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Original Articles

Balance and preference in activity participation for informal caregivers of people with aphasia: A questionnaire study

, , &
Pages 1182-1200 | Received 11 Feb 2019, Accepted 19 Aug 2019, Published online: 29 Aug 2019

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
  • Araújo, O., Lage, I., Cabrita, J., & Teixeira, L. (2015). Intervention in informal caregivers who take care of older people after a stroke (InCARE): Study protocol for a randomised trial. Journal of Advanced Nursing, 71, 2435–2443. doi:10.1111/jan.12697
  • Ashley, J. G., Ashley, M. J., Masel, B. E., Randle, K., Kreber, L. A., Singh, C., … Griesbach, G. S. (2018). The influence of post-acute rehabilitation length of stay on traumatic brain injury outcome: A retrospective exploratory study. Brain Injury, 32, 600–607. doi:10.1080/02699052.2018.1432896
  • Badr, H., & Acitelli, L. K. (2017). Re-thinking dyadic coping in the context of chronic illness. Current Opinion in Psychology, 13, 44–48. doi:10.1016/j.copsyc.2016.03.001
  • Bakas, T., Clark, P. C., Kelly-Hayes, M., King, R. B., Lutz, B. J., & Miller, E. L.; American Heart Association Council on Cardiovascular and Stroke Nursing and the Stroke Council. (2014). Evidence for stroke family caregiver and dyad interventions: A statement for healthcare professionals from the American Heart Association and American Stroke Association. Stroke, 45, 2836–2852. doi:10.1161/STR.0000000000000033
  • 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 : the Official Journal of the Association of Rehabilitation Nurses, 31, 33–42. doi:10.1002/j.2048-7940.2006.tb00008.x
  • Boyle, G. J., & Joss-Reid, J. M. (2004). Relationship of humour to health: A psychometric investigation. British Journal of Health Psychology, 9, 51–66. doi:10.1348/135910704322778722
  • 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
  • Cao, V., Chung, C., Ferreira, A., Nelken, J., Brooks, D., & Cott, C. (2010). Changes in activities of wives caring for their husbands following stroke. Physiotherapy Canada. Physiotherapie Canada, 62, 35–43. doi:10.3138/physio.62.1.35
  • Cheng, H. Y., Chair, S. Y., & Chau, J. P.-C. (2014). The effectiveness of psychosocial interventions for stroke family caregivers and stroke survivors: A systematic review and meta-analysis. Patient Education and Counseling, 95, 30–44. doi:10.1016/j.pec.2014.01.005
  • Christensen, J. M., & Anderson, J. D. (1989). Spouse adjustment to stroke: Aphasic versus nonaphasic partners. Journal of Communication Disorders, 22, 225–231. doi:10.1016/0021-9924(89)90018-X
  • Dalemans, R. J., de Witte, L. P., Beurskens, A. J., van Den Heuvel, W. J., & Wade, D. T. (2010). Psychometric properties of the community integration questionnaire adjusted for people with aphasia. Archives of Physical Medicine and Rehabilitation, 91, 395–399. doi:10.1016/j.apmr.2009.10.021
  • Fiori, K. L., Antonucci, T. C., & Cortina, K. S. (2006). Social network typologies and mental health among older adults. The Journals of Gerontology: Series B, Psychological Sciences and Social Sciences, 61, P25–32. doi:10.1093/geronb/61.1.P25
  • Godwin, K. M., Swank, P. R., Vaeth, P., & Ostwald, S. K. (2013). The longitudinal and dyadic effects of mutuality on perceived stress for stroke survivors and their spousal caregivers. Aging & Mental Health, 17, 423–431. doi:10.1080/13607863.2012.756457
  • Grawburg, M., Howe, T., Worrall, L., & Scarinci, N. (2013a). 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, 828–848. doi:10.1080/02687038.2013.768330
  • Grawburg, M., Howe, T., Worrall, L., & Scarinci, N. (2013b). Third-party disability in family members of people with aphasia: A systematic review. Disability and Rehabilitation, 35, 1324–1341. doi:10.3109/09638288.2012.735341
  • Griesbach, G. S., Kreber, L. A., Harrington, D., & Ashley, M. J. (2015). Post-acute traumatic brain injury rehabilitation: Effects on outcome measures and life care costs. Journal of Neurotrauma, 32, 704–711. doi:10.1089/neu.2014.3754
  • Grigorovich, A., Forde, S., Levinson, D., Bastawrous, M., Cheung, A. M., & Cameron, J. I. (2015). Restricted participation in stroke caregivers: Who is at risk? Archives of Physical Medicine and Rehabilitation, 96, 1284–1290. doi:10.1016/j.apmr.2015.03.004
  • Haley, K. L., Womack, J., Helm-Estabrooks, N., Lovette, B., & Goff, R. (2013). Supporting autonomy for people with aphasia: Use of the Life Interests and Values (LIV) cards. Topics in Stroke Rehabilitation, 20, 22–35. doi:10.1310/tsr2001-22
  • Haley, K. L., Womack, J. L., Harmon, T. G., McCulloch, K. L., & Faldowski, R. A. (2018). Life activity choices by people with aphasia: Repeated interviews and proxy agreement. Aphasiology, 1–21. doi:10.1080/02687038.2018.1506087
  • Haley, K. L., Womack, J. L., Helm-Estabrooks, N., Caignon, D., & McCulloch, K. L. (2010). The life interest and values cards. Chapel Hill, NC: University of North Carolina Department of Allied Health Sciences.
