‘Lost’: listening to the voices and mental health needs of forced migrants in London

Abstract

Research into the mental health needs of asylum seekers and refugees has revealed that they are likely to experience poorer mental health as well as higher levels of exclusion and vulnerability than native populations. This paper reports on data drawn from semi-structured interviews of 21 refugees and asylum seekers that describe the complexity experienced by those living in exile, and the necessity for a more integrated and holistic approach in the planning and delivery of services to support mental health. Incorporating a perspective from service users will encourage providers to take account of the multitude of practical, social, cultural, economic and legal difficulties that can influence the long-term mental health of this population. The implications highlight a need to shift from a simple biomedical model of the causes and effects of ill-health to a social model, which will require re-organisation not only in healthcare but in welfare, housing, employment and immigration policy.

Keywords:

• Asylum seekers
• Mental health
• Refugees
• Service provision
• Transcultural mental health care
• User involvement

Introduction

Research into the mental health needs of asylum seekers and refugees has shown that they are likely to experience poorer mental health than native populations and are amongst the most vulnerable and socially excluded people in our society 1,2. Pre-migratory, migratory and post-migratory experiences and difficulties all contribute to a high level of mental health need. Refugees and asylum seekers may have experienced war, persecution or inter-communal conflict, as well as multiple losses including family, friends, home, status and income 3. Research has also highlighted the continued difficulties this group may experience in exile with regards to issues such as housing, immigration and welfare support 4,5. There is a growing body of research on the challenges presented to mental health services by refugee and asylum-seeking populations; however, such research focuses mainly on organisational or institutional processes rather than user perceptions and beliefs concerning health care. The few studies dealing with black and minority ethnic experience of mental health do not specifically refer to forced migrants 6. This research attempts to redress the balance between service provider and user by prioritising the user perspective. The practical relevance of this study is also significant.

Methodology

This study was carried out in two phases: a literature review and a qualitative study of mental health as perceived by refugees and asylum seekers, detailed below. Literature from the following topic areas was identified: transcultural psychiatry, service user involvement, the accessibility of mental health services and the provision of appropriate services for refugees and asylum seekers.

Topic guides were developed by the researchers and were informed by the findings of a mapping exercise, and literature on the provision of mental health services for refugees and asylum seekers 7. The guides were extended by a number of prompts and probes to ensure greater inter-interviewer consistency. Ten of the 21 interviews with service users were carried out using an interpreter.

The researchers aimed to obtain a maximum variation sample with maximal differences in nationality, religion, culture, current location in London, age, class and immigration status. Whilst this technique does not allow in-depth exploration of issues affecting a particular client group, it identifies important common patterns that cut across variations. Service users were recruited through contacts at a refugee centre in central London which provides holistic support and advice (including housing, health, welfare and social care issues) to forced migrants from a range of backgrounds.

The centre was chosen for reasons of access and because the researchers, who had previously been employed at the centre, had already built up trusting relationships with fellow staff and clients at the project. It was also felt that potential interviewees would be less reticent discussing the sensitive issue of mental health with interviewers that they already knew and with whom they felt comfortable. The research team were aware of ethical issues that needed particular attention. To minimise the possibility that interviewees would feel coerced to participate in the study, because of the unequal power relationship between the interviewer and interviewee, strict exclusion criteria were applied when considering potential interviewees. Client vulnerability, capacity to provide informed consent and the possibility of the interview resulting in distress and re-traumatisation were issues discussed with the centre staff before a decision was made on whether an individual would be invited to participate. Where there was doubt about the capacity of a given client to participate, the client in question was not approached.

Great care was taken to ensure that the study was non-obtrusive and supportive. Voluntary participation and confidentiality were emphasised and researchers made it clear that interviewees could withdraw at any stage. They were also informed that their participation, or non-participation, would in no way affect the services that they were receiving from the centre. The fact that some potential interviewees declined when approached suggests that the invitation to participate was not coercive. Interviewees were also given the choice of the researcher by whom they wanted to be interviewed.

