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Child Advocacy International and Centre for Family Research, Cambridge University, UK
Department of Computer Science, Computer Laboratory, Cambridge University
Department of Neuropsychiatry, University Clinical Centre, Prishtina, Kosovo
Correspondence: Lynne Jones, Centre for Family Research, Free School Lane, Cambridge CB2 3RF, UK
Declaration of interest None. Funding details in Acknowledgements.
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ABSTRACT |
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 TOP ABSTRACT INTRODUCTIONMETHODRESULTSDISCUSSIONClinical Implications and...ACKNOWLEDGMENTSREFERENCES |
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Aims To describe the creation of a child and adolescent mental health service (CAMHS) in Kosovo after the military conflict ended in 1999, and to establishthe range of problems and diagnoses that presented.
Method Data were collected on 559 patients over 2 years, including their referring problems and diagnoses.
Results Stress-related disorders constituted only a fifth of the case-load in year 1. A substantial number of patients were symptom-free but attended because they had been exposed to a traumatic event, and believed it might make them ill. Non-organic enuresis and learning disability were the most common diagnoses in year 2. Many patients had a complex mix of social and psychological difficulties that did not fit conventional diagnostic categories.
Conclusions Mental health services that only address traumatic stress may fail to meet the needs of war-affected children. A comprehensive, culturally appropriate CAMHS is needed to address a wide range of problems including learning disability. It should be developed through local actors, and build on existing local infrastructure. Services can also have an educational role in ‘depathologising’ normative responses.
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INTRODUCTION |
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TOPABSTRACTINTRODUCTIONMETHODRESULTSDISCUSSIONClinical Implications and...ACKNOWLEDGMENTSREFERENCES |
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METHOD |
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TOPABSTRACTINTRODUCTIONMETHODRESULTSDISCUSSIONClinical Implications and...ACKNOWLEDGMENTSREFERENCES |
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Historical background
Kosovo, formerly an autonomous province of Yugoslavia, had a population of
2 million, 90% of whom were Albanians. In 1989 the province lost its autonomy
and many Albanians were dismissed from public service jobs. Health care and
medical education were provided through private, usually poorly resourced,
parallel structures (Jones,
1993). Full-scale war began in mid-1998. When NATO air strikes
ended in June 1999, at least 3500 people had been killed and 800 000 expelled
by Yugoslav security services and paramilitary groups
(Human Rights Watch, 2001).
Since then the United Nations Interim Administration Mission in Kosovo (UNMIK)
has administered the province. Albanians returned home and began to come to
terms with the destruction and their personal losses. Many Serbs accompanied
their own security forces as they withdrew from Kosovo. The remaining Serbian
population has found itself in the position of a minority under attack and is
fearful for its own security. Other ethnic communities – Roma, Turks and
Bosniaks – also had difficulties. Inter-ethnic violence has continued to
be a problem.
Mental health needs
Kosovo lacked adequate public health data on mental health needs prior to
the conflict. After the air strikes, rural ‘health houses’
(clinics providing a combination of primary health care and regular specialist
out-patient clinics) reported seeing two or three children with serious
psychological difficulties each day. Many of these children had had
psychological difficulties of some kind prior to the period of conflict.
Approximately 55% of the total population in Kosovo is under 19 years old
(Spiegel & Salama, 1999).
The perinatal mortality rate is 33 per 1000
(Gloeb, 2001), putting it on a
par with the developing rather than the developed world. It is estimated that
25–30% of all children attending primary health care facilities in
developing countries have psychiatric disorders, although less than 20% are
identified (Giel et al,
1981). Even without the effects of conflict and the harsh living
conditions of the previous decade, one might expect a significant number of
children to be in need of mental health services.
Kosovo regards itself as part of western Europe and is culturally complex. It is multi-faith: the largest group being Muslim, many of whom are secular. There are significant Catholic and Orthodox Christian minorities. In urban areas the younger generation have a lifestyle and aspirations similar to their western European counterparts. The rural community espouses values that are more traditional. Throughout the area, the patriarchal extended family is the most significant means of social support.
In the past many children's mental health problems, particularly behavioural disturbance, were seen as primarily the concern of the family. Children with severe disorders were taken to general practitioners or paediatricians. In rural Muslim areas people consulted the local hoxha, a Muslim religious teacher, who for a small donation would provide a specific prayer to be burnt and dissolved in a tea to be taken by the child. Catholic families might also consult their local priest. Neurodevelopmental problems often remained unassessed and untreated. Recent upheavals left many families feeling that their capacity to cope was insufficient for the severity of the problems, while the displacement of large numbers from countryside to city left them without their usual networks of support.
