A group of 10 adults and 12 children arrive at the outpatient clinic for David, who is being seen for work-hardening. The family members converge upon the therapist and demand to see a “senior doctor.” All at once, the adults begin to insist that David be given the “little yellow pill” that helped another relative who had shoulder pain. The OT, overwhelmed by the situation, asks one of the adults to tell her what the problem is and how she can help. Family members say David, age 50, has been having worsening pain in his shoulder for four hours. Each time the OT asks a question, several of the adults answer. She begins to feel intimidated and helpless and isn’t sure how to manage the situation. The therapist excuses herself to speak privately with the clinic director.

Would you know how to approach this situation involving a Romani family in a culturally sensitive way?

As U.S. society has become more culturally diverse, caregivers have expressed interest in learning how to provide culturally congruent care to patients and their families. Understanding and integrating cultural values, beliefs, and practices into the care plan increases patient and family satisfaction and improves healthcare outcomes. This module introduces the Romani (Gypsy) people; presents common Romani values, beliefs, and practices related to healthcare; and provides insights into the promotion of culturally competent care so that clinicians can better care for this patient population.

One Size Doesn’t Fit All

Cultural beliefs and practices vary within with every cultural group, including the Romani people. Information in this module represents the common practices of the Romani people. As with most cultural groups, there are individual, group, and regional differences in the way people express cultural values. Providers can use generalizations about cultural practices as a starting point for patient and family assessment and integrate their findings into the plan of care as indicated. Interventions were developed by using Madeleine Leininger’s Sunrise Enabler to Discover Culture Care, a framework from which healthcare professionals consider cultural beliefs, values, and practices to develop a plan of care that can preserve or maintain traditional practices, modify traditional practices, or repattern traditional practices.¹

A Look Back

The Roma are a geographically and ethnically diverse group of people who trace their origins to the Indian subcontinent. About 1,000 years ago, the Roma began migrating from northern India to Europe. Other great migrations occurred in the 14th century, from southwest Asia to Europe, and in the early 20th century, from Europe to the Americas.^1-4

No one knows for sure why the Roma began to be called Gypsies, a term the Romani people consider an insult. Most Romani people use the word Roma to describe the group as a whole and Romani as an adjective.^1,3 The term Roma does not refer to those of Romanian or Roman descent; Rom refers to man and Roma to people.³ The Roma call outsiders (non-Roma) Gadje.^1,3,4

The Romani language varies depending upon the geographical origin of the tribe or clan. Until recently, there has not been a universal written Romani language; however, the Linguistic Commission of the International Romani Union is working to develop a standardized dialect and written language.²

The Roma typically adopt the dominant religion of the country in which they are living.^1,2 There are Catholic, Protestant, Eastern Orthodox, Hindu, and Muslim Romani. It’s believed that many of the cultural practices of the Roma have been adapted from traditional religious practices of Roman Catholics, Muslims, and Jews.^1,2,5

The Romani population in the United States is estimated at 200,000 to 1 million, with most Roma living in larger cities, including Chicago, San Francisco, Houston, Seattle, Atlanta, and Boston.^1-4,6 Discrepancies in population estimates are due to the fact that Roma rarely participate in U.S. Census surveys and often identify themselves as being of Mexican, Southern European, or American Indian origin. Roma have experienced discrimination and stereotyping for many generations and hope that by identifying themselves as from other ethnic groups they will avoid discrimination.⁵ Common stereotypes include a romanticized view of the Roma as free spirits and a negative view that they are thieves and cannot be trusted.⁵

A Nomadic Life

The Roma are traditionally a nomadic people. Historically, the Roma have migrated from one country to another (or within regions of the same country) to avoid discrimination. In the modern world, the Roma see a nomadic lifestyle as a cultural norm and as part of their cultural tradition. Although many Romani people have established themselves in urban and suburban communities in the United States, traveling for work remains commonplace.^2,3,7-9

Healthcare providers should consider a patient’s and family’s migratory lifestyle when planning after care for Romani patients. Providers can work with the patient and family to plan follow-up care that is realistic and attainable. You may need to research out-of-state resources if the family plans to travel.

Family First

Loyalty to the family and community (also referred to as the tribe and clan) is the most important universal value in Romani culture.^1-5 During hospitalization, many members of the extended family will want to be with the patient at all times. Up to 100 family members may be present when a patient is hospitalized.⁵ The number increases with the seriousness of the health problem. Understanding Romani family structure and the importance of family presence during hospitalization will help providers plan more effective patient interventions.

