La Programación Maestra De Producción

Educational and Carrier Screening Program for Cree Leukoencephalopathy (CLE) and Encephalitis (CE)

Network of Collaborators

• CORHAM, Chicoutimi (Foundation from Lac Saint-Jean on hereditary diseases) • PQMGO (Quebec’s Association on rare genetic diseases)

A link to the Eeyou Awaash Foundation (EAF) web site will be added • Complexe Hospitalier de la Sagamie, Genetic Counselling (Chicoutimi) • Sainte-Justine Hospital, genetic services (coaching)

• The Montreal Children’s Hospital: school-based program team and genetic services (coaching)

• McGill University Genetic Counselling Program

o Director Jennifer Fitzpatrick: review of the training prepared for nurses o Presentation of the Program to Genetic Services of the Montreal Children’s

Hospital

o Observation with Genetic Counsellor • Pierre-Boucher Hospital: perinatal bereavement • CHARL (Laval): perinatal bereavement.

Development of Tools for Education and Screening Tools for Genetic Counselling

Collaborators

• Claude Prévost, genetic counselling, Complexe Hospitalier de la Sagamie • Jacques Michaud, geneticist, Hôpital Sainte-Justine

• Michael Lefson MD; Nathalie Ouellet, archives, Hôpital de Chisasibi • Consent Form

• Letter for CLE positive result • Letter for CE positive result • Letter for CLE negative result

• Collective prescription and appendix (advice to couples)

• Terminology of genetic terms in Cree, produced by Brian Webb in collaboration with Chisasibi’s CHRs, elders and EAF members

Promotional Tools

Collaborators:

• EAF

• CHRs Chisasibi

• Janick Tremblay CORHAM

• Jacques Michaud, genetist Hôpital Sainte-Justine • Annie Capua, Montreal Children’s Hospital • Michael Lefson MD

• Dimitrios Deschènes MD • Promotion brochure about the program • Information brochure on prenatal diagnosis • Educational Power Point on the program

• Questionnaire True or False (collaboration Emily Sam CHR) • Promotional poster (being prepared by Beesum Communications)

Tools for Peri-natal Bereavement

• Order documents: Baby Bear has died (Préma Québec); We’ve lost our baby…Why? How? (CSSS Vaudreuil-Soulanges)

• Guideline for peri-natal bereavement follow-up

Production of a Database with the Collaboration of Pierre Lejeune (Public Health) Promotional Activities

• Regular follow-up and collaboration with the Eeyou Awaash Foundation: shopping center, local radio, General Assembly on Fort George

• Contribution on their web site: www.eeyouawaash.com Coming: Power Point and brochure on the web site

• Multiple educational activities: Cree Heath Board (CHB), Cree School Board (CSB), MSDC, Day Care, Band office, Youth Center, local radio

• Participation at the Regional General Council Meeting 2007 Cree Women of Eeyou Istchee

• Article in the Chisasibi’s Community Newsletter by Andrea Napash

• Article in Cree in the Whapmagoostui News Letters (Karen Masty), with terminology of genetic terms created by Brian Webb

• Every community was visited at least once for promotional activities with the collaboration of the CHRs, e.g: meeting with Council, Program Heath Officer, CHB employees, local radio and day care

Clinical Activities Consultations

• Genetic consultations and screenings were performed in Nemaska, Whapmagoostui, Wemindji and Eastmain

• Creation of the CE test by Sainte-Justine Hospital (April 2007), previously only the CLE test was available

• Regular participation in the prenatal clinic at Chisasibi Community Health • Clinical supervision for the nurses when needed

• Telephone conference consultation.

Training for CHRs

• June 2007: Annual training in Val d’Or, presentation of the program • April 2008: Meeting with the new CHRs in Val d’Or

• Educational document included in their initiation’s binder

• “Genetic aid” to help them to provide education to the population

Coming: June 2008, presentation of the program for the new Awaash CHRs in Mistissini.

Training for Nurses

Promotion for the Program

• Document included for the initiation of all nurses

• With the collaboration of Lyse Poirier, presentation of the program to all new nurses • Annual nurses training in Val d’Or (2007), presentation of the program.

Training for Genetic Consultation

• Development of tools for training

o Powerpoint for genetic consultation

o Powerpoint for the application of a School-Based screening program o Appendix: referral, web site list, text book

o Genetic Aid to help nurses to provide education. • Training of Jeannie Pelletier, Chisasibi School Health Nurse

Coming: Training for Awaash Nurses in Mistissini, June 2008 Training for School Health Nurses, Fall 2008.

School-Based Program Promotion

• Fall 2007 - with the collaboration of the EAF we met the Joint Committee (CRA, CHB, CSB), Cree School Board Management Committee, PIT Committee (directors), Council of commissioners

• In December 2007, acceptance by the Cree School Board Commissioners of a School- Based Program for CLE and CE addressed to students (minimal age 14 years old) on a voluntary participation

• Visit to the nine (9) communities for the promotion of this School-Based Program, presentation addressed to CSB employees and parents committees during pedagogical days with the collaboration of the School Health Nurse and the CHRs

• A resolution for the CSB was written with the collaboration of the EAF and presented by Marlène Beaulieu, Program Officer for Healthy Schools

Development of Tools for School-Based Program

• Letter for parents

• Registration form for students • Powerpoint for CSB employees • Powerpoint for students

• Guideline for the organization of the School-based Program.

Update on the School-Based Screening Chisasibi March 2008

• A letter was mailed to the parents ten (10) days ahead of time informing them about the activity

• Announcement on the radio with the collaboration of EAF Members

• 90 students (Secondary 3, 4 and 5) participated in an educational session during biology and science courses

• 60% decided to be tested

• Results given: we gave back 90% of the results

Coming: School-Based Program for the other communities in 2008-2009.

Other Activities

• Discussion with Genetic Services of the Montreal Children’s Hospital about a surveillance project on MCAD (genetic metabolic disease)

Report – Answers from the Population

• About 300 individuals participated in educational sessions • 94 genetic consultations (51 at school)

• 85 individuals were tested.

Report - Answers from Health Professional

• Occasional referral from health professionals (CHRs, nurses, doctors, pediatricians)

Obstacles

• Difficulties to meet all health professionals due to high turn-over

• Difficulties to assume the accessibility and the continuity of the service (sorties, visits in other communities, only one fully-trained nurse).

Recommendations: Raise the Accessibility of the Service

• Encourage health professionals to refer to the program

o Update of the Maternal and Child Health Program about CLE and CE (Francine Brochu, PHO, Public Health was contacted)

o Promotional poster to encourage the population to address requests to CHRs, doctors and nurses about CLE and CE (Louise Pedneault did the link with Beesum Communications)

o Organisation of a workshop for CHRs • Training other nurses to provide counselling

o Encourage the training of Cree nurses to assure the continuity of the services

o Encourage the training of Awaash Nurses, Community health nurses (at least one in Chisasibi) and School Health Nurses

o A genetic nurse should stay in charge of the population program and supervise the consultations to maintain a standard of practice • Educational activities

o Promote the screening test in preconception

o Recall that the program is not associated with a survey o Reach people at their work places

o Continuation of the translation work with Brian Webb

Hélène Denoncourt, R.N Genetic Counseling

Nutritionist