Preventing Fetal Alcohol Spectrum Disorder in Aboriginal Communities: A Methods Development Project The Healthy Communities, Mothers and Children Project (HCMC) Masotti P*, MacLeod S*, George MA, Szala-Meneok, Morton AM, Loock C, Van Bibber M, Ranford J, Fleming M, McDiarmid T, Penno E, Prince E, Salmon A, Smith C. (*PIs) Project funded by the Institute of Aboriginal Peoples’ Health (Canadian Institutes of Health Research) FACE Research Roundtable September 9 th 2006 Paul Masotti & Elaine Prince

2 Preventing Fetal Alcohol Spectrum Disorder in Aboriginal Communities: A Methods Development Project Available at: Preventing Fetal Alcohol Spectrum Disorder in Aboriginal Communities: A Methods Development Project Available at: Public Library of Science Medicine January 2006 / Volume 3 / Issue 1 / e8

3   What is the HCMC project?   Overview of Participatory Action Research (PAR)   What is the HCMC model?   Who did what?   Results   Portability of the model to other health issues   Elaine Prince – Experiences of Inter Tribal Health Authority Outline

4 Project Partners   Community Partners British Columbia Vancouver Native Health Society/Sheway (Vancouver) Inter Tribal Health Authority (Nanaimo) Ontario Six Nations of the Grand River (Ohsweken) Pic River First Nation (Heron Bay)  University Partners McMaster University (Ontario) Lakehead University (Ontario) University of British Columbia (British Columbia) University of Wisconsin, Madison (Wisconsin, USA)

5 What is HCMC? Methods Development Project (Fetal Alcohol Spectrum Disorder prevention) Deliverables: a) Community-specific FASD interventions developed in a collaborative effort between four Aboriginal communities and university-based researchers b) Model for participatory, community-based research and intervention development

6 HCMC – The Approach Participatory Action Research (PAR) PAR is research that involves the subjects of the research as active members of the research team. PAR is focused on achieving outcomes that improve the situation/health status of the participants. “ The research direction must come from the community… Researchers should be instrumental in the process rather than being in the centre of the process.”* *Kowalsky I, Verhoef M, Thurston W, Rutherford G. (1996) Guidelines for entry into an Aboriginal Community. Can J Aborig Stud 2:

7 Community-based Participatory Action The interventions were developed in the communities by community members (i.e., no university researchers on site). The interventions were developed in the communities by community members (i.e., no university researchers on site). University-based researchers provided access to information and a structured approach University-based researchers provided access to information and a structured approach What is the HCMC model? Community members and university-based researchers worked collaboratively and tried to let each other do the things they are good at doing. and tried to let each other do the things they are good at doing.

8 HCMC Acronyms Community University Community University - CBR - UBR (Community-based Researcher) (University-based Researcher) (Community-based Researcher) (University-based Researcher) - CRF (Community Research Facilitator) (Community Research Facilitator) - CAC (Community/Local Advisory Committee) (Community/Local Advisory Committee) Who did what?

9 UBRs suggested an overall approach to research project Fundamental principals 1)Community members know their community and are best positioned to develop interventions that will work. 2) UBRs can provide access to research tools/information and suggest an approach that will help the CRF lead a workgroup comprised of individuals who could have but do not need to have specific knowledge or expertise in the health issue. Communities hired a CRF to lead the project Main qualifications 1) Leadership skills 2) Be acceptable to the community CRFs were not required to be experts in research, FASD, alcohol interventions, or public health.

10 Who did what? CRF formed workgroup to develop the intervention Method: Community Survey of Women General Question - Who do you know and trust that you would go to for advice on maternal and child health? Purpose - To identify ‘community leaders’. (People who are known and respected by women in the community.) Rationale - Community Leaders: 1) have special knowledge (characteristics and needs of women and the community); and 2) are in positions of respect. 3) This would also ensure that people who did not occupy formal positions of authority could be identified/invited.

11 Who did what? CRF formed Community Advisory Committee (CAC) Method: CRF discretion and consultation with people in formal positions CAC Functions Provide support/advice to the CRF & Workgroup. Help operationalize the intervention. Rational – CAC members: 1)are in positions to evaluate the economic and political feasibility of the interventions (checks and balances); and 2)could ask the question, can the community sustain the intervention developed by the workgroup? (The CAC was intended to include some people with official positions of authority.)

