Needs, barriers and facilitators experienced by spouses of people with aphasia

References

• Heart and Stroke Foundation of Canada. 2009. Internet. Statistics on stroke. http://www.heartandstroke.com/site/c.ikIQLcMWJtE/b.3483991/k.34A8/Statistics.htm. Last accessed March 2009.
   Google Scholar
• Pedersen PM, Jorgensen HS, Nakayama H, Raaschou HO, Olsen TS. Aphasia in acute stroke: incidence, determinants, and recovery. Ann Neurol 1995;38:659–666.
   PubMed Web of Science ®Google Scholar
• Laska AC, Hellblom A, Murray V, Kahan T, Von Arbin M. Aphasia in acute stroke and relation to outcome. J Intern Med 2001;249:413–422.
   PubMed Web of Science ®Google Scholar
• Roquer J, Rodriguez Campello A, Gomis M. Sex differences in first-ever acute stroke. Stroke 2003;34:1581–1585.
   PubMed Web of Science ®Google Scholar
• Engelter S, Gostynski M, Papa S, Frei M, Born C, Ajdacic-Gross V, Gutzwiller F, Lyrer PA. Epidemiology of aphasia attributable to first ischemic stroke: incidence, severity, fluency, aetiology, and thrombolysis. Stroke 2006;37:1379–1384.
   PubMed Web of Science ®Google Scholar
• Law J, Rush R, Pringle AM, Irving AM, Huby G, Smith M, Conochie D, Haworth C, Burston A. The incidence of cases of aphasia following first stroke referred to speech and language therapy services in Scotland. Aphasiology 2009;23:1266–1275.
   Web of Science ®Google Scholar
• Annoni JM, Cot F, Ryalls J, Lecours A-R. Profile of the aphasic population in a Montreal geriatric hospital: a 6-year study. Aphasiology 1993;7:271–284.
   Web of Science ®Google Scholar
• The National Aphasia Association. Aphasia frequently asked questions. http://www.aphasia.org/Aphasia%20Facts/aphasia_faq.html. Last accessed August 2009.
   Google Scholar
• Michallet B, Tétreault S, Le Dorze G. The consequences of severe aphasia on the spouses of aphasic people: a description of the adaptation process. Aphasiology 2003;17:835–859.
   Web of Science ®Google Scholar
• Le Dorze G, Brassard C. A description of the consequences of aphasia on aphasic persons and their relatives and friends, based on the WHO model of chronic diseases. Aphasiology 1995;9:239–255.
   Web of Science ®Google Scholar
• Deloche G, North P, Dellatolas G, Christensen AL, Cremel N, Passadori A, Dordain M, Hannequin D. Le handicap des adultes cérébrolésés: le point de vue des patients et de leur entourage. Ann Readapt Med Phys 1996;39:1–9.
   Google Scholar
• White C, Mayo N, Hanley J, Wood-Dauphinee S. Evolution of the caregiving experience in the initial 2 years following stroke. Res Nurs Health 2003;26:177–189.
   PubMed Web of Science ®Google Scholar
• Forsberg-Wärleby G, Möller A, Blomstrand C. Life satisfaction in spouses of patients with stroke during the first year after stroke. J Rehab Med 2004;36:4–11.
   PubMed Web of Science ®Google Scholar
• Bakas T, Kroenke K, Plue LD, Perkins SM, Williams LS. Outcomes among family caregivers of aphasic versus nonaphasic stroke survivors. Rehabil Nurs 2006;31:33–42.
   PubMed Web of Science ®Google Scholar
• Rombough RE, Howse EL, Bartfay WJ. Caregiver strain and caregiver burden of primary caregivers of stroke survivors with and without aphasia. Rehabil Nurs 2006;31:199–209.
   PubMed Web of Science ®Google Scholar
• Chapey R, editor. Language intervention strategies in aphasia and related neurogenic communication disorders. 5th ed. Baltimore, MD: Lippincott Williams and Wilkins; 2008.
   Google Scholar
• Duchan JF, Byng S, editors. Challenging aphasia therapies; broadening the discourse and extending the boundaries. Hove, NY: Psychology Press; 2004.
   Google Scholar
• Denman A. Determining the needs of spouses caring for aphasic partners. Disabil Rehabil 1998;20:411–423.
