脊髓损伤患者社会参与的研究现状分析
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摘要
<正>脊髓损伤(Spinal cord injury,SCI)是由各种原因引起的颈、胸、腰和骶段脊椎管内脊髓结构、功能的损害,造成损伤平面以下不同程度的感觉、运动和自主神经功能障碍~([1])。世界范围内SCI的发病率为每年10.4/106~83/106~([2-3])。发达国家的发病率为13.1/106~52.2/106,发展中国家为12.7/106~29.7/106~([4])。我国SCI发病率为14.6/106~61.6/106~([5])。随着世界
引文
[1]燕铁斌.康复护理学[M].3版.北京:人民卫生出版社,2012:209.
[2]Wyndaele M,Wyndaele J.Incidence,prevalence and epidemiology of spinal cord injury:What learns a worldwide literature survey?[J].Spinal Cord,2006,44(9):523-529.
[3]Van den Berg M E,Castellote J M,Mahillo-Fernandez I,et al.Incidence of spinal cord injury worldwide:A systematic review[J].Neuroepidemiology,2010,34(3):184-192.
[4]Chiu W T,Lin H C,Lam C,et al.Review paper:epidemiology of traumatic spinal cord injury:Comparisons between developed and developing countries[J].Asia Pac J Public Health,2010,22(1):9-18.
[5]宁广智.天津市脊髓损伤流行病学调查研究[D].天津:天津医科大学,2012.
[6]茹庆超.大连市脊髓损伤流行病学调查研究[D].大连:大连医科大学,2014.
[7]Kennedy P,Lude P,Taylor N.Quality of life,social participation,appraisals and coping post spinal cord injury:a review of four community samples[J].Spinal Cord,2006,44(2):95-105.
[8]Lund M L,Lexell J.Relationship between participation in life situations and life satisfaction in persons with late effects of polio[J].Disabil Rehabil,2009,31(19):1592-1597.
[9]Barker R N,Kendall M D,Amsters D I,et al.The relationship between quality of life and disability across the lifespan for people with spinal cord injury[J].Spinal Cord,2009,47(2):149-155.
[10]Pikur B,Daniels R,Jongmans M J,et al.Participation and social participation:Are they distinct concepts?[J].Clin Rehabil,2014,28(3):211-220.
[11]Harty M,Griesel M,Merwe A V D.The ICF as a common language for rehabilitation goal-setting:comparing client and professional priorities[J].Health Quality Life Outcomes,2011,9(1):1-9.
[12]World Health Organization.International classification of functioning,disability and health[M].Geneva:World Health Organization,2001.
[13]Piskur B.Social participation:Redesign of education,research,and practice in occupational therapy[J].Scand J Occup Ther,2013,20(1):2-8.
[14]Levasseur M,Richard L,Gauvin L,et al.Inventory and analysis of definitions of social participation found in the aging literature:proposed taxonomy of social activities[J].Soc Sci Med,2010,71(12):2141-2149.
[15]Chang F H,Coster W J,Helfrich C A.Community participation measures for people with disabilities:A systematic review of content from an international classification of functioning,disability and health perspective[J].Arch Phys Med Rehabil,2013,94(4):771-781.
[16]Koster M,Nakken H,Pijl S J,et al.Assessing social participation of pupils with special needs in inclusive education:The construction of a teacher questionnaire[J].Educational Research and Evaluation,2008,14(5):395-409.
[17]Cardol M,Haan R,van den,et al.The development of a handicap assessment questionnaire:The impacct on participation and autonomy[J].Clinical Rehabilitation,1999,13(5):411-419.
[18]李红,崔明,周兰姝.中文版参与和自主性测评问卷的修订及信度、效度分析[J].中国康复医学杂志,2012,27(10):923-927.
[19]Fougeyrollas P,Noreau L,Bergeron H,et al.Social consequences of long term impairments and disabilities:Conceptual approach and assessment of handicap[J].Int J Rehabil Res,1998,21(2):127-141.
