Hälsa och ohälsa hos papperslösa migranter
Project number : 147351
Created by: Henry Ascher, 2014-04-25
Last revised by: Henry Ascher, 2016-06-08
Project created in: FoU i Västra Götalandsregionen

Not updatedNot updated
2013-01-01
Rekrytering/datainsamling inte påbörjad

1. Översiktlig projektbeskrivning

Engelsk titel

Health and ill-health in undocumented migrants

Populärvetenskaplig sammanfattning av projektet

Idag lever uppskattningsvis 10-50.000 personer i Sverige som papperslösa, utan formella rättigheter att leva i landet. De utgör en heterogen grupp avseende ursprungsland, utbildning och flyktingskäl, men som en osynlig grupp människor delar de en utsatt och sårbar situation på marginalen av samhället. Människor som lever papperslösa saknar tillgång till välfärdssystemen och inte har rätt till vård på lika villkor för vanliga patienter. Trots sin långvariga närvaro i välfärdsstater, är förvånansvärt lite känt om deras hälsotillstånd och levnadsvillkor. Den vetenskapliga forskningen på området är begränsad .

Den aktuella studien syftar till att undersöka hälsan hos vuxna papperslösa med särskilt fokus på fysisk och psykisk hälsa, social och psykologisk funktion, copingstrategier och erfarenheter av hur egenrapporterade hälsobehov uppfylls. Flera metoder används. I en beskrivande tvärsnittsdel kommer väl etablerade undersökningsinstrument att användas. En enkät konstrueras i samarbete med en referensgrupp av papperslösa. Kvalitativa fokusgruppsintervjuer kommer att komplettera dessa delar .

Studien kommer att äga rum i Göteborg , Stockholm och Malmö . Forskargruppen har unik tillgång till papperslösa informanter som vanligtvis är svåra att involvera i forskning.

Studiens resultat kommer att ge nödvändig och ny kunskap om hälsotillståndet hos en av de mest utsatta grupperna i västvärlden. Forskningsresultaten kommer att ge underlag för riktade insatser och förändringar som krävs för att förbättra hälsan för papperslösa människor. Det övergripande målet är att bidra till att förbättra människors hälsa, vård och planering, liksom lika vård för alla.

Vetenskaplig sammanfattning av projektet

In today's Sweden a part of the population live without a formal right to stay in the country. They are
often called “undocumented” and constitute a heterogenic category. In many respects they are invisible since they are not registered in usual population registers and at the same time the access to welfar like health care and schools is limited. The largest subgroup of undocumented persons in Sweden consists of rejected asylum-seekers. Many have experienced war and violence and are affected by traumatic symptoms. This contributes to increased vulnerability, particularly for stress. An unsafe existence under threat of being disclosed and deported contributes to increase the risk of negative effects on the health and well-being. A recent report from The National Board of Health and Welfare, Socialstyrelsen (1), shows that knowledge about health and living conditions of undocumented people is limited. A few small studies describe that undocumented persons often have a critical health situation (2-4). Approximately 2/3 perceived their physical and psychological health as impaired during the period of being undocumented. Anxiety and depression was 10 times more prevalent as compared to a Swedish population and moderately high and very high levels of suicidal thoughts were 20 times more prevalent (3). The research on undocumented children is even more insufficient (5). Existing studies are few and include a small number of participants. They describe that undocumented children live with a dominating sense of exclusion, injustice and fear of being disclosed and deported back to a threatening existence in the country of origin (6). In-depth interviews indicate that different children use very disparate strategies in order to handle everyday existence (6). A conclusion is that undocumented children live in an extreme situation of exclusion, social isolation and marginalization.

