Karen Schwartz, Ann Marie O Brien & Adje van de Sande May 2009

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1 Karen Schwartz, Ann Marie O Brien & Adje van de Sande May 2009

2 Acknowledgements My colleagues: Fellow instructor Adje van de Sande, Social Worker at the Royal Ottawa Hospital and Adjunct Professor Ann Marie O Brien. The students: Meredith Armstrong, Courtney Fleming, Alison Freeland, Patricia Moore, Vanessa Morel

3 Introduction Literature on Community Engaged Research and Community Based Research (CBR) Over view of the research course Previous evaluation of the research course The case study of this collaboration Benefits and challenges of the collaboration

4 The Third Task of Universities To relate to & collaborate with practioners in the community to support the development process. No longer acceptable for this to be a linear process, transfer of scientific knowledge from research society to practice. The pivotal factor to make universities serve their communities seems to be the shaping of the social glue between these spheres. (Brulin, 2006).

5 Community Based Research What is Community Based Research: CBR is a collaborative enterprise between academics and community organizations. CBR seeks to democratize knowledge by validating multiple sources of knowledge and promoting the use of multiple methods of discovery and dissemination. CBR has as its goal social action for the purpose of achieving social change and social justice (Strand et al., 2003).

6 Community Based Research (2) CBR is conducted by, for or with the participation of community members Community based research aims not merely to advance understanding, but also to ensure that knowledge contributes to making a concrete and constructive difference in the world (LOKA, 2002)

7 Community Engaged Scholarship Engaged scholarship is defined by Stanton (2008) as research that partners university scholarly resources with those in the public and private sectors to enrich knowledge, address and help solve critical social issues and contribute to the public good. Hyde and Meyer (2004) conceptualized a continuum from participatory action to conventional research with most CBR projects situated at different points on the continuum. They propose a variety of factors that affect the participatory nature of a project including the nature of the problem to be explored, the skill and training of the researcher, the environmental context and the desires of the community.

8 Community Engaged Research McDonald (2007) uses the term community engaged, as applied to research, to conceptualize a continuum that includes the full spectrum of approaches that involve the community in the research process. Research that incorporates only a few elements of communityengagement, for example having the researchers control the research with the community in more of a consultative role, to research in which both are equal partners throughout the process. The extent of the collaboration, when it occurs in the research process and the relationships among researchers and community organizations may be very different from project to project.

9 Knowledge Transfer In the mental health sector, the Canadian Mental Health Commission has identified knowledge transfer of as one of their top priorities. Knowledge transfer provides the opportunity to develop a discourse on mental illness that is informed by the experiences of service providers, service users, and their families. Social perspectives on mental health involve the examination of the role of power in the experience of mental illness and recovery. Engaging in research with community based service providers is an opportunity for graduate students to bridge theoretical knowledge with practice.

10 History of the Course Since Carleton University School of Social Work has structured the MSW research course so that students in small groups engaged in research with community agencies. Previous evaluation carried out in 2004, (Germain, 2004) and was built in as an annual process. An attempt was made to address their concerns by having course instructor attend original planning meeting between the students & the agency.

11 Organization of the Course (1) A letter is sent out in May inviting community organizations to submit a request for research. In August, the two instructors review the requests and select a short list of projects based on appropriateness in terms of learning opportunities. In September, the class is divided into teams of three to five. The teams are invited to select from the approved projects, the ones they would like to pursue.

12 Organization of the Course (2) A member of the team then contacts the organization and sets up an initial face to face meeting. During this meeting a contract is developed which spells out the details of the project, which tasks will be undertaken and by whom, and the timelines. The instructor attends this initial meeting. The team then develops a detailed research proposal for the approval of the instructors and the organizations. The proposals are presented in class for discussion and feedback. The teams also develops an ethics review proposal for approval by the Ethic Review Board of the university.

13 Organization of the Course (3) In January, once the proposal has cleared ethics, a second face to face meeting is held between agency people, students and the instructor. * The teams start gathering and analyzing data. The teams then write the final report which is presented in class for discussion and feedback. The final step is that teams and present their final report to the organizations. *started last year

14 Feedback From Agencies Agencies were asked to complete a questionnaire where they discussed whether the research carried out by the students promoted individual and organizational change and contributed to a research minded culture (Stuart & Whitmore, 2006). Qualitative Study During the previous two years ( and ), 23 projects completed, and we received responses from 15 programs. This past year 12 projects were completed but we have not collected their feedback yet. These results do not include the case study included in this presentation.

