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Evaluation of the Role of Advocacy and the Quality of Care in Reducing Health Inequalities for People with Autism, Intellectual and Developmental Disabilities at Sheffield Teaching Hospitals
Abstract:Individuals with Autism, Intellectual and Developmental disabilities (AIDD) are one of the most vulnerable groups in society, hampered not only by their own limitations to understand and interact with the wider society, but also societal limitations in perception and understanding. Communication to express their needs and wishes is fundamental to enable such individuals to live and prosper in society. This research project was designed as an organisational case study, in a large secondary health care hospital within the National Health Service (NHS), to assess the quality of care provided to people with AIDD and to review the role of advocacy to reduce health inequalities in these individuals. Methods: The research methodology adopted was as an “insider researcher”. Data collection included both quantitative and qualitative data i.e. a mixed method approach. A semi-structured interview schedule was designed and used to obtain qualitative and quantitative primary data from a wide range of interdisciplinary frontline health care workers to assess their understanding and awareness of systems, processes and evidence based practice to offer a quality service to people with AIDD. Secondary data were obtained from sources within the organisation, in keeping with “Case Study” as a primary method, and organisational performance data were then compared against national benchmarking standards. Further data sources were accessed to help evaluate the effectiveness of different types of advocacy that were present in the organisation. This was gauged by measures of user and carer experience in the form of retrospective survey analysis, incidents and complaints. Results: Secondary data demonstrate near compliance of the Organisation with the current national benchmarking standard (Monitor Compliance Framework). However, primary data demonstrate poor knowledge of the Mental Capacity Act 2005, poor knowledge of organisational systems, processes and evidence based practice applied for people with AIDD. In addition there was poor knowledge and awareness of frontline health care workers of advocacy and advocacy schemes for this group. Conclusions: A significant amount of work needs to be undertaken to improve the quality of care delivered to individuals with AIDD. An operational strategy promoting the widespread dissemination of information may not be the best approach to deliver quality care and optimal patient experience and patient advocacy. In addition, a more robust set of standards, with appropriate metrics, needs to be developed to assess organisational performance which will stand the test of professional and public scrutiny.
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 Department of Health. “Valuing People. A new strategy for learning disability for the 21st century”. March 2001.
 Department of Health. "Valuing People Now: A New Three Year Strategy for People with Learning Disabilities." 2009.
 Mencap. "Death by indifference." London, Mencap 2007.
 A. Lawton. "Personalisation and Learning Disabilities: A review of evidence on advocacy and its practice for people with learning disabilities and high support needs." London: SCIE 2009.
 M. Flynn. "Winterbourne View Hospital: a serious case review." South Gloucestershire Safeguarding Adults Board 2012.
 HMSO. Equality Act 2010.
 HMSO. Autism Act 2009
 HMSO. Human Rights Act 1998
 E. Flynn. “A socio-legal analysis of advocacy for people with disabilities–competing concepts of ‘best interests’ and empowerment in legislation and policy on statutory advocacy services.” Journal of social welfare & family law, 2010. 32 (1), 23-36.
 A. Gaag. "Communication skills and adults with learning disabilities: eliminating professional myopia." British Journal of Learning Disabilities 26.3 1998: 88-93.
 J. Jones. "A total communication approach towards meeting the communication needs of people with learning disabilities."Tizard Learning Disability Review 5.1 2000: 20-26.
 American Speech-Language-Hearing Association. "Definitions of communication disorders and variations." 1993.
 Kress, Jeffrey S., and Maurice J. Elias. "Substance abuse prevention in special education populations: Review and recommendations." The Journal of Special Education 27.1 1993: 35-51.
 H. Bradley. "Assessing and Developing Successful Communication". People with Profound & Multiple Learning Disabilities: A Collaborative Approach to Meeting. Routledge , 2013.
 B. Gray, R. Jackson. Advocacy and Learning Disability. Jessica Kingsley Publishers, 2002.
 Citizen Information Centre, 2001
 M. Wullink et al. "Autonomy in Relation to Health among People with Intellectual Disability: A Literature Review." Journal of Intellectual Disability Research 53.9 2009: 816-26.
 HMSO. Care Act 2014.
 NHS England. Supporting people with a learning disability and/or autism who display behaviour that challenges, including those with a mental health condition. . London, NHS England. 2015.
 B. J. Pollard. "Autonomy and Paternalism in Medicine."The Medical Journal of Australia 159.11-12 (1993): 797-802.
 Mencap. "Death by Indifference. 74 Deaths and Counting." Mencap 2012.
 R. K. Yin. Case Study Research: Design and Methods. 5 Vol. Sage Publications, Incorporated, 2008.
 P. Baxter, S. Jack. Qualitative case study methodology: Study design and implementation for novice researchers. The Qualitative Report, 2008. 13 (4), p.p.544–559.
