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

1. The Impact of HIV among East Africans Living in the United States Meti Duressa, MSW African Americans Reach & Teach Health Ministry Northwest AIDS Education & Training Center (206) 850-2070 ~ www.aarth.org AARTH

2. 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

3. East African Countries

4. Sudan is the largest country in Africa

5. 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

6. Diversity • 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

7. 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”

8. Hospitality • 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

9. 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

10. 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

11. Sudanese 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

12. Somalia

13. 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

14. 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

15. 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.

16. 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?”

18. 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

19. 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

20. ETHIOPIA

21. 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

23. 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

24. 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

25. 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

26. 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

27. Common Cultural Practice • 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.

28. 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

29. HIV/AIDS Stigma as a Barrier to Care and Services

30. Activity 1: What Does Stigma Feel Like? 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

31. Stigma • Stigma perpetuates denial and silence • Stigma prevents acknowledgment of problem and care-seeking • Stigma is associated with shame • Stigma prevents dissemination of accurate information

32. Self-Stigmatization 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

33. HIV/AIDS related stigma impacts: • Testing and counseling seeking behavior • Disclosure of seropositive status • Access to care

34. 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

35. 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

36. Common Reasons for Not Disclosing HIV-Positive Status • Fear of rejection • Fear of being ostracized by family/friends • Fear of loss of employment • Fear of physical violence • Fear of deportation

37. 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

38. Lack of HIV/AIDS Information • Prevention vs. treatment • Ignorance • Some cannot read • Lack of trust • It cannot happen to me

39. Women are a strong support System for those exposed to HIV/AIDS Responsibility of raising grandchildren for those lost their parents to AIDS

40. 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

41. 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…” • Who view HIV as a death sentence experience feelings of hopelessness, despair, and fears of dying

42. Harmful traditions Female genital circumcision Abduction Forced marriage Underage marriage Exposes to HIV/AIDS

43. 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 attention • Witches/ traditional doctors plays role on hurting young girls and children

44. Respecting women’s rights would prevent HIV/AIDS

45. 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

46. 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?

47. 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

48. 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

49. 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!

50. 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