Epilepsy Ontario :: Epilepsy in the Canadian Aboriginal Community

Epilepsy in the Canadian Aboriginal Community

Compiled by: Puja Sahni

Of the various cultural groups in Canada, the Aboriginal community is a unique and rapidly growing one. As of 2001, over 1.3 million people in Canada identified themselves as coming from Aboriginal ancestry, a number representing 4.4% of the Canadian population at the time. The 1996 Census reported this percentage to be lower at 3.8%(1), indicating an increase in the period between 1996 and 2001. Additionally, the number of people who do not identify themselves as Aboriginal but who do report to be of Aboriginal ancestry, has also increased over the same five year period. These increases are attributable to demographic factors such as high fertility rates among the Aboriginal community as well as increased awareness among individuals about their cultural roots(1). Due to the significant number of people comprising the Aboriginal community(2) and the continued increases expected for the future, it is important for us to understand the various traditions, principles and practices embraced by this population.

Presently the Aboriginal community in Canada faces serious health issues including high suicide rates, epidemic proportions of diabetes and major alcohol and drug addiction.(2) Government and not-for-profit organizations across the country are, and have been, persistently working at improving health among these individuals. Unfortunately, cultural and language barriers have made these efforts difficult to implement. Many of the views and approaches to health in the Aboriginal community vary significantly from those of the western civilization. In order to address the pressing issues facing the Aboriginal population, it is important for health care providers to develop a sensitivity and understanding for culturally specific beliefs and views. Although information on epilepsy and its affect on this community is limited, several insights into Aboriginal practices and principles will be highlighted in this report. We hope that health care professionals and counselors will find this information to be valuable when i
nteracting with patients of Aboriginal decent, including those living with epilepsy.

Contents:

Clarification of Terms
Native Ethics and Rules of Behaviour – Clare Brant
Participatory Action Research (diabetes article…Boston et al.)
A Guide for Health Professionals Working with Aboriginal People (SOGC)
Conclusions

Clarification of Terms

Estimates of the Aboriginal population size in Canada are dependent on how one defines the term 'Aboriginal.' This term is commonly used to describe the indigenous residents of Canada (i.e. North American Indian, Métis or Inuit) and their descendants.

Because the name 'Indian' was found by many to be offensive, the term First Nation was introduced in the 1970s as a replacement. There is no official or legal definition of the term First Nations; however it generally refers to the Indian people in Canada, both Status and non-Status, as well as Treaty Indians. Table 1 provides descriptions for some of the terms that will repeatedly appear in this report, and are intended to clarify the context of this report.

Table 1 – Terms and Definitions

Term	Definition
Inuit	Arctic-Dwelling peoples of Canada2
Métis	People of mixed Aboriginal and French origin.2
Aboriginal Ancestry/Origin	People of North American Indian, Métis or Inuit ethnic origin.1
Aboriginal Identity	People who identify with at least one Aboriginal group (i.e. North American Indian, Métis or Inuit) as well as Registered or Treaty Indian and/or Band or First Nation membership.1
Registered, status or treaty Indian	People registered under the Indian Act of Canada; Treaty Indians are those registered under the Act and who can prove descent from an Indian Band that signed a treaty.1

For the purposes of this paper, the term Aboriginal will encompass those people who are from, as well as those who identify themselves with, Aboriginal origin. It is important to acknowledge, however, that the information compiled in this paper is not necessarily applicable to all Aboriginal persons. The purpose of this paper is to increase sensitivity among members of society who interact with patients from the Aboriginal community, as it is important that we increase our understanding and appreciation of the possible beliefs and principles exercised by certain members of the Aboriginal community. Nonetheless, the information presented here is not exhaustive of the Aboriginal culture and thus external sources should be sought in order to obtain a greater understanding and knowledge base.

Native Ethics and Rules of Behaviour

Dr. Clare Brant Brant C.(3) , Canada's first Aboriginal psychiatrist, authored an article in the Canadian Journal of Psychiatry in 1990 titled, "Native Ethics and Rules of Behaviour." His article introduced several new concepts common to the Canadian Aboriginal community as well as an understanding of issues that are significant to this population. Brant noted that failure to recognize and understand the cultural differences of the Aboriginal community can lead to errors in diagnosis and treatment, thereby turning intentionally helpful encounters into destructive ones. In his article, Brant cautions his readers from applying the ethics, beliefs and principles presented in an indiscriminant or universal manner since his contacts were limited to the Native people of Ontario and Quebec at the time.

