TB in Saskatchewan’s Indigenous Population

TB in Saskatchewan’s Indigenous Population The Role of Cultural, Societal and Historical Issues Dr. Veronica McKinney, Director, Northern Medical Services

Objectives • To highlight various issues that impact health care delivery in Saskatchewan’s Indigenous population. • To review factors that can contribute to inadequate treatment or non-adherence to treatment • To provide some potential strategies to better engage the Indigenous population.

Introduction • Indigenous peoples worldwide suffer a disproportionate burden of illness due to TB • Canada, 2008: • Indigenous rate of TB 28.2/100,000 (FN/I/M) • Canadian born Non-AB 0.8 cases/100,000 • Poor adherence to TB therapy is the most common cause of initial treatment failure and disease relapse, which in turn contributes to patient morbidity, mortality, the transmission of the disease to others and the development of drug resistance

Social Diversity Aboriginal communities and peoples are not the same. (The landscape is extremely varied). • Heritage language & culture • Political designation • Social integration • Religion • Community • Socio-Economic Stratification

Question • In Canada, how many groups are recognized as Indigenous? • A. 2 • B. 4 • C. 1 • D. 3

Answer: D (Three) • The Constitution Act, 1982, refers to the Indigenous people of Canada as “aboriginal peoples” which it defines as including Indian, Inuit and Métis peoples. • Although “Indian” is a legal term, it is more common now to use First Nations.

Heritage, Language and Culture • Athapaskan • Dene: Chipweyan • Algonquian • Nehiowuk: Plains, Woods or Swampy Cree • Anishnabe: Saulteaux, Ojibwa • Siouan • Nakota: Assiniboine, Stony • Dakota & Lakota: Sioux

Political Designation • Receive health services through a unique combination of federal, provincial and Aboriginal-run programs and services • Have created gaps and inadequacies • Need: improved access, greater Aboriginal control and involvement, and improved working relationships with the health system

Community • Remote, Rural or Urban • Suburban or inner city • On or Off Reserve • Non-Status Community • Metis Settlement

Socioeconomic Stratification • Increasing dramatically • Education • Economic Development • Employment opportunities

Question • On September 13th, 2007, the United Nations General Assembly adopted the declaration on the Rights of Indigenous Peoples. Which country or countries voted against the declaration? • A. United States • B. Canada • C. Australia • D. New Zealand • E. None of the above • F. All of the above

Answer: F (all of the above) • The US, Canada, Australia and New Zealand were the only four votes against the UN declaration. • The declaration outlaws discrimination against Indigenous peoples and promotes their full and effective participation in all matters that concern them. It also ensures their right to remain distinct and to pursue their own priorities in economic, social and cultural development.

Answer: F (all of the above) • Most of the rights included in the declaration are enshrined in other human rights treaties already adopted by Canada including the rights to cultural development, health and freedom from discrimination. • Source: http://www.un.org/esa/socdev/unpfii/en/declaration.html

History - Contact • Fur & whiskey trade • Epidemics • Missionaries • Extermination of the Buffalo

History - Treaties • Nation to nation contracts • Partially fulfilled • Poorly administered • Reserves: • Inadequate size and resources • Served to isolate and impoverish

History • Doctrine of Assimilation and Domination • Aboriginals are inferior • Unable to govern themselves • Treaties meaningless • European ideas correct, imposable on others • Protectionism lead to wide holes in Aboriginal cultures, autonomy, and feelings of low self-worth

History – The Indian Act • Restrictive • Controlled membership & all economic & political activity • Oppressive • Outlawed ceremonies • Pass laws

Question • In what year was the Indian Act officially legislated in Canada? • A. 1867 • B. 1900 • C. 1891 • D. 1876 • E. 1922

Answer: D (1876) • The first Indian Act was passed by Parliament in 1875. • Since then, numerous amendments have been made to the act. • The present act was passed in 1971, but its provisions are still rooted in colonial ordinances and royal proclamations. • forms the basis for federal jurisdiction on reserves • One complicating issue is how provincial public health acts are applied on reserves.

Question: • In what year was the Indian Act amended to make residential school attendance compulsory for all First Nations children ages 7 – 15 years? • A. 1886 • B. 1900 • C. 1920 • D. 1934

Answer: C (1920) • The written federal policy was to assimilate First Nations children by educating children away from family and community. • The last residential school closed in SK in 1996. • In the prime minister’s statement of apology regarding residential schools, in one statement he refers to an infamous quote that describes the intended effect of the schools: to be to “kill the Indian in the child.”

History – Residential Schools • Residential School Experience • Developed to expedite assimilation • Segregated Aboriginal children from their families • created an environment where infectious diseases thrived, made worse by "overwork, underfeeding, and various forms of abuse • In place for more than a century • The effects on people’s lives have not ended.

