Service delivery and clinical practice

• Health and social services for Indigenous children

  Understanding how health care services and insurance plans are distributed among various levels of jurisdiction for First Nations and Inuit children can be challenging, but important for clinicians. We recommend you start with this document: The Aboriginal Health Legislation and Policy Framework in Canada, National Collaborating Centre for Indigenous Health

  Non-Insured Health Benefits for First Nations and Inuit

  • Non-Insured Health Benefits for First Nations and Inuit, Health Canada

  Métis children and youth

  • Metis Health Benefit Program (Northwest Territories)
  • Métis Vision for Health

  First Nations/Inuit Health Authorities 

  • First Nations Health Authority, British Columbia  
  • Sioux Lookout First Nations Health Authority, Ontario
  • Cree Board of Health and Social Services, Quebec
  • Nunavik Regional Board of Health and Social Services, Quebec

  Child Protection System

  • Atikamekw Nation in Quebec inspiring others with sovereign youth protection. February 19, 2019, APTN National News
  • Sts'ailes marks 10 years of keeping apprehended children in community. June 13, 2018. CBC News
  • Aboriginal Operational and Practice Standards and Indicators (2009). British Columbia Ministry of Children and Family Development.

  Customary adoption and tutorship

  • First Nations of Quebec and Labrador Health and social services commission. Customary Adoption and Tutorship.
  • 'It's finally being recognized': Indigenous adoption practices now acknowledged in Quebec. CBC News, June 29, 2017
  • Northwest Territories and Nunavut. (1995) Aboriginal Custom Adoption Recognition Act.  
  • Ontario Child, Youth and Family Services Act, 2017, SO 2017, c 14, Sch 1

  Teleconsultation: Canadian sources

  • Jones, L., Jacklin, K., & O'Connell, M. E. (2017). Development and Use of Health-Related Technologies in Indigenous Communities: Critical Review. Journal of medical Internet research, 19(7), e256. doi:10.2196/jmir.7520
  • Fraser S, Mackean T, Grant J, Hunter K, Towers K, Ivers R. (2017). Use of telehealth for health care of Indigenous peoples with chronic conditions: a systematic review. Rural and Remote Health 17: 4205.
  • Khan I, Ndubuka N, Stewart K, McKinney V, Mendez I. (2017) The use of technology to improve health care to Saskatchewan's First Nations communities. Can Commun Dis Rep. 2017 Jun 1;43(6):120-124. eCollection
  • Volpe T, Boydell KM, Pignatiello. (2014). Mental health services for Nunavut children and youth: evaluating a telepsychiatry pilot project. Rural and Remote Health 14: 2673.
  • Gibson KL, Coulson H, Miles R, Kakekakekung C, Daniels E, O'Donnell S. (2011) Conversations on telemental health: listening to remote and rural First Nations communities. Rural Remote Health. ;11(2):1656. Epub.

  Medical evacuations

  • McDonnell L, Lavoie JG, Healy G, Wong S, Goulet S, and Clark W. (2019) Non-clinical determinants of Medevacs in Nunavut: perspectives from northern health service providers and decision-makers. Int J Circumpolar Health 78(1):1571384.  
• Jordan’s Principle and Child First Initiative

  Jordan’s Principle aims to make sure First Nations children can access all public services in a way that is reflective of their distinct cultural needs, takes full account of the historical disadvantage linked to colonization, and without experiencing any service denials, delays or disruptions because they are First Nations.

  • First Nations Child and Family Caring Society. Jordan’s Principle.
  • Gerlach, A. (2018) Exploring socially-responsive approaches to children’s rehabilitation with Indigenous communities, families and children. Prince George, BC: National Collaborating Centre for Aboriginal Health.
  • Assembly of First Nations (2015) Without denial, delay, or disruption: Ensuring First Nations children’s access to equitable services through Jordan’s Principle
  • Blackstock, C. (2012). Jordan’s Principle: Canada’s broken promise to First Nations children? Paediatrics & Child Health, 17(7): 368

  Requesting services under Jordan's Principle

  • Jordan’s Principle, Government of Canada
  • Infographic from First Nations Caring Society of Canada

  Documentaries

  • We Can’t Make the Same Mistake Twice (2016), Director: Alanis Obomsawin
  • Jordan River Anderson: The Messenger (2019), Director: Alanis Obomsawin

  Child First Initiative

  The Child First Initiative ensures Inuit children have access to essential government funded health, social and educational products, services and supports they need, when they need them.