Finally, the researchers concentrated on identifying the perceived source of mental health issues amongst respondents rather than going into detail on the experiences of respondents. The intention was to avoid individuals having to re-live their stories which they may have already had to recount on numerous occasions as part of the immigration or counselling process.

The researchers charted the data for thematic analysis according to the principles of the Framework method 8. Using the constant comparative process they defined and redefined themes as new evidence came to light.

Sample

A total of 21 service users were interviewed for this study. The demographic data for the study is shown in Table I.

Table I. Demographic data.

Nationality/Ethnicity	Age	Borough	Time in country
Azeri	26	Enfield	5 years
Bosnian	28	Barnet	6 years
Colombian	34	Islington	4 years
Congolese	35	Hounslow	18 months
Ethiopian	61	Camden	8 years
Ethiopian	33	Kensington and Chelsea	10 years
Ethiopian	21	Camden	3 years
Iranian	36	Islington	4 years
Iranian	27	Camden	6 years
Iranian	27	Islington	3 years
Iraqi	37	Camden	4 years
Kosovan	21	Haringey	3 years
Kurdish (Iraqi)	65	Hounslow	6 years
Russian	26	Haringey	4 years
Rwandan	40	Wandsworth	6 years
Somali	62	Islington	12 years
Somali	54	Camden	6 years
Somali	46	Islington	3 years
Somali	46	Tower Hamlets	9 years
Somali	41	Hounslow	2 years
Ukrainian	50	Westminster	10 years

Six of the interviewees were asylum seekers, one was without status having been refused asylum, one had Exceptional Leave to Remain (ELR), one had British citizenship and the rest had been awarded refugee status. Eleven were men and ten were women. Fifteen of the interviewees were accessing mental health services provided by the NHS and charitable organisations; six were not accessing any mental health services. The results of this study have been grouped by the themes identified when analysing the interview transcripts, and discussion of the issues is included in each section. The themes are not listed in any priority as the method only allows voicing of user views rather than quantifying their impact.

Results and discussion of themes

Range of mental health issues

All of the interviewees reported experiencing some form of mental health problem. Only one of the interviewees indicated that their problem was not current. The nature of these problems is recorded in Table II. We have used the words of the respondents rather than applying our own interpretation or checking their medical diagnosis.

Table II. Mental health symptoms.

Complaint	Number of participants
Sleeping problems	15
Anger/bad temper	10
Panicky/panic attacks	5
Tearful	5
Depressed	4
Nightmares	4
Stress	4
Tired	4
Sad	2
Nervousness	2
Distressed	2
Bad memories	2
Breathing problems	2
Easily upset	1
Hates noise and crowds	1
Feel worse	1
Worry	1

Trauma and mental health

Twelve of the interviewees highlighted traumatic experiences in their countries of origin as being either one of the reasons, or the major reason, for their mental ill-health. Reference was made by the interviewees to beatings, imprisonment, torture and witnessing brutality and killings, such as:

Everything is lost and broken. So many were killed, beaten and shot. Women raped, beaten and shot. Men killed, missing, wives and children missing. I can't think about it but I do and cry all the time. It is the reason why we are here in UK, God willing. I am alone here now. (Somali female)

Two of the interviewees identified traumatic experiences in London as the source of their mental ill-health. One interviewee reported that he was a victim of a racially motivated stabbing attack in a large central park in London in 2003, and the other sustained injuries in the London bombings of July 2005. Both reported that the experiences had a huge negative impact on their mental health.

