Disability in people affected by leprosy: the role of impairment, activity, social participation, stigma and discrimination
Background : Leprosy-related disability is a challenge to public health, and social and rehabilitation services in endemic countries. Disability is more than a mere physical dysfunction, and includes activity limitations, stigma, discrimination, and social participation restrictions. We assessed the...
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| Veröffentlicht in: | Global health action Jg. 5; H. 1; S. 18394 - 11 |
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| Hauptverfasser: | , , , , , , , , , |
| Format: | Journal Article |
| Sprache: | Englisch |
| Veröffentlicht: |
United States
Taylor & Francis
01.01.2012
Co-Action Publishing Taylor & Francis Group |
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| ISSN: | 1654-9716, 1654-9880, 1654-9880 |
| Online-Zugang: | Volltext |
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| Abstract | Background
: Leprosy-related disability is a challenge to public health, and social and rehabilitation services in endemic countries. Disability is more than a mere physical dysfunction, and includes activity limitations, stigma, discrimination, and social participation restrictions. We assessed the extent of disability and its determinants among persons with leprosy-related disabilities after release from multi drug treatment.
Methods
: We conducted a survey on disability among persons affected by leprosy in Indonesia, using a Rapid Disability Appraisal toolkit based on the International Classification of Functioning, Disability and Health. The toolkit included the Screening of Activity Limitation and Safety Awareness (SALSA) scale, Participation Scale, Jacoby Stigma Scale (anticipated stigma), Explanatory Model Interview Catalogue (EMIC) stigma scale and Discrimination assessment. Community members were interviewed using a community version of the stigma scale. Multivariate linear regression was done to identify factors associated with social participation.
Results
: Overall 1,358 persons with leprosy-related disability (PLD) and 931 community members were included. Seventy-seven percent of PLD had physical impairments. Impairment status deteriorated significantly after release from treatment (from 59% to 77%). Around 60% of people reported activity limitations and participation restrictions and 36% anticipated stigma. As for participation restrictions and stigma, shame, problems related to marriage and difficulties in employment were the most frequently reported problems. Major determinants of participation were severity of impairment and level of education, activity and stigma. Reported severity of community stigma correlated with severity of participation restrictions in the same districts.
Discussion
: The majority of respondents reported problems in all components of disability. The reported physical impairment after release from treatment justifies ongoing monitoring to facilitate early prevention. Stigma was a major determinant of social participation, and therefore disability. Stigma reduction activities and socio-economic rehabilitation are urgently needed in addition to strategies to reduce the development of further physical impairment after release from treatment. |
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| AbstractList | Leprosy-related disability is a challenge to public health, and social and rehabilitation services in endemic countries. Disability is more than a mere physical dysfunction, and includes activity limitations, stigma, discrimination, and social participation restrictions. We assessed the extent of disability and its determinants among persons with leprosy-related disabilities after release from multi drug treatment.BACKGROUNDLeprosy-related disability is a challenge to public health, and social and rehabilitation services in endemic countries. Disability is more than a mere physical dysfunction, and includes activity limitations, stigma, discrimination, and social participation restrictions. We assessed the extent of disability and its determinants among persons with leprosy-related disabilities after release from multi drug treatment.We conducted a survey on disability among persons affected by leprosy in Indonesia, using a Rapid Disability Appraisal toolkit based on the International Classification of Functioning, Disability and Health. The toolkit included the Screening of Activity Limitation and Safety Awareness (SALSA) scale, Participation Scale, Jacoby Stigma Scale (anticipated stigma), Explanatory Model Interview Catalogue (EMIC) stigma scale and Discrimination assessment. Community members were interviewed using a community version of the stigma scale. Multivariate linear regression was done to identify factors associated with social participation.METHODSWe conducted a survey on disability among persons affected by leprosy in Indonesia, using a Rapid Disability Appraisal toolkit based on the International Classification of Functioning, Disability and Health. The toolkit included the Screening of Activity Limitation and Safety Awareness (SALSA) scale, Participation Scale, Jacoby Stigma Scale (anticipated stigma), Explanatory Model Interview Catalogue (EMIC) stigma scale and Discrimination assessment. Community members were interviewed using a community version of the stigma scale. Multivariate linear regression was done to identify factors associated with social participation.Overall 1,358 persons with leprosy-related disability (PLD) and 931 community members were included. Seventy-seven percent of PLD had physical impairments. Impairment status deteriorated significantly after release from treatment (from 59% to 77%). Around 60% of people reported activity limitations and participation restrictions and 36% anticipated stigma. As for participation restrictions and stigma, shame, problems related to marriage and difficulties in employment were the most frequently reported problems. Major determinants of participation were severity of impairment and level of education, activity and stigma. Reported severity of community stigma correlated with severity of participation restrictions in the same districts.RESULTSOverall 1,358 persons with leprosy-related disability (PLD) and 931 community members were included. Seventy-seven percent of PLD had physical impairments. Impairment status deteriorated significantly after release from treatment (from 59% to 77%). Around 60% of people reported activity limitations and participation restrictions and 36% anticipated stigma. As for participation restrictions and stigma, shame, problems related to marriage and difficulties in employment were the most frequently reported problems. Major determinants of participation were severity of impairment and level of education, activity and stigma. Reported severity of community stigma correlated with severity of participation restrictions in the same districts.The majority of respondents reported problems in all components of disability. The reported physical impairment after release from treatment justifies ongoing monitoring to facilitate early prevention. Stigma was a major determinant of social participation, and therefore disability. Stigma reduction activities and socio-economic rehabilitation are urgently needed in addition to strategies to reduce the development of further physical impairment after release from treatment.DISCUSSIONThe majority of respondents reported problems in all components of disability. The reported physical impairment after release from treatment justifies ongoing monitoring to facilitate early prevention. Stigma was a major determinant of social participation, and therefore disability. Stigma reduction activities and socio-economic rehabilitation are urgently needed in addition to strategies to reduce the development of further physical impairment after release from treatment. Background: Leprosy-related disability is a challenge to public health, and social and rehabilitation services in endemic countries. Disability is more than a mere physical dysfunction, and includes activity limitations, stigma, discrimination, and social participation restrictions. We assessed the extent of disability and its determinants among persons with leprosy-related disabilities after release from multi drug treatment. Methods: We conducted a survey on disability among persons affected by leprosy in Indonesia, using a Rapid Disability Appraisal toolkit based on the International Classification of Functioning, Disability and Health. The toolkit included the Screening of Activity Limitation and Safety Awareness (SALSA) scale, Participation Scale, Jacoby Stigma Scale (anticipated stigma), Explanatory Model Interview Catalogue (EMIC) stigma scale and Discrimination assessment. Community members were interviewed using a community version of the stigma scale. Multivariate linear regression was done to identify factors associated with social participation. Results: Overall 1,358 persons with leprosy-related disability (PLD) and 931 community members were included. Seventy-seven percent of PLD had physical impairments. Impairment status deteriorated significantly after release from treatment (from 59% to 77%). Around 60% of people reported activity limitations and participation restrictions and 36% anticipated stigma. As for participation restrictions and stigma, shame, problems related to marriage and difficulties in employment were the most frequently reported problems. Major determinants of participation were severity of impairment and level of education, activity and stigma. Reported severity of community stigma correlated with severity of participation restrictions in the same districts. Discussion: The majority of respondents reported problems in all components of disability. The reported physical impairment after release from treatment justifies ongoing monitoring to facilitate early prevention. Stigma was a major determinant of social participation, and therefore disability. Stigma reduction activities and socio-economic rehabilitation are urgently needed in addition to strategies to reduce the development of further physical impairment after release from treatment. Background : Leprosy-related disability is a challenge to public health, and social and rehabilitation services in endemic countries. Disability is more than a mere physical