The Multicultural Outreach Project
By: Puja Sahni
The Importance of Cultural Competency and Epilepsy...
"I have heard it said that there is a window that opens between two minds,
but if there is no wall, there is no need to fit a window."
Canada is a continuously growing nation, which adds to its mosaic of cultures each and every day. This country's cultural diversity enhances each and every mind and broadens our understanding of the world in a way that most other nations cannot. Each year, millions of people pick up their bags and arrive in Canada with hopes of starting a new life in a country that does its best to embrace the people of the world.
As multicultural as we are, there are still certain barriers that exist between members of different ethnicities. Language, religious, and ethical barriers are just a few of the problems that lead to miscommunication and cultural clashes in our society.
Understanding the diversity surrounding us is extremely important, especially in a health care environment. Physicians and counsellors need to be sensitive towards different cultures and the way in which their views differ from those of the traditional western society. Approximately five million residents of Canada have immigrated from around the world and with them they have brought their traditions, religions, socio-economical views, literacy and lifestyles. Many of these people arrive from countries where education is scarce and knowledge of western medicine is lacking. Traditional remedies, rituals, and prayers are administered to the sick, and it may be crucial to be aware of these various approaches to healing the ill when mixing them with western practices.
Epilepsy Ontario and various epilepsy chapters across the province are working together to improve the lives of those living with epilepsy. The Multicultural Outreach Project focuses on learning about the different cultural views withheld in various communities in order to create cultural awareness among physicians and counsellors working with patients diagnosed with epilepsy. According to Statistics Canada, the immigrant population in Ontario, excluding those arriving from the United States, is 2 626 745 (as of 1996). In addition, there are 2 556 830 people whose home language is one other than the national languages of English and French. The five most popular languages include Chinese, Italian, Punjabi, Spanish and Portuguese (Census, 1996). Lastly, there exists a grand diversity of religions among our population.
With respect to epilepsy alone, there are several different religious beliefs, superstitions, traditional remedies and social stigmas that attempt to define the disorder. This project will explore these factors within different cultures, ethnicities and countries. Helpful techniques for cross-cultural counselling and cultural competency in medicine will also be revealed.
An Example of the Negative Effect of Cultural Barriers:
The Story of Lia Lee...
(Acknowledgment is given to Anne Fadiman, author of The Spirit Catches You and You Fall Down, the story of Lia Lee, from where much of the following information was compiled).
Less than a decade ago, doctors in Merced, California were presented with a challenging situation with a Hmong family. The Hmong culture is one of oriental descent and people from this community arrive from countries in East Asia. The Lee family, originally from Laos, a South East Asian country, first brought their daughter Lia to the hospital when she was just three months old. She had experienced her first tonic-clonic (grand mal) seizure shortly after her older sister, Yer Lee, slammed the front door of their apartment. The Lees believed that "the noise of the door had been so profoundly frightening that her soul had fled her body and become lost," (Fadiman, 1997, p.20). According to the Lees, Lia's seizing symptoms were undoubtedly qaug dab peg, which means "the spirit catches you and you fall down," a term for epilepsy commonly used by the Hmong.
Although epilepsy is regarded as a serious affliction by the Hmong, it is also seen as an illness of some distinction, since Hmongs living with epilepsy often take on religious roles as shamans. Their seizures are thought to bring them to an altered state, "a potential point of entry into the spiritual realm to which the rest of us are denied access," (Lammert). The fact that they, too, suffer from illness provides them with an intuitive sympathy towards others who suffer and they are seen as credited healers (Fadiman). Because they held these cultural beliefs about epilepsy, Lia's parents were both concerned and proud. Parents in this community are very gentle and compassionate in their care for their children. The Lees wanted the best care for Lia; however, cultural clashes with the western world led to misunderstandings, which prevented cooperative healing between Lia's parents and her doctors.
The first time that Lia was brought to the hospital, she was sent home with a diagnosis of "early bronchiopneumonia or tracheobronchitis." There was no way of knowing that her bronchial congestion was probably a result of her seizure, as she was not seizing when her parents brought her in. The second time, the same scenario occurred, and the same misdiagnosis was made. The third visit to the emergency room was different. Lia was still seizing at this point and, this time, there was an English-speaking cousin present. Previously, there were no interpreters available at the hospital and language barriers prevented proper care for the Lees' child. Once the language barriers were somewhat resolved, there came the consequences of the cultural barriers. The Lees would give Lia medication and then take her off of it at their own discretion, not wanting to continue once it seemed that she was "cured." This was a major problem as doctors could not understand why her parents would not comply with their instructions; they labelled the Lees as unfit parents. Lia was taken from her parents' custody and placed in foster care so that she could be treated properly. She was returned home almost a year later when her parents were thought, by the judicial system, to have developed the appropriate skills and cooperation that were needed for Lia's care.