Group unity and cohesiveness within Native societies has always been considered to be essential for one's survival in hostile environments. Interpersonal conflicts were therefore avoided and this sense of unity among the various Aboriginal groups has translated to the community that exists today. Several Native conflict suppression practices that helped develop and maintain this unity are presented in Brant's article,3and a summary of these concepts are highlighted below.

Non Interference
This is one of the most widely accepted principles among the Native population. This ethic "promotes positive interpersonal relations by discouraging coercion of any kind, be it physical, verbal, or psychological." An attempt to exert pressure by advising, instructing, coercing or persuading is seen as undesirable behaviour, as every individual's independence is highly respected. In western society some might equate this with the principle of autonomy, however typical behaviour of the "white" man, where advising and persuading is common, has been noted (4) to be contrary to the principle of non interference.

An example of how non interference may be exercised among the Aboriginal population can be found in parenting strategies. Even at a young age, children are encouraged to make their own decisions which would then be respected by their parents. Thus, when dealing with Aboriginal patients, excessive or unwanted advice should not be given to those individuals who do not seek it. However, this should not prevent health care providers from doing what they can to ensure that their patients make thorough and well-informed decisions.

Non Competitiveness
The practice of non competitiveness is meant to suppress conflict by discouraging problems between members of a group. Additionally, it is meant to prevent the less able or less successful members from feeling embarrassed or inferior. Brant notes that this behaviour is often interpreted by non Aboriginal employers as a lack of initiative and ambition among their Aboriginal employees.

Emotional Restraint
As an extension of non interference and non competitiveness, restrained emotions among the Aboriginal people promote self-control and hinder the expression of violent feelings. However, positive emotions are suppressed as well, which is important to note. A number of psychological disturbances evident in the Aboriginal community have been attributed to the suppression and repression of hostile and angry feelings. Alcohol consumption patterns in the Aboriginal community are also the cause of several problems and these repressed feelings are often revealed when individuals are intoxicated.

Sharing
The reasons for sharing in the Aboriginal community are very different from those of the white/western society where people strive for individual prosperity and success. Because group survival was so critical in Aboriginal times, as a way of life individuals were expected to take only as much as they needed from nature so that there was enough for others. Sharing not only discourages the hoarding of resources, but it reduces the likelihood of greed, envy, arrogance and pride within tribes. In addition, it promotes economic and social heterogeneity and exceptions are only made for the elderly population. On a less positive note however, sharing may discourage individual ambition and this may translate into the underachieving of tangible assets such as post-secondary education.

The Native Concept of Time
The Native concept of time is thought to be intuitive, personal and flexible. Having lived rather dependently with nature in the past led to the concept of "doing things when the time is right" – when all environmental factors combined bring success. Today, the concept of time is less a principle of living and more a "manifestation of the need for harmonious interpersonal relationships." It is often important to wait for important or influential members of the group to arrive before a certain event/meeting begins. Because of the universality of the concept of time among the Native community, many Aboriginal people do not seem to mind if social events or other meetings start later than scheduled.

The Native Attitude toward Gratitude and Approval
Unlike typical Western practices, feelings of gratitude and approval among the Aboriginal population are rarely shown or voiced. Brant states: "One is not rewarded for being a good teacher, doctor, nurse, farmer, fisherman or hunter because that is what one is supposed to be; conversely, to be less than adequate would be a great embarrassment for the person being assessed, and so is not pointed out either." The intrinsic value of completing a task or carrying out a deed is considered to be a reward in itself. Excellence is expected at all times and as a result, individuals may stay clear of taking risks or trying new things.

Brant also states that many Native individuals find it difficult to accept praise, reward or reinforcement, especially if they feel that the same sentiments are not felt by others in the group or by themselves. In situations when constructive comments are warranted, they still feel that others who have not performed as well may feel embarrassed and that praise towards one individual may disturb intragroup harmony.

Native Protocol
Many people who are not well acquainted with the Aboriginal culture may associate the community as being unstructured with respect to rules of conduct and etiquette. However, those who have a greater understanding and knowledge base are aware of the many demanding protocols that structure behaviour in the Aboriginal community. Rules may vary between villages, clans, tribes and bands, where each observes distinct and specific practices. However, in keeping with the ethic of non interference, those who are unfamiliar with the rules of a particular Aboriginal group are not instructed of the local practices or protocols.