Social issues and mental ill-health

Housing

Interviewees indicated a number of social difficulties. All respondents referred to housing problems, other issues being the immigration process, benefits or financial troubles, barriers to employment, isolation, family conflict, loss of status and language problems, which affected their mental well-being and that of their communities. Housing was cited as one of the major causes of mental health problems, with ten people commenting on the lack of adequate housing or homelessness:

I was experiencing stress here. The stress was because I didn't have a place to stay or support. I was feeling to kill myself. I was sleeping in the streets. I was sick, very sick with TB. I didn't have support. I was crying, crying, thinking all the time, headaches and couldn't sleep. I would get lost and frightened. (Somali male)

There is a considerable body of research on the relationship of ethnic minorities, poor housing and poor health. Black and minority ethnic (BME) and refugee communities experience higher levels of housing deprivation than other citizens 9, whilst poor housing, poor amenities, shared facilities, inadequate heating or energy inefficiency have been associated with ill-health 10. Overcrowding, cramped living accommodation, lack of privacy, inadequate facilities and other housing problems such as frequent moves are strongly associated with stress, and in severe cases can be contributing factors in the onset of clinical depression 11,12. Temporary bed and breakfast (B&B) and hostel accommodation have been considered unsuitable and having a negative impact on mental health 13. Poor housing has indirect effects on health such as lowered resistance to mental and physical illness, unhealthy habits and reduced self-organisation 14, and housing deprivation affects the behavioural and psychological processes of individuals 15.

Immigration

The immigration process was cited as having a negative affect on mental health and the mental health of their community, with observations that because of the stress around immigration problems suicide was an issue in their communities:

There is a problem with people keeping things to themselves. There is a problem with suicide. One person from the church jumped in the water. They hang themselves, jump in to train because of immigration, housing. Most are men. They feel helpless. They don't know the way or speak the same language. I think that about 10 or 12 have committed suicide. (Ethiopian female)

The complexity of the asylum process and the uncertainty surrounding the interviewee's legal status was reported as having a negative impact on mental health. This inevitably disturbs integration, mental well-being and emotional and behavioural interactions:

I felt that I was going to be sent back. I couldn't sleep and eat Saturday to Sunday. It was very stressful and I was losing my hair. I had no iron. I had lots of headaches. I was very worried about being deported. It has also affected my daughter. She gets very hyper and hates noise, bangs and shouting. (Bosnian female)

The lack of control experienced when dealing with the immigration system can encourage feelings of helplessness and despair, diminish an individual's self-esteem and self-confidence, resulting in a state of ‘learned helplessness’. Individuals can become locked in a pattern where feelings of failure or lack of control make them believe that they are incapable of doing anything to improve their situation, which in turn results in individuals feeling even more out of control 16.

Employment and other issues

Two of the interviewees observed that if they could work this would help them forget their other problems more easily. Other social issues were identified, including money problems, inability to find work, interpreting, studying and benefits issues. The gap between people's expectations about the United Kingdom and what they actually experience once they are here was highlighted as a reason for depression and stress:

Here they think things will be easier but then you can't find job or money or housing, study, national insurance number and there are all these problems that they didn't know about. You lose hope and this causes depression. (Somali male)

Most asylum seekers are not given permission to work, and research has shown that refugees experience a number of barriers to employment, including language skills and lack of UK experience 17. Employment helps to give individuals a sense of independence and purpose and also provides occupation and diversion from other problems that individuals may be experiencing. Three interviewees who were entitled to work demonstrated frustration over attempts to find employment; they felt they were not able to accurately represent their capabilities, thus highlighting their relative deprivation and structural disadvantage. For some, the inability to find employment and reach their previous occupational and social status has resulted in feelings of hopelessness and despair.

Referrals, access and waiting time

Of the interviewees seeing a specialist mental health professional, four of them had been referred by the refugee centre and the rest had been referred by their General Practitioner. The majority of interviewees felt that they had waited for too long before their referral had come through, and one person had been looking for help for six months before being referred. Another person waited for a year before feeling able to approach their GP, for reasons including English language difficulties and lack of information about the health system. Most of the respondents currently seeing a mental health professional indicated that they were happy with the time and regularity of the appointments.

If services are available, a population may ‘have access’ to health care provision 18; however, the extent to which access is gained can depend on administrative, political, social and cultural factors and barriers, and above all services must be relevant and effective if people are to gain access to improved health outcomes. There are many potential barriers to accessing mental health services, including language, stigma, differences between cultures in relation to health beliefs, a lack of appropriate education and advertising about available services. This highlights the need for cross-cultural awareness training amongst health professionals.

