腦卒中患者居家照顧者負擔現狀的研究進展_West China Medical Journal

Authors：

王金垚 , 耿丹 , 苗曉慧 , 甘莉 ,  楊蓉

四川大學華西醫院神經內科（成都 610041）;

Corresponding?author：

楊蓉, Email: hxyangrong2004@126.com

Keywords：

腦卒中; 居家照顧者; 疾病負擔

DOI：

10.7507/1002-0179.201604198

Video：

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腦卒中具有高發病率、高致殘率、高死亡率、高復發率的特點，疾病負擔嚴重。目前國內外腦卒中患者出院后大多數返回家中進行長期康復，家庭成員成為提供日常照顧的主要人員。但由于居家照顧者缺乏疾病知識、社會支持和專業的照顧技能，同時照顧患者耗費大量時間和精力，疾病復診、用藥昂貴等原因，給非專業的居家照顧者帶來了沉重負擔。該文綜述了腦卒中居家照顧者概念、國內外腦卒中居家照顧者負擔現狀和測評方法，以期為制定減輕腦卒中患者居家照顧者負擔的干預措施提供參考，從而探索出一種適合我國國情的居家照顧者負擔干預模式。

Citation： 王金垚, 耿丹, 苗曉慧, 甘莉, 楊蓉. 腦卒中患者居家照顧者負擔現狀的研究進展. West China Medical Journal, 2017, 32(7): 1093-1096. doi: 10.7507/1002-0179.201604198 Copy