[20]Noreau L,Desrosiers J,Robichaud L,et al.Measuring social participation:Reliability of the LIFE-H in older adults with disabilities[J].Disabil Rehabil,2004,26(6):346-352.
[21]曾德建,尤黎明,罗志民.出院后脑卒中患者日常生活活动和社会参与状况的研究[J].护理学杂志,2011,26(1):76-78.
[22]邱卓英,荀芳.基于ICF的康复评定工具开发与标准化研究[J].中国康复理论与实践,2011,17(2):101-105.
[23]Gray D,Hollingsworth H,Stark L,et al.Participation survey/mobility:Psychometric properties of a measure of participation for people with mobility impairment and limitations[J].Arch Phys Med Rehabil,2006,87(2):189-197.
[24]Gandek B,Sinclair S J,Jette A M,et al.Development and initial psychometric evaluation of the participation measure for post-acute care(PM-PAC)[J].Am J Phys Med Rehabil,2007,86(1):55-71.
[25]Noonan V K,Kopec J A,Masse L C,et al.Measuring participation among persons with spinal cord injury:Comparison of three instruments[J].Top Spinal Cord Inj Rehabil,2010,15(15):49-62.
[26]Barclay L,McDonald R,Lentin P.Social and community participation following spinal cord injury:A critical review[J].Int J Rehabil Res,2015,38(1):1-19.
[27]Sch9nherr M C,Groothoff J W,Mulder G A,et al.Participation and satisfaction after spinal cord injury:Results of a vocational and leisure outcome study[J].Spinal Cord,2005,43(4):241-248.
[28]Nightingale T E,Walhin J P,Turner J E,et al.The influence of a home-based exercise intervention on human health indices in individuals with chronic spinal cord injury:Study protocol for a randomised controlled trial[J].Trials,2016,17(1):1-12.
[29]Krause J S,Reed K S.Barriers and facilitators to employment after spinal cord injury:Underlying dimensions and their relationship to labor force participation[J].Spinal Cord,2011,49(2):285-291.
[30]Price P,Stephenson S,Krantz L,et al.Beyond my front door:The occupational and social participation of adults with spinal cord injury[J].OTJR,2011,31(2):81-88.
[31]Lund M,Nordlund A,Nygard L,et al.Perceptions of participation and predictors of perceived problems with participation in persons with spinal cord injury[J].J Rehabil Med,2005,37(1):3-8.
[32]Lund M,Nordlund A,Bernspang B,et al.Perceived participation and problems in participation are determinants of life satisfaction in people with spinal cord injury[J].Disabil Rehabil,2007,29(18):1417-1422.
[33]Noreau L,Fougeyrollas P.Long-term consequences of spinal cord injury on social participation:The occurrence of handicap situations[J].Disabil Rehabil,2000,22(4):170-180.
[34]施红梅.脊髓损伤患者情绪状态与活动和参与功能研究[J].中国康复理论与实践,2017,23(8):946-949.
[35]Ripat J D,Woodgate R L.Self-perceived participation among adults with spinal cord injury:A grounded theory study[J].Spinal Cord,2012,50(12):908-914.
[36]Price P,Stephenson S,Krantz L,et al.Beyond my front door:The occupational and social participation of adults with spinal cord injury[J].OTJR,2011,31(2):81-88.
[37]向桃,罗伦,苏文渊,等.脊髓损伤全面康复模式促进职业社会回归的探讨[J].四川医学,2014,35(11):1408-1411.
[38]Ashley C,Kathryn N P,Rebecca G,et al.Adjustment following chronic spinal cord injury:Determining factors that contribute to social participation[J].Br J Health Psychol,2015,20(4):807-823.
[39]Marcel W M,Reinhardt,Jan D.Participation and life satisfaction in aged people with spinal cord injury:Does age at onset make a difference?[J].Top Spinal Cord Inj Rehabil,2015,21(3):233-240.
[40]Krebs J,Katrin Brust A,Tesini S,et al.Study participation rate of patients with acute spinal cord injury early during rehabilitation[J].Spinal Cord,2015,53(10):1-5.
