The Impact of HIV among East Africans Living in the United States

Meti Duressa, MSWAfrican Americans Reach & Teach Health Ministry

Northwest AIDS Education & Training Center

(206) 850-2070 ~ www.aarth.org

Learning Objectives

Explore cultural differences among East African immigrants and refugees

Discuss the impact of HIV and stigma among East African immigrants and refugees

Identify barriers to care for East African immigrants and refugees

Identify strategies to improve access to health care

East African Countries

Sudan is the largest country in Africa

Language & Religion The official languages of Sudan are Arabic and

English

There are 400 languages (dialects) in Sudan, which causes barriers in communication. For example, some members of the Sudanese community in Washington State face challenges in communicating with each other

English, Swahili and Arabic are well spoken within certain tribes, but others speak only their own dialect

The two main religions are Christianity expressed in southern Sudan and Islam in most of regions

DiversityDiversity Ethnicity in Sudan is an important marker of regional

identity and heritage

Around 40% of Sudanese claim lineal Arab heritage or an Arab cultural identity

Ethnicities/People Groups % of Sudan Population

Dinka (or Muonyjieng)

Nilotic people Group

89%

Nuba Approx 6%

Nuer Approx 4%

Etiquette Women hug each other and on occasion men, but this

implies more to the younger generation Older women and men are greeted with full respect and

no eye contact Looking at an elder directly in the eye is a sign of

disrespect Handshakes is a sign of acknowledgement and paying

attention In some tribes and religion, handshakes might not be

appropriate across gender When asked “How are you?” the cultural reply is “Thank

God all is well”

HospitalityHospitality Sudanese love sharing especially when someone

comes to their house Foods: Chai, teas, cookies and desserts Accepting food from a Sudanese is a way of

acknowledging ones’ friendship and courtesy From a young age, most Sudanese (particularly in

the southern region) are taught to live by Biblical principals, including prayer before eating

Reconciliation and Death Reconciliation: is a major practice in the Southern

Sudanese culture and even takes place during funerals

When there is news of death or serious sickness, an elder person is supposed to tell/break the news

Doctors can tell the family about the news but also depends on what kind of news/sickness

If there is no elder of that specific community, a close elderly friend takes that responsibility of eldership

Cont. Reconciliation and Death

Death: In most Sudanese traditions, burial takes place within 1-3 days

In Sudan dead bodies are kept at home and are buried in family graveyards

In the US, dead bodies are kept in the hospital, then in the funeral homes. Sudanese gather in the house of the family of the deceased to mourn and pray

Sudanese cultural prohibits cremation, so it is very disrespectful to suggest burning a dead body for a Sudanese as a mean to saving money

Sudanese Emigration/ImmigrationSudanese Emigration/Immigration

Most Sudanese came to the United States as refugees, some are asylees

Sudanese started migrating to the United States in late and early 1990’s

Many refugees and immigrants who fled Sudan have suffered various traumas

Many of the Southern Sudanese resettled in the United States without family members because of the war

Somalia

Religion More than 99% of Somalis are Sunni Moslem. Allah’s will determines life, death, health and illness Prayer is done 5 times a day, wherever you are,

preceded by ablutions Fasting during Ramadan is a tenet of the faith. This

alteration of eating schedule needs to be factored into assessment and treatment

Many Somali women in Seattle wear hijab and almost all Somali women in Seattle cover their heads. Health care workers need to support Somalis who wish to maintain modesty

Family Islam allows up to four wives, if a man is able to

provide well and justly for four families

Divorce is common in Somalia and the U.S.

The U. S. government only allows one wife to immigrate with one husband

Children who emigrated with their father may be living in a family where the woman is not their mother

Family is defined as extended family

Patient Identification

Somali names have 3 parts: the first name is the given name, the middle is the father’s surname, and the last is the grandfather’s surname

In Somalia it’s rare to use the last name, but common in the U.S. and a potential source of confusion

Women do not change their last names when they marry

Birthdates are not important in Somalia. Many Somalis were assigned January 1st birthdates when they entered the U.S.

Etiquette

The right hand is the correct and polite hand to use in daily life (eating, greeting, etc.)

Greeting is with a handshake and Salam Alechem, but traditionally hand shakes do not occur across gender

Women hug and kiss (on both sides or on the hand) when they meet each other

It is considered impolite to not ask, “how are you and how is your family?”