Mental health services
Kosovar psychiatric services, as in the whole of the former Yugoslavia,
concentrated resources on a biological and institutional approach to serious
mental disorder in adults. In the summer of 1999 the health services were in
disarray. Most Serbian doctors chose to leave, or to move to one of the
Serbian enclaves. There were 15 Albanian neuropsychiatrists in the province,
one of whom had a special interest in children. There were no functioning
social services, and only two clinical psychologists. Institutional facilities
were degraded and understaffed. Over the subsequent 2 years, with the
assistance of UNMIK, the university department of neuropsychiatry and the
public psychiatric service were re-established. By 2001 there were 25
residents training in psychiatry. A number of NGOs had set up psychosocial
programmes to provide some training in the identification of psychological
disorders in children, but there was no local service to which children with
problems could be referred. Such programmes gave little attention to serious
psychological difficulties.
Child Advocacy International therefore decided to develop a community-based child and adolescent mental health service, rather than a psychotrauma service. The aim from the outset was to create a sustainable, culturally appropriate service to meet the locally identified mental health needs of children and adolescents throughout Kosovo, and to provide a training base for future specialists, as well as residents in general psychiatry. It was to be integrated with paediatric and primary health care services and with adult psychiatric services, which were also being transformed into community-based services. We wished to attend to severe unaddressed needs and to avoid an overextended role that could arise from treating the whole population as traumatised. Education and support for other health professionals and NGO staff were an essential part of the service.
Setting up the CAMHS
The attraction of high rates of pay and additional training means that NGOs
can recruit the best qualified professionals, draining the public sector but
leaving these staff without employment when funding dries up. To avoid this
pitfall and ensure sustainability, Child Advocacy International negotiated
with UNMIK and the department of neuropsychiatry to second two psychiatry
residents who would work with an expatriate specialist supervisor. They would
remain on hospital contract, and return to hospital posts when their training
was completed. They would then be in a position to embark on the training of
others. Two additional part-time residents and four nurses joined in the
second year on a similar basis.
Clinics were located in primary health care facilities and, initially, in the Child Advocacy International office in Prishtina. This allowed for a more accessible, less stigmatising, community-based service with close connections with primary health care. The residents and nurses made home and school visits as needed. The service was open to children of all ethnic backgrounds up to the age of 18 years and to their parents. We also saw older children in higher education, and adults when no other psychiatrist was available. In each town local health professionals, schools and NGOs were informed of our presence. We advertised the service on local radio by providing talks on children's mental health problems. In the first year, the clinics were located in small towns in two of the most conflict-affected areas and in Prishtina, which had doubled in size because of the displaced population. In the second year, with the expansion of the medical team to four doctors, these two former clinics moved to four main towns in order to be integrated with the overall development of community-based mental health services in Kosovo, and to provide access to the greatest number of people.
The aim was to provide both a clinical service and a training opportunity. Training took the form of supervision and mentoring in the clinics and a regular weekly programme of seminars, lectures and case discussions for all the psychiatry residents. Funding was also used to set up internet access, create a comprehensive library, and provide two residents with the opportunity to study for 1–3 months in the UK. Because the consultant supervisors changed every 3 months, the residents encountered a wide variety of approaches, and engaged in a two-way exchange as to the appropriateness of Western systems of diagnosis and treatment in the Kosovar context.
Collection of data
The clinic contact data were collected on attendance sheets at every
clinic. They included numbers of new appointments, of follow ups and, in the
second year only, of non-attenders. All attending patients and their families
completed a simple data collection sheet regarding biographical data, living
circumstances, education, the source of referral and referring problem. At
discharge the form was completed with ICD–10 diagnosis if any
(World Health Organization,
1992), mode of treatment, number of sessions attended and
disposal. The data were entered on a computer database and audited.