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2.	Krishnamurthi RV, Feigin VL, Forouzanfar MH, et al. Global and regional burden of first-ever ischaemic and haemorrhagic stroke during 1990-2010: findings from the global burden of disease study 2010. Lancet Glob Health, 2013, 1(5): e259-e281.
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4.	Mukherjee D, Patil CG. Epidemiology and the global burden of stroke. World Neurosurg, 2011, 76(6 Suppl): S85-S90.
5.	Luengo-Fernandez R, Paul NL, Gray AM, et al. Population-based study of disability and institutionalization after transient ischemic attack and stroke: 10-year results of the Oxford Vascular Study. Stroke, 2013, 44(10): 2854-2861.
6.	Cameron JI, Naglie G, Silver FL, et al. Stroke family caregivers’ support needs change across the care continuum: a qualitative study using the timing it right framework. Disabil Rehabil, 2013, 35(4): 315-324.
7.	Ekstam L, Tham K, Borell L. Couples’ approaches to changes in everyday life during the first year after stroke. Scand J Occup Ther, 2011, 18(1): 49-58.
8.	Anderson CS, Linto J, Stewart-Wynne EG. A population-based assessment of the impact and burden of caregiving for long-term stroke survivors. Stroke, 1995, 26(5): 843-849.
9.	焦建余, 馮云輝. 腦卒中患者主要照顧者的生活質量及其相關因素. 中國臨床康復, 2005, 9(17): 163-165.
10.	Pearlin LI, Mullan JT, Semple SJ, et al. Caregiving and the stress process: an overview of concepts and their measures. Gerontologist, 1990, 30(5): 583-594.
11.	Bhattacharjee M, Vairale J, Vairale J, et al. Factors affecting burden on caregivers of stroke survivors: population-based study in mumbai (India). Ann Indian Acad Neurol, 2012, 15(2): 113-119.
12.	王烈, 楊小湜, 侯哲, 等. 護理者負擔量表中文版的應用與評價. 中國公共衛生, 2006(8): 970-972.
13.	王慧萍, 陳京立, 郭園麗, 等. 住院腦卒中患者主要照顧者負擔及影響因素的研究. 解放軍護理雜志, 2010, 27(16): 1210-1213.
14.	鄭茶鳳, 邵秀芹. 腦卒中患者照顧者負擔的調查. 實用臨床醫學, 2012, 13(11): 128-129, 139.
15.	梅永霞, 張振香, 林蓓蕾, 等. 社區腦卒中照顧者負擔及其影響因素. 中國老年學雜志, 2015(4): 1054-1056.
16.	Carey PJ, Oberst MT, McCubbin MA, et al. Appraisal and caregiving burden in family members caring for patients receiving chemotherapy. Oncol Nurs Forum, 1991, 18(8): 1341-1348.
17.	Bakas T, Austin JK, Jessup SL, et al. Time and difficulty of tasks provided by family caregivers of stroke survivors. J Neurosci Nurs, 2004, 36(2): 95-106.
18.	Bakas T, Champion V, Perkins SM, et al. Psychometric testing of the revised 15-item bakas caregiving outcomes scale. Nurs Res, 2006, 55(5): 346-355.
19.	Bakas T, Farran CJ, Austin JK, et al. Stroke caregiver outcomes from the telephone assessment and skill-building kit (TASK). Top Stroke Rehabil, 2015, 16(2): 105-121.
20.	Robinson BC. Validation of a caregiver strain index. J Gerontol, 1983, 38(3): 344-348.
21.	Chan WC, Chan CL, Suen M. Validation of the Chinese version of the Modified Caregivers Strain Index among Hong Kong caregivers: an initiative of medical social workers. Health Soc Work, 2013, 38(4): 214-221.
22.	Elmst?hl S, Malmberg B, Annerstedt L. Caregiver’s burden of patients 3 years after stroke assessed by a novel caregiver burden scale. Arch Phys Med Rehabil, 1996, 77(2): 177-182.
23.	Mccullagh E, Brigstocke G, Donaldson N, et al. Determinants of caregiving burden and quality of life in caregivers of stroke patients. Stroke, 2005, 36(10): 2181-2186.
24.	Iida N, Kohashi N, Okamura T, et al. Reliability and validity of a new assessment of the burden on caregivers (ABC-16). Nihon Ronen Igakkai Zasshi, 2005, 42(2): 209-213.
25.	Teo K, Slark J. A systematic review of studies investigating the care of stroke survivors in long-term care facilities. Disabil Rehabil, 2015, 38(8): 1-9.
26.	孫曉, 毛雅芬, 施雁, 等. 卒中病人居家照顧者疾病相關知識認知情況調查. 護理研究, 2015(2): 185-188.
27.	Kissela BM, Khoury JC, Alwell K, et al. Age at stroke: temporal trends in stroke incidence in a large, biracial population. Neurology, 2012, 79(17): 1781-1787.
28.	Jaracz K, Grabowska-Fudala B, Górna K, et al. Burden in caregivers of long-term stroke survivors: prevalence and determinants at 6 months and 5 years after stroke. Patient Educ Couns, 2015, 98(8): 1011-1016.
29.	Collins LG, Swartz K. Caregiver care. Am Fam Physician, 2011, 83(11): 1309-1317.
30.	Brereton L, Nolan M. 'You do know he's had a stroke, don't you?' preparation for family care-giving--the neglected dimension. J Clin Nurs, 2000, 9(4): 498-506.
31.	Murray CJ, Vos T, Lozano R, et al. disability-adjusted life years (DALYs) for 291 diseases and Injuries in 21 regions, 1990-2010: a systematic analysis for the global burden of disease study 2010. Lancet, 2012, 380(9859): 2197-2223.
32.	Saban KL, Sherwood PR, Devon HA, et al. Measures of psychological stress and physical health in family caregivers of stroke survivors: a literature review. J Neurosci Nurs, 2010, 42(3): 128-138.
33.	Hickenbottom SL, Fendrick AM, Kutcher JS, et al. A national study of the quantity and cost of informal caregiving for the elderly with stroke. Neurology, 2002, 58(12): 1754-1759.
34.	Sit W, Wong K, Clinton Michael, et al. Stroke care in the home: the impact of social support on the general health of family caregivers. J Clin Nurs, 2004, 13(7): 816-824.
35.	Berg A, Psych L, Palomaki H, et al. Depression among caregivers of stroke survivors. Stroke, 2005, 36(3): 639-643.
36.	Karahan AY, Kucuksen S, Yilmaz H, et al. Effects of rehabilitation services on anxiety, depression, care-giving burden and perceived social support of stroke caregivers. Acta medica (Hradec Kralove), 2014, 57(2): 68-72.
37.	Byun E, Evans K. Concept analysis of burden in caregivers of stroke survivors during the early poststroke period. Clin Nurs Res, 2015, 24(5): 468-486.
38.	Nakipoglu GF, Karamercan A, Mengulluo?lu M, et al. Comparison of depressive mood findings in geriatric hemiplegic patients and their caregivers. Turk J Geriatr, 2006, 9(4): 218-221.
39.	Morimoto T, Schreiner AS, Asano H. Perceptions of burden among family caregivers of post-stroke elderly in Japan. Int J Rehabil Res, 2001, 24(3): 221-226.
40.	Brody EM. Women in the middle: their parent care years. 2nd ed, Springer Publishing Company, 2004.
41.	Jeong YG, Myong JP, Koo JW. The modifying role of caregiver burden on predictors of quality of life of caregivers of hospitalized chronic stroke patients. Disabil Health J, 2015, 8(4): 619-625.
42.	龐冬, 那利, 路潛, 等. 社區腦卒中病人主要照顧者負擔的調查. 中華護理雜志, 2005, 40(4): 285-287.
43.	Adriaansen JJ, Van Leeuwen CM, Visser-Meily JM, et al. Course of social support and relationships between social support and life satisfaction in spouses of patients with stroke in the chronic phase. Patient Educ Couns, 2011, 85(2): e48-e52.
44.	楊華, 趙曉峰, 王舒. 腦卒中的衛生經濟學評價. 中國衛生經濟, 2008, 27(11): 55-57.
45.	楊新明. 腦卒中治療和費用情況調查分析. 職業與健康, 2001, 17(9): 133-134.
46.	Joo H, Dunet DO, Fang J, et al. Cost of informal caregiving associated with stroke among the elderly in the United States. Neurology, 2014, 83(20): 1831-1837.

