalities. International Journal of Stroke, 8(3), 193-196. https://doi.org/10.1111/j.1747-4949.2012.00900.x
Brady, M. C., Kelly, H., Godwin, J., Enderby, P., & Campbell, P. (2016). Speech and language therapy for aphasia following stroke. Cochrane Database of Systematic Reviews, 1(6), CD000425. https://doi.org/10.1002/14651858.CD000425.pub4
Burke, S., McGettrick, G., Foley, K., Manikandan, M., & Barry, S. (2020). The 2019 neuro-rehabilitation implementation framework in Ireland: Challenges for implementation and the implications for people with brain injuries. Health Policy, 124(3), 225-230. https://doi.org/10.1016/j.healthpol.2019.12.018
Burke, S., Normand, C., Barry, S., & Thomas, S. (2016). From universal health insurance to universal healthcare? The shifting health policy landscape in Ireland since the economic crisis. Health Policy, 120(3), 235-240. https://doi.org/10.1016/j.healthpol.2015.12.001
Burns, K. E. A., Duffett, M., Kho, M. E., Meade, M. O., Adhikari, N. K. J., Sinuff, T., & … Academy Group. (2008). A guide for the design and conduct of self-administered surveys of clinicians. Canadian Medical Association Journal, 179(3), 245-252. https://doi.org/10.1503/cmaj.080372
Burns, M., Baylor, C., Dudgeon, B., Starks, H., & Yorkston, K. (2015). Asking the stakeholders: Perspectives of individuals with aphasia, their family members, and physicians regarding communication in medical interactions. American Journal of Speech-Language Pathology, 24(3), 341-357. https://doi.org/10.1044/2015_AJSLP-14-0051
Carroll, C. (2017). Qualitative evidence synthesis to improve implementation of clinical guidelines. BMJ, 356, j80. https://doi.org/10.1136/bmj.j80
Chapey, R., Duchan, J. F., Elman, R., Garcia, L. J., Kagan, A., Lyon, J., & Simmons-Mackie, N. (2001).Life participation approach to aphasia: A statement of values for the future. Retrieved from http://www.asha.org/public/speech/disorders/LPAA.htm
Clinical Centre for Excellence (CCRE) in Aphasia Rehabilitation. (2014). Aphasia Rehabilitation Best Practice Statements 2014.Comprehensive supplement to the Australian Aphasia Rehabilitation Pathway. Brisbane, Queensland.
Code, C., & Heron, C. (2003). Services for aphasia, other acquired adult neurogenic communication and swallowing disorders in the United Kingdom, 2000. Disability and Rehabilitation, 25(21), 1231-1237. https://doi.org/10.1080/09638280310001599961
Code, C., & Petheram, B. (2011). Delivering for aphasia. International Journal of Speech-Language Pathology, 13(1), 3-10. https://doi.org/10.3109/17549507.2010.520090
Community Services Subgroup of the National Stroke Working Group. (2011). Community Stroke Services Survey Report 4 Summary Report. Dublin, Ireland: HSE Strategy and Programmes Directorate.
