期刊论文详细信息
BMC International Health and Human Rights
Developing human rights based indicators to support country monitoring of rehabilitation services and programmes for people with disabilities: a study protocol
Jerome Bickenbach1  Dimitrios Skempes2 
[1] Department of Health Sciences and Health Policy, University of Lucerne and Swiss Paraplegic Research, Guido A. Zaech Institute (GZI), Nottwil, CH-6207, Switzerland;Human Rights in Patients Care Program, Association of Schools of Public Health in the European Region (ASPHER), Brussels, Belgium
关键词: Performance assessment;    Accountability;    Indicators;    Human rights;    Rehabilitation;    Health services for persons with disabilities;   
Others  :  1228171
DOI  :  10.1186/s12914-015-0063-x
 received in 2015-07-31, accepted in 2015-09-11,  发布年份 2015
PDF
【 摘 要 】

Background

Rehabilitation care is fundamental to health and human dignity and a human right enshrined in the United Nations Convention on the Rights of Persons with Disabilities. The provision of rehabilitation is important for reducing the need for formal support and enabling persons with disabilities to lead an independent life. Increasingly scholars and advocacy groups voice concerns over the significant barriers facing people with disabilities in accessing appropriate and quality rehabilitation. A growing body of research highlights a “respond-need” gap in the provision of rehabilitation and assistive technologies and underscore the lack of indicators for assessing performance of rehabilitation systems and monitoring States compliance with human rights standards in rehabilitation service planning and programming. While research on human rights and health monitoring has increased exponentially over the last decade far too little attention has been paid to rehabilitation services. The proposed research aims to reduce this knowledge gap by developing a human rights based monitoring framework with indicators to support human rights accountability and performance assessment in rehabilitation.

Methods/Design

Concept mapping, a stakeholder-driven approach will be used as the core method to identify rights based indicators and develop the rehabilitation services monitoring framework. Concept mapping requires participants from various stakeholders groups to generate a list of the potential indicators through on line brainstorming, sort the indicators for conceptual similarity into clusters and rate them against predefined criteria. Multidimensional scaling and hierarchical cluster data analysis will be performed to develop the monitoring framework while bridging analysis will provide useful insights about patterns of agreement or disagreement among participants views on indicators.

Discussion

This study has the potential to influence future practices on data collection and measurement of compliance with human rights standards in rehabilitation service delivery and organization. The development of a valid and universally applicable set of indicators will have a profound impact on the design and implementation of evidence informed disability policies and programs as it can support countries in strengthening performance measurement through documentation of comparative information on rehabilitation care systems. Most importantly, the resulting indicators can be used by disabled people’s organizations as well as national and international institutions to define a minimal standard for monitoring and reporting progress on the implementation of the Convention on the Rights of Persons with Disabilities in the area of rehabilitation.

【 授权许可】

   
2015 Skempes and Bickenbach.

【 预 览 】
附件列表
Files Size Format View
20151010020301859.pdf 883KB PDF download
Fig. 1. 53KB Image download
【 图 表 】

Fig. 1.