1. WHO. World Health Organization global burden of disease, 2012. www.who.int/evidence/bod/.accessed 29.10.
2. Krishnamurthi RV, Feigin VL, Forouzanfar MH, et al. Global and regional burden of first-ever ischaemic and haemorrhagic stroke during 1990-2010: findings from the global burden of disease study 2010. Lancet Glob Health, 2013, 1(5): e259-e281.
3. WHO. World Health Organization golbal health risks. http://www.who.int/healthinfo/global_burden_disease/global_health_risks/en/.
4. Mukherjee D, Patil CG. Epidemiology and the global burden of stroke. World Neurosurg, 2011, 76(6 Suppl): S85-S90.
5. Luengo-Fernandez R, Paul NL, Gray AM, et al. Population-based study of disability and institutionalization after transient ischemic attack and stroke: 10-year results of the Oxford Vascular Study. Stroke, 2013, 44(10): 2854-2861.
6. Cameron JI, Naglie G, Silver FL, et al. Stroke family caregivers’ support needs change across the care continuum: a qualitative study using the timing it right framework. Disabil Rehabil, 2013, 35(4): 315-324.
7. Ekstam L, Tham K, Borell L. Couples’ approaches to changes in everyday life during the first year after stroke. Scand J Occup Ther, 2011, 18(1): 49-58.
8. Anderson CS, Linto J, Stewart-Wynne EG. A population-based assessment of the impact and burden of caregiving for long-term stroke survivors. Stroke, 1995, 26(5): 843-849.
9. 焦建余, 馮云輝. 腦卒中患者主要照顧者的生活質量及其相關因素. 中國臨床康復, 2005, 9(17): 163-165.
10. Pearlin LI, Mullan JT, Semple SJ, et al. Caregiving and the stress process: an overview of concepts and their measures. Gerontologist, 1990, 30(5): 583-594.
11. Bhattacharjee M, Vairale J, Vairale J, et al. Factors affecting burden on caregivers of stroke survivors: population-based study in mumbai (India). Ann Indian Acad Neurol, 2012, 15(2): 113-119.
12. 王烈, 楊小湜, 侯哲, 等. 護理者負擔量表中文版的應用與評價. 中國公共衛生, 2006(8): 970-972.
13. 王慧萍, 陳京立, 郭園麗, 等. 住院腦卒中患者主要照顧者負擔及影響因素的研究. 解放軍護理雜志, 2010, 27(16): 1210-1213.
14. 鄭茶鳳, 邵秀芹. 腦卒中患者照顧者負擔的調查. 實用臨床醫學, 2012, 13(11): 128-129, 139.
15. 梅永霞, 張振香, 林蓓蕾, 等. 社區腦卒中照顧者負擔及其影響因素. 中國老年學雜志, 2015(4): 1054-1056.
16. Carey PJ, Oberst MT, McCubbin MA, et al. Appraisal and caregiving burden in family members caring for patients receiving chemotherapy. Oncol Nurs Forum, 1991, 18(8): 1341-1348.
17. Bakas T, Austin JK, Jessup SL, et al. Time and difficulty of tasks provided by family caregivers of stroke survivors. J Neurosci Nurs, 2004, 36(2): 95-106.
18. Bakas T, Champion V, Perkins SM, et al. Psychometric testing of the revised 15-item bakas caregiving outcomes scale. Nurs Res, 2006, 55(5): 346-355.
19. Bakas T, Farran CJ, Austin JK, et al. Stroke caregiver outcomes from the telephone assessment and skill-building kit (TASK). Top Stroke Rehabil, 2015, 16(2): 105-121.
20. Robinson BC. Validation of a caregiver strain index. J Gerontol, 1983, 38(3): 344-348.
21. Chan WC, Chan CL, Suen M. Validation of the Chinese version of the Modified Caregivers Strain Index among Hong Kong caregivers: an initiative of medical social workers. Health Soc Work, 2013, 38(4): 214-221.
22. Elmst?hl S, Malmberg B, Annerstedt L. Caregiver’s burden of patients 3 years after stroke assessed by a novel caregiver burden scale. Arch Phys Med Rehabil, 1996, 77(2): 177-182.
23. Mccullagh E, Brigstocke G, Donaldson N, et al. Determinants of caregiving burden and quality of life in caregivers of stroke patients. Stroke, 2005, 36(10): 2181-2186.
24. Iida N, Kohashi N, Okamura T, et al. Reliability and validity of a new assessment of the burden on caregivers (ABC-16). Nihon Ronen Igakkai Zasshi, 2005, 42(2): 209-213.