 J. Michael, A. Richardson. "Healthcare for all: The Independent Inquiry into Access to Healthcare for People with Learning Disabilities." Tizard Learning Disability Review 13.4 2008: 28-34.
 M. Exworthy, L. Berney, M. Powell. "'How Great Expectations in Westminster may be Dashed Locally': The Local Implementation of National Policy on Health Inequalities." Policy & Politics 30.1 2002: 79-96.
 N. K. Denzin. The Research Act: A Theoretical Introduction to Sociological Methods. Transaction publishers, 1973.
 J. C. Greene, V.J. Caracelli, W.F. Graham. "Toward a Conceptual Framework for Mixed-Method Evaluation Designs." Educational evaluation and policy analysis 11.3 1989: 255-74.
 J. W. Creswell. "Research Design: Qualitative, Quantitative, and Mixed Methods Approaches." 2003.
 R. B. Johnson, A.J. Onwuegbuzie. "Mixed Methods Research: A Research Paradigm Whose Time has Come." Educational researcher 33.7 (2004): 14-26.
 J. Mason. "Six Strategies for Mixing Methods and Linking Data in Social Science Research." 2006.
 S. R. Terrell. "Mixed-Methods Research Methodologies." The Qualitative Report 17.1. 2012: 254-80.
 E. DePoy, E, L.N. Gitlin. "Introduction to Research: Multiple Strategies for Health and Human Services. St. Louis: Mosby-Year Book." 1993.
 J. Mason. "Linking Qualitative and Quantitative Data Analysis." Analyzing qualitative data 1994: 89-110.
 K. Steinar. "Interviews: An Introduction to Qualitative Research Interviewing." Studentlitteratur, Lund 8. 1996.
 B. DiCicco‐Bloom, B.F. Crabtree. "The Qualitative Research Interview." Medical education. 2006. 40.4: 314-21.
 P. Burnard et al. "Analysing and Presenting Qualitative Data." British dental journal. 2008. 204.8: 429-32.
 N. King, C. Horrocks. Interviews in Qualitative Research. Sage Publications Limited, 2010.
 N. K. Denzin, Y. S. Lincoln. The SAGE Handbook of Qualitative Research. Sage Publications, Incorporated, 2011.
 N. Mays, C. Pope. "Rigour and Qualitative Research." BMJ: British Medical Journal 1995. 311.6997:109.
 M. J. Greene. "On the Inside Looking in: Methodological Insights and Challenges in Conducting Qualitative Insider Research." The Qualitative Report 2014; 19.29: 1-13.
 B. G. Glaser, A.L. Strauss. "The Discovery of Grounded Theory: Strategies for Qualitative Research." 1967
 C. Teddlie, A. Tashakkori. Foundations of Mixed Methods Research: Integrating Quantitative and Qualitative Approaches in the Social and Behavioral Sciences. Sage Publications Inc, 2009.
 A. J. Onwuegbuzie, J.P. Combs. "Data analysis in mixed research: A primer." International Journal of Education 2011; 3.1: 13.
 A. J. Onwuegbuzie, C. Teddlie. "A Framework for Analyzing Data in Mixed Methods Research." Handbook of mixed methods in social and behavioral research 2003: 351-83.
 D. Hellawell. "Inside–out: Analysis of the insider–outsider Concept as a Heuristic Device to Develop Reflexivity in Students Doing Qualitative Research." Teaching in higher education 2006; 11.4: 483-94.
 N. Naples. "The insider/outsider debate: A feminist revisiting."Feminism and method: Ethnography, discourse analysis, and activist research 2003: 49-66.
 A. Loxley, A. Seery. "Some philosophical and other related issues of insider research." Skies P., and Potis A. Researching education from the inside, UK, Routledge 2008: 15-32.
 J. L. Aguilar. "Insider Research: An Ethnography of a Debate." Anthropologists at home in North America: Methods and issues in the study of one’s own society 1981: 15-26.
 D. DeLyser. "“Do You Really Live here?” Thoughts on Insider Research*." Geographical Review 2001; 91.1‐2: 441-53.
 J. Hewitt-Taylor. "Inside Knowledge: Issues in Insider Research." Nursing Standard 2002; 16.46: 33-5.
 B. Workman. ‘Casing the joint’ Explorations by the insider-researcher preparing for work-based projects. Journal of Workplace Learning, 2007; 19(3), 146-160.
 S. B. Merriam et al. "Power and Positionality: Negotiating insider/outsider Status within and Across Cultures." International Journal of Lifelong Education 2001; 20.5: 405-16.