The issue of disparity and inequality between BME groups and the majority white population in rates of mental ill-health and equality of service in terms of experience and outcomes has figured in government policy; however, policy documents give very little reference to the particular and specific needs of forced migrants within the BME communities 19,20. Treating BME communities as a homogeneous entity is a dangerous error 21; different ethnic groups and individuals within those groups integrate and/or assimilate in different ways and at different rates, and services must be sensitive to this.

Conceptions of mental health

Differences emerged between cultures in terms of health beliefs. Five interviewees observed that the concept of stress or depression did not exist in their country of origin and that according to their culture; individuals were either ‘mad’ or ‘sane’:

In Somalia people have problems and have stress but there is no record or investigation because there are no doctors out there. The whole country has been stressed for 14 years. People from Somalia use a different language about stress. When I came here I learnt the word stress because it is not well known in my country. Somalian people who are having stress thinks that he is okay but other people see that he is not. Educated people know that they have a problem but people who are not, don't. If someone is stressed they say ‘Waa waa she’ which means mad. It is quite extreme, there is nothing in between. Stress is less than mad but Somalians talk about being mad. (Somali male)

Inside Somalia people are crazy but they don't have depression. They (Somali community) didn't know about depression … I didn't want to publicise. Depression doesn't mean anything in Somalia. (Somali male)

In some societies a binary understanding of mental health is prevalent: people are either sane or mad. In Somali culture, suffering from ‘madness’ is not recognised as a medical issue but as a moral or spiritual one, and when people exhibit bizarre behaviour or thought patterns they are liable to be stigmatised by their families and communities. Cultural understandings of psychological distress, trauma and mental health vary dramatically, and expressions of psychological distress do not necessarily signify mental illness.

The dominant culture within a society shapes and influences all aspects of institutional service provision and development, but refugees are a heterogeneous group who have different cultural expectations of health care 2, with great variation in health and psychological issues as well as cultural beliefs 22. The cultural contexts in which people live influence the way they define and experience mental health and mental illness. Cultural factors can influence whether people seek care for their symptoms, what kinds of care they seek, and where they seek care including primary care providers, mental health providers, traditional healers or family members 23. Cultural factors can also influence how symptoms are reported and expressed 24. Unless cultural interpretations of distress are taken into consideration, communities will not access services, misdiagnosis may occur, and everyday mental distress can be mistaken for mental pathology 25.

Refugee communities are diverse and each group has its own language, history, cultural norms and religious beliefs as well as perception of health and illness. A culturally sensitive approach is therefore necessary if users are to receive appropriate care. Understanding how these cultural interpretations may impact on potential access and use of western health care is essential if service providers are to meet the needs of forced migrants.

Confidentiality and stigma

Fifteen interviewees expressed concerns around confidentiality and about the community finding out that they had mental health problems. All indicated that they experienced some level of anxiety about having a mental health problem, with some expressing this in terms of shame. Eight people explicitly stated that there is stigma around mental health in their communities:

Interpreters take time and then maybe he doesn't say exactly what you feel. For example he might say that I feel mad when I feel depressed. It's not good for confidentiality as they talk too much in the community. (Somali male)

They make signs. They say that people are mad. They like to talk. (Somali female)

Mental illness can result in varying levels of stigma for sufferers and their families, both within the host population and refugee and asylum seeker groups. Stigma has been described as negative outcomes that result from any physical attribute, behaviour or character which deviates from the norm and is perceived as undesirable 26.

One of the ways in which stigma within refugee and asylum seeker communities can be reduced is through the work of community groups. Such groups can act as a liaison between the individual refugee service user and the institutions within the health care system in order to combat the negative consequences of perception and stigma. A good example of how this can work in practice is provided by the Kurdish organisation, Derman, based in the London borough of Hackney, which has developed a culturally competent counselling service provided by bi-lingual Kurdish workers, trained in transcultural mental health. Being bi-lingual and bi-cultural enables the worker to build up a trusting relationship with service users and alleviates much of the stress, stigma and alienation associated with accessing the current mainstream health and social care services. The project also empowers its clients to take part in service planning and delivery which meets their individual and specific needs.