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RESULTS |
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TOPABSTRACTINTRODUCTIONMETHODRESULTSDISCUSSIONClinical Implications and...ACKNOWLEDGMENTSREFERENCES |
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Families brought a wide variety of problems to the clinic (Tables 1 and 2). Table 3 shows these problems defined in terms of ICD–10 diagnoses for years 1 and 2. These two tables illustrate a shift in the pattern both of problems referred and of diagnoses made. In the first year the most common reason for referral was exposure to a traumatic event, even if the child was symptom-free, because NGOs (the most common source of referral of this problem) or families were concerned that there might be future problems. In the second year, as the number of NGOs in Kosovo declined, bedwetting (usually primary enuresis) and behavioural problems became the most common reasons for attendance. Special needs and a variety of neurodevelopmental difficulties also became more significant. Behavioural problems summed up by the term nervoz in Kosovo took the form of irritability, or disobedience and aggression. This was often combined with sleep problems, and was distinguished by parents from fear (frike). Table 2 shows that stress-related disorders were the most common diagnosis in the first year but learning disability and non-organic enures is superseded this in the second. In spite of large numbers presenting with behavioural problems, relatively few children met the criteria for conduct disorders. A substantial number did not warrant any psychiatric diagnosis; in others, behavioural problems were a marker for other difficulties – most commonly mild learning difficulties or mood disturbances.
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The reduction of cases to problem lists or ICD–10 diagnoses does not illustrate this complexity. Once engaged, many families revealed a mix of difficulties that often required social as well as psychological interventions, as the following case vignette illustrates (all vignettes are fictitious but are drawn from real experiences).
Case vignette 1
Four members of this family were killed when they escaped from their
village on a tractor during the war. The youngest daughter, then 7 years old,
witnessed the deaths of her two older sisters, her father and an aunt. The
mother brought this daughter, now 9, to the clinic because she was refusing
school, bedwetting, irritable, crying without reason and having nightmares
about her dead relatives. Initially the mother said that these symptoms had
begun after the war. Later she stated that the irritability had begun 4 years
previously, after an accident at work had left the eldest son (now 22 years
old) in a wheelchair. This young man was depressed and occasionally violent
and threatening, particularly towards his mother. The family had had social
housing before the war. They were now allocated one room in a collective
centre in Prizren, a long way from their village. It had a bathroom and
kitchen shared with ten families. Their lack of a home prior to the conflict
meant that they gained nothing from the aid agencies engaged in rebuilding
programmes, and they were low on the list of rehousing priorities for the
municipality. The lack of a father and the distance from their remaining
extended family meant that the mother felt particularly vulnerable and
uncertain of her role and ability to lead her family, while her eldest son
felt frustrated at his inability to take on that leadership role.
The daughter's difficulties improved through a combination of play and family therapy conducted on home visits. However, the eldest son's depression and frustration continued. He tried fluoxetine briefly, but found it increased his irritability. We were aware that symptomatic relief was of little significance without improvement in their social circumstances. The mother felt that rehousing would resolve 90% of their problems. The son hoped for some means of active employment. Much of our time was spent pursuing the social agencies responsible, without success. One humanitarian agency was able to offer the daughter a holiday abroad, and at the family's request we also provided transport to a traditional healer who had a reputation for curing paralysis, but he had little effect. Mother and son continue to attend intermittently to discuss family issues, and to pursue rehousing and rehabilitation with our support.
War acted as a precipitant to psychological problems in a variety of ways, not simply through exposure to trauma. Post-war living conditions, the lack of material resources and the destruction of networks of support made previously manageable difficulties seem insuperable. The sudden improvement in the political and security conditions, combined with the influx of humanitarian agencies, allowed families who had had no previous opportunity to do so to access health care for longstanding problems. Sometimes they would initially label the onset as ‘traumatic’, but discussion would reveal the problem as pre-dating the war, or the war would exacerbate pre-war problems such as speech and learning difficulties (case vignette 2).
Case vignette 2
The patient was 7 years old and lived with her father, mother and five
siblings in a burnt and partly destroyed house in western Kosovo. A teacher
referred the child, who apparently suffered from elective mutism precipitated
by the war. The parents described an occasion at the beginning of the war when
Serbian soldiers had come to the village, lined the families up in the street
and threatened to shoot them. When the child began to cry a soldier had put a
gun in her mouth and threatened to shoot her if she did not shut up; the
parents said she had not spoken since. A home visit was conducted, which all
the family and additional relatives attended. The family lived in one room in
very poor conditions with mattresses on the floor. Through careful
interviewing, a more complex story of the child's complaint emerged. The child
had never learnt to speak, a part from occasional words; she communicated by
pointing, and although sociable and friendly with her siblings and friends,
she had other developmental problems. She had been bed-wetting until 3 months
previously. She was able to help with simple household tasks. There had been
behaviour changes since the war: she had become irritable with her friends,
was frightened of anyone in uniform and had sleep difficulties in the form of
night terrors. However, the parents stated that all these problems had
resolved themselves in the past few months except for the speech difficulties,
which were the main concern, as the child had just started school. The family
was given advice and referred to a speech therapist and for psychological
assessment with regard to the developmental delays. Referral to a special
school is being considered.