dysfunction, and includes activity limitations, stigma, discrimination, and social participation restrictions. We assessed the extent of disability and its determinants among persons with leprosy-related disabilities after release from multi drug treatment. Methods : We conducted a survey on disability among persons affected by leprosy in Indonesia, using a Rapid Disability Appraisal toolkit based on the International Classification of Functioning, Disability and Health. The toolkit included the Screening of Activity Limitation and Safety Awareness (SALSA) scale, Participation Scale, Jacoby Stigma Scale (anticipated stigma), Explanatory Model Interview Catalogue (EMIC) stigma scale and Discrimination assessment. Community members were interviewed using a community version of the stigma scale. Multivariate linear regression was done to identify factors associated with social participation. Results : Overall 1,358 persons with leprosy-related disability (PLD) and 931 community members were included. Seventy-seven percent of PLD had physical impairments. Impairment status deteriorated significantly after release from treatment (from 59% to 77%). Around 60% of people reported activity limitations and participation restrictions and 36% anticipated stigma. As for participation restrictions and stigma, shame, problems related to marriage and difficulties in employment were the most frequently reported problems. Major determinants of participation were severity of impairment and level of education, activity and stigma. Reported severity of community stigma correlated with severity of participation restrictions in the same districts. Discussion : The majority of respondents reported problems in all components of disability. The reported physical impairment after release from treatment justifies ongoing monitoring to facilitate early prevention. Stigma was a major determinant of social participation, and therefore disability. Stigma reduction activities and socio-economic rehabilitation are urgently needed in addition to strategies to reduce the development of further physical impairment after release from treatment. Leprosy-related disability is a challenge to public health, and social and rehabilitation services in endemic countries. Disability is more than a mere physical dysfunction, and includes activity limitations, stigma, discrimination, and social participation restrictions. We assessed the extent of disability and its determinants among persons with leprosy-related disabilities after release from multi drug treatment. We conducted a survey on disability among persons affected by leprosy in Indonesia, using a Rapid Disability Appraisal toolkit based on the International Classification of Functioning, Disability and Health. The toolkit included the Screening of Activity Limitation and Safety Awareness (SALSA) scale, Participation Scale, Jacoby Stigma Scale (anticipated stigma), Explanatory Model Interview Catalogue (EMIC) stigma scale and Discrimination assessment. Community members were interviewed using a community version of the stigma scale. Multivariate linear regression was done to identify factors associated with social participation. Overall 1,358 persons with leprosy-related disability (PLD) and 931 community members were included. Seventy-seven percent of PLD had physical impairments. Impairment status deteriorated significantly after release from treatment (from 59% to 77%). Around 60% of people reported activity limitations and participation restrictions and 36% anticipated stigma. As for participation restrictions and stigma, shame, problems related to marriage and difficulties in employment were the most frequently reported problems. Major determinants of participation were severity of impairment and level of education, activity and stigma. Reported severity of community stigma correlated with severity of participation restrictions in the same districts. The majority of respondents reported problems in all components of disability. The reported physical impairment after release from treatment justifies ongoing monitoring to facilitate early prevention. Stigma was a major determinant of social participation, and therefore disability. Stigma reduction activities and socio-economic rehabilitation are urgently needed in addition to strategies to reduce the development of further physical impairment after release from treatment. |
| Author | Kusumawardhani, Laksmi Wilder-Smith, Annelies Djarir, Hernani Yulihane, Rita Kasim, Muhammad Kesumaningsih, Kadek I. Beise, Kerstin Sihombing, Benyamin van Brakel, Wim H. Kurniasari, Indra |
| AuthorAffiliation | 6 National Leprosy Training Centre, Makassar, Indonesia 3 Sub Directorate for Leprosy and Yaws, MOH, Jakarta, Indonesia 2 Athena Institute, VU University Amsterdam, Amsterdam, Netherlands 7 Institute of Public Health, University of Heidelberg, Heidelberg, Germany 5 Netherlands Leprosy Relief, Jakarta, Indonesia 1 Royal Tropical Institute (KIT), Amsterdam, Netherlands 4 Department of Medicine, National University of Singapore, Singapore |