  • Hallé, M.-C., & Le Dorze, G. (2014). Understanding significant others’ experience of aphasia and rehabilitation following stroke. Disability and Rehabilitation, 36, 1774–1782. doi:10.3109/09638288.2013.870608
  • Herero, V. G., & Extremera, N. (2010). Daily life activities as mediators of the relationship between personality variables and subjective well-being among older adults. Personality and Individual Differences, 49, 124–129. doi:10.1016/j.paid.2010.03.019
  • Hilari, K., Northcott, S., Roy, P., Marshall, J., Wiggins, R. D., Chataway, J., & Ames, D. (2010). Psychological distress after stroke and aphasia: The first six months. Clinical Rehabilitation, 24, 181–190. doi:10.1177/0269215509346090
  • Hopko, D. R., Lejuez, C. W., Ruggiero, K. J., & Eifert, G. H. (2003). Contemporary behavioral activation treatments for depression: Procedures, principles, and progress. Clinical Psychology Review, 23, 699–717. doi:10.1016/S0272-7358(03)00070-9
  • Jennum, P., Iversen, H. K., Ibsen, R., & Kjellberg, J. (2015). Cost of stroke: A controlled national study evaluating societal effects on patients and their partners. BMC Health Services Research, 15, 466. doi:10.1186/s12913-015-1100-0
  • Kertesz, A. (2006). Western aphasia battery-revised (wab-r). San Antonio, TX: Pearson.
  • Kniepmann, K., & Cupler, M. H. (2014). Occupational changes in caregivers for spouses with stroke and aphasia. British Journal of Occupational Therapy, 77, 10–18. doi:10.4276/030802214X13887685335463
  • Krol, M., Papenburg, J., & van Exel, J. (2015). Does including informal care in economic evaluations matter? A systematic review of inclusion and impact of informal care in cost-effectiveness studies. PharmacoEconomics, 33, 123–135. doi:10.1007/s40273-014-0218-y
  • La 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
  • 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
  • Lee, H., Lee, Y., Choi, H., & Pyun, S.-B. (2015). Community integration and quality of life in aphasia after stroke. Yonsei Medical Journal, 56, 1694–1702. doi:10.3349/ymj.2015.56.6.1694
  • Lurbe-Puerto, K., Leandro, M.-E., & Baumann, M. (2012). Experiences of caregiving, satisfaction of life, and social repercussions among family caregivers, two years post-stroke. Social Work in Health Care, 51, 725–742. doi:10.1080/00981389.2012.692351
  • Mackenzie, A., & Greenwood, N. (2012). Positive experiences of caregiving in stroke: A systematic review. Disability and Rehabilitation, 34, 1413–1422. doi:10.3109/09638288.2011.650307
  • Mazzucchelli, T. G., Kane, R. T., & Rees, C. S. (2010). Behavioral activation interventions for well-being: A meta-analysis. The Journal of Positive Psychology, 5, 105–121. doi:10.1080/17439760903569154
  • McGurk, R., & Kneebone, I. I. (2013). The problems faced by informal carers to people with aphasia after stroke: A literature review. Aphasiology, 27, 765–783. doi:10.1080/02687038.2013.772292
  • Meyer, K., Rath, L., Gassoumis, Z., Kaiser, N., & Wilber, K. (2018). What are strategies to advance policies supporting family caregivers? Promising approaches from a statewide task force. Journal of Aging & Social Policy, 1–19. doi:10.1080/08959420.2018.1485395
  • Michallet, B., Tétreault, S., & Le Dorze, G. (2003). The consequences of severe aphasia on the spouses of aphasic people: A description of the adaptation process. Aphasiology, 17, 835–859. doi:10.1080/02687030344000238
  • Miller, E. L., Murray, L., Richards, L., Zorowitz, R. D., Bakas, T., & Clark, P.; American Heart Association Council on Cardiovascular Nursing and the Stroke Council. (2010). Comprehensive overview of nursing and interdisciplinary rehabilitation care of the stroke patient: A scientific statement from the American Heart Association. Stroke, 41, 2402–2448. doi:10.1161/STR.0b013e3181e7512b
  • Moore, R. C., Chattillion, E. A., Ceglowski, J., Ho, J., von Känel, R., Mills, P. J., … Mausbach, B. T. (2013). A randomized clinical trial of Behavioral Activation (BA) therapy for improving psychological and physical health in dementia caregivers: Results of the Pleasant Events Program (PEP). Behaviour Research and Therapy, 51, 623–632. doi:10.1016/j.brat.2013.07.005
  • Nätterlund, B. S. (2010). Being a close relative of a person with aphasia. Scandinavian Journal of Occupational Therapy, 17, 18–28. doi:10.3109/11038120902833218
  • Nelson, M. M., Smith, M. A., Martinson, B. C., Kind, A., & Luepker, R. V. (2008). Declining patient functioning and caregiver burden/health: The Minnesota stroke survey–quality of life after stroke study. The Gerontologist, 48, 573–583. doi:10.1093/geront/48.5.573
  • Oliva-Moreno, J., Peña-Longobardo, L. M., Mar, J., Masjuan, J., Soulard, S., Gonzalez-Rojas, N., & Investigators Group, C. O. N. O. C. E. S. (2018). Determinants of informal care, burden, and risk of burnout in caregivers of stroke survivors: The CONOCES study. Stroke, 49, 140–146. doi:10.1161/STROKEAHA.117.017575
  • Ortman, J. M., Velkoff, V. A., & Hogan, H. (2014). An aging nation: The older population itn the United States, Current population reports, P25–1140. Washington, DC: U.S. Census Bureau.
