Report from Kosova—Year 2—The Kosovar Family Professional Education Collaboration (KFPEC)

By Ellen Pulleyblank Coffey

My last trip to Kosova was in December. It was my third visit as a member of the KFPEC team and the trip came soon enough after September 11^th for me to feel anxious about leaving the US. I went with James Griffith (Project Co-Director of Training). We met in Washington D.C., and before we got on our plane the entire airport was evacuated. Many hours later, when we arrived in Prishtina we were kept out in the cold by new security measures that made it necessary for each planes' passengers to enter the airport one plane at a time. When we finally got through, we were warmly greeted by Shqipe Ukshini, the Kosovar training director. As with everyone we saw that trip she hugged us and expressed her grief and condolences for the losses that we had all experienced on September 11^th. At the time, I felt safer in Kosova than I had in the US.

Our trip followed a trip to Kosova in November by Steve Weine (from the University of Chicago). As the American Research and Services Co-Director, Steve had traveled to Kosova in order to set up the administrative structure of this year's project, called "Services Based Training (SBT) for Kosovar Community Mental Health and Prevention." The project is funded by the Jewish Coalition for Kosovo Relief and Assistance. The overall aim of this project is to collaboratively support the development of the community-based mental health and preventive service capacities of Kosovar professionals, community workers and other groups working in the emerging mental health system. This service delivery system builds upon the work of the KFPEC over the past 18 months. Here's an edited version of how Steve described the project following his November trip:

The regional community mental health centers are beginning to open as planned, and are also receiving support from multiple international sources. The centers in Gjakova and Ferizaj are open. One of the challenges faced by the centers is how to build family-focused and community-based services at those centers. That is again where our initiative comes in. So for example, they have outpatient services and a day program. Our initiative will, in effect, be organizing multi-family support and education groups for families in the community who are providing care for the chronically mentally ill. We will also be working on building networks of helping professionals, community helpers, and ordinary families that connect those centers with persons and groups in their communities.

We are starting with chronically mentally ill because this has been identified by the Kosovars as an area of urgent need. For example, there is intense political pressure upon Ferid Agani (Administrative Director of the project and Director of Mental Health Services in Kosovo) and other leaders to solve the problem of chronically mentally ill. Ferid has made the strategic decision not to build a large chronic hospital, but instead to invest in community services and acute wards. If we are able to help to build those community services and networks, then in a subsequent stage, we would plan to address other priority needs, such as those concerning youth.

In December, Griff and I went to develop a plan for how the KFPEC's ongoing training and consultation could support this project. We arrived to find the Prishtina SBT teams enthusiastic and confident about resources that they bring to the project. They requested training in how to become trainers and supervisors of the community mental health teams in this new phase of their work with our American team.

As was the case with all of the previous trips to Kosova, our plans were formed with flexibility in mind, so that we could better respond to what was happening while during our stay. Family concerns, religious events and social relationships were woven through our time there, with the necessary shifting priorities between work and family (a major part of my learning from the project has been the result of this continuing necessity to "go with the flow"). Our visit fell upon Bayaram, the ending of Ramadan, on December 16, which meant our project work needed coordination with responsibilities for religious observances and community hospitality in project members' homes. Unrelated to the Bayaram observances, but parallel in significance, Afrim Blyta's mother died on December 13. Afrim is one of the leaders of the Kosovar team, and the death of his mother meant that the Kosovar team members were required, appropriately, to be present to assist with the funeral and needs of his family. We were also invited to attend the funeral and visit the family. Our ability to keep our plans flexible served us well in other situations too. It snowed throughout the trip, resulting in transportation difficulties and an absence of electrical power for most of the hours of each day. Due to the weather, the Gjakova team arrived two hours late on December 14, and, when the team did eventually arrive, due to the Bayaram observances it did so absent its female team members. One other event had a significant impact on the training. One of the Gjakova nurses was beaten by a patient the night before she was to come for our meeting and was raced to the hospital in Prishtina for emergency neurosurgery. The team members present spent some of the training time visiting her in the hospital. Despite the number and variety of these constraining factors, the major objectives for our consultations were met. Here is a summary taken from our trip report of some of the ideas developed during our trip that will inform the project. :

1. Gjakova and Prishtina (where the project has been located for the past 18 months) represent distinctly different Kosovar subcultures. Gjakovans traditionally have been regarded as better educated and more successful in business than others in Kosova. We were told that Gjakovans follow structured social practices organized around status and an implicit sense of superiority in regard to other groups in the country. They tend to stick together and with less openness to outsiders or outside influences. With this cultural template it was not surprising to learn that the Gjakova clinicians have had mixed reactions to the project. Initially the Gjakova clinicians objected to the lack of payment for their work with the project. The Kosovar project leaders however, felt that they were able to address these concerns and that the team from Gjakova had become more interested in the project. In fact, although only three Gjakova clinicians were initially sought, all eleven nurses signed up as interested in participating.