[41]Margaret B,Wayne A,Lisa S,et al.Participation by individuals with spinal cord injury in social and recreational activity outside the home[J].Top Spinal Cord Inj Rehabil,2002,7(3):83-100.
[42]Luc N,Patrick F,Kathryn A.Perceived influence of the environment on social participation among individuals with spinal cord injury[J].Top Spinal Cord Inj Rehabil,2002,7(3):56-72.
[43]Effat M,Sahar L,Fereshteh R,et al.The effect of injury-related characteristics on changes in marital status after spinal cord injury[J].Iran J Public Health,2015,10(44):1395-1402.
[44]Lawrence C,Kathleen M,Kathy Zebracki,et al.Long-term outcomes of adults with pediatriconset spinal cord injuries as a function of neurological impairment[J].J Spinal Cord Med,2011,34(1):60-66.
[45]Christine F,Wolfgang S,Armin G,et al.Participation rates,response bias and response behaviours in the community survey of the swiss spinal cord injury cohort study[J].BMC,2015,15(1):1-14.
[46]Zahra K,Abbas N,Mahboobeh K,et al.Psychosocial outcomes following spinal cord injury in Iran[J].J Spinal Cord Med,2014,37(3):338-345.
[47]Linda B,McDonald R,Primrose L,et al.Facilitators and barriers to social and community participation following spinal cord injury[J].Aust Occup Ther J,2016,63(1):19-28.
[48]Donnelly C,Eng J.Pain following spinal cord injury:The impact on community reintegration[J].Spinal Cord,2005,43(5),278-282.
[49]徐艳文,Chow S L,唐丹.脊髓损伤18个月后患者残疾心理适应能力的问卷调查分析[J]中国脊柱脊髓杂志,2014,24(2):133-143.
[50]Whiteneck G,Meade M A,Dijkers M,et al.Environmental factors and their role in participation and life satisfaction after spinal cord injury[J].Arch Phys Med Rehabil 2004,85(11):1793-1803.
[51]Isaksson G,Lexell J,Skar L.Social support provides motivation and ability to participate in occupation[J].OTJR:Occupation,Participation and Health,2007,27(1):23-30.
[52]Shane N,Luc N,Jean L,et al.Peer support need fulfillment among adults with spinal cord injury:Relationships with participation,life satisfaction and individual characteristics[J].Disabil Rehabil,2016;38(6):558-565.
[2]Wyndaele M,Wyndaele J.Incidence,prevalence and epidemiology of spinal cord injury:What learns a worldwide literature survey?[J].Spinal Cord,2006,44(9):523-529.
[3]Van den Berg M E,Castellote J M,Mahillo-Fernandez I,et al.Incidence of spinal cord injury worldwide:A systematic review[J].Neuroepidemiology,2010,34(3):184-192.
[4]Chiu W T,Lin H C,Lam C,et al.Review paper:epidemiology of traumatic spinal cord injury:Comparisons between developed and developing countries[J].Asia Pac J Public Health,2010,22(1):9-18.
[5]宁广智.天津市脊髓损伤流行病学调查研究[D].天津:天津医科大学,2012.
[6]茹庆超.大连市脊髓损伤流行病学调查研究[D].大连:大连医科大学,2014.
[7]Kennedy P,Lude P,Taylor N.Quality of life,social participation,appraisals and coping post spinal cord injury:a review of four community samples[J].Spinal Cord,2006,44(2):95-105.
[8]Lund M L,Lexell J.Relationship between participation in life situations and life satisfaction in persons with late effects of polio[J].Disabil Rehabil,2009,31(19):1592-1597.
[9]Barker R N,Kendall M D,Amsters D I,et al.The relationship between quality of life and disability across the lifespan for people with spinal cord injury[J].Spinal Cord,2009,47(2):149-155.
[10]Pikur B,Daniels R,Jongmans M J,et al.Participation and social participation:Are they distinct concepts?[J].Clin Rehabil,2014,28(3):211-220.