Dalemans, R., Wade, D. T., van den Heuvel, W. J., & de Witte, L. P. (2009). Facilitating the participation of people with aphasia in research: A description of strategies. Clinical Rehabilitation, 23, 948-959. https://doi.org/10.1177/0269215509337197
Engelter, S. T., Gostynski, M., Papa, S., Frei, M., Born, C., Ajdacic-Gross, V., … Lyrer, P. A. (2006). Epidemiology of aphasia attributable to first ischemic stroke: Incidence, severity, fluency, etiology, and thrombolysis. Stroke, 37(6), 1379-1384. https://doi.org/10.1161/01.STR.0000221815.64093.8c
European Observatory on Health Systems and Policies. (2016). Health system reviews (HiT series). Retrieved from http://www.euro.who.int/en/about-us/partners/observatory/publications/health-system-reviews-hits
Eysenbach, G. (2004). Improving the quality of Web surveys: The Checklist for Reporting Results of Internet E-Surveys (CHERRIES). Journal of Medical Internet Research, 6(3), e34. https://doi.org/10.2196/jmir.6.3.e34
Flowers, H. L., Skoretz, S. A., Silver, F. L., Rochon, E., Fang, J., Flamand-Roze, C., & Martino, R. (2016). Poststroke aphasia frequency, recovery, and outcomes: A systematic review and meta-analysis. Archives of Physical Medicine and Rehabilitation, 97(12), 2188-2201.e8. https://doi.org/10.1016/j.apmr.2016.03.006
Foster, A., O’Halloran, R., Rose, M., & Worrall, L. (2016). “Communication is taking a back seat”: Speech pathologists’ perceptions of aphasia management in acute hospital settings. Aphasiology, 30(5), 585-608. https://doi.org/10.1080/02687038.2014.985185
Foster, A., Worrall, L., Rose, M., & O'Halloran, R. (2015). ‘That doesn't translate’: The role of evidence-based practice in disempowering speech pathologists in acute aphasia management. International Journal of Language and Communication Disorders, 50(4), 547-563. https://doi.org/10.1111/1460-6984.12155
Fox, J. (1994). Designing research: Basics of survey construction. Minimally Invasive Surgical Nursing, 8(77-9).
Grawburg, M., Howe, T., Worrall, L., & Scarinci, N. (2013). Third-party disability in family members of people with aphasia: A systematic review. Disability and Rehabilitation, 35(16), 1324-1341. https://doi.org/10.3109/09638288.2012.735341
Hersh, D. (2017). From individual to global: Human rights and aphasia. International Journal of Speech-Language Pathology, 20(1), 39-43. https://doi.org/10.1080/17549507.2018.1397749
Hickey, J., Shrubsole, K., Worrall, P. L., & Power, E. (2019). Implementing aphasia recommendations in the acute setting: Speech-language pathologists’ perspectives of a behaviour change intervention. Aphasiology, 33(5), 606-628. https://doi.org/10.1080/02687038.2018.1561416
Hilari, K., Klippi, A., Constantinidou, F., Horton, S., Penn, C., Raymer, A., … Worrall, L. (2015). An international perspective on quality of life in aphasia: A survey of clinician views and practices from sixteen countries. Folia Phoniatrica Et Logopaedica, 67(3), 119-130. https://doi.org/10.1159/000434748
Hilari, K., Needle, J., & Harrison, K. (2012). What are the important factors in health-related quality of life for people with aphasia? A systematic review. Archives of Physical Medicine and Rehabilitation, 93(1 SUPP), S86-S95. https://doi.org/10.1016/j.apmr.2011.05.028
Hilari, K., & Northcott, S. (2006). Social support in people with chronic aphasia. Aphasiology, 20(1), 17-36. https://doi.org/10.1080/02687030500279982
Hilari, K., & Northcott, S. (2016). “Struggling to stay connected”: Comparing the social relationships of healthy older people and people with stroke and aphasia. Aphasiology, 31, 674-687. https://doi.org/10.1080/02687038.2016.1218436
Horgan, F., Walsh, M., Galvin, R., Macey, C., & Loughnane, C. (2014). National Survey of Stroke Survivors 2013: Experiences and long-term needs reported by stroke survivors living in the community in Ireland. Dublin, Ireland: National Disability Authority/Irish Heart Foundation.