2. The Homeless Mentally Ill—The Kosovars give a different meaning to "homeless" than do Americans, in that they have thus far refused to permit mentally-ill patients without homes to live on the streets. Rather, these patients, most of whom have diagnoses of schizophrenia, are admitted repeatedly as "revolving door" cases or are hospitalized chronically in about 120 acute psychiatric beds (approximately 72 Prishtina, 20 Gjakova, 15 Peye, 12 Prizren), which has compromised the capacity of the mental health system to respond to other acutely psychotic or behaviorally-disturbed patients. The typical patient whom Kosovar clinicians hope to involve in the project is either:

• A psychotic patient whose nuclear family cannot manage him or her, and quickly returns the patient to the hospital after discharge. Some patients have been hospitalized continuously for months at a time.
• A psychotic patient with no nuclear family available who must be discharged to the care of a relative. The relative's family then objects to the burden of the patient. For example, the family of one woman emigrated to Canada, such that she was discharged to the care of her uncle, her only relative. He returned two days later to the hospital reporting that her presence in the home was too damaging to the relationships among his family members.

There are few patients who have no family members or relatives who might be potentially involved in living arrangements.

3. Foster Families—Kosovar clinicians described the notion of "foster family" as a poor fit for their culture in the sense that the term is often used in the US. They explained that it generally has not been acceptable for a person to live in a household if that person does not have family kinship, particularly if there are children in the family and if the foster person is an adult male. It thus would be very unusual for non-blood relatives to live in the same house. This does happen in rare cases with children and elderly people, but is the exception rather than the rule. Foster care for an adult chronically mentally ill person would thus be extremely unusual.

The Prishtina STB have introduced the term "hospitalized homeless" to describe the focus of their concern. As noted above, these patients either live for long periods of time in the hospital or go in and out of the hospital. The criterion of "six months out of the family" may need to be made more flexible to include patients who are repeatedly discharged and readmitted during a span of six months, rather than only those who have not reentered a household. At present, several families for the Gjakova team have been identified, but the pace of the project, complicated by the holidays, means that actual interviewing will not take place until January.

3. The Emerging Clinical Work with Families in Kosova—The belief that every family member has a place in the family that deserves respect is central to the emerging clinical work by Kosovar clinicians. This means that every family member must be thought of as someone's child and in this way deserving of care. This belief is grounded in Kosovar traditions and is important for the teaching of values to children currently living in the family. The clinical work taught to trainees by Shqipe Ukshini (Kosovar Project Training Co-Director) revitalizes hope and purpose in families by reminding them of their cultural heritage and the obligations of their traditions. This gives rise to a structural family therapy whose central theme is that "each family member has a position in the family that deserves respect." This should include members with mental illnesses. While this description emphasizes how the project supports traditional values, there are indications that family values are diverse and clearly changing and narrative perspectives are relevant here. At some point, we need to bring these issues into the forefront of our discussions. As elsewhere, patients in mental health may lead the wave of societal change.

Griff and Corky Becker (member of the KPFEC) have just returned from a third trip. The focus of their trip was to train and consult with the team of professionals in Prishtina who trained with us last year and are now training the mental health teams in the two outlying community mental health centers of Gjakova and Ferizaj. .They also visited the community mental health centers, met with families who are now in the project and met with community leaders. To give you a flavor of their trip I am including here some of their notes about their experiences:

Notes from Griff:

