脑卒中患者居家照顾者负担现状的研究进展_West China Medical Journal

Authors：

王金垚 , 耿丹 , 苗晓慧 , 甘莉 ,  杨蓉

四川大学华西医院神经内科（成都 610041）;

Corresponding author：

杨蓉, Email: hxyangrong2004@126.com

Keywords：

脑卒中; 居家照顾者; 疾病负担

DOI：

10.7507/1002-0179.201604198

Video：

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脑卒中具有高发病率、高致残率、高死亡率、高复发率的特点，疾病负担严重。目前国内外脑卒中患者出院后大多数返回家中进行长期康复，家庭成员成为提供日常照顾的主要人员。但由于居家照顾者缺乏疾病知识、社会支持和专业的照顾技能，同时照顾患者耗费大量时间和精力，疾病复诊、用药昂贵等原因，给非专业的居家照顾者带来了沉重负担。该文综述了脑卒中居家照顾者概念、国内外脑卒中居家照顾者负担现状和测评方法，以期为制定减轻脑卒中患者居家照顾者负担的干预措施提供参考，从而探索出一种适合我国国情的居家照顾者负担干预模式。

Citation： 王金垚, 耿丹, 苗晓慧, 甘莉, 杨蓉. 脑卒中患者居家照顾者负担现状的研究进展. 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, 冯云辉. 脑卒中患者主要照顾者的生活质量及其相关因素. 中国临床康复, 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, 杨小湜, 侯哲, 等. 护理者负担量表中文版的应用与评价. 中国公共卫生, 2006(8): 970-972.
13.	王慧萍, 陈京立, 郭园丽, 等. 住院脑卒中患者主要照顾者负担及影响因素的研究. 解放军护理杂志, 2010, 27(16): 1210-1213.
14.	郑茶凤, 邵秀芹. 脑卒中患者照顾者负担的调查. 实用临床医学, 2012, 13(11): 128-129, 139.
15.	梅永霞, 张振香, 林蓓蕾, 等. 社区脑卒中照顾者负担及其影响因素. 中国老年学杂志, 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.	Elmståhl 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.	孙晓, 毛雅芬, 施雁, 等. 卒中病人居家照顾者疾病相关知识认知情况调查. 护理研究, 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, Mengulluoğlu 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.	庞冬, 那利, 路潜, 等. 社区脑卒中病人主要照顾者负担的调查. 中华护理杂志, 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.	杨华, 赵晓峰, 王舒. 脑卒中的卫生经济学评价. 中国卫生经济, 2008, 27(11): 55-57.
45.	杨新明. 脑卒中治疗和费用情况调查分析. 职业与健康, 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, 冯云辉. 脑卒中患者主要照顾者的生活质量及其相关因素. 中国临床康复, 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, 杨小湜, 侯哲, 等. 护理者负担量表中文版的应用与评价. 中国公共卫生, 2006(8): 970-972.
13. 王慧萍, 陈京立, 郭园丽, 等. 住院脑卒中患者主要照顾者负担及影响因素的研究. 解放军护理杂志, 2010, 27(16): 1210-1213.
14. 郑茶凤, 邵秀芹. 脑卒中患者照顾者负担的调查. 实用临床医学, 2012, 13(11): 128-129, 139.
15. 梅永霞, 张振香, 林蓓蕾, 等. 社区脑卒中照顾者负担及其影响因素. 中国老年学杂志, 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. Elmståhl 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. 孙晓, 毛雅芬, 施雁, 等. 卒中病人居家照顾者疾病相关知识认知情况调查. 护理研究, 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, Mengulluoğlu 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. 庞冬, 那利, 路潜, 等. 社区脑卒中病人主要照顾者负担的调查. 中华护理杂志, 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. 杨华, 赵晓峰, 王舒. 脑卒中的卫生经济学评价. 中国卫生经济, 2008, 27(11): 55-57.
45. 杨新明. 脑卒中治疗和费用情况调查分析. 职业与健康, 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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