HSE. (2018). National Service Plan 2019. Retrieved from https://www.hse.ie/eng/services/publications/serviceplans/
HSE Quality and Clinical Care Directorate. (2012). Stroke Clinical Care Programme Model of Care. Retrieved from https://www.hse.ie/eng/about/who/cspd/ncps/stroke/moc/
Kagan, A. (1998). Supported conversation for adults with aphasia: Methods and resources for training conversation partners. Aphasiology, 12(9), 816-830. https://doi.org/10.1080/02687039808249575
Katz, R. C., Hallowell, B., Code, C., Armstrong, E., Roberts, P., Pound, C., & Katz, L. (2000). A multinational comparison of aphasia management practices. International Journal of Language and Communication Disorders, 35(2), 303-314. https://doi.org/10.1080/136828200247205
Kelly, H., Kennedy, F., Britton, H., McGuire, G., & Law, J. (2016). Narrowing the “digital divide”-Facilitating access to computer technology to enhance the lives of those with aphasia: A feasibility study. Aphasiology, 30(2), 133-163. https://doi.org/10.1080/02687038.2015.1077926
Kong, A. (2011). Family members' report on speech-language pathology and community services for persons with aphasia in Hong Kong. Disability and Rehabilitation, 33(25-26), 2633-2645. https://doi.org/10.3109/09638288.2011.579220
Kong, A., & Tse, C. (2018). Clinician survey on speech pathology services for people with aphasia in Hong Kong. Clinical Archives of Communication Disorders, 3(3), 201-212. https://doi.org/10.21849/cacd.2018.00409
Langlois, E. V., Tunçalp, Ö., Norris, S. L., Askewb, I., & Ghaffara, A. (2018). Qualitative evidence to improve guidelines and health decision-making. Bulletin of the World Health Organization, 96, 79-79A. https://doi.org/10.2471/BLT.17.206540
Luck, A., & Rose, M. (2007). Interviewing people with aphasia: Insights into method adjustments from a pilot study. Aphasiology, 21(2), 208-224. https://doi.org/10.1080/02687030601065470
Mackenzie, C., Le May, M., Lendrem, W., McGuirk, E., Marshall, J., & Rossiter, D. (1993). A survey of aphasia services in the United Kingdom. European Journal of Disorders of Communication, 28(1), 43-61. https://doi.org/10.3109/13682829309033142
Manning, M., MacFarlane, A., Hickey, A., & Franklin, S. (2019). Perspectives of people with aphasia post-stroke towards personal recovery and living successfully: A systematic review and thematic synthesis. PLoS ONE, 14(3), e0214200. https://doi.org/10.1371/journal.pone.0214200
Mc Menamin, R., Tierney, E., & Mac Farlane, A. (2015a). Addressing the long-term impacts of aphasia: How far does the Conversation Partner Programme go? Aphasiology, 29(8), 889-913. https://doi.org/10.1080/02687038.2015.1004155
Mc Menamin, R., Tierney, E., & Mac Farlane, A. (2015b). Who decides what criteria are important to consider in exploring the outcomes of conversation approaches? A participatory health research study. Aphasiology, 29(8), 914-938. https://doi.org/10.1080/02687038.2015.1006564
McElwaine, P., McCormack, J., & Harbison, J. (2015). On behalf of the National Stroke Programme Audit Steering Group IHF/HSE National Stroke Audit 2015. Dublin, Ireland: Irish Heart Foundation (IHF) & HSE.
McElwaine, P., McCormack, J., & Harbison, J. (2016). Irish Heart Foundation/HSE National Stroke Audit Rehabilitation Units 2016. Dublin, Ireland: Irish Heart Foundation (IHF) & HSE.
Morris, J., Franklin, S., & Menger, F. (2011). Returning to work with aphasia: A case study. Aphasiology, 25(8), 890-907. https://doi.org/10.1080/02687038.2010.549568
Muldoon, O., Walsh, S., Curtin, M., & Kinsella, E. (2017). Getting my life reset. Living with an acquired brain injury: The Irish experience. Retrieved from https://www.abiireland.ie/wp-content/uploads/2017/05/ABII-Getting-Reset-Report.pdf
Northcott, S., Burns, K., Simpson, A., & Hilari, K. (2015). 'Living with aphasia the best way I can': A feasibility study exploring solution-focused brief therapy for people with aphasia. Folia Phoniatrica Et Logopaedica, 67(3), 156-167. https://doi.org/10.1159/000439217