【 参考文献 】
  • [1]World Health Organization and World Bank. World report on disability. Geneva: World Health Organization; 2011. http://whqlibdoc. who.int/publications/2011/9789240685215_eng.pdf webcite
  • [2]Global Burden of Disease Study 2013 Collaborators. Global, regional, and national incidence, prevalence, and years lived with disability for 301 acute and chronic diseases and injuries in 188 countries, 1990–2013: a systematic analysis for the Global Burden of Disease Study 2013. Lancet. 2015; (In press).
  • [3]Chamberlain JD, Meier S, Mader L, von Groote PM, Brinkhof MWG. Mortality and longevity after a spinal cord injury: systematic review and meta-analysis. Neuroepidemiology. 2015; 44(3):182-98.
  • [4]Morgon Banks L, Polack S. The economic costs of exclusion and gains of inclusion of people with disabilities: evidence from low and middle income countries. London, UK: International Centre for Evidence in Disability, London School of Hygiene & Tropical Medicine; 2014: 1–73.http://disabilitycentre.lshtm.ac.uk/files/2014/07/Costs-of-Exclusion-and-Gains-of-Inclusion-Report.pdf
  • [5]Palmer M. Disability and poverty: a conceptual review. J Disabil Policy Stud. 2011; 21(4):210-8.
  • [6]Meyer T, Gutenbrunner C, Bickenbach J, Cieza A, Melvin J, Stucki G. Towards a conceptual description of rehabilitation as a health strategy. J Rehabil Med. 2011; 43(9):765-9.
  • [7]United Nations. Convention on the rights of persons with disabilities. New York: United Nations; 2006. http://www. un.org/disabilities/documents/convention/convoptprot-e.pdf webcite
  • [8]Skempes D, Stucki G, Bickenbach J. Health-related rehabilitation and human rights: analyzing states’ obligations under the United Nations Convention on the Rights of Persons with Disabilities. Arch Phys Med Rehabil. 2015; 96(1):163-73.
  • [9]Turner-Stokes L, McCrone P, Jackson DM, Siegert RJ. The needs and provision complexity scale: a multicentre prospective cohort analysis of met and unmet needs and their cost implications for patients with complex neurological disability. BMJ Open. 2013; 3:2.
  • [10]Eide AH, Mannan H, Khogali M, van Rooy G, Swartz L, Munthali A, et al. Perceived barriers for accessing health services among individuals with disability in four African countries. PLoS One. 2015;10(5), e0125915.
  • [11]New PW, Scivoletto G, Smith E, Townson A, Gupta A, Reeves RK et al.. International survey of perceived barriers to admission and discharge from spinal cord injury rehabilitation units. Spinal Cord. 2013; 51(12):893-7.
  • [12]Tistad M, Tham K, von Koch L, Ytterberg C. Unfulfilled rehabilitation needs and dissatisfaction with care 12 months after a stroke: an explorative observational study. BMC Neurol. 2012;12(1):40.
  • [13]Jaffe KM, Jimenez N. Disparity in rehabilitation: another inconvenient truth. Arch Phys Med Rehabil. 2015, 96(8):1371-1374.
  • [14]Meade MA, Mahmoudi E, Lee SY. The intersection of disability and healthcare disparities: a conceptual framework. Disabil Rehabil. 2015; 37(7):632-41.
  • [15]Palmer M, Harley D. Models and measurement in disability: an international review. Health Policy Plan. 2012; 27(5):357-64.
  • [16]Van Brakel WH, Officer A. Approaches and tools for measuring disability in low and middle-income countries. Lepr Rev. 2008; 79(1):50-64.
  • [17]Goujon N, Devine A, Baker SM, Sprunt B, Edmonds TJ, Booth JK et al.. A comparative review of measurement instruments to inform and evaluate effectiveness of disability inclusive development. Disabil Rehabil. 2014; 36(10):804-12.
  • [18]Philibert M, Pampalon R, Daniel M. Conceptual and operational considerations in identifying socioenvironmental factors associated with disability among community-dwelling adults. Int J Environ Res Public Health. 2015; 12(4):3814-34.
  • [19]World Health Organization. Executive Board. Draft WHO global disability action plan 2014–2021: Better health for all people with disabilities (EB134/16). Geneva: World Health Organization; 2014.http://apps.who.int/gb/ebwha/pdf_files/EB134/B134_16-en.pdf?ua=1
  • [20]Model Disability Survey. Providing evidence for accountability and decision-making. WHO;. http://www. who.int/disabilities/data/mds.pdf webcite
  • [21]Ustun TB, Chatterji S, Kostansjek N, Bickenbach J. WHO’s ICF and functional status information in health records. Health Care Financ Rev. 2003;24(3):77–88.
  • [22]Madden R, Ferreira M, Einfeld S, Emerson E, Manga R, Refshauge K et al.. New directions in health care and disability: the need for a shared understanding of human functioning. Aust N Z J Public Health. 2012; 36(5):458-61.
  • [23]Skempes D, Bickenbach J. Strengthening rehabilitation for people with disabilities: a human rights approach as the essential next step to accelerating global progress. Am J Phys Med Rehabil 2015;Publish Ahead of Print.
  • [24]Madans JH, Loeb ME, Altman BM. Measuring disability and monitoring the UN convention on the rights of persons with disabilities: the work of the Washington group on disability statistics. BMC Public Health. 2011; 11 Suppl 4:S4. BioMed Central Full Text