  Requesting services under the Child First Initiative

  •  Supporting Inuit Children, Government of Canada
  • Child First Initiative posters
• Prevalent health conditions

  Some health conditions may be more prevalent in First Nations, Inuit and Métis children and families. Note that distribution of these health conditions may vary greatly from one community to another.

  Respiratory health and tuberculosis

  • Cormier M, Schwartzman K, N'Diaye DS et al. Proximate determinants of tuberculosis in Indigenous people worldwide: a systematic review. Lancet Glob Health. 2019; 7: e68-e80. 
  • Basta PC, de Sousa Viana PV. Determinants of tuberculosis in Indigenous people worldwide. Commentary. Lancet Glob Health. 2019 Jan;7(1):e6-e7.
  • Dehghani K, Lan Z, Li P et al. Determinants of tuberculosis trends in six Indigenous populations of the USA, Canada, and Greenland from 1960 to 2014: a population-based study. Lancet Public Health. 2018; 3: e133-e142.
  • Nicole Le Saux; Canadian Paediatric Society, Infectious Diseases and Immunization Committee. (2019) Approaches to detecting tuberculosis in children and youth. Paediatr Child Health, 24(1): 52.   

  Antibiotic resistance

  • James Irvine; Canadian Paediatric Society, First Nations, Inuit and Métis Health Committee. Community-associated methicillin-resistant Staphylococcus aureus in Indigenous communities in Canada. Paediatr Child Health 2012;17(7):385-6
  • Fernando DM, Tun HM, Poole J, Patidar R, Li R, Mi R, Amarawansha GEA, Fernando WGD, Khafipour E, Farenhorst A, Kumar A. (2016) Detection of antibiotic resistance genes in source and drinking water samples from a First Nations community in Canada. Appl Environ Microbiol 82:4767–4775. doi:10.1128/AEM.00798-16.

  HIV infection

  • “In 2016, the rate of newly diagnosed HIV was three times higher in First Nations living on-reserve than the overall Canadian population.” Source: Indigenous Services Canada and Assembly of First Nations (2016). HIV in First Nations living on reserve in Canada.

  First Nations Initiatives

  • Know Your Status
  • Preventing Infectious Disease: Sioux Lookout First Nations Health Authority
  • Promising Practices: Documentary from the Canadian Aboriginal AIDS Network
  • Sexual Health Wellbeing Learning Model: First Nations Health Authority, BC

  Fetal Alcohol Syndrome

  • New Brunswick FASD Centre of Excellence: Dream Catcher service delivery model of care for FASD, for First Nations people. This video explains how the program reflects Mi’kmaq teachings.

  Obesity, diabetes and other complications

  • Sellers EA, Dean HJ, Shafer LA et al. Exposure to Gestational Diabetes Mellitus: Impact on the Development of Early-Onset Type 2 Diabetes in Canadian First Nations and Non–First Nations Offspring. Diabetes Care. 2016 Dec;39(12):2240-2246. DOI: 10.2337/dc16-1148
  • McGavock J, Wicklow B, Dart AB, Type 2 diabetes in youth is a disease of poverty. Lancet. 2017 Oct 21;390(10105):1829. doi: 10.1016/S0140-6736(17)32461-3

  Rheumatic disease in First Nations and Métis in Canada

  • McDougall C, Hurd K, Barnabe C. Systematic review of rheumatic disease epidemiology in the indigenous populations of Canada, the United States, Australia, and New Zealand. (2017) Seminars in Arthritis and Rheumatism 46 : 675–686. 
  • Barnabe C, Crane L, White T, Hemmelgarn B, Kaplan GG, Martin L, Maksymowych WP.  (2018) Patient-reported Outcomes, Resource Use, and Social Participation of Patients with Rheumatoid Arthritis Treated with Biologics in Alberta: Experience of Indigenous and Non-Indigenous Patients.  J Rheumatol. 45(6):760-765.  doi: 10.3899/jrheum.170778.
  • Hurd K, Barnabe C. (2018) Mortality causes and outcomes in Indigenous populations of Canada, the United States, and Australia with rheumatic disease: A systematic review. Semin Arthritis Rheum. 247(4):586-592. doi: 10.1016/j.semarthrit.2017.07.009