12 Who did what? UBRs introduced the ‘structured approach’ 1)Provided information (research proposal, FASD, example interventions, screening instruments) 2) Suggested an approach to organizing the project (Workgroup session guides, interaction with CAC) 3) CRF Workgroup/Focus Group Training 4) Provided a video tape demonstration of a brief intervention 5) Illustrated the ‘core components’ of a brief alcohol intervention 6) Introduced the ‘Work Group Guide for CRFs (12 separate Work Group sessions that provided a series of questions that addressed research ethics, developing community-specific intervention components, intervener training, ….)

13 5)Illustrated the ‘core components’ of a brief alcohol intervention 1.Identification of ‘at-risk’ women 2.Assessment of drinking behaviors 3.Provision of information on the harmful effects of drinking 4.The method of delivery facilitates decisions to adopt healthier drinking behaviours 5.Monitor change or progress

14 Workgroup # TITLE OF WORKGROUP 1Introduction to Healthy Communities, Mothers & Children, Brief Alcohol Interventions, & Fetal Alcohol Spectrum Disorder 2Values and Characteristics of Mothers 3Values and Characteristics of the Community 4Identification of At-Risk Mothers 5Screening Survey 6Screening and Recruitment Policy and Procedure 7Logistics of Intervention Delivery 8Content of Intervention (What Happens In the Intervention) 9Measuring Behaviour Change 10Intervener Training 11Ethical Practices & Processes 12Summary & Wrap-Up 6) Introduced the ‘Work Group Guide for CRFs’

15 6) Introduced the ‘Work Group Guide for CRFs’ - Workgroup sessions address specific components of the brief alcohol intervention and development process. - For each workgroup, goals and objectives were identified and a series of questions were included to assist meeting specific objectives. Examples of questions from various workgroup sessions Who in our community do women of childbearing age tend to listen to and respect? When a woman of childbearing age has concerns about health issues or needs, where would she likely go? What barriers, if any, do women face in accessing healthcare? What do you think are the five greatest strengths of our community? How will knowing these strengths and weaknesses help us as a group develop an intervention that will work in our community? How could we identify mothers who do not routinely access health care services? Who is “at-risk”? What examples can we look at that other organizations have used to indicate “at-risk”?

16 Who did what? CRF and workgroup developed the intervention - CRF could use, modify, or ignore the approach suggested by the UBRs - CRFs and UBRs routinely communicated during the process - CRFs and Workgroups presented/discussed the intervention with the CAC UBRs provided suggestions to help conduct an implementation analysis CRFs conducted an ‘implementation analysis’ CRFs revised and documented the final intervention

17 Results 1)Four community-specific interventions developed. 2) Pilot testing completed at 3 of 4 sites. 3) Bidirectional research capacity: a) all sites report increased research capacity, b) UBRs have increased their capacity to collaborate and conduct respectful research in Aboriginal communities. 4) One site has implemented a research development program in partnership with UBC. 5) One site has used the methods to develop a smoking intervention. 6) CRF was accepted into medical school. 7) Two CRFs plan to continue Aboriginal health research (graduate school). 8) One mother was awarded custody of her children – in part due to her participation (1 yr) in the mother’s advisory work group.

18 Can the approach used in the HCMC project be used (or modified) by communities to address other public health concerns? Teen Suicide Example: Teen Suicide 1. All research done in the community by community members. 2. The community hires a CRF to lead the process. 3. CRF forms a workgroup comprised of people teens identified as those they know, trust, and would go to for help. 4. CRF forms a secondary support committee such as the CAC. 5. UBRs are asked to provide access to information. ( e.g., i) teen suicide prevention models that have been developed and tested elsewhere; ii) research methods, and iii) screening tools) 6. A teen suicide prevention intervention is identified as starting place. 7. UBRs develop a ‘structured approach’ intended to facilitate an intervention development a process that is suitable for the community, CRF, and workgroup. 8. CRF/workgroups develop the interventions using the accepted approach. 9. UBRs help develop program evaluation methods. 10. CRF revises/improves interventions components where indicated.

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20  29 Member First Nations  client base of approx. 13,000  Service Area: east side of Island 600+ km, north to south km, north to south.  2 communities on mainland.  One of the Largest First Nations health service delivery organization in B.C.

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