Being present with sick family members is a sign of respect and a duty.^1-3,5 Try to provide a private room for patients and a visiting room for family members, who will want to remain with the patient — or at least on the hospital premises — while he or she is hospitalized and participating in rehabilitation activities. Often family members will want to participate in the care of the patient. Negotiate this with family members, allowing them to participate as appropriate. Provide education and equipment as indicated. For example, allowing the family to assist the patient during morning ADLs and help with IADLs will increase the satisfaction of both patient and family. The patient feels cared for, family members know they are helping the patient, and rehabilitation goals can be facilitated.

Keeping in Contact

When a Romani patient is hospitalized, ask the patient and the nuclear family to identify one to two contact people. The family will typically choose family decision makers. This supports the concept that family input is important in developing the plan of care. These contacts will be the people to whom you provide daily updates. Ask the family to inform the rest of the community of this arrangement, explaining that you cannot communicate with more than two members of the family without it interfering with your care of the family member and other patients.

Several authors note that Romani family members have the reputation of being “demanding” and “aggressive” in the hospital.^2,3,4,5 Family members may insist that their loved one be cared for by older, well-known physicians or therapists. They may also demand a specific treatment or type of equipment.⁴ Clearly explain how clinical decisions are made in your organization and how to interact with staff. Ask the contact people to keep a list of questions to give you once or twice per shift. If the family exhibits unacceptable behaviors, talk directly with those who are acting inappropriately and follow up with the contact people, stressing your commitment to care for the patient.

Distrust of Outside World

The Romani people have faced discrimination for hundreds of years. As many as 500,000 perished in Nazi concentration camps during World War II. After the war, the Roma faced increasing discrimination in eastern European countries.^2,7,10-12 Blame for economic hardships was directed at the Roma, forcing them to leave countries where they had lived for many generations. In the United States, the Roma were initially the focus of curiosity and interest. Americans were captivated by their traditional flowing clothing, fortune-telling, and nomadic lifestyle. But since the Roma tended not to integrate into the community in which they lived, suspicion began to grow. Reports of thievery and outlandish tales about the customs and rituals of the Roma led to harassment, persecution, and even exile.^2,3,5,13,14

In healthcare settings, the Roma have faced discrimination because of similar misconceptions. According to several studies, healthcare workers often see Romani as people who “steal, lie, and do not pay their bills because of their migratory lifestyle.”⁵

To preserve their rich cultural heritage, the Roma are protective of their own, preferring to interact with other Romani people and isolate themselves from the Gadje world.^4-6 Roma see the outside world as hostile and threatening.^1-3,5 The world of the Gadje is “a corrupt one, in which human exploitation is the rule,” with the misery the Roma have experienced attributable to Gadje society, a Romani study participant is quoted as saying.³ But generally Romani people cannot avoid interaction with Gadje. Romani businesses rely on Gadje patronage, Romani children attend Gadje schools, and Romani women shop at Gadje stores. Because they need to associate with mainstream institutions, the Roma have learned to interact with Gadje while protecting against them.

Increasing Trust

To increase a sense of trust when working with Romani patients and families, remain consistent, reliable, and clear. Ensure that therapeutic goals address issues that are important to the patient and family. Review the plan of care in shift report and stress to all staff the importance of closely following the plan as written. Be a reliable caregiver: Let the patient and family know when you will be in the room and how to reach you on the floor. Either inform them of when you will do specific interventions or negotiate a time with them. Consider using an interpreter if the patient’s first language is not English.^2,3,5 Since illiteracy is common in the Romani population, provide a variety of educational materials, including videos, photos, pictures, and diagrams, as well as written information. Respect cultural traditions and taboos when caring for Romani patients and their families and consider addressing Romani cultural traditions and taboos in the plan of care as applicable.

Clean and Unclean

Romani rules about hygiene and cleanliness are based upon the concept of marimé, or impurity.^1-3,5,13 This concept includes ideas of physical impurity or uncleanliness as well as moral impurity. For the body to be clean, the top and bottom halves of the body must be kept separate. The bottom of the body, from the navel down, is considered unclean. Secretions from the bottom of the body are thought to be dirty and shameful. The top of the body is clean, and secretions from the top of the body are not considered unclean or shameful. For example, sputum is considered to have curative properties, and Roma use it to clean cuts and scratches.¹ The Romani believe serious illness can occur when a Romani person fails to keep sections of the body separate.