Overall aim
The overall object of this study is to describe the health situation of undocumented migrants in Sweden, a heterogenous but vulnerable and marginalized group given their migration status. Surprisingly little is known about the health status of this group, estimated to consist of 10,000 - 50,000 individuals. This study is a multimethod research that consists of two sections of the population (adults and children) and with different, but highly linked research questions. The first is a quantitative study on the health of undocumented adult migrants with particular focus on self-reported physical and mental health, social and psychological functioning, and testimonies of how current health needs are met. The second part is a qualitative study where undocumented children’s strategies for handling the everyday existence under circumstances of vulnerability and exclusion will be explored, as well as the consequences for their health and well-being. (Upprepning: the findings aims at enhancing knowledge and and contribute to a basis for interventions and other changes in order to improve the health needs of this vulnerable group.)

Aim
1. To evaluate the physical and mental health of undocumented migrants.
2. To assess their health service needs and how that relates to their actual access to health.
3. To explore different health-promoting strategies of undocumented children to cope with everyday life.
4. To explore how strategies vary with age, development and individual circumstances and characteristics.

Part 2 is a qualitative study designed to examine undocumented children’s well-being and individual strategies to cope with everyday life. The inquiry includes cognitive and social strategies children draw upon, how strategies can vary according to individual circumstances, age and development, and the relation to children’s own understanding of their situations. The study focuses on salutogenic, health-promoting activities, while retaining sensitivity towards potential research bias (e.g. children who are too unwell to participate in the study) (7). Children’s ability to cope is understood as a reflection of their agency and active engagement with their social environment, and not only a result of the availability of protective factors (e.g. social support, household cohesion, personal attributes) (8-9). On a general level, coping processes relate to the individual’s ”constantly changing cognitive and behavioural efforts to manage specific external and/or internal demands” (10).

In project two, we include children of school age (six to 18 years old). The number of children in the study will be at least 25, with a minimum of three meetings with every child. The exact size of the study population will be directed by the practical possibilities of the field. Though the sample cannot be representative, the aim is to obtain in-depth understanding of the child’s individual situation, opportunities, and the strategies they use to cope as well as possible. The group will as far as possible represent variation in age, country of origin and gender to capture both the breadth and depth of the children’s diverging coping strategies. We strive to qualify the diversity of the group, as well as the potential common tendencies regarding their apolitical status.

Methods
The research question guiding the qualitative research is: What strategies do children construct for coping with the demands of their undocumented migration status? In researching coping strategies, children may be aware of some of the strategies they employ, while others are deeply manifested in social relationships to the extent that they arise with minimal conscious reflection. We therefore use a wide range of ethnographic research tools to ask the research question in different ways. These tools include: 1) participating with and observing the children in their familiar social environments; 2) participatory research tools: drawings, games, ask children to photograph certain aspects of their social worlds; 3) Semi-structured interviewing; 4) The Strength and Difficulties Questionnaire (11), and a subsequent interview on its score. The emphasis on the methodological conduct is to give children time and space to volunteer parts of their stories. The focus of the research question is the “here and now”, with very careful and sensitive probing, methods we have used in previous studies on asylum-seeking children (12). A smaller number of interviews into the family’s background will be conducted with parents. Medical records may be ordered after approval. Professional translators will be used when necessary. The interviews are transcribed verbatim and analysed with similar methods as we previously have used (13-14).

In the quantitative part of the project the intention is to analyse all variables in the questionnaire in order to reach a descriptive analysis of health, social determinants to health and access to human rights including access to health. Correlations to factors like the time of being a refugee or being undocumented and access to social support will be explored. For questions used in other studies, risk rations will be analysed.

In the qualitative study, we use thematic coding analysis (15) as well as the standardized coding of the SDQ questionnaire. Thematic analysis is a descriptive data analysis strategy in which qualitative data can be effectively and structurally managed. By analysing transcripts of interviews, data are segmented, categorized and summarized in a way that captures the significant concepts and emerging themes within the research material. The result of a thematic analysis is a description of those patterns and the overarching interrelated themes.

