1 Translating research in the field of intellectual disabilitiesDr. Beverley Temple KT Canada Web Conference, September 11, 2014 Translating research in the field of intellectual disabilities

2 The Agenda Knowledge Translation Definitions and Models My ContextStudies – Past and Current Lessons learned

3 Knowledge TranslationDefinition Knowledge translation is the exchange, synthesis and ethically-sound application of knowledge - within a complex system of interactions among researchers and users - to accelerate the capture of the benefits of research for Canadians through improved health, more effective services and products, and a strengthened health care system

4 Knowledge Translation is about:Making users aware of knowledge and facilitating their use of it Closing the gap between what we know and what we do Moving knowledge into action Knowledge translation research is about: Studying the determinants of knowledge use and effective methods of promoting the uptake of knowledge Grimshaw, Ward, Eccles. Oxford Handbook of Public Health.

5 We are concerned about KT in the field of ID/DDClinical research is consistently producing new findings that may contribute to effective and efficient patient care The findings of such research will not change population outcomes unless health services and health care professionals adopt them in practice.

6 My Context – St.Amant An organization that provides service to approximately people with ID/DD. Has a workforce of about 1600 people Delivers community living support, Personal care, Educational programming (school and day services), Clinical and outreach services A research centre (5 multidisciplinary researchers) An organization that provides service to approximately 1700 people with ID/DD. Has a workforce of about 1600 people Delivers community living support, Personal care, Educational programming (school and day services), Clinical and outreach services A research centre (5 multidisciplinary researchers)

7 Knowledge to Action http://www. cihr-irsc. gc

8 Knowledge Translation Research - TeamIn 2009, the research centre developed KT as a priority strategic direction. Team: Dr. CT Yu, director, Dr. B. Temple, Dr. S. Shooshtari, Dr. J. Vireus-Ortega, Dr. T. Martin (JoDD, 2010, 16(3), 42-47) Held 3 workshops with stakeholders: parents, providers, policymakers and researchers Identified facilitators and barriers for KT from their perspective

9 Barriers and FacilitatorsOrganizational missions, policies and job descriptions don’t prioritize research use Lack of time, incentives and resources Facilitators All participants highly valued research Important to develop projects collaboratively with practitioners Disseminate findings using channels accessible to the practitioners and general public

10 KT - TEAM Grant #2 CIHR 2 year study on the process of meeting teachers needs. A process based study to identify main priorities of teachers and how the team could meet their needs, based on the knowledge available. Main topic identified by teachers related to children with ID/DD and challenging behavior.

11 Four teams – Four TopicsTeam members researchers, teachers and student trainees. Intervention strategies are the most effective to prevent and manage challenging behaviours of students with severe ID/DD Common medications received by students and side effects Effective strategies (addressing knowledge, skills, attitudes) to train staff who routinely encounter challenging behaviour among students with ID/DD How can we more easily identify enjoyable activities for students with profound disabilities?

12 Examples of Products All groups have either review papers published or submitted #1 Practical Scripts for Decreasing Challenging Behaviours in Students with Autism or Developmental Disabilities. #2 Risperidone Quick Reference Guide for Teachers at St.Amant School. (10 others under development) #3 Mindfulness workshop for teachers and TA’s #4 Preference Assessment App (under development)

13 Continuity of care in the communityAim: Assess key informant’s understanding of the feeding team recommendations recently provided for three people with ID (3 cases) Interviews : 40 + with 1) feeding team 2) CEO, management, 3) direct care providers from the residents, 4) day program staff and management, 5) parents Other Data: Observations within homes and relevant policies and procedures

14 Dissemination A “short report” in plain language for all involved in the agencies interviewed. Meetings held with any agencies who support people with ID/DD – direct service providers and administrators An academic paper is being prepared

15 Discussion Policies would facilitate the way that communication is handled regardless of “who” is involved PHIA becomes important to interpret appropriately to facilitate best continuity of care The system is set up to manage – WELL individuals CSW – differing levels of involvement – they are being used to make referrals for medically important issues (seizures, dietary needs, choking etc)

16 Example of Use of a second framework to develop an area of researchPain assessment and management for people with ID/DD Example of Use of a second framework to develop an area of research

17 Promoting Action on Research Implementation in Health Services (PARIHS)Model developed inductively over time Successful implementation is based on the nature of the evidence, quality of the context, and approaches to facilitation. Evidence – recognized as research, clinical experience and patient experience and local data. Context – a. culture (values and beliefs), resources available, etc; b. Leadership; c. evaluation (feedback) Facilitation – Purpose/role; skills and attributes Models and Frameworks for Implementing Evidence-Based Practice: Linking Evidence to Action (2010). Ed. By J. Rycroft-Malone & Tracey Bucknall