History – Residential Schools • Loss of identity & language • Self & cultural shame • Abuse: physical, sexual & emotional • Family disintegration • Substandard education • Accumulated generational impact

History – Residential Schools • Lost cultural identity, self-respect, and connections to their family, suffered sexual abuse, and had difficulties readjusting after going back home • Show symptoms similar to PTSD • High levels of suicide, alcoholism, and family violence • Cultural genocide

Question: • Which of the following were conditions in the residential schools? • A. Students were separated from their siblings • B. Students were punished from speaking Aboriginal languages • C. Students were at risk for malnutrition and infectious diseases • D. A high proportion suffered various forms of abuse • E. All of the above

Answer: E (all of the above) • These aspects (among others) contiributed to what have been described as the four fundamental harms of residential schools: • 1. physical and consequent emotional harm; • 2. educational harm; • 3. loss of culture and language; and • 4. harm to family structures

History • “60’s Scoop” • Indian Hospitals – to fufill burden to care, to further assimilate, to prevent interracial contagion • numerous accounts from Indian hospital survivors of multiple abuses, including sterilization and medical experimentation TB Sanitoriums: • Presented as positive forces in the treatment of TB amongst Indigenous Peoples • Demonstrates the paternalistic “white man’s approach” to caring for indigenous people.

History – TB Sanitoriums • This care was enforced by law. • The Notifiable Disease Act includes provision for detention of people with active TB until they are no longer infectious (NB NotifiableDisease Act; Campion, 1999). • From the perspective of many aboriginal people who became ill with TB, even though they were cared for and provided with good food, adequate rest and medications in the sanatoria, this treatment was not their choice and, indeed, the perception of many was that they were incarcerated in a sanatorium for several years at a time.

Effects of History • Economic • Social • Political • Profound personal and cultural loss – Intergenerational Trauma • Reinforcing a culture of victimization.

Health Systems • Long wait times for care • Health care facilities or mechanisms that actively or passively promote feelings of physical insecurity or rejection • Lack of trust, respect and/or dignity in relationships between patients and HCWs, as well as between HCWs.

Health Systems • Clients describe feeling patronized, not respected, controlled, not informed, and not listened to or taken seriously.

Health systems Failure on the part of HCWs and the health system to provide continuity of care and consistent care. Care that is apparently available but in reality is not accessible due to an operational culture that does not accord with patient needs (e.g., hours of operation, lack of home care, inaccessibility to the disabled, transportation barriers, etc..

Health Systems • Care, particularly within in-patient settings, that engenders or fails to address feelings of isolation, stigmatization and fear (with ensuing depression, anger or anxiety). • Staff that are insufficiently knowledgeable or skilled in the diagnosis, investigation and management of TB, particularly the potential side effects and toxicity of therapy. Such defects in quality of care fuel patient concerns about TB (e.g., medication side effects, fear of venipuncture, etc.). These factors have been commonly and consistently found to be negatively associated with TB adherence in many studies.

Health Systems • TB programs that “lose” migratory patients due to “watershed” areas of jurisdiction and/or poor patient follow-up and tracking sessions. • Care that focuses on TB but obstructs, or fails to acknowledge and assist, the patient with regards to other perceived health or social priority needs or adherence barrier (e.g., co-morbidities including addiction, employment, securing concerns, homelessness, etc.). In particular, TB programs that “compete” with addictions will most likely fail.

Personal Issues • Knowledge, attitudes and beliefs. • Recent studies in both rural and urban Canadian Aboriginal populations have revealed widespread misunderstanding of the causes, symptoms and risks associated with TB. • Many make meaning of TB based on their own and/or familial experiences with the disease and many connect TB to the transgression of social norms.

Personal Issues • Many people do not feel information that is written, broadcasted or delivered orally by health professionals is relevant, or they simply do not notice it.

Personal Issues • Negative beliefs, attitudes and interpretations regarding tuberculosis are generated through internal and external (social) mechanisms and may lead to fear, hopelessness, anger and a sense of loss that is directed inwards (depression) or outwards (anger and aggression). • Co-morbidities and life stressors

Personal Issues • Life stressors such as lack of resources (financial, shelter, time, available transportation), unemployment, instability in relationships, insecurity and fear are associated with decreased adherence to medical therapy. • Such stressors compromise healthy coping mechanisms (e.g., adherence to medication) and promote

Personal Issues • Patients who do not feel in control of their treatment, or who feel “left out” of their treatment, are more likely to be non-adherent

Social Issues • Poverty • creates barriers to adherence to TB therapy. Poverty is characterized by disadvantage both in a material sense (money, shelter, food, physical security, material goods, etc.) as well as in less tangible but critical spheres of power, voice and esteem • Social Stigma

Social Issues • Self and community efficacy • Approaches to the diagnosis and care of tuberculosis that carry messages of victimization or helplessness to patients, families and communities result in ambivalent states of dependency on, and anger with, ostensible “helpers”. • There is a prevalent negative stigma attached to TB in Canadian Aboriginal communities

Social Issues • The experience of colonization and institutionalization, alienation and marginalization has promoted the dissolution of traditional internal social control and norms of behaviour in some Aboriginal communities

tem • How does a Health • Care Professional • Respond?

Health System Interventions • Establishment of a knowledgeable, skilled and well-resourced multidisciplinary team with clear lines of authority and responsibility. • The team members are accountable to the patient, to each other and to the program. • Case manager is central to the team.

Health System Interventions • Provision of dedicated TB physician support and oversight • Health services that require minimal “negotiations” or power to use, which encourage patients to feel that they are valued, respected and the focus of care, and engender cultural safety.

TB in Saskatchewan’s Indigenous Population