Sensitive Research and Vulnerability

Slides:



Advertisements
Similar presentations
Legal Capacity, Personhood and Supported Decision Making
Advertisements

Prof. Dr. Stefan Thomas Professor for Empirical Social Research and Social Work University of Applied Science, Potsdam Social Work Faculty Friedrich-Ebert-Str.
Changing children’s services: challenges for education,
Professor Alyson Tobin Professor of Biology University of St Andrews.
Questionnaire Surveys Obtaining data by asking people questions and recording their answers Obtaining data by asking people questions and recording their.
WHAT IS COLLABORATIVE RESEARCH WITH ‘SERVICE USERS’ AND OTHER ‘USER GROUPS’? Dr Jo Frankham Senior Research Fellow Centre for Education, Research and Evaluation.
Practicing Community-engaged Research Mary Anne McDonald, MA, Dr PH Duke Center for Community Research Duke Translational Medicine Institute Division of.
Project Monitoring Evaluation and Assessment
A Student’s Guide to Methodology Justifying Enquiry 3 rd edition P ETER C LOUGH AND C ATHY N UTBROWN.
Service Users subject to s. 41 of the Mental Health Act Their views of risk and risk assessments Jeremy Dixon.
Researching internationalising practices through expanded research conversations: By Mark Powell.
A pilot study into the experiences of counsellors in training A traditional dissertation submitted in partial fulfilment of the requirements for the degree.
CHCCD412A Cluster 1.  s/pdf_file/0006/54888/CHAPS_Community- Services-Pathway-Flyer_v 4.pdf
FIFTH ANNIVERSARY OF THE INTERNATIONAL CONVENTION ON PERSONS WITH DISABILITIES, Madrid, 6/7 th May, 2013 Participation of children with disabilities, Gerison.
2 Partnerships with professionals. Partnerships and Collaboration Partnerships with other professionals are ongoing long- term relationships based on.
TEMPLATE DESIGN © The Homework Effect: Does Homework Help or Harm Students? Katherine Field EdD Candidate, Department.
Northcentral University The Graduate School February 2014
CRPD: Research Rosemary Kayess Social Policy Research Centre UNSW.
Participatory Action Research William T. Oswald, Ph.D. October 2011.
Introduction to Evaluation Odette Parry & Sally-Ann Baker
Lived Experience of Older Women with Learning Disabilities Alison Pointu & Nalinie Ranpurias
1: Overview and Field Research in Classrooms ETL329: ENTREPRENEURIAL PROFESSIONAL.
Designing a Qualitative Study
PROMOTING PARTICIPATION AMONGST CHILDREN & YOUNG PEOPLE WHO EXPERIENCED VIOLENCE: WHAT WE DID AND HOW WE DID IT User [Pick the date]
Dr Lisa Curtice Director, Scottish Consortium for Learning Disability (SCLD)
©2012 McGraw-Hill Ryerson Ltd. Types of Data  Primary – Facts and observations that researchers gather for the purposes of a study.  Secondary – Data.
Participatory Research Methods: Doing research inclusively Melanie Nind Quest seminar 9 October 2013.
Self-Directed Support. Personalisation ‘It enables the individual alone or in groups to find the right solutions for them and to participate in the delivery.
Workshop5 Equality and Diversity. Objectives for Today Understand diversity, equality and inclusion in own area of responsibility Understand how to develop.
Exploring Researcher Distress Dr Julie McGarry, Associate Professor, University of Nottingham, School of Health Sciences, Chair of the Domestic Violence.
Abertay.ac.uk Prison Health Symposium Glasgow 2016 “Male ex-prisoners experiences of health and healthcare in prison and in the community” James Fraser.
Parents as Leaders: Module Objectives
A Sociological Exploration of the Impact of Hate Crime on the Wellbeing of People with Learning Disabilities in Scotland Dr Phillippa Wiseman and Professor.
north Ayrshire Community planning partnership
Chapter 9: Reporting and Evaluating Research
EFFECTIVE ALLOCATION OF ADAPTED SOCIAL HOUSING: A PILOT STUDY
Evaluating Better Care Together
Participatory Action Research (PAR)
U STORIES: Oral History and Urban Experiences
The impact of transition on health
Needs assessment and evaluation : service improvement and women
All about people... I CAN…You CAN…WE CAN!
Boston Community Academic Mental Health Partnership
Developing a Methodology
Dr Veena Pillai Dhi Consulting & Training
Shaping a new model of inclusive education
Diagnostic Essay Feedback Analysis
Welcoming All Families Into the School Community
Youngwummin: Ethics and Data Collection Methods
Introduction to Social Anthropology November 2018
Application for research Ethical Approval in Practice
DRILL’s First Round 05/12/2018.
Research Question 4 How can the most vulnerable children be reached/included by data collection systems and instruments?
INTEGRATING MATERNITY CARE
Data Collection An Overview of the AEMS Sampling Plan and
Advising Doctoral Students
“Building reflective communities through exploring the role of teachers’ and senior managers’ voice in decision making” B.S, November 2006.
Equality and Diversity
The context for community development What it is – and what it isn’t
Enhancing connection through values-informed practice
‘ Children as Agents of Social Change  Opening Seminar
Achieving partnership working with older people.
Leadership of and for learning
Centering Student Voice in Oregon
Injury epidemiology- Participatory action research and quantitative approaches in small populations Lorann Stallones, PhD Professor and Director, Colorado.
Parents as Leaders PCL Module 1 Parents As Leaders
QUALITATIVE RESEARCH METHODS 2017
Restorative Approaches with Families in Elder Abuse Cases
Inclusive Approaches to Student Communication
The Value of Kindness.
Presentation transcript:

