1,919
Views
19
CrossRef citations to date
0
Altmetric
Original Articles

Exploring participant perspectives of community aphasia group participation: from “I know where I belong now” to “Some people didn’t really fit in”

, ORCID Icon & ORCID Icon
Pages 139-163 | Received 10 May 2017, Accepted 22 Oct 2017, Published online: 01 Nov 2017

References

  • Attard, M., Lanyon, L., Togher, L., & Rose, M. (2015). Consumer perspectives on community aphasia groups: A narrative literature review in the context of psychological well-being. Aphasiology, 29, 983–1019. doi:10.1080/02687038.2015.1016888
  • Biggerstaff, D., & Thompson, A. S. (2008). Interpretative phenomenological analysis (IPA): A qualitative methodology of choice in healthcare research. Qualitative Research in Psychology, 5, 214–224. doi:10.1080/14780880802314304
  • Bishop, M. (2005). Quality of life and psychosocial adaptation to chronic illness and acquired disability: A conceptual and theoretical synthesis. Journal of Rehabilitation, 71, 5–13.
  • Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101. doi:10.1191/1478088706qp063oa
  • Brown, K., Davidson, B., Worrall, L., & Howe, T. (2013). “Making a good time”: The role of friendship in living successfully with aphasia. International Journal of Speech-Language Pathology, 15, 165–175. doi:10.3109/17549507.2012.692814
  • Brown, K., Worrall, L., Davidson, B., & Howe, T. (2010). Snapshots of success: An insider perspective on living successfully with aphasia. Aphasiology, 24, 1267–1295. doi:10.1080/02687031003755429
  • Charmaz, K. (1983). Loss of self: A fundamental form of suffering in the chronically ill. Sociology of Health & Illness, 5, 131–136. doi:10.1111/1467-9566.ep10491512
  • Corsten, S., Schimpf, E., Konradi, J., Keilmann, A., & Hardering, F. (2015). The participants’ perspective: How biographic-narrative intervention influences identity negotiation and quality of life in aphasia. International Journal of Language & Communication Disorders, 50, 788–800. doi:10.1111/1460-6984.12173
  • Cruice, M., Worrall, L., & Hickson, L. (2011). Reporting on psychological well-being of older adults with chronic aphasia in the context of unaffected peers. Disability and Rehabilitation, 33, 219–228. doi:10.3109/09638288.2010.503835
  • Cruice, M., Worrall, L., Hickson, L., & Murison, R. (2003). Finding a focus for quality of life with aphasia: Social and emotional health, and psychological well-being. Aphasiology, 17, 333–353. doi:10.1080/02687030244000707
  • Dalemans, R., De Witte, L., Beurskens, A., Van Den Heuvel, W., & Wade, D. (2010). An investigation into the social participation of stroke survivors with aphasia. Disability and Rehabilitation, 32, 1678–1685. doi:10.3109/09638281003649938
  • Davidson, B., Howe, T., Worrall, L., Hickson, L., & Togher, L. (2008). Social participation for older people with aphasia: The impact of communication disability on friendships. Topics in Stroke Rehabilitation, 15, 325–340. doi:10.1310/tsr1504-325
  • Douglas, J., Dyson, M., & Foreman, P. (2006). Increasing leisure activity following severe traumatic brain injury: Does it make a difference? Brain Impairment, 7, 107–118. doi:10.1375/brim.7.2.107
  • Elman, R. (2007). Group treatment of neurogenic communication disorders: The expert clinician’s approach (2nd ed.). San Diego, CA: Plural Publishing.