Alleviating distress

Interviewees were asked what helps them to relieve their distress. Ten highlighted the importance of friends and family, eight stated that medication helped them to feel better, though three said that medication did not help. Other relevant strategies included talking to their doctor, socialising, keeping busy, praying, artwork, music groups, sport and user-led groups such as sewing; breathing exercises and alternative therapies were also reported as useful coping strategies. The need for practical solutions in relation to issues such as housing and immigration was identified by most of the interviewees:

If the situation here is good then it is a good life but if not then it is bad. If someone gets housing then their life is good. My friend is relaxed in his accommodation so he is happy. If I had my housing I would feel better. (Iranian male)

Emotional and practical support

When asked who they turn to when are feeling emotionally distressed, important sources of emotional support reported were the psychiatrist or counsellor, the refugee centre, family or the GP. Two interviewees said that they did not go to anyone and only one said that they went to their own community.

Six of the interviewees stated that they are in contact with groups from their community for practical help or to socialise. The individuals who were not in contact with their community indicated that the community groups were not helpful and that they did not like mixing with people from their country for a number of reasons: because of the war; it is too far to travel; they do not trust them; or they do not have time. Interviewees also observed that their communities have their own problems and do not have the capacity to help them:

The community can help one or two times but they can't do more than that. The UK is a very developed country so people are thinking: ‘why aren't the government helping?’ (Somali male)

The lack of community relations mentioned above suggests not only that social support has diminished following migration, but that a fundamental social and moral order has been eroded due to the experience of war in their country of origin. The belief that community support and trust is a natural part of social life is challenged by war, forced migration and by perceptions of mental ill-health. Kinship ties among Somali groups, for example, may also influence community participation, tending to reinforce exclusive identities. The conflict within Somali society reduces community solidarity amongst Somali forced migrants, thus limiting participation in urban regeneration, social enterprise and social inclusion, and discouraging open and equal access to community services.

Talking therapies

There were diverging opinions amongst the interviewees on the efficacy of talking therapies for them. Several interviewees found talking therapy to be very beneficial:

She [the therapist] has really helped me. She saved my life. I talk to her about everything. She helps me focus, think about breathing and to take control when I have nightmares. (Azeri male)

Some were more ambivalent about the benefits of talking about their problems:

I don't want to talk about it but the psychiatrist makes me talk. I am not happy but she says it will help me … She helps me when I feel hopeless. She gives me hope. (Rwandan female)

Others were very sceptical about how effective they felt talking was:

I went to the counsellor but I feel even worse when I leave because he makes me talk and remember … They ask me about things that happened in my childhood but I don't know the use of that … Talking just reminds me more and more. I want more community activities and social activities. (Kurdish female)

Suggestions for improvements

Interviewees were asked what could be done to help people experiencing emotional distress in their community. The most frequent suggestion was the creation of more advice centres, giving advice on housing, immigration, and health, and offering help with forms and language. General community centres where people can socialise were thought to be of benefit, as would more generic services on offer to help them express themselves or develop skills such as art, music and sewing groups:

I like coming to the sewing group. I meet some people and it helps me forget. I can make things and it helps for not to think about all my problems. (Ethiopian female)

Benefits were also drawn from services that provided relaxation, techniques such as Indian head massage, complementary therapies and coffee mornings.