[11]Harty M,Griesel M,Merwe A V D.The ICF as a common language for rehabilitation goal-setting:comparing client and professional priorities[J].Health Quality Life Outcomes,2011,9(1):1-9.
[12]World Health Organization.International classification of functioning,disability and health[M].Geneva:World Health Organization,2001.
[13]Piskur B.Social participation:Redesign of education,research,and practice in occupational therapy[J].Scand J Occup Ther,2013,20(1):2-8.
[14]Levasseur M,Richard L,Gauvin L,et al.Inventory and analysis of definitions of social participation found in the aging literature:proposed taxonomy of social activities[J].Soc Sci Med,2010,71(12):2141-2149.
[15]Chang F H,Coster W J,Helfrich C A.Community participation measures for people with disabilities:A systematic review of content from an international classification of functioning,disability and health perspective[J].Arch Phys Med Rehabil,2013,94(4):771-781.
[16]Koster M,Nakken H,Pijl S J,et al.Assessing social participation of pupils with special needs in inclusive education:The construction of a teacher questionnaire[J].Educational Research and Evaluation,2008,14(5):395-409.
[17]Cardol M,Haan R,van den,et al.The development of a handicap assessment questionnaire:The impacct on participation and autonomy[J].Clinical Rehabilitation,1999,13(5):411-419.
[18]李红,崔明,周兰姝.中文版参与和自主性测评问卷的修订及信度、效度分析[J].中国康复医学杂志,2012,27(10):923-927.
[19]Fougeyrollas P,Noreau L,Bergeron H,et al.Social consequences of long term impairments and disabilities:Conceptual approach and assessment of handicap[J].Int J Rehabil Res,1998,21(2):127-141.
[20]Noreau L,Desrosiers J,Robichaud L,et al.Measuring social participation:Reliability of the LIFE-H in older adults with disabilities[J].Disabil Rehabil,2004,26(6):346-352.
[21]曾德建,尤黎明,罗志民.出院后脑卒中患者日常生活活动和社会参与状况的研究[J].护理学杂志,2011,26(1):76-78.
[22]邱卓英,荀芳.基于ICF的康复评定工具开发与标准化研究[J].中国康复理论与实践,2011,17(2):101-105.
[23]Gray D,Hollingsworth H,Stark L,et al.Participation survey/mobility:Psychometric properties of a measure of participation for people with mobility impairment and limitations[J].Arch Phys Med Rehabil,2006,87(2):189-197.
[24]Gandek B,Sinclair S J,Jette A M,et al.Development and initial psychometric evaluation of the participation measure for post-acute care(PM-PAC)[J].Am J Phys Med Rehabil,2007,86(1):55-71.
[25]Noonan V K,Kopec J A,Masse L C,et al.Measuring participation among persons with spinal cord injury:Comparison of three instruments[J].Top Spinal Cord Inj Rehabil,2010,15(15):49-62.
[26]Barclay L,McDonald R,Lentin P.Social and community participation following spinal cord injury:A critical review[J].Int J Rehabil Res,2015,38(1):1-19.
[27]Sch9nherr M C,Groothoff J W,Mulder G A,et al.Participation and satisfaction after spinal cord injury:Results of a vocational and leisure outcome study[J].Spinal Cord,2005,43(4):241-248.
[28]Nightingale T E,Walhin J P,Turner J E,et al.The influence of a home-based exercise intervention on human health indices in individuals with chronic spinal cord injury:Study protocol for a randomised controlled trial[J].Trials,2016,17(1):1-12.
[29]Krause J S,Reed K S.Barriers and facilitators to employment after spinal cord injury:Underlying dimensions and their relationship to labor force participation[J].Spinal Cord,2011,49(2):285-291.
[30]Price P,Stephenson S,Krantz L,et al.Beyond my front door:The occupational and social participation of adults with spinal cord injury[J].OTJR,2011,31(2):81-88.
[31]Lund M,Nordlund A,Nygard L,et al.Perceptions of participation and predictors of perceived problems with participation in persons with spinal cord injury[J].J Rehabil Med,2005,37(1):3-8.