  • Elman, R. (2011). Starting an aphasia center? Seminars in Speech & Language, 32, 268–272. doi:10.1055/s-0031-1286180
  • Elman, R. (2016). Aphasia centres and the life participation approach to aphasia: A paradigm shift. Topics in Language Disorders, 36, 154–167. doi:10.1097/TLD.0000000000000087
  • Elman, R., & Bernstein-Ellis, E. (1999). Psychosocial aspects of group communication treatment: Preliminary findings. Seminars in Speech & Language, 20, 65–71. doi:10.1055/s-2008-1064009
  • Fox, L., Ginley, S., & Poulsen, S. (2004). A residential approach to conversational intervention. SIG 2 Perspectives on Neurophysiology and Neurogenic Speech and Language Disorders, 14, 4–10. doi:10.1044/nnsld14.4.4
  • Gruenewald, T., Karlamangla, A., Greendale, G., Singer, B., & Seeman, T. (2007). Feelings of usefulness to others, disability, and mortality in older adults: The MacArthur study of successful aging. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 62, 28–37. doi:10.1093/geronb/62.1.P28
  • Hagerty, B., Lynch-Sauer, J., Patusky, K., Bouwsema, M., & Collier, P. (1992). Sense of belonging: A vital mental health concept. Archives of Psychiatric Nursing, 6, 172–177. doi:10.1016/0883-9417(92)90028-H
  • Hagerty, B., & Williams, R. (1999). The effects of sense of belonging, social support, conflict, and loneliness on depression. Nursing Research, 48, 215–219. doi:10.1097/00006199-199907000-00004
  • Hinckley, J. (2006). Finding messages in bottles: Living successfully with stroke and aphasia. Topics in Stroke Rehabilitation, 13, 25–36. doi:10.1310/FLJ3-04DQ-MG8W-89EU
  • Hoen, B., Thelander, M., & Worsley, J. (1997). Improvement in psychological well-being of people with aphasia and their families: Evaluation of a community-based programme. Aphasiology, 11, 681–691. doi:10.1080/02687039708249415
  • Holland, A. (2006). Living successfully with aphasia: Three variations on the theme. Topics in Stroke Rehabilitation, 13, 44–51. doi:10.1310/13D7-R31R-8A0D-Y74G
  • Holland, A. (2007a). Counseling/coaching in chronic aphasia: Getting on with life. Topics in Language Disorders, 27, 339–350. doi:10.1097/01.TLD.0000299888.24241.dd
  • Holland, A. (2007b). The power of aphasia groups: Celebrating Roger Ross. In R. Elman (Ed.), Group treatment of neurogenic communication disorders: The expert clinician’s approach (pp. 249–256). San Diego, CA: Plural Publishing.
  • Holland, A. (2010). Lessons from a clinical life in aphasia. Topics in Stroke Rehabilitation, 17, 13–19. doi:10.1310/tsr1701-13
  • Howe, T., Rotherham, A., Tillard, G., & Wyles, C. (2011). Group treatment for people with aphasia. Acquiring Knowledge in Speech, Language and Hearing, 13, 2–6.
  • Husserl, E. (1931). Ideas: General introduction to pure phenomenology. (W. Gibson, Trans.). London, UK: Allen & Unwin.
  • Kagan, A. (1998). Supported conversation for adults with aphasia: Methods and resources for training conversation partners. Aphasiology, 12, 816–830. doi:10.1080/02687039808249575
  • Kagan, A., Cohen-Schneider, R., Sherman, C., & Podolsky, L. (2007). Groups in the Aphasia Institute’s Introductory Program: Preparing to live successfully with aphasia. In R. Elman (Ed.), Group treatment of neurogenic communication disorders: The expert clinician’s approach (2nd ed., pp. 211–232). San Diego, CA: Plural Publishing.
  • Kagan, A., & Kimelman, M. (1995). Informed consent in aphasia research: Myth or reality. Clinical Aphasiology, 23, 65–75.
  • Kendall, E., & Buys, N. (1998). An integrated model of psychosocial adjustment following acquired disability. Journal of Rehabilitation, 64, 16–20.
  • Krause, N., Herzog, R., & Baker, E. (1992). Providing support to others and well-being in later life. Journal of Gerontology, 47, 300–311. doi:10.1093/geronj/47.5.P300
  • Lanyon, L., Worrall, L., & Rose, M. (2017). “It’s not really worth my while”: Understanding contextual factors contributing to individual decisions to participate in community aphasia groups. Manuscript submitted for publication.