Northcott, S., Marshall, J., & Hilari, K. (2016). What factors predict who will have a strong social network following a stroke? Journal of Speech, Language, and Hearing Research, 59(4), 772-783. https://doi.org/10.1044/2016_JSLHR-L-15-0201
Northcott, S., Moss, B., Harrison, K., & Hilari, K. (2016). A systematic review of the impact of stroke on social support and social networks: Associated factors and patterns of change. Clinical Rehabilitation, 30(8), 811-831. https://doi.org/10.1177/0269215515602136
Northcott, S., Simpson, A., Moss, B., Ahmed, N., & Hilari, K. (2018). Supporting people with aphasia to ‘settle into a new way to be’: Speech and language therapists’ views on providing psychosocial support. International Journal of Language and Communication Disorders, 53(1), 16-29. https://doi.org/10.1111/1460-6984.12323
O'Cathain, A., & Thomas, K. J. (2004). "Any other comments?" Open questions on questionnaires - A bane or a bonus to research? BMC Medical Research Methodology, 4, 25-25. https://doi.org/10.1186/1471-2288-4-25
O'Halloran, R., Douglas, J., Cruice, M., Davidson, B., McKinley, K., & Bigby, C. (2019). Representation and reporting of communicatively vulnerable patients in patient experience research. International Journal of Speech-Language Pathology, 1-12, https://doi.org/10.1080/17549507.2019.1567815
O'Reilly-de Brún, M., de Brún, T., O'Donnell, C. A., Papadakaki, M., Saridaki, A., Lionis, C., … MacFarlane, A. (2018). Material practices for meaningful engagement: An analysis of participatory learning and action research techniques for data generation and analysis in a health research partnership. Health Expectations, 21(1), 159-170. https://doi.org/10.1111/hex.12598
Palmer, R., Witts, H., & Chater, T. (2018). What speech and language therapy do community dwelling stroke survivors with aphasia receive in the UK? PLoS ONE, 13(7), e0200096. https://doi.org/10.1371/journal.pone.0200096
Parr, S. (1997). Talking about aphasia: Living with loss of language after stroke. Buckingham, UK, Philadelphia, PA: Open University Press.
Pearl, G. (2014). Engaging with people who have aphasia. A set of resources for stroke researchers. London, UK: NHS National Institute for Health Research (NIHR)/Clinical Research Network Stroke.
Pound, C. (2013). An exploration of the friendship experiences of working-age adults with aphasia. (PhD). London, UK: Brunel University.
Prior, S. J., & Campbell, S. (2018). Patient and family involvement: A discussion of co-led redesign of healthcare services. Journal of Participatory Medicine, 10(1), e5. https://doi.org/10.2196/jopm.8957
Rohde, A., Worrall, L., & Le Dorze, G. (2013). Systematic review of the quality of clinical guidelines for aphasia in stroke management. Journal of Evaluation in Clinical Practice, 19(6), 994-1003. https://doi.org/10.1111/jep.12023
Rose, M., Ferguson, A., Power, E., Togher, L., & Worrall, L. (2014). Aphasia rehabilitation in Australia: Current practices, challenges and future directions. International Journal of Speech-Language Pathology, 16(2), 169-180. https://doi.org/10.3109/17549507.2013.794474
Rose, T., Worrall, L., Hickson, L., & Hoffmann, T. (2012). Guiding principles for printed education materials: Design preferences of people with aphasia. International Journal of Speech-Language Pathology, 14(1), 11-23. https://doi.org/10.3109/17549507.2011.631583
Rose, T., Worrall, L., McKenna, K., Hickson, L., & Hoffmann, T. (2009). Do people with aphasia receive written stroke and aphasia information? Aphasiology, 23(364-392), https://doi.org/10.1080/02687030802568108
Santo Pietro, M. J., Marks, D. R., & Mullen, A. (2019). When words fail: Providing effective psychological treatment for depression in persons with aphasia. Journal of Clinical Psychology in Medical Settings, 26(4), 483-494. https://doi.org/10.1007/s10880-019-09608-4
Shadden, B. (2005). Aphasia as identity theft: Theory and practice. Aphasiology, 19(3-5), 211-223. https://doi.org/10.1080/02687930444000697