  • [25]Mitra S. A data revolution for disability-inclusive development. Lancet Global Health. 2013; 1(4):e178-9.
  • [26]Hammonds R, Ooms G. World Bank policies and the obligation of its members to respect, protect and fulfill the right to health. Health Hum Rights. 2004; 8(1):27-60.
  • [27]Guerrnsey K, Nicoli M, Ninio A. Convention on the rights of persons with disabilities: its implementation and relevance for the World Bank. Washington, DC: World Bank; 2007.http://documents.worldbank.org/curated/en/2007/06/7717370/convention-rights-persons-disabilities-implementation-relevance-world-bank
  • [28]Yousafzai AK, Lynch P, Gladstone M. Moving beyond prevalence studies: screening and interventions for children with disabilities in low-income and middle-income countries. Arch Dis Child. 2014;99(9):840–8.
  • [29]Landman T, Carvalho E. Measuring human rights: Routledge; 2009.
  • [30]Tobin J. The right to health in international Law. Oxford University Press, New York; 2012.
  • [31]Gupta N, Castillo-Laborde C, Landry M. Health-related rehabilitation services: assessing the global supply of and need for human resources. BMC Health Serv Res. 2011; 11(1):276. BioMed Central Full Text
  • [32]Boerma T, Eozenou P, Evans D, Evans T, Kieny M-P, Wagstaff A. Monitoring progress towards universal health coverage at country and global levels. PLoS Med. 2014; 11(9): Article ID e1001731
  • [33]Boerma T, AbouZahr C, Evans D, Evans T. Monitoring intervention coverage in the context of universal health coverage. PLoS Med. 2014; 11(9): Article ID e1001728
  • [34]World Health Organization. Global reference list of 100 core health indicators. Geneva: World Health Organization; 2015.http://apps.who.int/iris/bitstream/10665/173589/1/WHO_HIS_HSI_2015.3_eng.pdf?ua=1
  • [35]Backman G, Hunt P, Khosla R, Jaramillo-Strouss C, Fikre BM, Rumble C, Pevalin D, et al. Health systems and the right to health: an assessment of 194 countries. Lancet, 372(9655):2047–2085.
  • [36]Gruskin S, Ferguson L, Alfven T, Rugg D, Peersman G. Identifying structural barriers to an effective HIV response: using the National Composite Policy Index data to evaluate the human rights, legal and policy environment. J Int AIDS Soc. 2013; 16:18000.
  • [37]Randall J, Thornicroft G, Burti L, Katschnig H, Lewis O, Russo J et al.. Development of the ITHACA Toolkit for monitoring human rights and general health care in psychiatric and social care institutions. Epidemiol Psychiatric Sci. 2013; 22(03):241-54.
  • [38]Amin M, MacLachlan M, Mannan H, El Tayeb S, El Khatim A, Swartz L et al.. EquiFrame: a framework for analysis of the inclusion of human rights and vulnerable groups in health policies. Health Hum Rights. 2011; 13(2):1-20.
  • [39]French P, Chan J, Carracher R. Realizing human rights in clinical practice and service delivery to persons with cognitive impairment who engage in behaviours of concern. Psychiatr Psycholo Law. 2010; 17(2):245-72.
  • [40]Fujiura GT, Rutkowski-Kmitta V, Owen R. Make measurable what is not so: national monitoring of the status of persons with intellectual disability. J Intellec Dev Disabil. 2010;35(4):244–58.
  • [41]Success Indicators for measuring the WHO action plan 2014–2021: better health for persons with disabilities. http://www. who.int/disabilities/policies/actionplan/concept_note_success_indicators.pdf webcite
  • [42]McInerney-Lankford S, Sano H-O. Human rights indicators in development: an introduction. Washington DC: The International Bank for Reconstruction and Development / The World Bank; 2010.http://siteresources.worldbank.org/EXTLAWJUSTICE/Resources/HumanRightsWP10_Final.pdf
  • [43]United Nations Office of the High Commissioner on Human Rights. Human rights indicators: a guide to measurement and implementation. New York: United Nations; 2012.http://www.ohchr.org/EN/Issues/Indicators/Pages/documents.aspx
  • [44]Brinkerhoff DW. Accountability and health systems: toward conceptual clarity and policy relevance. Health Policy Plan. 2004; 19(6):371-9.
  • [45]Watchirs H. Review of methodologies measuring human rights implementation. J Law Med Ethics. 2002; 30(4):716-33.
  • [46]Gruskin S, Ferguson L. Using indicators to determine the contribution of human rights to public health efforts. Bull World Health Organ. 2009;87:714–9.
  • [47]Fukuda-Parr S, Yamin AE, Greenstein J. The power of numbers: a critical review of millennium development goal targets for human development and human rights. J Human Dev Capabil. 2014;15(2–3):105–17.
  • [48]Fukuda-Parr S. Global goals as a policy tool: intended and unintended consequences. J Human Dev Capabil. 2014; 15(2–3):118-31.
  • [49]Andersen EA, Sano H-O. Human rights indicators at programme and project level: guidelines for defining indicators. Monitoring and Evaluation, Danish Institute for Human Rights; 2006.
  • [50]Center for Economic and Social Rights. The opera framework: assessing compliance with the obligation to fulfill economic, social and cultural rights. New York, USA: Center for Economic and Social Rights (CESR). 2012.http://www.cesr.org/downloads/the.opera.framework.pdf