Dying

It is considered uncaring for a physician to tell a patient or their family that they are dying

It is acceptable to describe the extreme seriousness of an illness

A special portion of the Qur’an, Yasin, is read at bedside when a patient is dying

Relationship Building and Communications

Time spent establishing a relationship will pay off for the patient and the provider

Somalis are traditionally oral historians and are not prone to brevity

The evil eye and “Mashallah” A loud and serious tone of voice is not unusual for a

Somali speaker and doesn’t necessarily imply anger

ETHIOPIA

Language & Religion

There are 80 languages and 200 dialects among Ethiopians

The predominant language among Ethiopians in Seattle is predominantly Amharic, Tigrigna, Oromiffa

The predominant religions are Ethiopian Orthodox, Moslem, Pentecostalism, and Catholicism

Etiquette

Women, and women & men who know each other, hug and kiss on the cheeks three or four times

Handshakes are exchanged between people who do not know each other

Those of the Moslems faith do not touch across genders

Modesty is highly valued

Death and Dying

Death is a community responsibility: In Ethiopia burial societies support when there is a death

in a neighborhood The society is responsible for making the announcement

and for taking care of all the organizational details of the funeral including preparing the food

Members of a burial society pitch in money every month for membership

In Ethiopia the family will wash the body. In the U.S., the funeral home prepares the body and the family brings the clothing

Delivery of news about death:

In Ethiopia the immediate family usually isn't told right away

An elder is called upon to deliver the news

In the United States, a close friend or family relation, other than an immediate family member, is still told first. Often, this person is an elder

For three days after a death, a family doesn't have to do anything except mourn

Cont. Death and Dying

Relationship Building and Communications

Relationships will be established by accepting the offer to drink tea or coffee

Time spent establishing a relationship will pay off

The answer to “ How are you?” will likely be “Thank God, I am fine.” This may not be an accurate statement

concerning the patients state of being

A numeric assessment of pain is not usually helpful

Healthcare Services Preference

Most East Africans prefer to be seen by female healthcare providers especially if it involves examination of private parts

In some cases it is okay for health providers of different gender to examine Sudanese patients; however, some might not be open to express themselves fully.

Common Cultural Practice

Self-Care

Men and women do not often complain about experiencing pain

Pain is not supposed to be expressed unless in death, where people tend to cry out loud, scream or throw themselves on the floor

Sickness is not taken seriously until one is very seriously ill

Over the counter medications such as Pain medications are used for serious illness

Children are not supposed to know what parents are suffering from unless the parents decide to tell them

HIV/AIDS Stigma as a Barrier to Care and Services

Part 1: Recall a time when you felt rejected for seeming

different from others

Time = 2 minutes

Part 2: Recall a time when YOU rejected another person

because they were different

Time = 2 minutes

Activity 1: What Does Stigma Feel Like?

Stigma perpetuates denial and silence

Stigma prevents acknowledgment of problem and care-seeking

Stigma is associated with shame

Stigma prevents dissemination of accurate information

Stigma

What is it?

The shame that PLWH/A experience when they internalize negative reactions of others

What impact does/can it have?

It may lead to: Mental health issues, depression, withdrawal, and feelings of

worthlessness, suicidal tendencies

Isolation of the person

Negatively impact his/her ability to access critical services

Self-Stigmatization

1. Testing and counseling seeking behavior

2. Disclosure of seropositive status

3. Access to care

HIV/AIDS related stigma impacts:

1. Impact on Testing & Counseling

The decision to test is impacted by:

Stigma (concerns that others may think less of us)

The manner in which HIV/AIDS testing and

counseling is perceived by others

2. Impact on Disclosure of

Serostatus Disclosure of HIV positive status is associated with

level of comfort within one’s environment

Disclosure tied to perceptions of the risks associated with the disclosure

The more accepting, caring, and nonjudgmental a social network is towards HIV, the more likely it is for individuals to disclose their status

Fear of rejection

Fear of being ostracized by family/friends

Fear of loss of employment

Fear of physical violence

Fear of deportation

Common Reasons for Not Disclosing HIV-Positive Status

3. Impact on Access to Care

Once diagnosed, individuals who are concerned about being stigmatized are more likely to delay care and/or not to adhere to care

As the disease progresses, individuals tend to retreat and isolate themselves

Denial of serostatus can also cause delayed care

Health care providers may exacerbate avoidance of care

Lack of HIV/AIDS Information

Prevention vs. treatment Ignorance Some cannot read Lack of trust It cannot happen to me

Women are a strong supportSystem for those exposedto HIV/AIDS

Responsibility of raising grandchildren for those lost their parents to AIDS

Activity 2: What are the Outcomes of HIV/AIDS Stigma?

Individual Response: Consider the three areas that HIV/AIDS stigma

impacts: Testing and counseling seeking behavior

Disclosure of seropositive status

Access to care Discussion the results of each of the above

situations?”