Children and families were offered a wide range of treatment (Fig. 6). The majority of those treated received psychological therapy. Family work was particularly suited to Kosovar culture, because of the importance of the extended family. The effects of the conflict had often thrown even larger groups into close living relationships with one another. Vignette 3 illustrates how patients often combined visits to us with seeing the local hoxha, a practice we supported.
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Case vignette 3
A 12-year-old boy was referred to a paediatrician because of panic attacks,
which had started when a shell had fallen by his school; the child had been
knocked over but was uninjured. The local hoxha had seen him, as had
an adult neuropsychiatrist. The patient felt the hoxha had been more
effective because he had told him he was not suffering from a physical illness
but was simply frightened, and provided a clear explanation for his feelings.
This had made the patient feel better, but the attacks had persisted and he
wanted help in stopping them. He was treated symptomatically with a
cognitive–behavioural approach, combining education with relaxation,
which resulted in some improvement. The patient stopped attending after six
sessions.
The humanitarian community and an active women's movement had also raised awareness of physical and sexual abuse and neglect as problems requiring protection and intervention. For example, there had been a long-standing and continuing problem with young mothers of illegitimate or disabled children abandoning their babies (especially girls) after birth. These babies remain in hospital, and become institutionalised. Child psychiatrists from Child Advocacy International became involved in assisting a multi-agency programme to assess and care for these babies, and promote appropriate fostering and adoption.
When auditing the disposal of patients in both years, we included ‘did not complete treatment’ as one possible means of assessing patient satisfaction. This is a separate measure from the ‘did not attend’ rate counted at clinic contact in year 2 (Fig. 1). That ‘did not attend’ rate includes patients who may have missed some appointments, but returned on a later date and continued their treatment to discharge. In year 1, 29/154 did not return to complete treatment after one appointment. In year 2, the figure was 101/376. In both years the majority of these patients had no psychiatric diagnosis and a significant number had non-organic enuresis. In the second year a number of non-Albanian patients began to attend the clinic (2.3% of the total) and two joint training seminars for Serbian and Albanian mental health nurses were held. Concerns of the Serbian population about their security when travelling in Albanian majority areas remained the major bar to their attendance.
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DISCUSSION |
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What kind of service is needed?
The range of diagnoses, and the age and gender of the patients, are in
keeping with Western psychiatric norms. The attendance of a number of adults
at child psychiatry clinics, particularly in the first year, highlights the
need for post-conflict services to be flexible enough to accommodate the needs
of the wider population in the aftermath of an emergency, until normal
services are re-established. The high percentage of children with learning
disability, enuresis and neurodevelopmental difficulties resembles findings
from developing countries. Poor access to health services, poor educational
facilities and poor obstetric care have all contributed
(Pillay & Lockhat, 1997;
Somasundaram & van de Put,
1999). The substantial groups of children with more biologically
based problems, and the cluster of older teenagers with serious
psychopathological disorders, justify the creation of an inclusive mental
health service rather than just a psychotrauma service. However, the large
group with stress-related problems and mood disturbances, particularly in the
first year, show that any post-conflict mental health service must have the
capacity to cope with traumatic reactions, grief and loss, while at the same
time recognising that these difficulties are often markers for complex social
problems which need to be addressed. The fall in the percentage presenting
with stress-related disorders in year 2 is in keeping with the view that many
post-traumatic stress reactions in children are self-limiting in the absence
of further stresses.
The large number of self-referrals in both years suggests that there were unmet needs in the community. In both years, the largest category was those with no psychiatric diagnosis. In the first year many of these cases were NGO referrals made simply because the child had been exposed to a traumatic event. Both the international and the general community had ‘learnt’ that there might be a reaction, and were concerned. In the second year the service saw a much wider range of problems, including behavioural difficulties and somatic complaints, none of which was serious enough to warrant a psychiatric diagnosis, but most of which benefited from explanation, education and the mobilisation of social support. A psychiatric service can play a significant part in ‘depathologising’ and normalising a war-affected society, and in treating minor disturbance. It is an educational role that we hope other professionals within the community will take on in the future. Many of the less serious presenting problems were difficulties with which families might have coped in normal circumstances, but the difficulties of postwar life, displacement and crowded living conditions had made them insurmountable. Behavioural problems often reflected greater stress in parents rather than an increase in conduct disturbance. Nocturnal enuresis is a much worse problem when beds are shared and there are no adequate facilities for washing sheets.