 L. Murray, B. Lawrence. "The Basis of Critique of Practitioner-Based Enquiry." Insider-Research, London: Sage 2000
 Y. S. Lincoln, E.G. Guba. Naturalistic Inquiry. 75 Vol. Sage, 1985.
 E. G. Guba. "Criteria for Assessing the Trustworthiness of Naturalistic Inquiries." ECTJ 1981; 29.2: 75-91.
 R. S. Kaplan, D. P. Norton. "Using the balanced scorecard as a strategic management system." 1996.
 E. C. Nelson, P. B. Batalden, M. M. Godfrey. Quality by Design: A Clinical Microsystems Approach. Jossey-Bass, 2007.
 Parliamentary and Health Service Ombudsman. "Six Lives: The Provision of Public Services to People with Learning Disabilities." 2009
 G. R. Johnson, R. Whittington, K. Scholes. "Exploring Strategy, Ed." 2011
 E. Emerson et al. "Trends in Age-Standardised Mortality Rates and Life Expectancy of People with Learning Disabilities in Sheffield Over a 33-Year Period." Tizard Learning Disability Rev 2014; 19.2: 90-5.
 P. Heslop et al. "The Confidential Inquiry into Premature Deaths of People with Intellectual Disabilities in the UK: A Population-Based Study." The Lancet 2014; 383.9920: 889-95.
 G. Glover, E. Emerson. "Estimating how Many Deaths of People with Learning Disabilities in England could be Prevented by Better Medical Care." Tizard Learning Disability Rev 2013; 18.3: 146-9.
 S. R. Leeder, A. Dominello. "Health, Equity and Intellectual Disability." Journal of Applied Research in Intellectual Disabilities 2005; 18.2: 97-100.
 S. Carlisle. "Health Promotion, Advocacy and Health Inequalities: A Conceptual Framework." Health promotion international 2000; 15.4: 369-76.
 N. Lennox et al. "Are a Health Advocacy Diary and Health Assessment Welcomed by those Who use them?". Journal of Intellectual Disability Research. Blackwell Scientific 2004; 354-354.
 K. Fisher. "Health Disparities and Mental Retardation." Journal of Nursing Scholarship 2004; 36.1: 48-53.
 D. Cooksey. A review of UK health research funding. The Stationery Office, 2006.
 M. Polanyi. "Personal Knowledge: Towards a Post-Critical Philosophy." 1962.
 I. Nonaka. "A Dynamic Theory of Organizational Knowledge Creation." Organization science 1994; 5.1: 14-37.
 D. Stewart, M. Todd. "Role and Contribution of Nurses for Learning Disabilities: A Local Study in a County of the Oxford–Anglia Region." British Journal of Learning Disabilities 2001; 29.4: 145-50.
 J. Foster. "Learning Disability Liaison Nurses in Acute Hospitals: Is there Evidence to Support the Development of this Role? Julie Foster Examines the Current Literature to Discover the Effectiveness of the Liaison Nurse Role and to Look for Evidence to Inform the Development of Learning Disability Liaison Nurse Roles in Acute Healthcare Settings." Learning Disability Practice 8.4 (2005): 33-8.
 M. Brown et al. "Learning Disability Liaison Nursing Services in south‐east Scotland: A mixed‐methods Impact and Outcome Study." Journal of Intellectual Disability Research 2012; 56.12: 1161-74.
 Mencap. “Public loses faith in NHS for failing people with a learning disability.” Mencap 2014
 E. Emerson et al. "Improving health and lives: the learning disabilities public health observatory." Advances in Mental Health and Intellectual Disabilities 2012; 6.1: 26-32.
 Mencap. NHS Primary and Secondary Health Care Charter. Mencap 2013
 G. Iacobucci. "Troubled mental health trust is still putting patients at risk, warns CQC." BMJ: British Medical Journal (Online) 2016; 353
 C. Chavez. Conceptualizing from the inside: Advantages, complications, and demands on insider positionality. The qualitative report, 2008; 13 (3): 474-494.
 W. Pillow. Confession, catharsis, or cure? Rethinking the uses of reflexivity as methodological power in qualitative research. International Journal of Qualitative Studies in Education, 2003; 16 (2), 175 – 196.
 Sheffield Teaching Hospitals Foundation Trust Learning Disability Annual Report 2015-16
 Sheffield Teaching Hospitals Foundation Trust Carers Strategy 2016 (in development)
 Leeds Teaching Hospitals Learning Disability Patient Survey (2013)
 National Adult Learning Disability Inpatient Survey 2015
 Six Lives – Department of Health second progress report (2013)
 Transforming Care for People with Learning Disabilities – next steps. HMSO 2015