The Practice of Teaching by Modeling
Western civilization typically uses shaping practices where those learning, such as children, are rewarded for following the instructions of their teachers. In contrast, teaching practices among the Aboriginal are exercised through modeling. Children, or those learning, are shown rather than told or instructed on certain acts and behaviours. This can be interpreted as a form of conflict resolution where the teacher does not identify him or herself as knowing more than the student. Instead, through his/her own actions, the teacher "conveys useful and practical information which the student then has a choice of adopting or rejecting." Additionally, students are not placed under pressure to perform certain tasks unless they are adequately prepared and taught how to do so.

Participatory Action Research

In 1997, Boston et al Boston P et al. (5) discussed the advantages of implementing participatory action research in order to better understand Aboriginal Canadians, specifically with respect to the meanings they attributed to the rising incidence of diabetes in their community.

Participatory action research is a research approach that goes beyond the usual forms of social inquiry in that it enlarges "the role and representation of subordinate and marginalized communities in formal policy-making processes." This is achieved by redefining the relationship between the researchers and those being researched such that it is no longer possible to distinguish between the two. The role of the professional researcher therefore, is to use his or her expertise along with the lay knowledge, skills and experiences of those being studied. This approach allows for different parties with equally valuable knowledge to enter into dialogue so that well-informed solutions can be derived for the specific issue(s) at hand.

The purpose of the study conducted by Boston et al was "to investigate and explore how forms of health care provision aimed at the prevention of diabetes can be constructed by the Cree Board of Health and Social Services of James Bay (CBHSSJB) using Cree understandings and experiences of the disease." Because of the rising incidence of the disease among this community and because of the uncertainty surrounding existing programs and services, this study worked to ascertain how these individuals viewed, interpreted, and handled the prevalence of diabetes among their people. Thus, the study provided the affected community with the opportunity to share with others their understanding of, and experiences with, diabetes.

Although the prevalence and incidence rates of epilepsy in the Aboriginal community are not nearly as significant as those of diabetes, using a collaborative approach when addressing Aboriginal patients with epilepsy may still prove effective. The Boston et al study in particular, found the involvement of community health representatives (CHRs) to be crucial in gaining a direct link to the perspectives of the Cree community of the James Bay region. The use of CHRs provided a sense of "ownership" of the research process among the Aboriginal group, thus allowing for more thorough and complete results to be achieved. CHRs are critical components of these communities and they are better able to relate to the community-specific issues than those attempting to provide external assistance. Boston et al found that the CHRs were helpful in clarifying issues and ensuring that interpretations were accurate.

The data from the study revealed that less than satisfactory communication between health care professionals and Cree patients existed with respect to verbal communication, food, lifestyle, health and illness beliefs, and participation in policy and decision making. Interpretation of these results should not be limited to understanding diabetes among the Aboriginal community because it is very possible that similar misunderstandings exist with respect to the various other health issues facing the population. As health care professionals and counselors attempt to tackle the health issues facing the Aboriginal population, it is important to keep the different cultural and traditional beliefs of the community in mind. Increased sensitivity for culture-specific principles and rules of conduct is critical to improving the level of care provided. Collaborative approaches such as participatory action research represent ways in which various health care providers can achieve this increased understanding and sensitivity.

Cross Cultural Understanding: A Guide for Health Care Professionals

The Society of Obstetrics and Gynaecologists of Canada (SOGC) (6) released a policy statement in 2001 outlining a set of guidelines that health professionals could use when working with Aboriginal people. This development of these guidelines was funded by Health Canada and the statement was reviewed by the Aboriginal Health Issues Committee. The eleven recommendations presented in the statement are highlighted in Table 2 and some will be discussed further below.

Recommendation #1:
Relationships between Aboriginal peoples and their care providers should be based on a foundation of mutual respect.

Respect is a universal principle, however, the way in which it is exercised may vary from culture to culture
In the Aboriginal community, the ethic of non interference may be interpreted as a person showing respect for another person's independence. (3)

Recommendation #3:
Health professionals should work proactively with Aboriginal individuals and communities to address the gaps and barriers presented by the current health care system.

Existing barriers that have been identified have been categorized as attitudinal, values and beliefs, structural, socioeconomic, and language and communication based.
Attitudinal barriers are evident as racism, prejudice and stereotypes. While certain comments and gestures are intentional, it is important to recognize the more subtle actions that may occur less consciously due to preconceived assumptions.
Differences in values and beliefs may make certain individuals feel uncomfortable in health care settings with which they are not familiar.
Structural barriers experienced by Aboriginal individuals and communities in the health care field are the direct result of differing values and beliefs with respect to principles such as non interference and respect. Such barriers can also result from racist or prejudiced attitudes, or policies of a group of people or an institution. Geographical distribution of Canadian Aboriginal communities in relation to health care resources also contributes to structural barriers.
Socioeconomic conditions of several Aboriginal communities have significant implications on their mental, emotional and spiritual health and can be linked to depression as well as alcohol and drug abuse.
Language and communication barriers are not only due to limitations in translation, but to misinterpretations of the content being translated.