  Dental health

  • S Holve, P Braun, JD Irvine, K Nadeau, RJ Schroth; Canadian Paediatric Society, First Nations, Inuit and Métis Health Committee and American Academy of Pediatrics. Early childhood caries in Indigenous communities. 2021 26(4): 255–256. (Abstract).
  • National Collaborating Centre for Aboriginal Health (2013). Early Childhood Tooth Decay. https://www.ccnsa-nccah.ca/docs/health/FS-ChildhoodToothDecay-EN.pdf

  Smoking and substance use

  • Jetty R, Canadian Paediatric Society, First Nations, Inuit and Métis Health Committee. Tobacco use and misuse among Indigenous children and youth in Canada. Paediatr Child Health 2017;22(7):395–399.

  Unintentional injuries

  • Banerji A, Canadian Paediatric Society, First Nations, Inuit and Métis Health Committee. Preventing unintentional injuries in Indigenous children and youth in Canada. Paediatr Child Health 2012;17(7):393
  • Amram O, Walker B, Schuurman N, Pike I, Yanchar N. Disparities in Paediatric Injury Mortality between Aboriginal and Non-Aboriginal Populations in British Columbia, 2001–2009. Int J Environ Res Public Health. 2016;13(7):651.
  • Pike I, MacDonald RJ, Piedt S, Macpherson AK. Developing injury indicators for First Nations and Inuit children and youth in Canada: a modified Delphi approach – CDIC November 2014;34(4): 203-9.
  • Margeson A, Gray S. Interventions Aimed at the Prevention of Childhood Injuries in the Indigenous Populations in Canada, Australia and New Zealand in the Last 20 Years: A Systematic Review. Int J Environ Res Public Health. 2017;14(6). doi:10.3390/ijerph14060589.
• Mental wellness and suicide
  • Rountree J, Smith A. (2016) Strength-based well-being indicators for indigenous children and families: a literature review of indigenous communities’ identified well-being indicators. American Indian and Alaska Native Mental Health Research. 23 (3):206-220.  DOI: 10.5820/aian.2303.2016.206
  • Health Canada (2015). First Nations Mental Wellness Continuum Framework.
  • Inuit Tapiriit Kanatami National Inuit Suicide Prevention Strategy
  • William Aguiar, Regine Halseth (2015). Addressing the Healing of Aboriginal Adults and Families within a Community-owned College Model. Prince George, BC: National Collaborating Centre for Indigenous Health
  • Chandler, M. J. (2011). The “Mental Health” of Canada Indigenous Children and Youth. Healthcare Quaterly,14(2), 50-57.
• Specific genetic conditions

  Information in this section is drawn largely from the OMIM (Online Mendelian Inheritance in Man) database. Our thanks to Dr. Anne-Marie Laberge (MD, MPH, PhD, FRCPC, CHU Ste-Justine, University of Montreal) for her careful review and suggestions on this section.

  North American Indian Childhood Cirrhosis (NAIC) (MIM 604901)
  NAIC is an (autosomal recessive) isolated nonsyndromic form of cholestasis in children from First Nations communities in Quebec, Canada. NIAC progresses to biliary cirrhosis requiring hepatic transplantation in childhood or early adulthood. The carrier frequency in at-risk populations was estimated ~9%. https://mirror.omim.org/entry/604901?search=604901&highlight=604901

  Cree encephalitis (MIM 608505)
  Cree encephalitis, or CE, (autosomal recessive) presents as developmental delay, cerebral atrophy with white matter changes and calcifications and systemic immunological abnormalities. CE is caused by mutations in the TREX1 gene (606609). In at-risk communities, the carrier frequency of Cree encephalitis is estimated at 1/30. No treatment is available. (From article: https://onlinelibrary.wiley.com/doi/full/10.1111/j.1399-0004.2005.00497.x)

  Cree leukoencephalopathy. Leukoencephalopathy with vanishing white matter (MIM 603896)
  Cree leukoencephalopathy, or CLE, (autosomal recessive) is a rapidly fatal leukodystrophy described in the native Cree and Chippewayan indigenous population of northern Quebec and Manitoba. The onset of CLE is between 3 and 9 months of age, with death by 21 months of age. Hypotonia often is noted in early infancy followed by relatively sudden onset of seizures, spasticity, hyperventilation, often in a setting of a febrile illness. CLE is caused by mutations in the EIF2B5 gene (603945) on chromosome 3q27. In at-risk communities, the carrier frequency of Cree encephalitis is estimated at 1/30.