The most difficult problem was how to provide an adequate response for the large number of children with special needs, in the absence of adequate social services and with limited educational facilities. Our aim was to support the family in dealing with the numerous behavioural problems that occurred at home, as well as diagnosing and treating any accompanying mental illness.
These results are based on a clinical audit, not a community study, but they are likely to be representative of children and adolescents in Kosovo. Political violence was widespread during the war in Kosovo in both rural and urban areas, and in both years our clinics served mixed rural and urban populations in areas that had suffered a great deal and were typical of the wider population. A large number of displaced families had been rehoused by year 2. The greater stability of the population and greater accessibility of the clinics in this second year may have encouraged those with more long-standing, less acute problems to come forward, and increased the proportions of diagnoses such as learning disability.
Cultural challenges
Kosovars are familiar with Western-style adult psychiatric services. The
local professionals felt that the main cultural challenge was in reforming a
Soviet-style institutionalised and biological service which was inappropriate
to the needs of the children. The substantial number of non-attenders after
one appointment was thought to be the result of two cultural innovations: the
introduction of an appointment-based system, when Kosovars are accustomed to
waiting long hours at the clinic door and then being seen that day; and the
use of psychological therapies, as opposed to offering a drug-based
‘quick fix’. The non-attenders were mainly patients who had no
psychiatric diagnosis. Thus, it is also possible that non-attendance reflected
satisfaction with the advice offered in one appointment, so that families saw
no need to return (sometimes over long distances) for a follow-up. Similarly,
those with primary enuresis received psychoeducation in the first session.
Some might have been shy of attending for further group-based therapy.
However, we found that among those with the most serious difficulties or
behavioural problems, psychological therapies such as family,
cognitive–behavioural and play approaches were very acceptable and
popular. Neither staff nor patients felt that the service undermined
traditional approaches, but rather that it offered an alternative where these
had not worked or were not seen as appropriate.
Paradoxically, post-conflict societies may offer their populations improved opportunities, through access to humanitarian aid. Families who could not previously access help can now do so. Problems such as domestic violence and sexual abuse, previously little discussed, begin to be recognised. The ability to identify abuse raises challenges when there are as yet no established mechanisms or facilities for child protection or for dealing with the perpetrators.
The CAMHS has so far failed to provide an adequate service to all the ethnic communities in Kosovo. The lack of resolution of the political situation fosters continuing distrust on both sides. However, the engagement of the Serbian community in local elections suggests that bridge-building might be possible. The new child psychiatry residents are actively engaged in considering how to improve outreach to all Kosovars.
Ensuring sustainability
Many international psychotrauma programmes do not endure after the funding
dries up. Banatvala & Zwi
(2000) have argued that mental
health interventions in complex emergencies should be affordable, effective
and culturally valid; they should be based at the community level, and not
bypass or undermine established health services; and they should be audited
and reviewed to improve the standard of care. We have tried to meet these
standards. At the end of the second year of the project, the four seconded
staff returned to their hospital posts. One is due to become Kosovo's first
child psychiatrist once the Ministry of Health has accredited her training.
She is currently responsible for organising the academic and clinical training
of eight child psychiatry residents, who between them run out-patient child
and adolescent psychiatric clinics in primary health care facilities in the
six main towns of Kosovo. Currently the Prishtina clinic is based in the adult
psychiatric unit, but the hope is to establish a purpose-built department. In
year 3, Child Advocacy International refurbished the newly established clinics
and provided an international faculty to teach the academic component of the
residents' training. The most significant difficulties at present arise from
the lack of trained professionals and resources in social work, psychology and
nursing, which would be required for a comprehensive service including a
specialised capacity for learning disability. The main challenge in a divided
society remains how to reach all sections of the community.
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Clinical Implications and Limitations |
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LIMITATIONS
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TOPABSTRACTINTRODUCTIONMETHODRESULTSDISCUSSIONClinical Implications and...ACKNOWLEDGMENTSREFERENCES |
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