Services offered by mental health professionals could be improved by translating their letters and questionnaires into the appropriate languages or by employing more ethnic minority staff or people from their community. More outreach work by advice centres or more health visitors were identified as possible improvements, as was the need for more advertising of the mental health services. One interviewee felt that research should be conducted into the effects of housing and income support levels on refugees; another observed that there needed to be more education in his community about UK culture and the meaning of stress:

Most Somalis don't understand what is going on in Britain. They get the Home Office paper and most don't have the chance to study the difference in cultures. The Somalis who speak English and know the culture can educate the people about the knowledge that they have learnt. Lack of knowledge is the problem that this community has right now. (Somali male)

Any service seeking to respond to this group must have a range of language skills available in a highly flexible way. Without interpreters, service users are denied access. The Health of Londoners Project identified language ‘as the biggest single obstacle to access and as a major issue for providing healthcare to refugees’27. Inability to speak English is problematic, not only during the clinical encounter but it also makes accessing services and appointment making difficult. Other studies have identified that many minority ethnic groups are unaware of services available for reasons primarily to do with language 28.

Language was given a high priority by interviewees in terms of changes and improvements required. The problems and solutions were not as straightforward as simply improving the availability of interpreting services; some of the service users interviewed expressed a dislike for the use of interpreters from their countries of origin, fearing that they would be judged or become the subject of gossip. Improvements in this area therefore need to take into account these specific cultural factors.

Conclusion and recommendations

The sample for this research is small, and the findings cannot be taken as representative of the views of refugees and asylum seekers in general. However, exploring the experiences and opinions of respondents through in-depth interviews is an opportunity to obtain illustrative and detailed data on an area that is currently under-researched. The opinions expressed by the interviewees can be seen as examples of the types of issues that local services should be exploring with their own refugee communities. Each stage of the migration process is a risk factor for mental illness 29. The stresses and challenges at different stages of the migration process can lead to psychological distress and physical ailments; and deculturation, as the process of coming to a new and alien culture, adds to this distress. This research supports the view that psychological distress results not only from migration and challenging experiences but also from the social circumstances in the UK such as social support, housing and employment. Cultural perceptions of mental health can prevent individuals from accessing services and engaging with refugee community groups because of stigma. Whilst some respondents valued talking therapies and medication, others suggested alternative activity based interventions including coffee mornings, sewing groups and art groups.

Psychiatric theory acknowledges a number of social and environmental factors that are associated with mental ill-health in both a contributory and consequential way. However, these are perceived not as the primary causes of mental illness, but rather as secondary contributory factors. The logical consequence of medical categories is medical solutions where physical treatments take priority over more long-term practical initiatives which would mitigate the social disadvantages mentioned above. In the development of mental health service provision for refugee and asylum communities a more holistic understanding of mental health needs is required, to address the impact of issues such as immigration, housing, unemployment, deprivation and lack of income.

The traditional roles of mental health professionals should be re-examined and re-modelled to include preventative, practical and social interventions. Health providers need to offer a ‘holistic’ response to the needs of forced migrants, providing advice and advocacy, social and emotional support including mentoring and befriending, and facilitating access to appropriate housing, education and training. Local networks need to be developed between refugee, voluntary, faith and community organisations and mainstream service providers in the relevant sectors, leading to good practice standards for partnership working that meet the needs of this complex group.

To reduce stigma surrounding mental illness strategies need to be multi-faceted and have a co-ordinated approach to ensure that they reach individuals, communities and institutions. Engagement with refugee communities on education and training programmes can be at several levels; mentors or befrienders from the communities can act as positive role models. Such programmes need to be evaluated for positive outcomes, countering the negative beliefs within the community which stigmatise those suffering from mental ill-health. Approaches which empower communities need to be employed, such as the ‘Refugee Doctors Programme’ run by the Migrant and Refugee Communities Forum, which supports and encourages refugee doctors to resume their medical careers in the UK and work towards developing culturally appropriate services within mainstream provision. Such programmes can act as a forum in which individuals and organisations can exchange information, share experiences and work on specific health projects with members of their community. These events can also highlight issues and gaps in service provision for which lobbying is required.

Listening to the opinions of service users has become an important strategy in health services (20,30) and this research highlights that refugees and asylum seekers have meaningful and valid views that would contribute positively to the creation of appropriate and accessible services for them. More research is required to develop and evaluate methods to engage this varied group and the models of joint working across sectors that would more adequately meet their needs.