  • [51]Trochim W, Kane M. Concept mapping: an introduction to structured conceptualization in health care. International J Qual Health Care. 2005; 17(3):187-91.
  • [52]Kane M, Trochim WM. Concept mapping for planning and evaluation. Volume 50. Thousand Oaks: Sage Publications Inc. Sage; 2007.
  • [53]Burke JG, O’Campo P, Peak GL, Gielen AC, McDonnell KA, Trochim WM. An introduction to concept mapping as a participatory public health research method. Qual Health Res. 2005; 15(10):1392-410.
  • [54]Petrucci CJ, Quinlan KM. Bridging the research-practice Gap: concept mapping as a mixed-methods strategy in practice-based research and evaluation. J Soc Service Res. 2007; 34(2):25-42.
  • [55]Kagan JM, Kane M, Quinlan KM, Rosas S, Trochim WM. Developing a conceptual framework for an evaluation system for the NIAID HIV/AIDS clinical trials networks. Health Res Policy Syst. 2009; 7:12. BioMed Central Full Text
  • [56]Groenewoud AS, van Exel NJ, Berg M, Huijsman R. Building quality report cards for geriatric care in The Netherlands: using concept mapping to identify the appropriate “building blocks” from the consumer’s perspective. Gerontologist. 2008; 48(1):79-92.
  • [57]Iris M, DeBacker NA, Benner R, Hammerman J, Ridings J. Creating a quality of life assessment measure for residents in long term care. J Am Med Dir Assoc. 2012; 13(5):438-47.
  • [58]Sjodahl Hammarlund C, Nilsson MH, Hagell P. Measuring outcomes in Parkinson’s disease: a multi-perspective concept mapping study. Qual Life Res. 2012; 21(3):453-63.
  • [59]Hammarlund CS, Nilsson MH, Idvall M, Rosas SR, Hagell P. Conceptualizing and prioritizing clinical trial outcomes from the perspectives of people with Parkinson’s disease versus health care professionals: a concept mapping study. Qual Life Res. 2014; 23(6):1687-700.
  • [60]Rosas SR, Kane M. Quality and rigor of the concept mapping methodology: a pooled study analysis. Eval Program Plann. 2012; 35(2):236-45.
  • [61]United Nations Office of the High Commissioner on Human Rights. Monitoring the convention on the rights of persons with disabilities: guidance for human rights monitors. Volume professional training series No. 17. New York and Geneva: United Nations; 2010. http://www. ohchr.org/Documents/Publications/Disabilities_training_17EN.pdf webcite
  • [62]World Health Organization Regional Office for Europe. Pathways to health system performance assessement. A manual to conducting health system performance assessement at national or sub-national level. Copenhagen: WHO; 2012. http://www. euro.who.int/__data/assets/pdf_file/0005/169412/e96512-Eng.pdf?ua=1 webcite
  • [63]World Health Organization. Monitoring the building blocks of the health system: a handbook of indicators and their measurement strategies. Geneva: WHO; 2010. http://www. who.int/healthinfo/systems/WHO_MBHSS_2010_full_web.pdf webcite
  • [64]Jackson KM, Trochim WMK. Concept mapping as an alternative approach for the analysis of open-ended survey responses. Organ Res Methods. 2002; 5(4):307-36.
  • [65]Concept Systems Inc (CSI). Concept systems global MAX™ [computer program]. 2013 edition. Ithaca, NY: Concept Systems Inc.
  • [66]Shekelle PG. Quality indicators and performance measures: methods for development need more standardization. J Clin Epidemiol. 2013; 66(12):1338-9.
  • [67]Priestley M, Waddington L, Bessozi C. Towards an agenda for disability research in Europe: learning from disabled people’s organisations. Disabil Soc. 2010; 25(6):731-46.
  • [68]Lawson A, Priestley M. Monitoring the implementation of the UN convention on the rights of persons with disabilities in europe: principles for the identification and use of indicators. Leeds: Academic Network of European Disability Experts (ANED); VT/2007/05; 2009: 1–63.http://www.disability-europe.net/content/pdf/ANED%202008%20Task%205%20Monitoring%20UN%20Convention%20report%20final%20version.pdf
  • [69]Delnoij D, Rademakers J, Groenewegen P. The Dutch consumer quality index: an example of stakeholder involvement in indicator development. BMC Health Serv Res. 2010; 10(1):88. BioMed Central Full Text
  • [70]Bennett S, Peters DH. Assessing national health systems: Why and How. Health Syst Reform. 2015; 1(1):9-17.
  • [71]Muñoz-Leiva F, Sánchez-Fernández J, Montoro-Ríos F, Ibáñez-Zapata J. Improving the response rate and quality in Web-based surveys through the personalization and frequency of reminder mailings. Qual Quant. 2010; 44(5):1037-52.
  • [72]Cho YI, Johnson TP, VanGeest JB. Enhancing surveys of health care professionals: a meta-analysis of techniques to improve response. Eval Health Prof. 2013; 36(3):382-407.
  • [73]Bristo M, Blauwet CA, Frontera W, Tolchin DW, Stein MA, Hoppe KM et al.. The convention on the rights of persons with disabilities: what is at stake for physiatrists and the patients we serve. PM R. 2014; 6(4):356-62.
  文献评价指标  
  下载次数:9次 浏览次数:11次