1. Grief & Culture

2. Our Journey Today  Defining Grief  Consideration of Culture  The Barrier is Not Culture  Communication & Preparation  Walk Beside the Family  Cultural Assessment Questions

3. Defining Grief

4. “Grieving is a necessary passage and a difficult transition to finally letting go of sorrow - it is not a permanent rest stop.” (Dodinsky)

5. What is Grief?  Comes from the Latin word “gravis” meaning “heavy”  The process of experiencing the psychological, behavioral, social, and physical response to the perception of loss (Rando, 2000)

6. Grief  Is a natural reaction to loss  Is a healthy emotional response for dealing with loss  Acknowledges, honors & expresses feelings connected to loss  Grief can occur in response to loss of anything one values or is attached to

7. Grief is also…  Complex and individualized phenomenon  Each individual and family grieve in their own way  Strongly influenced by culture, experiences and role models

8. Consideration of Culture

9. Culture is… Shared values, traditions, norms, customs, teachings, arts, history, folklore, and institutions of a group of people. Shared values, traditions, norms, customs, teachings, arts, history, folklore, and institutions of a group of people.

10. Consider culture because it…  Helps us to understand the values, attitudes and behaviors of others  Helps us to avoid stereotypes and biases that undermine our efforts  Plays critical role in development and delivery of services responsive to needs of recipient

11. Our Challenge How do you as professionals work with patients and families who are from diverse cultures and who may have perspectives different from your own?

12. The Barrier Is Not Culture – It Is Us

13. The Personal  We have our own…  Values, attitudes and behaviors  Life experiences  Level of stress  Stereotypes and biases

14. Personal Introspection  Need for understanding culture and how it relates to our approach to service delivery  Need to possess warmth, empathy & genuineness  Need for respect and compassion for those different than one’s self

15. Beliefs  Develop awareness of our own beliefs  Recognize people from other cultures may not share these same beliefs  Challenge assumptions you may have of a person’s cultural beliefs and customs

16.  Helps families express their thoughts and feelings  Facilitates exploration of alternatives  Provides information to make informed choices  Recognizes factors affecting people’s ability to choose among viable alternatives

17.  Plays critical role in development & delivery of services responsive to needs of families  Influences…  How we listen  What we hear  How we process information  How we make decisions  How we carry them out

18. What are some of the values, beliefs, attitudes, behaviors, life experiences, levels of stress, stereotypes and biases I feel and bring to the work with families? Ask Yourself …

19. Communication & Preparation

20. Cultural Dialoguing  Inquire  Integrate multiple perspectives  Uncover & examine assumptions  Unfold shared meaning

21. Ask Yourself… When talking with someone who has a different opinion than me, I tend to:  Discuss (debate)  Dialogue

22. Guidelines  Avoid ethnocentrism  Suspend judgments  Make no assumptions  Listen towards understanding  Listen to needs, views & concerns  Inquire out of genuine curiosity  Reflect

23. Walk Beside the Family

24. Do Not Assume Do not assume a person who belongs to a particular cultural group follows the culture’s usual practices and beliefs. Always ask about the individual’s beliefs, practices, and preferences.

25. Language  Be aware of need for interpreter  If family speaks English but it is their second language, then ask if they would like an interpreter  Use an interpreter so family member does not need to interpret  Could prove embarrassing or upsetting to translate  Culture may impact translation

26. Listen  Listen, listen, listen  Do not always need to say something  Allow for silences  Listen in nonjudgmental and accepting manner  Do not offer solutions or try to “fix” person’s feelings  Ask open-ended questions  Attend to nonverbal communication

27. Communicate  If family talk about loss, do not avoid or change subject  Accept you cannot take away the family’s pain; they need to work through it & this takes time  Provide reassurance and affirm the normalcy of their grief reactions

28. Honor Feelings  Be open to the family’s emotions & thoughts  Do not use phrases such as “I know exactly how you feel” or “I can imagine how you are feeling; instead, “I cannot begin to imagine how you are feeling”

29. Honor Word Choice  Use of different phrases: pay attention and use  Cross the river  Walk on  Passing to other side  Going to the spirit world

30. Touch Ask before touching (i.e., holding a hand or giving a hug) as touch may not be appropriate in some cultures.

31. Eye Contact Pay attention to and honor the type of eye contact that the family uses.

32. Cultural Assessment Questions (Adapted from Lum & Arnold, 2009)

33. Beginning the Discussion “In regard to organ donation, are there any special customs or beliefs that I should know about as we begin talking together?”

34. Who Should be Involved?  Would you like me to speak with you alone or you and your family?

35. Decision-Making Communal or Individualistic?  Do you prefer to make medical decisions or would you prefer that others in your family or community make them for or with you?

36. Practices and/or Restrictions  Are there aspects of medical care that you wish to forgo or have withheld because of your cultural beliefs?  Is anything discouraged or forbidden?

37. Practices and/or Restrictions  Are there specific practices or restrictions that are important to honor at the time of death or afterwards?

38. Unique Cultural Values  What concerns do you have about organ donation?  Are there things that are important to you or your family that I should know about?

39. Unique Cultural Values  Is there anything that would be helpful for me to know about how you and your family view organ donation?  Are there cultural beliefs, practices, or preferences that I should be aware of?

40. Dedication This work is dedicated to the terminally ill elders who sacrificed precious hours of their remaining days to share their dying experiences and to teach me about dying. After all...how can we, the living, teach others about dying? We cannot. The dying are our teachers and we the pupils. I am deeply grateful to have been their pupil.

41. Tracy Schroepfer University of Wisconsin-Madison tschroepfer@wisc.edu Contact Information