  Osteogenesis Imperfecta type 7 (MIM 610682)
  Osteogensis imperfecta typeVII (autosomal recessive) were identified in a small First Nations community in northern Quebec. These children have small head circumference, proptosis, and white or light blue sclerae Multiple fractures were present at birth in all children. OI type VII is caused by mutations in the CRTAP gene (605497).

  Congenital cardiovascular diseases in Indigenous people. Long QT syndrome-1 (MIM 192500)
  Long QT syndrome (autosomal dominant) is caused by mutations in the KCNQ1 gene (607542). Long QT syndrome due to missense mutations in the KCNQ1 gene has been identified in individuals from a First Nations community in Northern British Columbia (Arbour et al, 2008). 

  Carnitine palmitoyltransferease I deficiency (MIM 255120) 
  CPT I deficiency is a (autosomal recessive) metabolic disorder of long-chain fatty acid oxidation characterized by severe episodes of hypoketotic hypoglycemia occurring after fasting or illness. Children with CPT I deficiency are usually developmentally normal between episodes. Onset is in infancy or early childhood.  A specific variant in the CPT1A gene, p.P479L, is highly prevalent in Arctic indigenous populations (Nunavut, northern British Columbia and Yukon). The CPT1A p.P479L occurs at higher rates in coastal regions with increased infant mortality.

  Spastic ataxia, Charlevoix-Saguenay type (SACS or ARSACS) (MIM 270550)
  ARSACS is a complex neurodegenerative disorder usually characterized by early childhood onset of cerebellar ataxia, pyramidal tract signs, and peripheral neuropathy. Most patients become wheelchair-bound; cognitive function is usually not affected. ARSACS has been observed in First Nations families in Quebec, although most frequent in individuals of French Canadian descent.

  Bone marrow failure syndrome 3 (BMFS3) (MIM 617052)
  Bone marrow failure syndrome-3 is a rare autosomal recessive disorder characterized by onset of pancytopenia in early childhood and due to homozygous or compound heterozygous mutations in the DNAJC21 gene. Patients may have: poor growth, microcephaly, and skin anomalies. Recently, BMTS3  was recently identified in 5 children from the same First Nation in Quebec. All patients had the same homozygous mutation (c.100A>G; p.Lys34Glu). All presented with: bone marrow failure, growth retardation, failure to thrive, developmental delay, recurrent infections, and skin, teeth or hair abnormalities. Additional features in some individuals included: retinal abnormalities, pancreatic insufficiency, liver cirrhosis, skeletal abnormalities, congenital hip dysplasia, joint hypermobility, and cryptorchidism.

  Microcephaly-micromelia syndrome (MIM 251230)
  Microcephaly-micromelia syndrome (MIMIS) is a severe autosomal recessive disorder that usually results in death in utero or in the perinatal period. Affected individuals have severe growth retardation with microcephaly and variable malformations of the limbs, particularly the upper limbs. MIMIS has first been described in a First Nations population in northern Saskatchewan in Canada. It is caused by a noncoding variant (c.1047-9A>G) in the DONSON gene, via an intron retention mechanism.

  Ritscher-Schinzel Syndrome 1; Rtsc1 (MIM 220210)
  The 3C (craniocerebellocardiac) syndrome (Ritscher-Schinzel syndrome), is an autosomal recessive developmental malformation syndrome characterized by craniofacial abnormalities, congenital heart defects, and cerebellar brain malformations and severe developmental delay. Cases were identified in a First Nations (FN) community in northern Manitoba, Canada. In these cases, KIAA0196 is the gene responsible for this condition, as all eight patients in this study were homozygous for a novel splice site mutation in the KIAA0196 gene.