Time = 2 minutes

Psychosocial Factors

Psychosocial factors play a major role in delay in care

Denial/secrecy of status and significance of one’s infection Fear and anxiety about the illness HIV as a “death sentence…”

o Who view HIV as a death sentence experience feelings of hopelessness, despair, and fears of dying

Harmful traditions

Female genital circumcision

Abduction

Forced marriage

Underage marriage

Exposes to HIV/AIDS

HIV/AIDS and Women’s rights

Fear of domestic violence/ Divorce She is not faithful Cultural practice that expose woman to infection Women’s Rights Issues

Rapes occur without legal attentionWitches/ traditional doctors plays role on hurting

young girls and children

Respecting women’s rights wouldprevent HIV/AIDS

Immigration Issues

Concern that as part of the application they would be required to take an HIV test

FALSE for citizenship status True for asylum and refugee process Fear of deportation Especially for those who are in the asylum process

Sample case 50 y/o African born heterosexual male tested HIV+ as a part of INS screening for asylum purpose. Patient (Pt). referred to clinic to establish HIV care. Pt. came to clinic with his girlfriend. Repeat blood rest done in the clinic for him and checked his girlfriend. Lab result shows that he has low CD4 count. His girlfriend tested HIV negative. Medical provider suggested pt. to start on HIV meds. Pt. resisted starting on HIV meds; he does not believe he is HIV+.

1. Explore possible barriers for this Pt?

Traditions & Beliefs I am under a spell-witchcraft Voodoo Sun-Power

My girlfriend/boyfriend, wife/husband is negative so that means it is a bad spirit or witchcraft- People wanting to make money and they put spell/witchcraft on me

Looking for “traditional” medicine; meaning traditional religious cure to exercise or cure the bad spirit

Western vs. Traditional Medicine It differs from culture to culture It has to be visible to the patient:

• Must have symptoms• Weakness• Losing weight• Unable to work or move• To be bed ridden

To Take Meds or Not

Once past the original denial they are now ready and eager to take medications as soon as possible

Confusion If I have it then give me the medications-do not want to wait,

cannot understand the “wait” until the CD4 drops and the Viral Load increases…

Undetectable Viral Load vs. Detectable-what does this mean? Either I have it or I do not have it…

Important to stress that Undetectable does not mean Cured!

Financial Constraints Financial constraints have been found to be

a barrier to care for African born trying to access care: Costs associated with treatment, not

reimbursable by medical insurance Lack of private medical insurance Cost associated with child care services Access to reliable means of transportation

Cont. Financial Constraints

Burden of helping family back home

Sending money back home is a priority and will cause refugees and immigrants to neglect their own health needs.

Confidentiality Given the size of the community people are VERY

concerned regarding confidentiality

Avoid as much as possible to be seen at the clinic, especially if they see someone from the same country or their same origin

They suffer due to lack of cultural and or emotional support

Four Types of Stigma Reduction Intervention Methods

1. Information-based Approaches

2. Coping Skills Approaches

3. Counseling Approaches

4. Contact with Affected People

Source: Brown, L., Trujillo, L., & Macintyre, K. (August 2001) Interventions to Reduce HIV/AIDS Stigma: What Have We Learned?

1. Information-Based Approaches Information-based approaches focus on disseminating

information: At multiple levels Using various mediums of communication To reach a variety of audiences Appropriate languages Ethnic, gender, age appropriate

Examples:flyers, ads, information packets, and/or

presentations to community based organizations (e.g., schools)

2. Coping Skill Acquisition Designed to reduce negative attitudes directed at

PLWH/A

Provide techniques and tools for coping

Exercises such as role-playing to act out various confrontational situations, group discussions have been found to reduce negative perceptions directed at PLWH/A

Coping with Illness & Living Well Denial

For some people this may take for a year or more before they accept the diagnosis.

Once they get past the denial process and established HIV care they engage in medical care.

Patients gain hope (and weight) and think of family and of having children once they start feeling well

Strengths Perspective

Family Children Future plan Hope Coping skills Religious belief

3. Counseling Approaches

Counseling approaches have been utilized with: The target of HIV/AIDS stigma (PLWH/A ) The perpetrators of stigma

In counseling PLWH/A, the focus is on building coping

and conflict resolution skills In counseling perpetrators of stigma the focus is to:

Provide information Defuse potential volatile situations

4. Contact with Affected People

Infected individuals disclose their seropositive status to members of a community and interact in a way that provides information and allows the audience to interact with the individual

By giving a “face and voice” to PLWH/A, contact interventions often are an effective tool for reducing stigma

Summary

HIV in African Immigrants differs from other groups in the United States.

Cultural considerations are important for building rapport.

There are several barriers that prevent African Immigrants from receiving the care that they need.

The impact of HIV/AIDS stigma on accessing care.

Resources AARTH Ministry Seattle, WA; www.aarth.org

Ethnomed www.ethomed.org

Hearts of Angels for Health-Sudan Initiative (HAH-S), Seattle WA; www.hah-s.org

lliuliuk Family Health Services, Dutch Harbor Unalaska 907-581-1201

Northwest AIDS Education and Training Center, University of Washington Seattle, WA; http://depts.washington.edu/nwaetc/

National Minority AIDS Council: HIV/AIDS Stigma Program; www.nmac.gov

Harborview Medical Center: Community House calls program Bria Chakofsky-Lewy 206-744-9256; bria@u.washington.edu