Sensitive Research and Vulnerability Making Social Research Inclusive for People with Learning Disabilities Dr Phillippa Wiseman and Professor Nick Watson Institute of Health and Wellbeing, University of Glasgow Phillippa.Wiseman@glasgow.ac.uk www.sldo.ac.uk Introduction People with learning disabilities have been, historically, excluded from academic discourse1. Research involving people with learning disabilities has tended to treat them as ‘mere mines’, ‘objects’ or ‘sources of data’ rather than active collaborators in the research process3 . As Stalker4 argues, this has often been because people with learning disabilities were seen incapable of having articulate narratives or reliable views. As such information about people with learning disabilities’ lives and experiences were sourced from professionals who were seen as more capable of speaking on their behalf. Inclusive participatory research is research that is collaborative and involves partnership with people with learning disabilities. Participatory research and methodologies that include people with learning disabilities must ensure that the research process and settings are accessible and inclusive in themselves. As such research questions, forms of data collection and research environments must be accessible6. Methods We undertook qualitative research (through semi-structured interviews) with people with learning disabilities on their experiences of hate crime and harassment and how it impacted on their wellbeing. 19 participants , with learning disabilities, were recruited from all over Scotland to talk about their experiences . Participants were all over the age of 18 and all venues were chosen by participants themselves in order to ensure accessibility and participant safety. Aims To reflect on the social science methodologies in research with people with learning disabilities. To examine the barriers to including people with learning disabilities in our hate crime research. Ethics Institutional ethics committees often assume people with Learning Disabilities are too vulnerable to take part in social research. This results in their voices being absent from research about their lives. Ethics can demand use of seemingly inclusive methods that don’t always work for people with learning disabilities. In our research we found that participants much preferred to give oral rather than written consent and often found easy read formats less favourable and more unhelpful than oral discussions of the purpose of the research. In order to include participants, researchers must innovate to make informed consent accessible. Gatekeepers Gatekeepers, organisations for disabled people and social institutions can assert high levels of protectionism over people with learning disabilities. Therefore gatekeepers often decide who might be a good participant and give good answers which can serve to exclude some people with learning disabilities from providing their experiences. People with learning disabilities were hard to access or recruit for participating in research that examines and shapes their lives. Barriers to Including People with Learning Disabilities in Hate Crime Research Through issues identified in ‘The Keys to Life’, the SLDO engages in research that affects the health and wellbeing of people with learning disabilities. Hate crime and violence was identified by people with learning disabilities as a key issue in their lives. However, as hate crime is a sensitive topic, people with learning disabilities can be constructed as too vulnerable to take part in the research by academic institutions, gatekeepers and researchers. Their voices are largely absent from academic research on hate crime. Our research found that participants wanted to have agency in directing and shaping discussions about the experiences they had and the hate crime and harassment they had been subject to. They didn’t see themselves as ‘too vulnerable’ to take part. By directing the research, through their narratives, they are active collaborators in shaping policy and practice on disability hate crime in Scotland. Sensitive Research and Vulnerability Discussion Social research must strive to be inclusive, accessible and collaborative. People with learning disabilities should be active participants in narrating their own experiences and in shaping policy and practice about issues that affect their lives. ‘Sensitive’ research, such as research into hate crime and wellbeing, is essential in addressing the key issues that impact on wellbeing and social participation for people with learning disabilities and their voices must be made visible in order for this research to be meaningful. Whilst research must always be sensitive to and respectful of the needs and ways in which people with learning disabilities are made vulnerable, ethics committees must recognise people with learning disabilities as necessary and active collaborators in research. Social researchers should innovate and adapt research methods and research designs in order to best include people with learning disabilities and make informed consent accessible. References Watson , N. (2012) ‘Researching Disablement’ Atkinson, D. (2004) Research and empowerment: involving people with learning difficulties in oral and life history research see also England 1994 Stalker, K. (1998 ) Some Ethical and Methodological Issues in Research with People with Learning Difficulties Chappell , A. (2000) Emergence of participatory methodology in learning difficulty research: understanding the context Walmsley & Johnson (2003) Inclusive research with people with learning disabilities: Past, present and futures.