25. Teo K, Slark J. A systematic review of studies investigating the care of stroke survivors in long-term care facilities. Disabil Rehabil, 2015, 38(8): 1-9.
26. 孫曉, 毛雅芬, 施雁, 等. 卒中病人居家照顧者疾病相關知識認知情況調查. 護理研究, 2015(2): 185-188.
27. Kissela BM, Khoury JC, Alwell K, et al. Age at stroke: temporal trends in stroke incidence in a large, biracial population. Neurology, 2012, 79(17): 1781-1787.
28. Jaracz K, Grabowska-Fudala B, Górna K, et al. Burden in caregivers of long-term stroke survivors: prevalence and determinants at 6 months and 5 years after stroke. Patient Educ Couns, 2015, 98(8): 1011-1016.
29. Collins LG, Swartz K. Caregiver care. Am Fam Physician, 2011, 83(11): 1309-1317.
30. Brereton L, Nolan M. 'You do know he's had a stroke, don't you?' preparation for family care-giving--the neglected dimension. J Clin Nurs, 2000, 9(4): 498-506.
31. Murray CJ, Vos T, Lozano R, et al. disability-adjusted life years (DALYs) for 291 diseases and Injuries in 21 regions, 1990-2010: a systematic analysis for the global burden of disease study 2010. Lancet, 2012, 380(9859): 2197-2223.
32. Saban KL, Sherwood PR, Devon HA, et al. Measures of psychological stress and physical health in family caregivers of stroke survivors: a literature review. J Neurosci Nurs, 2010, 42(3): 128-138.
33. Hickenbottom SL, Fendrick AM, Kutcher JS, et al. A national study of the quantity and cost of informal caregiving for the elderly with stroke. Neurology, 2002, 58(12): 1754-1759.
34. Sit W, Wong K, Clinton Michael, et al. Stroke care in the home: the impact of social support on the general health of family caregivers. J Clin Nurs, 2004, 13(7): 816-824.
35. Berg A, Psych L, Palomaki H, et al. Depression among caregivers of stroke survivors. Stroke, 2005, 36(3): 639-643.
36. Karahan AY, Kucuksen S, Yilmaz H, et al. Effects of rehabilitation services on anxiety, depression, care-giving burden and perceived social support of stroke caregivers. Acta medica (Hradec Kralove), 2014, 57(2): 68-72.
37. Byun E, Evans K. Concept analysis of burden in caregivers of stroke survivors during the early poststroke period. Clin Nurs Res, 2015, 24(5): 468-486.
38. Nakipoglu GF, Karamercan A, Mengulluo?lu M, et al. Comparison of depressive mood findings in geriatric hemiplegic patients and their caregivers. Turk J Geriatr, 2006, 9(4): 218-221.
39. Morimoto T, Schreiner AS, Asano H. Perceptions of burden among family caregivers of post-stroke elderly in Japan. Int J Rehabil Res, 2001, 24(3): 221-226.
40. Brody EM. Women in the middle: their parent care years. 2nd ed, Springer Publishing Company, 2004.
41. Jeong YG, Myong JP, Koo JW. The modifying role of caregiver burden on predictors of quality of life of caregivers of hospitalized chronic stroke patients. Disabil Health J, 2015, 8(4): 619-625.
42. 龐冬, 那利, 路潛, 等. 社區腦卒中病人主要照顧者負擔的調查. 中華護理雜志, 2005, 40(4): 285-287.
43. Adriaansen JJ, Van Leeuwen CM, Visser-Meily JM, et al. Course of social support and relationships between social support and life satisfaction in spouses of patients with stroke in the chronic phase. Patient Educ Couns, 2011, 85(2): e48-e52.
44. 楊華, 趙曉峰, 王舒. 腦卒中的衛生經濟學評價. 中國衛生經濟, 2008, 27(11): 55-57.
45. 楊新明. 腦卒中治療和費用情況調查分析. 職業與健康, 2001, 17(9): 133-134.
46. Joo H, Dunet DO, Fang J, et al. Cost of informal caregiving associated with stroke among the elderly in the United States. Neurology, 2014, 83(20): 1831-1837.

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