Recommendation #4:
Health professionals should work with Aboriginal individuals and communities to provide culturally appropriate health care.

This recommendation is supported by experts in the field of Aboriginal health care as well as by the First Nations and Inuit Regional Health Survey (FNIRHS), the Royal Commission on Aboriginal People (RCAP), the Canadian Medical Association and the Aboriginal Women's Health Report.
It has also been recognized that along with culturally appropriate health programs, these programs need to be controlled by Aboriginal communities themselves, as this will lead to feelings of empowerment towards achieving improved health within the community.

Recommendation #6:
Health care programs and institutions providing service to significant numbers of Aboriginal peoples should have cultural interpreters and Aboriginal health advocates.

Aboriginal languages spoken by large numbers of people as a mother tongue are the Inuktitut, Algonkian and Athapaskan language families.
Providing care in the patient's language whenever possible allows the individual to be a full participant in making his/her own decisions.
Medical interpreters should be knowledgeable of medical concepts and terminology, and in their ability to translate these concepts so that culturally specific values and beliefs are addressed. Family members are often asked to interpret information, however this is unethical and inappropriate as their knowledge and understanding of medical concepts may be less than adequate.

Recommendation #7:
Aboriginal peoples should have access to informed consent regarding their medical treatments.

Historically, many Aboriginal individuals have undergone medical procedures without receiving explanation or giving consent.
Several Aboriginal individuals have an experience of forced compliance and some may not even be aware of the concept of informed consent because of its western origin.
As a cultural protocol, some individuals refrain from asking their health care providers questions, as they feel this would be disrespectful.

Recommendation #8
Health services for Aboriginal peoples should recognize the importance of family and community roles and responsibilities when attempting to service Aboriginal individuals.

The importance of family is culturally specific. For Aboriginal societies, it is the central institution (7) and includes strong relationships and an extensive network of relatives.
Extended family members play an essential role in parenting of children and often the whole community may take part in a child's upbringing.
Whereas in typical western society, there is a strong emphasis on individual rights and freedoms, family and community success is of greater importance in Aboriginal ethics.
Family and community are also important in understanding and addressing health issues facing Aboriginal individuals.

Table 2 – SOCG Policy Statement Recommendations

#	Description
1	Relationships between Aboriginal peoples and their care providers should be based on a foundation of mutual respect.
2	Health professionals should recognize that the current health care system presents many gaps and barriers for Aboriginal individuals and communities seeking health care.
3	Health professionals should work proactively with Aboriginal individuals and communities to address these gaps and barriers.
4	Health professionals should work with Aboriginal individuals and communities to provide culturally appropriate health care.
5	Aboriginal peoples should receive treatment in their own languages, whenever possible.
6	Health care programs and institutions providing service to significant members of Aboriginal peoples should have cultural interpreters and Aboriginal health advocates on staff.
7	Aboriginal peoples should have access to informed consent regarding their medical treatments.
8	Health services for Aboriginal peoples should recognize the importance of family and community roles and responsibilities when attempting to service Aboriginal individuals.
9	Health professionals should respect traditional medicines and work with Aboriginal healers to seek ways to integrate traditional and western medicine.
10	Health professionals should take advantage of workshops and other educational researchers to become more sensitive to Aboriginal peoples.
11	Health professionals should get to know Aboriginal communities and the people in them.

Conclusions

The Aboriginal community in Canada is a unique and significant one. Several issues inconvenience this population, especially those related to health. Because the Aboriginal population is continuously growing, it is becoming even more critical for health care providers and counselors to increase their sensitivity towards the beliefs and values specific to this community. Aboriginal ethics, principles and behaviours are reflected in the way many Native individuals deal with particular issues, including the way in which they make health-related decisions. The information presented above simply touches upon the various concepts one can familiarize him or herself with in order to better understand an individual following Aboriginal culture.

It is important to note once again, that the concepts and guidelines presented above are not an exhaustive representation of all Aboriginal people and should not be applied universally to the Aboriginal population. The information above is intended to increase cultural sensitivity among health care providers in order to provide optimal levels of care for members of this community, specifically those living with epilepsy. We encourage our readers to seek further information on Aboriginal traditions and culture so that a more thorough and comprehensive understanding can be gained.

End Notes

http://www.turtleisland.org/healing/women1.pdf

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