RESEARCH

 

Caregiver experiences and perceptions of stroke

 

 

Mary Thomas^I; Kirston Greenop^II

^IMA Psychology student. Department of Psychology, School of Human and Community Development, University of Witwatersrand
^IIPhD. Lecturer, Department of Psychology, School of Human and Community Development, University of Witwatersrand

Correspondence

 

 

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ABSTRACT

With the increasing prevalence of people in developing countries who suffer strokes, the long-term care of people who have had a stroke and who are living with disabilities has substantial consequences for caregivers and their respective families. As the caregiver plays a pivotal role in the rehabilitation of the people who have had a stroke, the objectives of this study constitute an investigation into the complexities of caregiving, including both perceptions and experiences of the healthcare system. Semi-structured interviews were utilised to elicit post-stroke experiences of six caregivers. The challenge the South African context adds to these experiences was probed. The data were analysed qualitatively by thematic and content analysis. Prominent themes associated with caregiving included: role changes and relationship disruptions within the family, occupational and social implications, fatigue, anxiety, depression, loneliness, frustration as well as financial problems. Caregiver experiences were exacerbated by the inadequate support structures available. The results are interpreted within a biopsychosocial approach, concluding with the concerns raised by caregivers on the support they require from the healthcare system in order to provide home-based care.

Keywords: stroke; perceptions; caregivers; content analysis

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OPSOMMING

Met die toenemende voorkoms van beroerte in ontwikkelende lande bring die langdurige versorging van pasiënte met gestremdheid beduidende gevolge vir sorggewers en hulle onderskeie gesinne mee. Aangesien die sorggewer 'n sleutelrol in die rehabilitasie van die beroertepasiënt speel, behels die doelstellings van hierdie studie 'n ondersoek na die verwikkeldhede van versorging, wat sowel persepsies as ondervinding van die gesondheidsorgstelsel insluit. Semi-gestruktureerde onderhoude is aangewend om die na-beroerte ondervindings van ses sorggewers te peil. Die uitdaging wat die Suid- Afrikaanse konteks tot hierdie ondervindings meebring is ondersoek. Die data is kwalitatief deur middel van tematiese en inhoudsanalise ontleed. Prominente temas wat verbandhou met sorggewing sluit in: rolverandering en verhoudingsteurnisse binne die huisgesin, beroeps- en sosiale implikasies, uitputting, angs, depressie, eensaamheid, frustrasie sowel as finansiële probleme. Die probleme van sorggewers word vererger deur ontoereikende steunstrukture. Die resultate word binne 'n biopsigososiale benadering ontleed, en saamgevat met probleme wat sorggewers uitspreek ten opsigte van die steun wat hulle van die gesondheidsorgstelsel benodig om tuisgebaseerde sorg te kan voorsien.

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REFERENCES

AKAMATSU, TJ; STEPHENS, MAP; HOBFOLL, SE & CROWLER, JH 1992: Family health psychology. Washington DC, USA: Hemisphere Publishing Corporation.         [ Links ]

BAKAS, T & BURGENER, SC 2002: Predictors of emotional distress, general health, and caregiving outcomes in family caregivers of stroke survivors. Topics in Stroke Rehabilitation, 9(1):34-45.         [ Links ]

BHAM, Z & ROSS, E 2005: Traditional and western medicine: Cultural beliefs and practices of South African Indian Muslims with regard to stroke. Ethnicity and Disease, 15(4):548-554.         [ Links ]

BECVAR, DS & BECVAR, RJ 1996: Family therapy: A systemic integration; 3^rd edition. Boston: Allyn & Bacon.         [ Links ]

BOWEN, A; TENNANT, A; NEUMAN, V & CHAMBERLAIN, AM 2001: Neuropsychological rehabilitation for traumatic brain injury: Do carers benefit? Brain Injury, 15(1):29-38.         [ Links ]

DENBY, F & HARVEY, RL 2003: An educational intervention for stroke rehabilitation patients and their families: Healthy living after stroke. Topics in Stroke Rehabilitation, 9(4):34-45.         [ Links ]

ELLIS-HILL, CS & HORN, S 2000: Change in identity and self-concept: A new theoretical approach to recovery following a stroke. Clinical Rehabilitation 2000, 14(3):279-287.         [ Links ]

FAISON, KJ; FARIA, SH & FRANK, D 1999. Caregivers of chronically ill elderly: Perceived burden. Journal of Community Health Nursing, 16(4):215-233.         [ Links ]

FOLKMAN S 1984: Personality control and stress and coping processes: A theoretical analysis. Journal of Personality and Social Psychology, 46(4):839-852.         [ Links ]

FRITZ, V & PENN, C 1992: Stroke: Caring and coping. Johannesburg: Witwatersrand University Press.         [ Links ]