15 Feedback From Agencies Half of the organizations were multi service health and community resource centers and hospitals. The rest included a variety of agencies service clients with developmental, mental health, health, immigration and addictions issues. We had a very broad range of participating organizations.

16 What They Said Did you feel that the initial meeting between yourself, the students, and the course instructor was helpful in clarifying the research project? All of the organizations felt that having the instructor present during the initial meeting with the organization was very helpful. Many of the students had overly ambitious ides of what could be accomplished and were ready to agree to much more extensive projects. The instructors role was to ensure that what was agreed to was realistic.

17 Clarify The Research Quotes It was helpful to clarify the nuances of each perspective Yes it laid the groundwork for the project Absolutely. They (students) conducted themselves with great professionalism and demonstrated commitment to the project. They engaged in constructive dialogue with our team as the project evolved and integrated our stated needs in their overall project.

18 Were you able to make use of results and recommendations? All stated that they were able to use some or all of the information. Several stated that they would use the information in funding applications. Some organizations plan to use the results as a spring board to future research. Other organizations planned to use the findings in staff and volunteer training. Some organizations are using the data as part of conference presentations. Another organization will use the data to refine their program.

19 Use of Research Quotes We will be using the findings in our application for funding from the ministry. We will take the results to the volunteers to discuss what can be dome to address the challenges raised. The literature Review was helpful because they received up to date information on why they are doing what they are doing The Chinese community was not even on our radar. Yes. Our committee is moving forward with the development of our Model or Practice and the students findings will be integrated in our process. The results & recommendations will be used to form work plans for both the Tenant Association and Community House Board, which will determine programming in the house.

20 Suggestions to Improve the Process Some of the suggestions had to do with communication difficulties. We would have wanted more check ins with the students This group suggested including a schedule of meeting with students in the initial contract. Another meeting in January with the prof present would have helped. We would have like more input in the development of the final report. We would have liked more discussion on the interpretation of the data We would have liked some input into the grades given to the students We need an agency point person that the students go to.

21 THE CASE STUDY: Community Treatment Orders: The Service Users Speaks

22 The Proposal PROPOSAL SUMMARY FOR A RESEARCH OR EVALUATION PROJECT NAME (of your agency/group/organization): Community Treatment Order Program Royal Ottawa Health Care Group BRIEF DESCRIPTION (of your agency/group/organization): We are the largest provider of mental health services in eastern Ontario. We have inpatient and outpatient services. We host two ACT Teams, as well as outreach programs. We have one of three CTO coordinators in the Champlain LHIN. BRIEF STATEMENT OF THE RESEARCH/EVALUATION: Title of project Caring or Coercion? How do service users experience CTOs?

23 The Proposal (2) What do you want to KNOW? We want to know how service users perceive CTOs. What is their lived experience? What would you like the students to DO? We would like the students to develop a research design to collect information from service users on their perceptions of CTOs. This will be a multi step process that involves obtaining approval from the Research Ethics Board. What OUTCOMES would you like to see from the research? We would like to be better informed of service users perceptions so that we can provide better services to them Contact person: Ann Marie O Brien Address: ROMHC, 1145 Carling ave, Ottawa, Ontario, K1Z 7K4 Please send your completed summary (1 page only) NO LATER THAN AUGUST 15, 2008 to: Adje van de Sande or Karen Schwartz (contact details are on the bottom of the attached letter).

24 Background Royal Ottawa Health Care Group is the largest provider of mental health services in eastern Ontario 2 sites: The Royal Ottawa Mental Health Centre and the Brockville Mental Health Centre Services include inpatient, outpatient, outreach, 2 assertive community treatment teams Accredited teaching hospital with University of Ottawa faculty of medicine 77 social workers all MSW employed in all programs across two sites

25 Ontario

26 Background Community treatment order coordinator (MSW) actively involved in research, and affiliated with the faculty of social work at Carleton proposed a study CTO coordinator was a role created when CTO legislation was passed in the province of Ontario in 2000 The role is to facilitate the process of issuing CTOs, monitor the use of CTOs, provide education to service users, families, physicians, community partners Approximately 30 coordinators in the province, non discipline specific : some are nurses, some social workers Very few studies in the Canadian context

27 Background CTOs are a form of involuntary outpatient commitment The unique features of CTOs in Ontario as opposed to many other jurisdictions is that they are issued by physicians not courts, and they are consent based