  • Perrin, P. B., Heesacker, M., Stidham, B. S., Rittman, M. R., & Gonzalez-Rothi, L. J. (2008). Structural equation modeling of the relationship between caregiver psychosocial variables and functioning of individuals with stroke. Rehabilitation Psychology, 53, 54–62. doi:10.1037/0090-5550.53.1.54
  • Read, A., Mazzucchelli, T. G., & Kane, R. T. (2016). A preliminary evaluation of a single session behavioural activation intervention to improve well-being and prevent depression in carers. The Clinical Psychologist, 20, 36–45. doi:10.1111/cp.12084
  • Robinson-Smith, G., Harmer, C., Sheeran, R., & Vallo, E. B. (2016). Couples’ coping after stroke - A pilot intervention study. Rehabilitation Nursing, 41, 218–229. doi:10.1002/rnj.213
  • Salomon, J. A., Wang, H., Freeman, M. K., Vos, T., Flaxman, A. D., Lopez, A. D., & Murray, C. J. L. (2012). Healthy life expectancy for 187 countries, 1990–2010: A systematic analysis for the global burden disease study 2010. The Lancet, 380, 2144–2162. doi:10.1016/S0140-6736(12)61690-0
  • Savini, S., Buck, H. G., Dickson, V. V., Simeone, S., Pucciarelli, G., Fida, R., … Vellone, E. (2015). Quality of life in stroke survivor-caregiver dyads: A new conceptual framework and longitudinal study protocol. Journal of Advanced Nursing, 71, 676–687. doi:10.1111/jan.12524
  • Threats, T. (2010). The ICF framework and third party disability: Application to the spouses of persons with aphasia. Topics in Stroke Rehabilitation, 17, 451–457. doi:10.1310/tsr1706-451
  • Tsouna-Hadjis, E., Vemmos, K. N., Zakopoulos, N., & Stamatelopoulos, S. (2000). First-stroke recovery process: The role of family social support. Archives of Physical Medicine and Rehabilitation, 81, 881–887. doi:10.1053/apmr.2000.4435
  • Walker, M. F., Thomas, S. A., Whitehead, P. J., Condon, L., Fisher, R. J., Kontou, E., … Cobley, C. (2017). Biopsychosocial Intervention for Stroke Carers (BISC): Protocol for a feasibility randomised controlled trial (RCT). BMJ Open, 7, e018309. doi:10.1136/bmjopen-2017-018309
  • Wallace, S. J., Worrall, L., Rose, T., Le Dorze, G., Cruice, M., Isaksen, J., … Gauvreau, C. A. (2017). 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, 39, 1364–1379. doi:10.1080/09638288.2016.1194899
  • Warr, P., Butcher, V., & Robertson, I. (2004). Activity and psychological well-being in older people. Aging & Mental Health, 8, 172–183. doi:10.1080/13607860410001649662
  • Willer, B., Rosenthal, M., Kreutzer, J. S., Gordon, W. A., & Rempel, R. (1993). Assessment of community integration following rehabilitation for traumatic brain injury. Journal of Head Trauma Rehabilitation, 8, 75–87. doi:10.1097/00001199-199308020-00009
  • Winkler, M., Bedford, V., Northcott, S., & Hilari, K. (2014). Aphasia blog talk: How does stroke and aphasia affect the carer and their relationship with the person with aphasia? Aphasiology, 28, 1301–1319. doi:10.1080/02687038.2014.928665
  • World Health Organization (WHO). (2001). International classification for functioning,disability, and health. Geneva,Switzerland: World Health Organization.
  • Yeh, T., Chang, K., & Wu, C. (2019). The active ingredient of cognitive restoration: A multicenter randomized controlled trial of sequential combination of aerobic exercise and computer-based cognitive training in stroke survivors with cognitive decline. Archives of Physical Medicine and Rehabilitation, 100, 821–827. doi:10.1016/j.apmr.2018.12.020

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