HAN, B & HALEY, WE 1999: Family caregiving for patients with stroke: Review and analysis. Stroke, 30:1478-1485.         [ Links ]

HARTKE, RJ & KING, RB 2002: Analysis of problem types and difficulty among older stroke caregivers. Topics in Stroke Rehabilitation, 9(1):16-33.         [ Links ]

HARTKE, RJ & KING, RB 2003: Telephone group intervention for older stroke caregivers. Topics in Stroke Rehabilitation, 9(4):65-81.         [ Links ]

HENNING, E; VAN RENSBURG, W & SMIT, B 2004: Finding your way in qualitative research. Pretoria: Van Schaik.         [ Links ]

KAHN, K & TOLLMAN, SM 1999: Stroke in rural South Africa -Contributing to the little known about a big problem. South African Medical Journal, 89(1):63-65.         [ Links ]

KAHN, K; TOLLMAN, SM; GARENNE, M & GEAR, JS 1999: Who dies from what? Determining cause of death in South Africa's rural North-East. Tropical Medicine and International Health, 4(6):433-441.         [ Links ]

KING, RB; SHADE-ZELDOW, Y; CARLSON, CE; FELDMAN, JL & PHILIP, M 2002: Adaptation to stroke: A longitudinal study of depressive symptoms, physical health, and coping process. Topics in Stroke Rehabilitation, 9(1):46-66.         [ Links ]

KNOPMAN, DS; SELNES, OA; NICCUM, N & RUBENS, AB 1984: Recovery of naming in aphasia: Relationship to fluency, comprehension and CT findings. Neurology, 34:1461-1470.         [ Links ]

LAI, S; STUDENSKI, S; DUNCAN, PW & PERERA, S 2002: Persisting consequences of stroke measured by the stroke impact scale. Stroke, 33:1840-1844.         [ Links ]

LEZAK, MD 2004: Neuropsychological assessment; 3^rd edition. Oxford: Oxford University Press.         [ Links ]

LOW, JTS; PAYNE, S & RODERICK, P 1999: The impact of stroke on informal carers: A literature review. Social Science and Medicine, 49:711-725.         [ Links ]

MAGNI, G & SCHIFANO, F 1984: Psychological distress after stroke. Journal of Neurology, Neurosurgery and Psychiatry, 47(5):567-571.         [ Links ]

MALONE, RL 1969: Expressed attitudes of families of aphasics. Journal of Speech and Hearing Disorders, 34(2) 146-151.         [ Links ]

MOSCOWITZ, B 2002: Bridging to family and community support for older adults and the domain management model. Topics in Stroke Rehabilitation, 9(3):75-86.         [ Links ]

O' CONNELL, B; BAKER, L & PROSSER, A 2003: The educational needs of caregivers of stroke survivors in acute and community settings. Journal of Neuroscience, 35(1):21-28.         [ Links ]

PENN, C 1999: Pragmatic assessment and therapy for person's with brain damage: What have clinicians gleaned in two decades? Brain and Language, 68(3):535-552.         [ Links ]

PENN, C 2002: Paying attention to conversation. Brain and Language, 71(1):185-189.         [ Links ]

PENN, C; VNTER, A & OGILVY, D 2001: Aphasia in Afrikaans: A preliminary analysis. Journal of Neurolinguistics, 14(2-4):111-132.         [ Links ]

ROSENTHAL, R & ROSNOW, RL 1991: Essentials of behavioral research: Methods and data analysis; 2^nd edition. New York: McGraw-Hill.         [ Links ]

SASPI PROJECT TEAM. PREVALENCE OF STROKE IN RURAL SOUTH AFRICA 2004: Results from the Southern Africa Stroke Prevention Initiative (SASPI) Agincourt Field Site. Stroke, 35:627-632.         [ Links ]

SKILBECK, C 1992: Neuropsychological assessment in stroke, (In: CRAWFORD,JR; PARKER, DM & McKINLAY, WW eds, A handbook of neuropsychological assessment. Hove: Psychology Press, pp. 339-359).         [ Links ]

STARKSTEIN, SE & ROBINSON, RG 1992: Neuropsychiatric aspects of cerebral vascular disorders. In Textbook of neuropsychiatry; 2^nd edition. Washington: American Psychiatric Press.         [ Links ]

VAN VEENENDAAL, H; GRINSPUN, DR & ADRIAANNSE, HP 1996: Educational needs of stroke survivors and their family members, as perceived by themselves and by health professionals. Patient Education and Counselling, 28(3):265-276.         [ Links ]

WHYTE, EM & MULSANT, BH 2002: Post stroke depression: Epidemiology, pathophysiology, and biological treatment. Biological Psychiatry, 52(3):253-264.         [ Links ]

ZILLMER, EA & SPIERS, MV 2001: Principles of neuropsychology.         [ Links ]

 

 

Correspondence:
Kirston Greenop
kirston@mindset.co.za