We met for two full days on Saturday and Sunday with the two SBT teams (Gjakova and Ferizaj) each with two psychiatry residents and a nurse, together with Jusuf Ulaj (Project Services Co-Director) and Shqipe Ukshini (Kosovar Project Training Co-Director). The Gjakova team has signed contracts with 8 families, and the Ferizaj team (who just got started) with 2. Our model is for the Prishtina teams to teach and supervise the nurse community teams at the mental health centers. The approach we decided last time was to do this by conducting this phase of the project by two Prishtina SBT team members and two nurses who conduct the family assessments, psycho education, and therapies as a joint treatment team. This seems to have been a good approach, with the nurses showing engagement and curiosity about the learning. We haven't encountered supervisory strains that we thought could arise between the Prishtina supervisors and the community teams. We also spent substantial time on assessment methods, each for the families, the community teams, and the supervising SBT teams, and on inclusion criteria for the families. We originally were including patients with at least 2–3 hospitalizations within 6 months and who were disconnected from their families. The community clinicians are worried about those in the community who are not hospitalized but live isolated under poor conditions and are disconnected from families. A man in Ferizaj, for example, lives in a little room with no contact with relatives except when they leave some food for him from a distance. We decided to include those.

The Monday visit to Gjakova consisted of a home visit with the team and a 3 hour meeting, followed by group lunch, with 30 community representatives and mental health clinicians. This included the head Imam for the 13 mosques in the city, a Catholic nun nurse, the municipal director of health, the primary school superintendent, another school teacher, two police representatives, a primary care physician, and others. The Ferizaj day on Wednesday was similar, with a two hour community meeting then lunch with 26 mental health clinicians and community representatives. Our home visits were important for emphasizing the poverty under which families try to meet obligations to mentally ill relatives while caring for their primary families, such as multiple adult family members (in one case, two with psychoses) living in one room. The WHO Mental Health Officer is enthusiastic in supporting the project, seeing it is as developing a model that would be alternative to building a residential facility for individual patients.

In the Tuesday didactics and workshop, I focused on family-centered treatment of schizophrenia during the re-entry first year after hospitalization, and Corky focused on building resilience of children living in the home with a psychotic parent. Much of the workshop time was spent walking through construction of a family psycho education program for one of the nurse's cases she presented. There is much cultural stigma here around mental illness and genetics, in that families sometimes hide a psychotic member because community awareness may mean their sons and daughters will not be able to marry.

Notes from Corky Becker:

The two major events of Wednesday were a community meeting and a family meeting in Ferizaj. After introductions, names and positions, and a brief introduction to the project by Jusuf and Griff, I spoke about the need for a better understanding of mental illness and psychosis, and the possibility of some collaboration with people in the community. I invited them to speak about their experiences and perspectives. The central themes in the stories they told reinforced the impression we had from Tuesday's workshop, that people do not understand psychosis and schizophrenia, and they hide someone who is ill, isolate themselves, and are judged negatively in the community. There is a lot of fear. People make fun of others who have disabilities. The ill person is likely to go to the Hoxha (traditional religious healer) before getting help from the mental health center because of the stigma of coming to the center: eg, "Don't go to the center, or you won't be married."

There was a lot of momentum in the conversation toward public health education, using the media, TV, radio, literature, booklets: broad communication to change the views of the public. Education, of course, is one thing, changing beliefs is another. When we asked if there were specific areas where collaboration might be helpful, they mentioned neighbors, the police, the schools, joining with NGOs with similar goals to educate people. People responded from their own points of view and not all participants in the discussion understood our project, but they used this as a forum for speaking about broad needs for education about many public health issues. There was a lot of enthusiasm for "the strength of working together" clearly a cultural value which supports a multi-disciplinary approach.

After a lunch with thirty people from the meeting, we saw a family. This was very challenging. In both families that we saw I was impressed with the possibility that the session could create relapse, or an episode of decompensation. Bringing people together is a good way of seeing the family's dilemmas, if one can navigate the delicate territory of touching too closely the issues that excessively distress family members.

The next planned visit of our team members to Kosova will be on May 3^rd. In the beginning of April, in Chicago, the leaders of the Kosovar team will meet with AFTA members of the project, members of the AFTA Human Rights Committee and representatives of the University of Chicago, in order to form an Advisory Board for the Kosovar project. This first meeting of the Advisory Board will hopefully set the course for future collaborations between AFTA members and our colleagues in Kosova.

Ellen Pulleyblank Coffey Ph.D. is a clinical psychologist in private practice in Berkeley, California. She directs the Community Solutions project that focuses on research and development of family centered community based mental health services both here and abroad. She is an adjunct faculty member at The Wright Institute and a Research Associate at The Center for Innovative Practice at Smith College.