28 The proposal Students were invited to design and implement a study to examine service users perceptions of CTOs Service users were defined as any person currently subject to a CTO N=50 potential subjects All aspects of CTOs are under researched in the Canadian context From a social work perspective the service users perceptions are particularly important

29 Process CTO coordinator met with the students to direct them to relevant research Orient them to the culture of the organization (Royal Ottawa) and support them to meet the requirements of working with this population i.e. police records checks, immunizations, corporate welcome Introduce Ethics process and support them to meet the requirements of the Institute of mental health research i.e. tri council policy

30 Ethics University of Ottawa Institute of Mental Health Research Research Ethics Board IMHR was familiar with CTOs as a result of previous protocols submitted by coordinator This facilitated obtaining approval of the project in a reasonable time frame Qualitative methods are relatively new to IMHR focus traditionally on physiological studies of the brain. Proposal coincided with training recently received in how to review protocols proposing to use qualitative methods

31 Ethics During the first half of the term students completed the literature review, designed their study and completed ethics process with guidance from the coordinator who was an experienced researcher. The second half of the term presented a dilemma and an alternate on site supervisor of the project was needed.

32 Data Collection Accessing this population was very challenging People who are the subject of a CTO experience serious and persistent mental illness, most often have been diagnosed with schizophrenia These people have experienced considerable coercion in the course of their involvement with mental health services Most of the people on CTOs just want to be left alone, and if they are not required to meet with service providers they choose not to Data (like ethics) had to be completed in a timely manner to allow for time to analyse the data 6 people consented to be interviewed

33 Their Findings An Overview Housing All participants are currently living in independent housing that they find satisfactory. Three participants discussed issues with finding safe and stable housing in the past. Employment Two participants are currently working part time, and four participants discussed employment. T here were dramatically different opinions held by participants with regards to the impact of the CTO on employment and employability.

34 Their Findings An Overview (2) Impact of mental health issues on family Participants did not seem interested in discussing friends and families, minimal details provided in interviews. Responses given indicate that families of participants viewed their community treatment orders favourably. Reason for CTO The participants cited various reasons for their CTO being initiated. The two major reasons that were discussed were not taking medication, and not engaging in self care.

35 Relationship With Professionals Information Many participants were vague about the amount of information provided by their service providers, and their understanding of that information. The few participants who had strong opinions regarding information provided to them believed service providers did not ensure they had a clear understanding of the legal processes. Stigma Participants discussed the way that the label of mental illness creates two different experiences of stigma. In the community through labels, scrutiny and isolation. The stigmatizing behaviour and attitudes in their professional service providers.

36 Feelings About CTO More negative feelings than positive. Feelings of being controlled and labelled as suffering from mental illness. Links appear between disagreeing with the diagnosis of mental illness and negative statements regarding their conditions of the CTO, i.e. medication. Positive statements about CTO s largely associated with outcomes such as Increased support. Employment. Self assessments of improved mental health. Positive interactions with ACT team, family doctor, psychiatrist

37 The Outcome Students presented their findings to the social work practitioners at the Royal Ottawa site. The findings of the exploratory study were inline with what would be expected from the literature review. The social workers were very impressed with the quality of the work presented, and inspired to consider taking on research students of their own. The findings were very useful to the coordinator to refine her practice to attempt to address some of the concerns of the service users.

38 Benefits of Research Partnership (Community Perspective) Increase profile of social workers as researchers Provide useful information to practitioners Strengthen partnerships between academics and practitioners for the benefit of service users Research students don t need the same resources as clinical (placement) students Opportunity to evaluate social work practice in a mental health setting as well as to answer broader questions

39 Challenges of Research Partnership (Community Perspective) Thinking of a project that the students will be interested in and can be completed in the 8 month time frame and other constraints of the course Practitioners have limited time to supervise research students Practitioners are unfamiliar with the culture of research Working with two ethics boards Collaboration dynamics

40 Benefits From University Perspective Opportunity to contribute to the community Opportunity to give students experience of doing research in the real world, (marketable skill) Best way to learn about research is to do it Renewed enjoyment of teaching

41 Challenges from University Perspective Tremendous workload for instructors Administrative work Meet with students and agencies Negotiate ethics process Deal with dynamics of collaborative process Challenges of the university timeline

42 Keys to Collaboration Open communication Meet with students and agency Get feedback at the end of every year Re visit agency input into grading

43 Thanks you for your attention. Any Questions?