  • Laplante-Levesque, A., Hickson, L., & Worrall, L. (2010). Factors influencing rehabilitation decisions of adults with acquired hearing impairment. International Journal of Audiology, 49, 497–507. doi:10.3109/14992021003645902
  • Le Dorze, G., Salois-Bellerose, É., Alepins, M., Croteau, C., & Hallé, M. (2014). A description of the personal and environmental determinants of participation several years post-stroke according to the views of people who have aphasia. Aphasiology, 28, 421–439. doi:10.1080/02687038.2013.869305
  • Legg, L., Stott, D., Ellis, G., & Sellars, C. (2007). Volunteer Stroke Service (VSS) groups for patients with communication difficulties after stroke: A qualitative analysis of the value of groups to their users. Clinical Rehabilitation, 21, 794–804. doi:10.1177/0269215507077301
  • Liamputtong, P. (2009). Qualitative data analysis: Conceptual and pratical considerations. Health Promotion Journal of Australia, 20, 133–139.
  • Liechty, J., & Braun, M. (2006). Loss and hope: Strategies for coping with aphasia. Topics in Stroke Rehabilitation, 13, 84–86. doi:10.1310/83A2-EJTR-1HHU-7GWE
  • MacNair-Semands, R., & Lese, K. (2000). Interpersonal problems and the perception of therapeutic factors in group therapy. Small Group Research, 31, 158–174. doi:10.1177/104649640003100202
  • MacNair-Semands, R., Ogrodniczuk, J., & Joyce, A. (2010). Structure and initial validation of a short form of the Therapeutic Factors Inventory. International Journal of Group Psychotherapy, 60, 245–281. doi:10.1521/ijgp.2010.60.2.245
  • Mumby, K., & Whitworth, A. (2012). Evaluating the effectiveness of intervention in long-term aphasia post-stroke: The experience from CHANT (Communication Hub for Aphasia in North Tyneside). International Journal of Language & Communication Disorders, 47, 398–412. doi:10.1111/j.1460-6984.2012.00153.x
  • Mumby, K., & Whitworth, A. (2013). Adjustment processes in chronic aphasia after stroke: Exploring multiple perspectives in the context of a community-based intervention. Aphasiology, 27, 462–489. doi:10.1080/02687038.2013.772559
  • Nicholas, M. (2012). The importance of aphasia community programs in supporting self-determination in PWA. SIG 2 Perspectives on Neurophysiology and Neurogenic Speech and Language Disorders, 22, 36–43. doi:10.1044/nnsld22.1.36
  • Northcott, S., & Hilari, K. (2011). Why do people lose their friends after a stroke? International Journal of Language & Communication Disorders, 46, 524–534. doi:10.1111/j.1460-6984.2011.00079.x
  • 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, 1–12. doi:10.1044/2016_JSLHR-L-15-0201
  • Patton, M. (2002). Qualitative research & evaluation methods (3rd ed.). London, UK: Sage.
  • Penn, C. (1993). Aphasia therapy in South Africa: Some pragmatic and personal perspectives. In A. Holland & M. Forbes (Eds.), Aphasia Treatment (pp. 25–53). New York, NY: Springer.
  • Perry, A., Morris, M., Unsworth, C., Duckett, S., Skeat, J., Dodd, K., … Reilly, K. (2004). Therapy outcome measures for allied health practitioners in Australia: The AusTOMs. International Journal for Quality in Health Care, 16, 285–291. doi:10.1093/intqhc/mzh059
  • Pound, C., Parr, S., Lindsay, J., & Woolf, C. (2000). Beyond Aphasia: Therapies for living with communication disability. Bicester, UK: Speechmark Publishing Ltd.