Shrubsole, K., Worrall, L., & Power, E. (2019). Closing the evidence-practice gaps in aphasia management: Are we there yet? Where has a decade of implementation research taken us? A review and guide for clinicians. Aphasiology, 33(8), 970-995. https://doi.org/10.1080/02687038.2018.1510112
Shrubsole, K., Worrall, L., Power, E., & O’Connor, D. A. (2017). Recommendations for post-stroke aphasia rehabilitation: An updated systematic review and evaluation of clinical practice guidelines. Aphasiology, 31(1), 1-24. https://doi.org/10.1080/02687038.2016.1143083
Shrubsole, K., Worrall, L., Power, E., & O'Connor, D. A. (2018). Priorities for closing the evidence practice gaps in post-stroke aphasia rehabilitation: A scoping review. Archives of Physical Medicine and Rehabilitation, 99(7), 1413-1423. https://doi.org/10.1016/j.apmr.2017.08.474
Simmons-Mackie, N., & Damico, J. (2007). Access and social inclusion in aphasia: Interactional principles and applications. Aphasiology, 21(1), 81-97. https://doi.org/10.1080/02687030600798311
Simmons-Mackie, N., Raymer, A., & Cherney, L. R. (2016). Communication partner training in aphasia: An updated systematic. Review. Archives of Physical Medicine and Rehabilitation, 97(12), 2202-2221.e2208. https://doi.org/10.1016/j.apmr.2016.03.023
Thomas, S. A., Russell, C., Seed, R., Worthington, E., Walker, M. F., Macniven, J. A., & Lincoln, N. B. (2013). An evaluation of treatment integrity in a randomized trial of behavioural therapy for low mood in stroke patients with aphasia. Clinical Rehabilitation, 27(1097-1106), https://doi.org/10.1177/0269215513489579
Trebilcock, M., Worrall, L., Ryan, B., Shrubsole, K., Jagoe, C., Simmons-Mackie, N., … Le Dorze, G. (2019). Increasing the intensity and comprehensiveness of aphasia services: Identification of key factors influencing implementation across six countries. Aphasiology, 33(7), 865-887, https://doi.org/10.1080/02687038.2019.1602860
Verna, A., Davidson, B., & Rose, T. (2009). Speech-language pathology services for people with aphasia: A survey of current practice in australia. International Journal of Speech-Language Pathology, 11(3), 191-205. https://doi.org/10.1080/17549500902726059
von Elm, E., Altman, D., Egger, M., Pocock, S., Gøtzsche, P., & Vandenbroucke, J.; STROBE Initiative. (2007). The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement: Guidelines for reporting observational studies. PLoS Med, 16(4), e296. https://doi.org/10.1371/journal.pmed.0040296
Wallace, S. J., Worrall, L., Rose, T., Le Dorze, G., Cruice, M., Isaksen, J., … Gauvreau, C. A. (2016). Which outcomes are most important to people with aphasia and their families? An international nominal group technique study framed within the ICF. Disability and Rehabilitation, 3914, 1364-1379. https://doi.org/10.1080/09638288.2016.1194899
Walsh, M., Galvin, R., Loughnane, C., Macey, C., & Horgan, N. (2015). Factors associated with community reintegration in the first year after stroke: A qualitative meta-synthesis. Disability and Rehabilitation, 37, 1599-1608. https://doi.org/10.3109/09638288.2014.974834
World Health Organisation (WHO). (2001). International Classification of Functioning, Disability and Health (ICF). Geneva, Switzerland: World Health Organisation.
World Health Organisation (WHO). (2016). Framework on integrated, people-centred health services. Geneva, Switzerland: World Health Organisation.
Wray, F., & Clarke, D. (2017). Longer-term needs of stroke survivors with communication difficulties living in the community: A systematic review and thematic synthesis of qualitative studies. British Medical Journal Open, 7(10), e017944. https://doi.org/10.1136/bmjopen-2017-017944
Wray, F., Clarke, D., & Forster, A. (2017). Post-stroke self-management interventions: A systematic review of effectiveness and investigation of the inclusion of stroke survivors with aphasia. Disability and Rehabilitation, 40(11), 1237-1251. https://doi.org/10.1080/09638288.2017.1294206
Wren, M.-A., Gillespie, P., Smith, S., & Kearns, K. (2014). Towards earlier discharge, better outcomes, lower cost: Stroke rehabilitation in Ireland. Dublin, Ireland: Irish Heart Foundation.