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

Disability and Rehabilitation

Volumn 32, Issue 13, 2010, Pages 1073-1087

  Le Dorze, Guylaine ^a,b   Signori, France Hélene ^a,b  

^a Faculte de Medecine   (Canada)

^b UNIVERSITÉ DE MONTRÉAL   (Canada)

Author keywords

Adaptation; Aphasia; Barriers and facilitators; Brain injury; Rehabilitation; Spouses

Indexed keywords

ADAPTIVE BEHAVIOR; AGED; APHASIA; ARTICLE; CAREGIVER; FEMALE; HUMAN; INFORMATION PROCESSING; MALE; MIDDLE AGED; NEEDS ASSESSMENT; PSYCHOLOGICAL ASPECT; RESPITE CARE; SOCIAL SUPPORT; SPOUSE;

ADAPTATION, PSYCHOLOGICAL; AGED; APHASIA; CAREGIVERS; FEMALE; FOCUS GROUPS; HUMANS; MALE; MIDDLE AGED; NEEDS ASSESSMENT; RESPITE CARE; SOCIAL SUPPORT; SPOUSES;

EID: 77952143192     PISSN: 09638288     EISSN: 14645165     Source Type: Journal    
DOI: 10.3109/09638280903374121     Document Type: Article

References (56)

1. 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.
2. Pedersen PM, Jorgensen HS, Nakayama H, Raaschou HO, Olsen TS. Aphasia in acute stroke: incidence, determinants, and recovery. Ann Neurol 1995;38:659-666.
3. 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.
4. Roquer J, Rodriguez Campello A, Gomis M. Sex differences in first-ever acute stroke. Stroke 2003;34:1581-1585.
5. 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.
6. 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.
7. 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.
8. The National Aphasia Association. Aphasia frequently asked questions. http://www.aphasia.org/Aphasia%20Facts/aphasia- faq.html. Last accessed August 2009.
9. 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.
10. 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.
11. Deloche G, North P, Dellatolas G, Christensen AL, Cremel N, Passadori A, Dordain M, Hannequin D. Le handicap des adultes cérébrolé sés: le point de vue des patients et de leur entourage. Ann Readapt Med Phys 1996;39:1-9.
12. 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.
13. 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. (Pubitemid 38291991)
14. 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.
15. 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.
16. Chapey R, editor. Language intervention strategies in aphasia and related neurogenic communication disorders. 5th ed. Baltimore, MD: Lippincott Williams and Wilkins; 2008.
17. Duchan JF, Byng S, editors. Challenging aphasia therapies; broadening the discourse and extending the boundaries. Hove, NY: Psychology Press; 2004.
18. Denman A. Determining the needs of spouses caring for aphasic partners. Disabil Rehabil 1998;20:411-423.
19. 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.
20. Michallet B, Le Dorze G, Tétreault S. The needs of spouses caring for severely aphasic persons. Aphasiology 2001;15:731-747.
21. Rodgers H, Bond S, Curless R. Inadequacies in the provision of information to stroke patients and their families. Age Ageing 2001;30:129-133.
22. Parr S, Byng S, Pound C, Hewitt A, editors. Living with severe aphasia: the experience of communication impairment after stroke. York, UK: Joseph Rowntree Foundation; 2004.
23. Avent J, Glista S, Wallace S, Jackson J, Nishioka J, Yip W. Family information needs about aphasia. Aphasiology 2005; 19:365-375.
24. Andersen R, Newman JF. Societal and individual determinants of medical care utilization in the United States. Milbank Mem Fund Q 1973;51:95-124.
25. Andersen RM. Revisiting the behavioural model and access to medical care: does it matter? J Health Soc Behav 1995;36: 1-10.
26. Dever GEA, Champagne F, editors. Epidemiology in health services management. Rockville, MD: Aspen Publication; 1984.
27. Wyszewianski L, McLaughling CG. Access to care: remembering old lessons. Health Serv Res 2002;37:1441-1443.
28. Patton MQ. Qualitative research & evaluation methods. 3rd ed. Thousand Oaks, CA: Sage; 2002.
29. Basch CE. Focus group interview: an underutilized research technique for improving theory and practise in health education. Health Educ Behav 1987;14:411-448.
30. Kitzinger J. Qualitative research: introducing focus groups. Br Med J 1995;311:299-302.
31. Muhr T. Atlas.ti for Windows (Version 4.2) computer software]. Berlin, Germany: Scientific Software Development; 2002.
32. 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.
33. 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.
34. 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.
35. 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.
36. 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.
37. 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.
38. Ski C, O'Connell B. Stroke: the increasing complexity of carer needs. J Neurosci Nurs 2007;39:172-179.
39. 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.
40. 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.
41. 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.
42. 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.
43. Croteau C, Le Dorze G. Spouses' perceptions of persons with aphasia. Aphasiology 2001;15:811-825.
44. Scholte op Reimer WJM, de Haan RJ, Rijnders PT, Limburg M, van den Bos GAM. The burden of caregiving in partners of long-term stroke survivors. Stroke 1998;29: 1605-1611.
45. Paquet M. Les professionnels et les familles dans le soutien aux personnes âgées dépendantes. Paris: L'Harmattan; 1999.
46. 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.
47. 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.
48. 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.
49. 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.
50. 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.
51. 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.
52. Mant J, Carter J, Wade D, Winner S. Family support for stroke: a randomised controlled trial. Lancet 2000;356:808-813.
53. 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.
54. 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.
55. McLennan M, Anderson GS, Pain K. Rehabilitation learning needs: patient and family perceptions. Patient Educ Couns 1996;27:191-199.
56. 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.