On November 25, 1986, Lia Lee went into status epilepticus and her seizure lasted roughly two hours. After an unbelievable evening in the emergency department of the Merced Community Medical Center (MCMC), she was transferred to Valley Children's Hospital's Intensive Care Unit. Lia arrived there in a coma and, after eleven days, she was examined only to note that she now had brain damage. Her parents, especially her father, believed that this was a mistake on the doctors' part and that overmedication had led to her current condition. They demanded that she be returned home for them to nurture and care for, even though the hospital staff had informed the Lees that their daughter's life would soon be coming to an end. In the Hmong culture, to foretell a person's death is strongly taboo, as it is thought that the only way to know that a person is going to die is if you are going to kill him/her yourself. Lia was returned to MCMC and, shortly after, she was taken home by her parents who nurtured her in her vegetative state and kept her healthy and alive -- a surprise to all the medical personnel the Lees had dealt with.
It is a shame to note that cultural and language barriers between the Hmong and Western societies resulted in such a horrific and tragic experience for the Lees. More importantly, Lia's health was jeopardized because of the lack of understanding between both parties. Compliance on behalf of the Lees was important; however, it was also crucial for doctors to develop sensitivity to the Lees and their traditional parenting methods. Had the Lees' traditions and values been recognized and respected by the medical personnel, a trusting relationship between the family and the doctors may have developed, allowing Lia to benefit from the care offered by both parties.
Why the Multicultural Outreach?
"Everyone is kneaded out of the same dough, but not baked in the same oven."
- Yiddish Proverb
Aside from the fact that stories like Lia Lee's need to be prevented in the future, previously-conducted research has already noted differences between cultures and their beliefs and attitudes towards epilepsy.
Dr. Mina Gajjar and fellow researchers carried out a study on the cultural diversity in North America and how it relates to people's understanding of epilepsy. The paper stated that, "...when medical explanations fail to help patients gain control over their illness, and the prescribed medications prove ineffective..., patients are likely to revert to or hold onto a culture-specific meaning of the illness and of beliefs about its etiology."
A new rating scale (included in this kit) was created to assess the differences and similarities seen among the three cultures which included Caucasians, South Asians, and East Asians. Three factors were used to explore the underlying attitudes and beliefs represented by each of the cultures. These include: Metaphysical (spiritual/supernatural beliefs); Enviro-psycho-social; and Neurological beliefs about epilepsy. Below are some of the summarized findings of the study:
- gender, age, and education were not found to be factors that influenced the differences in response patterns between cultures
- duration of stay in North America by the different participants was a significant factor (i.e., there were relatively stronger Neurological beliefs among those living in North America for a longer period of time)
- Caucasians were found to have rated Neurological beliefs of higher importance than had South Asians and East Asians
- South Asian ratings of Enviro-psycho-physical beliefs rated higher than Caucasian ratings
- all three groups rated Metaphysical beliefs lower than Enviro-psycho-physical and Neurological beliefs, with Caucasians rating them significantly lower than South Asians and East Asians
Although all three cultures rated Neurological beliefs as the highest, there were significant differences between the Caucasians and the other two cultural groups with respect to Metaphysical and Enviro-psycho-social beliefs. For this reason, it is important that we further explore these different beliefs in order to better care for the multicultural society that lives with epilepsy.
The need for cultural competency is being recognized by physicians all across North America. More than just the language barrier prevents proper communication between the physician and his/her patient. Efforts are being made to decrease the culture gap between these two parties and, hopefully, this information kit will provide as a similar tool.
About this information kit:
Each component of this kit explores a different culture and the traditional beliefs associated with it. Traditional remedies, socio-cultural stigmas, spiritual beliefs and superstitions are revealed. Hopefully, this kit can constitute as an educational tool for all those working to improve the lives of people living with epilepsy. In order to optimize the care received by these people, we must take the initiative to learn about their beliefs and lifestyles prior to confusing, or overwhelming them, with those of the western world. Understanding societies that do not run parallel to our own is the best way to prevent cases like Lia Lee's from reoccurring.
Project Focus:
Resources:
1. Canadian Statistics, Census 1996, Statistics Canada Page, 9 July 2002. <http://www.statcan.ca>.
2. Fadiman, Anne, The Spirit Catches You and You Fall Down: a Hmong child, her American doctors, and the collisions of two cultures 1997.
3. Gajjar M, Geva E, Humphries T, Peterson-Badali M, Otsubo H. A New Scale to Assess Culture-Specific Beliefs and Attitudes about Epilepsy. Epilepsy and Behaviour 2000; 1:235-255.
4. Kim, Howard. Managing Diversity. American Medical News 25 Jan. 1999. (Available at <http://ww.ama-assn.org/sci-pubs/amnews/pick_99/feat.htm>).
Epilepsy Ontario 8 August 2002
Thanks to HRDC (Human Resource Development Canada)
Summer Career Placement Program, and to Puja Sahni for her
work in researching and creating this project.