18 Evidence CIHR funded study to do a scoping review of pain in people with ID/DD – scoping review to plot the extent and range of existing literature Examined all literature related to Pain – including grey literature No RCTs completed related to the type of most reliable pain assessment/treatments

19 Review Total # of Abstracts Reviewed N = 449 PsychoInfoChild Development and Adolescent Studies Academic Search Complete Family and Society Studies 102 included 347 excluded – did not fit criteria 13 not agreed, therefore full abstracts reviewed PubMed Social Sciences Citation Index Mental Measurement Yearbook CINAHL Cochrane Library 37 included 9 excluded All agreed Inclusion English Developmental Disability (or synonym) Pain identified All literature included

20 Findings Studies analyzed thematically with four dominant themes reflecting current knowledge about pain in people with ID 1. Identifying Pain 2. Parental-Caregiver Report 3. Pain Measures 4. Practice Recommendations Temple, B., Dubé, C., McMillan, D., Secco, L., Kepron, E., Dittberner, K., Ediger, J., Vipond, G. (2012). Pain in People with Developmental Disabilities: A Scoping Review. Journal on Developmental Disabilities18(1)57-70.

21 Organization as contextThis study used the ACT Alberta Context Tool as a measure of the organization’s ‘context.’ Concepts in the tool include: Leadership Culture Evaluation (Feedback Processes) Information Sharing Interactions Formal and Informal Information Sharing Activities Information Sharing Social Processes Structural and electronic resources Organizational slack Staffing Space Time

22 Study (CIHR Meetings Grant)42 Managers/Leaders completed the ACT survey tool Highest Scoring Items Structural and electronic resources (5.27) Leadership (4.21) Culture (4.07) Lowest Scoring Items: Formal Sharing Interactions (.327) Informal Sharing Interactions (1.25) Information Sharing Activities (2.21) Organizational Slack Staffing (2.56) Time (2.92)

23 Questions to ask ourselves:Facilitation Questions to ask ourselves: What formal interactions do we have which could be improved or new ones developed? What informal interactions occur which may be perceived as not conducive to the use of new information? What information sharing activities do we have in this organization? What are some new ones we could develop? How do we address staffing and time to influence change and excellence in practice?

24 Next Study Implementation of Pain Assessment toolWe have the best evidence and found the most reliable tool for our use We have a better understanding of the context of our organization barriers, facilitators to use of evidence The patterns of communication The ways audit and feedback are used Now will examine the most effective facilitation methods within the organization – ways to best deliver education related to increased knowledge and uptake

25 Worker Injury Temple, B., Martin, T., Dube, C., Novotny, L., & Fife, C. Working with individuals with Intellectual Disabilities: Injuries and Challenging Behaviours. Workers Compensation Board, Research and Workplace Innovation Program, 2 year grant. Team includes researchers, risk management, and human resources. A large portion of the organization’s budget is spent on WCB payments. 3 phase study: 1) trends of current injuries and managers’ perspectives; 2) injured workers’ perspectives of context of injury, support and training; 3) trainers perspectives of use of the training to prevent injury

26 KT related findings and outcomesRisk is inherent in the type of work and there are individual characteristics that influence their coping and resilience Middle managers one of the most influential for the context of the work, the link between the generic training and the work specific context – TRANSLATION is required Organizational policies influence the follow-up of injured workers as well as the type of training they receive

27 Lessons Learned PHIA in continuity of careHaving a greater understanding of the ‘ways things are done here’ allows us to anticipate the use of knowledge – who people will talk to, their desires for ways of learning (language barriers) Finding key “facilitators of knowledge use” in organizations is important KT research is not easy

28 recommendations Using a theoretical framework allows better integration of KT research Multiple stakeholders important for larger impact (KTA framework) Organizational perspective will influence KT efforts KT should be integrated into – mission and vision, job descriptions, performance reviews Some of the most important people in active, ongoing knowledge use are the ‘middle managers’ and they are often not trained or educated for their KT role

29 Other current studies 2013 – 2014 Temple, B., McMillan, D., Martin, D., Cepanec, D., Goodwin, B., & Harwood, R. Beliefs and use of evidence by clinical educators: Barriers and Facilitators. Faculty of Nursing Endowment Fund, $7500. 2013 – 2014 Grant, L., Ullyott, K., Temple, B., Gold, H., Salter, A., Nieumier, M., Hayward, G. Exploring Licensed Practical Nurses’ processes of and attitudes towards use of evidence in practice. SIAST Seed Applied Research Program $6,000 + SALPNA $ 8,000 = $14,000. 2013 – 2104 Shooshtari, S., Temple, B., Ouellette-Kuntz, H. Feasibility of implementation of CHAP (comprehensive health assessment program) for people with ID living in the community, CIHR $40,000.

30 THANK YOU for your attention