| AuthorAffiliation_xml | – name: 1 Royal Tropical Institute (KIT), Amsterdam, Netherlands – name: 2 Athena Institute, VU University Amsterdam, Amsterdam, Netherlands – name: 3 Sub Directorate for Leprosy and Yaws, MOH, Jakarta, Indonesia – name: 7 Institute of Public Health, University of Heidelberg, Heidelberg, Germany – name: 4 Department of Medicine, National University of Singapore, Singapore – name: 6 National Leprosy Training Centre, Makassar, Indonesia – name: 5 Netherlands Leprosy Relief, Jakarta, Indonesia |
| Author_xml | – sequence: 1 givenname: Wim H. surname: van Brakel fullname: van Brakel, Wim H. organization: Athena Institute, VU University Amsterdam – sequence: 2 givenname: Benyamin surname: Sihombing fullname: Sihombing, Benyamin organization: Department of Medicine, National University of Singapore – sequence: 3 givenname: Hernani surname: Djarir fullname: Djarir, Hernani organization: Sub Directorate for Leprosy and Yaws, MOH – sequence: 4 givenname: Kerstin surname: Beise fullname: Beise, Kerstin organization: Sub Directorate for Leprosy and Yaws, MOH – sequence: 5 givenname: Laksmi surname: Kusumawardhani fullname: Kusumawardhani, Laksmi organization: Netherlands Leprosy Relief – sequence: 6 givenname: Rita surname: Yulihane fullname: Yulihane, Rita organization: Sub Directorate for Leprosy and Yaws, MOH – sequence: 7 givenname: Indra surname: Kurniasari fullname: Kurniasari, Indra organization: Sub Directorate for Leprosy and Yaws, MOH – sequence: 8 givenname: Muhammad surname: Kasim fullname: Kasim, Muhammad organization: National Leprosy Training Centre – sequence: 9 givenname: Kadek I. surname: Kesumaningsih fullname: Kesumaningsih, Kadek I. organization: National Leprosy Training Centre – sequence: 10 givenname: Annelies surname: Wilder-Smith fullname: Wilder-Smith, Annelies email: epvws@pacific.net.sg organization: Institute of Public Health, University of Heidelberg |
| BackLink | https://www.ncbi.nlm.nih.gov/pubmed/22826694$$D View this record in MEDLINE/PubMed |
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| Cites_doi | 10.3402/gha.v5i0.18394 10.47276/lr.76.4.305 10.47276/lr.78.4.330 10.47276/lr.76.4.335 10.1489/1544-581X(2003)71<190:MLSPRO>2.0.CO;2 10.1002/j.2051-5545.2009.tb00218.x 10.47276/lr.79.1.50 10.47276/lr.74.2.120 10.47276/lr.73.2.186 |
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| Copyright | 2012 Wim H. van Brakelet al. 2012 2012 Wim H. van Brakel et al. 2012 |
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| Keywords | leprosy participation stigma activity impairment disability discrimination ICF |
| Language | English |
| License | open-access: http://creativecommons.org/licenses/by-nc/3.0/: This is an Open Access article distributed under the terms of the Creative Commons Attribution-Noncommercial 3.0 Unported License (http://creativecommons.org/licenses/by-nc/3.0/), permitting all non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited. This is an Open Access article distributed under the terms of the Creative Commons Attribution-Noncommercial 3.0 Unported License, permitting all non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited. |
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| References | CIT0030 CIT0010 CIT0032 CIT0012 CIT0034 CIT0011 Chen S (CIT0033) 2005; 76 Scott J (CIT0037) 2000; 71 Gershon W (CIT0038) 1992; 63 van Brakel WH (CIT0017) 2003; 71 Van Brakel WH (CIT0008) 2008; 79 CIT0036 CIT0013 Arole S (CIT0028) 2002; 73 CIT0016 Kopparty SN (CIT0039) 1995; 67 Jopling WH (CIT0009) 1991; 62 Corrigan PW (CIT0031) 2009; 8 World Health Organisation (CIT0014) 2008; 83 CIT0021 CIT0020 CIT0001 CIT0023 CIT0022 Withington SG (CIT0018) 2003; 74 Nicholls PG (CIT0035) 2005; 76 Richardus JH (CIT0007) 2007; 78 CIT0025 CIT0002 CIT0024 CIT0005 CIT0027 CIT0004 CIT0026 CIT0029 |
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: Leprosy-related disability is a challenge to public health, and social and rehabilitation services in endemic countries. Disability is more than a... Leprosy-related disability is a challenge to public health, and social and rehabilitation services in endemic countries. Disability is more than a mere... Background: Leprosy-related disability is a challenge to public health, and social and rehabilitation services in endemic countries. Disability is more than a... |
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| SubjectTerms | activity Adolescent Adult Aged Aged, 80 and over Child Child, Preschool Cross-Sectional Studies Disability discrimination Female Health care Humans ICF impairment Indonesia - epidemiology Interpersonal Relations Leprosy Leprosy - complications Leprosy - epidemiology Leprosy - psychology Male Middle Aged Original participation Persons with Disabilities - psychology Persons with Disabilities - statistics & numerical data Persons with Intellectual Disabilities - psychology Persons with Intellectual Disabilities - statistics & numerical data Prejudice Public health Quality of Life Regression analysis Severity of Illness Index Social participation Social Stigma Socioeconomic Factors stigma Young Adult |
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| Title | Disability in people affected by leprosy: the role of impairment, activity, social participation, stigma and discrimination |
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