To respect a Romani patient’s beliefs about cleanliness, be diligent about caring for the top and bottom of the patient’s body separately. When conducting ADL training with a Romani patient, bring two sets of soap and towels to the room. Allow the patient to wash below the navel with one bar of soap and one set of towels and to use a fresh set when washing the top of his or her body. If you are using a basin, use two separate basins or thoroughly wash the basin before expecting the patient to move to the other part of his or her body. Make sure to wash your hands before you touch a patient or family member. If you are evaluating a patient, wash your hands after you have touched the lower part of the patient’s body. Since the lower part of the body is considered unclean and shameful, be sure to provide privacy during evaluations and use draping for modesty.⁵

Ask female patients whether they would like a chaperone during exams; many women will want a family member to chaperone rather than a healthcare worker they do not know.^1,3,5 Allow Romani patients to wear their own bedclothes when possible. It is humiliating for a Romani patient to wear a hospital gown and expose his or her legs.¹ During menstruation, Romani women are considered especially unclean.² A menstruating woman is not supposed to walk in front of men, prepare meals, or touch certain items in the home.²

Since the Roma are unsure whether or not a Gadje is clean, they take care to reduce physical contact with anything that a Gadje has touched. Roma believe that food prepared by Gadje is marimé, but the caregiver can reduce fear of contamination by offering food on disposable plates and providing wrapped plastic utensils.^1,5,13 Or order finger foods so that the patient doesn’t have to use utensils. If the patient is not on a dietary restriction, encourage the family to bring food and beverages for the patient or consider incorporating meal prep into rehab sessions.

Birth Rituals

When a Romani woman becomes pregnant, Roma observe specific cultural traditions to ensure a healthy delivery.^1-3,5 Once a woman reveals she is pregnant, she is considered to be impure and remains in isolation until the birth of the child.² During the birth, the woman is moved from her home. Since childbirth is considered marimé, many patients prefer to give birth in the hospital to avoid causing their own homes to become unclean.³ Other rites that are followed during delivery and before baptism may include:^1,2

• The family ties and unties knots of string during the delivery so that the umbilical cord will not become knotted.
• The new mother is not allowed to be seen by men other than her husband.
• The baby’s name cannot be said out loud. (The caregiver can ask the mother and father how they would like staff to address the baby.)
• The baby cannot be photographed and may not be able to have his or her face shown in public.
• The baby is wrapped in swaddling cloth that has drops of the father’s blood on it.
• The baby is covered with a piece of the father’s clothing.
• The new mother places the baby on the ground, and the father picks up the baby and ties a red string around his or her neck.

These rituals are performed to provide protection for the baby and to acknowledge paternity.³

Allow for privacy so the family can practice birth rituals that are important to them. Incorporate the family’s wishes into the plan of care and ensure that the plan is communicated clearly between shifts and that these habits, routines, and rituals are understood as valued occupations associated with the role of parenting.

Caregivers working in the community should remember that a Romani woman is considered impure during her pregnancy and that healthcare providers should observe cultural traditions when in a Romani home.

Death Rituals

When a Romani patient is dying, the family begins engaging in a series of culturally bound rituals.^1,2,3,5 As in illness, family and community presence is obligatory at death. At the time of death, the family will want to light a candle and place it by the window in the patient’s room.^2,3 Roma believe that the candle will light the way for the dead relative’s soul to ascend to heaven.^2,3 The family displays intense grief, including loud wailing and shouting, scratching their faces, pulling their hair, or throwing themselves onto the floor.^3,5 Mirrors may be covered, and clothing may be torn as a sign of mourning.^2,5 The name of the deceased isn’t spoken aloud as it is believed that saying the name invites the person to haunt the living.⁵

Try to provide a private room when death appears imminent. If this is not possible, designating a separate room for the family will help ensure that loud grieving will not upset other patients. If you have a large Romani population in your community, consider asking your administration to invest in several electric candles that can be used when a patient dies. This eliminates the safety issues of having an open flame in the hospital and supports the cultural traditions of the family. Refrain from saying the patient’s name when interacting with the family.

A Way of Life

Cultural traditions are a way of life for the Romani people. The Roma have been able to live in the Gadje world while closely maintaining their cultural norms. Understanding and honoring cultural values, beliefs, and practices in the healthcare setting increases the likelihood that Romani patients will have a positive impression of the experience.

Work with the patient and family to negotiate care if you cannot preserve certain cultural traditions in the hospital. Maintain a respectful approach and provide a cogent rationale when suggesting a tradition or taboo cannot be preserved.

Since we live and work in a multicultural society, it is no longer enough to be culturally sensitive when providing care. Instead, we must learn to integrate traditional values, beliefs, and practices into care plans to deliver more effective care to patients and families from diverse cultures.