  • Purdy, M., & Hindenlang, J. (2005). Educating and training caregivers of persons with aphasia. Aphasiology, 19, 377–388. doi:10.1080/02687030444000822
  • Rath, J., Simon, D., Langenbahn, D., Sherr, R., & Diller, L. (2003). Group treatment of problem-solving deficits in outpatients with traumatic brain injury: A randomized outcome study. Neuropsychological Rehabilitation, 13, 461–488. doi:10.1080/09602010343000039
  • Rose, M., & Attard, M. (2015). Practices and challenges in community aphasia groups in Australia: Results of a national survey. International Journal of Speech-Language Pathology, 17, 241–251. doi:10.3109/17549507.2015.1010582
  • 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, 169–180. doi:10.3109/17549507.2013.794474
  • Rose, T., Worrall, L., Hickson, L., & Hoffmann, T. (2011). Aphasia friendly written health information: Content and design characteristics. International Journal of Speech-Language Pathology, 13, 335–347. doi:10.3109/17549507.2011.560396
  • Rotherham, A., Howe, T., & Tillard, G. (2015). “We just thought that this was Christmas”: Perceived benefits of participating in aphasia, stroke, and other groups. Aphasiology, 29, 965–982. doi:10.1080/02687038.2015.1016887
  • Rubin, H., & Rubin, I. (2012). Qualitative interviewing: The art of hearing data (3rd ed.). Thousand Oaks, CA: Sage.
  • Sandelowski, M. (2001). Real qualitative researchers do not count: The use of numbers in qualitative research. Research in Nursing & Health, 24, 230–240. doi:10.1002/nur.1025
  • Schwartz, C., & Sendor, M. (1999). Helping others help oneself: Response shift effects in peer support. Social Science & Medicine, 48, 1563–1575. doi:10.1016/S0277-9536(99)00049-0
  • Shadden, B., & Agan, J. (2004). Renegotiation of identity: The social context of aphasia support groups. Topics in Language Disorders, 24, 174–186. doi:10.1097/00011363-200407000-00005
  • Smith, J., Flowers, P., & Larkin, M. (2009). Interpretative phenomenological analysis. London, UK: Thousand Oaks.
  • Tamplin, J., Baker, F., Jones, B., Way, A., & Lee, S. (2013). “Stroke a Chord”: The effect of singing in a community choir on mood and social engagement for people living with aphasia following stroke. NeuroRehabilitation, 32, 929–941.
  • Tasca, G. A., Cabrera, C., Kristjansson, E., MacNair-Semands, R., Joyce, A. S., & Ogrodniczuk, J. S. (2016). The therapeutic factor inventory-8: Using item response theory to create a brief scale for continuous process monitoring for group psychotherapy. Psychotherapy Research, 26, 131–145. doi:10.1080/10503307.2014.963729
  • Tregea, S., & Brown, K. (2013). What makes a successful peer-led aphasia support group? Aphasiology, 27, 581–598. doi:10.1080/02687038.2013.796506
  • van der Gaag, A., Smith, L., Davis, S., Moss, B., Cornelius, V., Laing, S., & Mowles, C. (2005). Therapy and support services for people with long-term stroke and aphasia and their relatives: A six-month follow-up study. Clinical Rehabilitation, 19, 372–380. doi:10.1191/0269215505cr785oa
  • Vickers, C. (2010). Social networks after the onset of aphasia: The impact of aphasia group attendance. Aphasiology, 24, 902–913. doi:10.1080/02687030903438532
  • Whitworth, A., Leitão, S., Breese, M., Cato, L., & Cartwright, J. (2015). Volunteer-led aphasia groups in the community. Journal of Clinical Practice in Speech-Language Pathology, 17, 68–74.
  • Worrall, L., Hudson, K., Khan, A., Ryan, B., & Simmons-Mackie, N. (2017). Determinants of living well with aphasia in the first year post stroke: A prospective cohort study. Archives of Physical Medicine and Rehabilitation, 98, 235–240. doi:10.1016/j.apmr.2016.06.020
  • Worrall, L., Sherratt, S., Rogers, P., Howe, T., Hersh, D., Ferguson, A., & Davidson, B. (2010). What people with aphasia want: Their goals according to the ICF. Aphasiology, 25, 309–322. doi:10.1080/02687038.2010.508530

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.