Engaging Indigenous communities in health research

Transcription

1 Engaging Indigenous communities in health research Josée G. Lavoie, Ongomiizwin Research, Indigenous Ins;tute of Health and Healing, University of Manitoba 1

2 2 Key messages Indigenous research requires a level of engagement with communi;es not expected of other research It requires embracing Indigenous paradigms, science, and appropriate methods

3 3 IAPH - Definition of Indigenous Health Research Indigenous Health Research (IHR) can be defined by any field or discipline related to health and/or wellness that is conducted by, grounded in, or engaged with, First Na5ons, Inuit or Mé5s communi5es, socie;es or individuals and their wisdom, cultures, experiences or science, as expressed in their dynamic forms, past and present. Indigenous health and wellness research embraces the intellectual, physical, emo5onal and/or spiritual dimensions of knowledge in crea;ve and interconnected rela;onships with people, places and the natural environment. Such research is based on the right to respec?ul engagement and equitable opportuni5es; it honours culture, language, history, and tradi;ons.

4 4 What does this mean? The TCPS Chapter 9 places addi;onal demands. Leadership by the community, based on local protocols and processes, addressing local priori;es, governance of the study reflec;ng appropriate sharing of power, governance over the resources of the study, governance of the findings and sharing of informa;on. Indigenous knowledge (IK) experts are not just in Universi;es. When it comes to IK, I am in kindergarten.

5 5 Strength-based research vs deficit-based research The western impulse: name the problem, address the problems (see the presenta;on summary) Strengths: Building on the strengths of the community, the family, the individual, Based on rela;onships and trust, Community- relevant, Community- based health research that engages First Na;ons, Inuit and Mé;s Peoples in the design, implementa;on, analysis, data management and sharing of the research Based on IK and grounded in Indigenous paradigms, Cultural connec;on, safety and control for First Na;ons, Inuit and Mé;s Peoples, achieved through ensuring involvement, and Balance between western and Indigenous research methodologies, analysis and subsequent treatments as appropriate for the ques;on.

6 6 Frameworks The Two Eyed Seeing; Concept of ethical space; Interfacing frameworks The Medicine Wheel the Metis Ways of Knowing framework; and Cultural frameworks Inuit Qaujimajatuqangit.

7 7 Ethical space Elder Reg Crowshoe and Elder Willie Ermine Western knowledge holders Ethical space Indigenous knowledge holders/ keepers At war with diseases The body is a machine Seeking harmony Restoring balance Ermine. (2008). The Ethical Spaces of our Humanity, Clare Brant Memorial Lecture in Aboriginal Health, Thursday, October 30, Winnipeg: University of Manitoba.

8 8 How can this really work? Ermine & Crowshoe. (2014). Honouring our knowledge gifs: An Aboriginal Research Forum, November 13-14, Edmonton: Alberta Government.

9 9 Two eyed seeing Two- Eyed Seeing is the Guiding Principle brought into the Integra;ve Science co- learning journey by Mi'kmaw Elder Albert Marshall in Fall Etuaptmumk is the Mi'kmaw word for Two- Eyed Seeing. Seeing mul;ple contexts simultaneously. Picking from two worlds. Co- learning. Reciprocity. How much of CIHR/SSHRC/NSERC s funding goes to, Research informed by western science; Research informed by Indigenous science.

10 10 Inuit Qaujimajatuqangit Inuit epistemology or the Indigenous knowledge of the Inuit. The term translates directly as that which Inuit have always known to be true. 1. Pijitsirniq (or the concept of serving) 2. Aajiiqa;giingniq (or the concept of consensus decision- making) 3. Pilimmaksarniq (or the concept of skills and knowledge acquisi;on) 4. Piliriqa;giingniq (or the concept of collabora;ve rela;onships or working together for a common purpose) 5. Ava;mik Kamaiarniq (or the concept of environmental stewardship) 6. Qanuqtuurunnarniq (or the concept of being resourceful to solve problems) Na;onal Collabora;ng Centre for Aboriginal Health Inuit Qaujimajatuqangit: The role of Indigenous knowledge in suppor;ng wellness in Inuit communi;es in Nunavut. Prince George, BC. : Na;onal Collabora;ng Centre for Aboriginal Health. hlp:// ccnsa.ca/docs/fact%20sheets/child%20and%20youth/inuit%20iq%20en%20web.pdf

11 11 Métis Ways of Knowing Bartlel et al. (2010). Diabetes and Related Health Care U;liza;on in the Me;s Popula;on in Manitoba. Winnipeg: Manitoba Me;s Federa;on.

12 12 Medicine wheel Mul;ple representa;ons of a sacred symbol Dakota, Blackfoot and Cree Now commonly used as an organizing framework, that represents the holis;c nature of Indigenous knowledge and experience: it reflects balance between different elements Brant Castellano. (2002). Upda;ng Aboriginal Tradi;ons of Knowledge. In G. J. Sefa Dei, B. L. Hall, & D. Goldin Rosenberg (Eds.), Indigenous knowledges in global contexts (pp ). Toronto, ON: OISE/UT, University of Toronto Press.

13 13 How can this work? There is no such thing as Indigenous/Aboriginal knowledge, Indigenous/Aboriginal methodologies: there are knowledges, and contexts grounded in local cultures as defined by those involved. Frameworks and resources abound: their appropriateness must be defined by the community/partner, based the context. Power differen;als must be recognized and addressed: everyone has something to contribute that only they can contribute. Research on Research for Research with and increasingly by Studies grounded in Indigenous science (re- search of subjugated knowledge) must be led by knowledge keepers/holders.

14 Innova5on suppor5ng Transforma5on 14 in community- based primary healthcare research project (IPHiT, Katz, Lavoie, Kinew). Nanaandawewigamig- based researchers: * Brought cultural and technical exper;se and experience to the study * Managed 90% of the study budget * Coordinated all communica;ons, research ac;vi;es, data extrac;on processes, analysis and communica;on * Ethical oversight CB concept of PHC Analysis of admin data (hospitaliza;on) University- based researchers: * Brought technical exper;se and experience to the study * Par;cipated in community processes * Assisted in problem solving Engagement process Community based Local Research Assistants: * Weekly conference call * Co- developed instrument * Data analysis and communica;on Pa;ent and provider survey Case studies in communi;es with beler outcomes Focus on community priori;es for transforma;on: mental health Community partners and par5cipants, including Health Directors in 8/63 MB FN: * Advisors on all sub- studies * HD involved in weekly conferences * Data shared for feedback on analysis and interpreta;on in terms of system transforma;on

15 15 Framework for First Nation, Metis and Inuit Engagement hlps://umanitoba.ca/facul;es/ health_sciences/medicine/media/ UofM_Framework_Report_web.pdf

16 16 Funders and expectations Meaningful rela;onship On- going engagement Compensa;on for knowledge holders/elders work Community employment, research skill developments Bi- direc;onal learning Avoid sensa;onaliza;on of findings Ownership of data and co- authorship to be worked through

17 17 In conclusion It is about partnership, respect, health, Indigenous knowledges/ science/prac;ces, reconcilia;on, beler research, ceremonies, transforma;on, respect, more respect.

18 18 Questions for discussion 1. How might some of the concepts presented be opera;onalized in your research? 2. What might be barriers? Deterrents? 3. What might help?