[32]Lund M,Nordlund A,Bernspang B,et al.Perceived participation and problems in participation are determinants of life satisfaction in people with spinal cord injury[J].Disabil Rehabil,2007,29(18):1417-1422.
[33]Noreau L,Fougeyrollas P.Long-term consequences of spinal cord injury on social participation:The occurrence of handicap situations[J].Disabil Rehabil,2000,22(4):170-180.
[34]施红梅.脊髓损伤患者情绪状态与活动和参与功能研究[J].中国康复理论与实践,2017,23(8):946-949.
[35]Ripat J D,Woodgate R L.Self-perceived participation among adults with spinal cord injury:A grounded theory study[J].Spinal Cord,2012,50(12):908-914.
[36]Price P,Stephenson S,Krantz L,et al.Beyond my front door:The occupational and social participation of adults with spinal cord injury[J].OTJR,2011,31(2):81-88.
[37]向桃,罗伦,苏文渊,等.脊髓损伤全面康复模式促进职业社会回归的探讨[J].四川医学,2014,35(11):1408-1411.
[38]Ashley C,Kathryn N P,Rebecca G,et al.Adjustment following chronic spinal cord injury:Determining factors that contribute to social participation[J].Br J Health Psychol,2015,20(4):807-823.
[39]Marcel W M,Reinhardt,Jan D.Participation and life satisfaction in aged people with spinal cord injury:Does age at onset make a difference?[J].Top Spinal Cord Inj Rehabil,2015,21(3):233-240.
[40]Krebs J,Katrin Brust A,Tesini S,et al.Study participation rate of patients with acute spinal cord injury early during rehabilitation[J].Spinal Cord,2015,53(10):1-5.
[41]Margaret B,Wayne A,Lisa S,et al.Participation by individuals with spinal cord injury in social and recreational activity outside the home[J].Top Spinal Cord Inj Rehabil,2002,7(3):83-100.
[42]Luc N,Patrick F,Kathryn A.Perceived influence of the environment on social participation among individuals with spinal cord injury[J].Top Spinal Cord Inj Rehabil,2002,7(3):56-72.
[43]Effat M,Sahar L,Fereshteh R,et al.The effect of injury-related characteristics on changes in marital status after spinal cord injury[J].Iran J Public Health,2015,10(44):1395-1402.
[44]Lawrence C,Kathleen M,Kathy Zebracki,et al.Long-term outcomes of adults with pediatriconset spinal cord injuries as a function of neurological impairment[J].J Spinal Cord Med,2011,34(1):60-66.
[45]Christine F,Wolfgang S,Armin G,et al.Participation rates,response bias and response behaviours in the community survey of the swiss spinal cord injury cohort study[J].BMC,2015,15(1):1-14.
[46]Zahra K,Abbas N,Mahboobeh K,et al.Psychosocial outcomes following spinal cord injury in Iran[J].J Spinal Cord Med,2014,37(3):338-345.
[47]Linda B,McDonald R,Primrose L,et al.Facilitators and barriers to social and community participation following spinal cord injury[J].Aust Occup Ther J,2016,63(1):19-28.
[48]Donnelly C,Eng J.Pain following spinal cord injury:The impact on community reintegration[J].Spinal Cord,2005,43(5),278-282.
[49]徐艳文,Chow S L,唐丹.脊髓损伤18个月后患者残疾心理适应能力的问卷调查分析[J]中国脊柱脊髓杂志,2014,24(2):133-143.
[50]Whiteneck G,Meade M A,Dijkers M,et al.Environmental factors and their role in participation and life satisfaction after spinal cord injury[J].Arch Phys Med Rehabil 2004,85(11):1793-1803.
[51]Isaksson G,Lexell J,Skar L.Social support provides motivation and ability to participate in occupation[J].OTJR:Occupation,Participation and Health,2007,27(1):23-30.
[52]Shane N,Luc N,Jean L,et al.Peer support need fulfillment among adults with spinal cord injury:Relationships with participation,life satisfaction and individual characteristics[J].Disabil Rehabil,2016;38(6):558-565.