   PubMed Web of Science ®Google Scholar
• Brereton L, Nolan MR. ‘You do know he's had a stroke, don't you?’ – preparation for family care-giving: the neglected dimension. J Clin Nurs 2000;9:498–506.
   PubMed Web of Science ®Google Scholar
• Michallet B, Le Dorze G, Tétreault S. The needs of spouses caring for severely aphasic persons. Aphasiology 2001;15:731–747.
   Web of Science ®Google Scholar
• Rodgers H, Bond S, Curless R. Inadequacies in the provision of information to stroke patients and their families. Age Ageing 2001;30:129–133.
   PubMed Web of Science ®Google Scholar
• Parr S, Byng S, Pound C, Hewitt A, editors. Living with severe aphasia: the experience of communication impairment after stroke. York, UKJoseph Rowntree Foundation; 2004.
   Google Scholar
• Avent J, Glista S, Wallace S, Jackson J, Nishioka J, Yip W. Family information needs about aphasia. Aphasiology 2005;19:365–375.
   Web of Science ®Google Scholar
• Andersen R, Newman JF. Societal and individual determinants of medical care utilization in the United States. Milbank Mem Fund Q 1973;51:95–124.
   Google Scholar
• Andersen RM. Revisiting the behavioural model and access to medical care: does it matter? J Health Soc Behav 1995;36:1–10.
   PubMed Web of Science ®Google Scholar
• Dever GEA, Champagne F, editors. Epidemiology in health services management. Rockville, MD: Aspen Publication; 1984.
   Google Scholar
• Wyszewianski L, McLaughling CG. Access to care: remembering old lessons. Health Serv Res 2002;37:1441–1443.
   PubMed Web of Science ®Google Scholar
• Patton MQ. Qualitative research & evaluation methods. 3rd ed. Thousand Oaks, CA: Sage; 2002.
   Google Scholar
• Basch CE. Focus group interview: an underutilized research technique for improving theory and practise in health education. Health Educ Behav 1987;14:411–448.
   Web of Science ®Google Scholar
• Kitzinger J. Qualitative research: introducing focus groups. Br Med J 1995;311:299–302.
   PubMed Web of Science ®Google Scholar
• Muhr T. Atlas.ti for Windows (Version 4.2) computer software]. Berlin, Germany: Scientific Software Development; 2002.
   Google Scholar
• Chapey R, Duchan J, Elman R, Garcia L, Kagan A, Lyon J, Simmons-Mackie N. Life participation approach to aphasia: a statement of values for the future. In: Chapey R, editor. Language intervention strategies in aphasia and related neurogenic communication disorders. 4th ed. Baltimore, MD: Lippincott, Williams & Wilkins; 2001. pp 235–245.
   Google Scholar
• Grant JS, Glandon GL, Elliott TR, Giger JN, Weaver M. Problems and associated feelings experienced by family caregivers of stroke survivors the second and third month post discharge. Top Stroke Rehabil 2006;13:66–74.
   PubMed Web of Science ®Google Scholar
• Moloczij N, McPherson KM, Smith JF, Kayes NM. Help-seeking at the time of stroke: stroke survivors' perspectives on their decisions. Health Soc Care Commun 2008;16:501–510.
   PubMed Web of Science ®Google Scholar
• Simon C, Kumar S, Kendrick T. Formal support of stroke survivors and their informal carers in the community: a cohort study. Health Soc Care Commun 2008;16:582–592.
   PubMed Web of Science ®Google Scholar
• Lefebvre H, Pelchat D, Swaine B, Gélinas I, Levert MJ. The experiences of individuals with a traumatic brain injury, families, physicians and health professionals regarding care provided throughout the continuum. Brain Inj 2005;19:585–597.
   PubMed Web of Science ®Google Scholar
• Ellis-Hill C, Robison J, Wiles R, McPherson K, Hyndman D, Ashburn A. Going home to get on with life: patients and carers experiences of being discharged from hospital following a stroke. Disabil Rehabil 2009;3:61–72.
   Web of Science ®Google Scholar
• Ski C, O'Connell B. Stroke: the increasing complexity of carer needs. J Neurosci Nurs 2007;39:172–179.
   PubMedGoogle Scholar
• Wachters-Kaufmann C, Schuling J, The H, Meyboom-de Jong B. Actual and desired information provision after a stroke. Patient Educ Couns 2005;56:211–217.
   PubMed Web of Science ®Google Scholar
• Worrall L, Rose T, Howe T, McKenna K, Hickson L. Developing an evidence-base for accessibility for people with aphasia. Aphasiology 2007;21:124–136.
   Web of Science ®Google Scholar
• Kim JW, Moon SS. Needs of family caregivers caring for stroke patients: based on the rehabilitation treatment phase and the treatment setting. Soc Work Health Care 2007;45:81–97.
   PubMed Web of Science ®Google Scholar
• Smith LN, Lawrence M, Kerr SM, Langhorne P, Lees KR. Informal carers' experience of caring for stroke survivors. J Adv Nurs 2004;46:235–244.
   PubMed Web of Science ®Google Scholar
• Croteau C, Le Dorze G. Spouses' perceptions of persons with aphasia. Aphasiology 2001;15:811–825.
   Web of Science ®Google Scholar
• Scholte op Reimer WJM, de Haan RJ, Rijnders PT, LimburgM, van den Bos GAM. The burden of caregiving in partners of long-term stroke survivors. Stroke 1998;29:1605–1611.
   PubMed Web of Science ®Google Scholar
• Paquet M. Les professionnels et les familles dans le soutien aux personnes âgées dépendantes. Paris: L'Harmattan; 1999.
   Google Scholar
• Lavoie J-P. La structuration familiale de la prise en charge des parents âgés. Définitions profanes et rapports affectifs. Unpublished doctoral dissertation. Montréal: Université de Montréal; 1999.
   Google Scholar
• Reinhard SC, Given B, Petlick NH, Bemis A. Supporting family caregivers in providing care. In: Hughes R, editor. Patient safety and quality: an evidence-based handbook for nurses. Rockville MD: Agency for Healthcare Research and Quality; 2007. http://www.ahrq.gov/qual/nurseshdbk/. Last accessed August 2009.
   Google Scholar
• Hare R, Rogers H, Lester H, McManus RJ, Mant J. What do stroke patients and their carers want from community services? Fam Pract 2006;23:131–136.
   PubMed Web of Science ®Google Scholar
• Vincent C, Deaudelin I, Robichaud L, Rousseau J, Viscogliosi C, Talbot LR, Desrosiers J. Rehabilitation needs for older adults with stroke living at home: perceptions of four populations. BMC Geriatr 2007;7:20.
   PubMedGoogle Scholar
• Keefe J, Guberman N, Fancey P, Barylak L, Nahmiash D. Caregivers' aspirations, realities and expectations: the CARE tool. J Appl Gerontol 2008;27:286–308.
   Web of Science ®Google Scholar
• Visser-Meily A, Post M, van de Port I, van Heugten C, van den Bos T. Psychosocial functioning of spouses in the chronic phase after stroke: improvement or deterioration between 1 and 3 years after stroke? Patient Educ Couns 2008;73:153–158.
   PubMed Web of Science ®Google Scholar
• Mant J, Carter J, Wade D, Winner S. Family support for stroke: a randomised controlled trial. Lancet 2000;356:808–813.
   PubMed Web of Science ®Google Scholar
• Grant JS, Elliott TR, Weaver M, Bartolucci AA, Giger JN. Telephone intervention with family caregiver of stroke survivors after rehabilitation. Stroke 2002;33:2060–2065.
   PubMed Web of Science ®Google Scholar
• Kalra L, Evans A, Perez I, Melbourn A, Patel A, Knapp M, Donaldson N. Training carers of stroke patients: randomised controlled trial. Br Med J 2004;328:1099–1104.
   PubMed Web of Science ®Google Scholar
• McLennan M, Anderson GS, Pain K. Rehabilitation learning needs: patient and family perceptions. Patient Educ Couns 1996;27:191–199.
   PubMed Web of Science ®Google Scholar
• Cameron JI, Gignac MAM. “Timing it right”: a conceptual framework for addressing the support needs of family caregivers to stroke survivors from the hospital to the home. Patient Educ Couns 2008;70:305–314.
   PubMed Web of Science ®Google Scholar