Typ av projekt

Forskningsprojekt

MeSH-termer för att beskriva typ av studier

checked Kvalitativ forskning (Qualitative Research)
checked Fokusgrupper (Focus Groups)
checked Hälso- och sjukvårdsundersökningar (Health Care Surveys)
checked Tvärsnittsstudier (Cross-Sectional Studies)
checked Multicenterstudie


(Only selected options are displayed. Click here to display all options)

MeSH-termer för att beskriva ämnesområdet

information Added MeSH terms
Vulnerable Populations
Groups of persons whose range of options is severely limited, who are frequently subjected to COERCION in their DECISION MAKING, or who may be compromised in their ability to give INFORMED CONSENT.
Health
The state of the organism when it functions optimally without evidence of disease.
Health Services Accessibility
The degree to which individuals are inhibited or facilitated in their ability to gain entry to and to receive care and services from the health care system. Factors influencing this ability include geographic, architectural, transportational, and financial considerations, among others.
Human Rights
The rights of the individual to cultural, social, economic, and educational opportunities as provided by society, e.g., right to work, right to education, and right to social security.
Mental Health
The state wherein the person is well adjusted.

Projektets delaktighet i utbildning

checked Ej del i utbildning


(Only selected options are displayed. Click here to display all options)

2. Projektorganisation och finansiering

Arbetsplatser involverade i projektet

Added workplaces

Statligt - Universitet - Göteborgs universitet - Sahlgrenska akademin - Institutionen för medicin workplace verified by Sahlgrenska Akademin on 2017-04-05
Regioner - Västra Götalandsregionen - Närhälsan - Övrigt
Regioner - Västra Götalandsregionen - Specialiserad vård - Sahlgrenska Universitetssjukhuset - Område 2 - Infektion workplace verified by Västra Götalandsregionen on 2018-02-27
Regioner - Västra Götalandsregionen - Specialiserad vård - Kungälvs sjukhus workplace verified by Västra Götalandsregionen on 2018-02-27
Regioner - Västra Götalandsregionen - Specialiserad vård - Angereds Närsjukhus workplace verified by Västra Götalandsregionen on 2018-02-27
Statligt - Universitet - Göteborgs universitet - Samhällsvetenskapliga fakulteten - Institutionen för socialt arbete [1954 - ]

Medarbetare

Lena Andersson
Universitetslektor, Institutionen för socialt arbete
Milosz Swiergiel
ST-läkare, Infektion
Ellen Krabbe
Legitimerad läkare, Närhälsan Hisingen barn- och ungdomsmedicinsk mottagning
Vesta Seyed Alikhani
ST läkare, Specialistcentrum Barn och Unga Gamlestaden

Finansiering

Grants

Västra Götalandsregionen (VGFOUREG-383601)
173 000 SEK (applied sum: 500 000 SEK)
Henry Ascher

2013, Hälsa och ohälsa hos papperslösa migranter Health and ill-health in undocumented migrants

Vetenskapsrådet (521-2012-2927)
2 700 000 SEK (applied sum: 8 082 000 SEK)
Henry Ascher

2012, Hälsa och ohälsa hos papperslösa migranter

3. Processen och projektets redovisning

Detaljerad projektbeskrivning

Bakgrundsbeskrivning

In Sweden a part of the population live without a formal right to stay in the country. They are often called “undocumented” and constitute a heterogenic category. In many respects they are invisible since they are not registered in usual population registers and at the same time the access to welfare (e.g. health, schools) is limited. The largest subgroup of undocumented persons in Sweden consists of rejected asylum-seekers. Many have experienced war and violence and are affected by traumatic symptoms. This contributes to increased vulnerability, particularly for stress. An unsafe existence under threat of being disclosed and deported contributes to increase the risk of negative effects on the health and well-being.

A recent report from the The National Board of Health and Welfare, Socialstyrelsen (1), shows that knowledge about health and living conditions of undocumented people is limited. A few small studies describe that undocumented persons often have a critical health situation (2-4). Approximately 2/3 perceived their physical and psychological health as impaired during the period of being undocumented. Anxiety and depression was 10 times more prevalent as compared to a Swedish population and moderately high and very high levels of suicidal thoughts were 20 times more prevalent (3).

In spite of the health needs, significant barriers to access health care exist. Until July 2013, undocumented migrants were only entitled to emergency care, at their own expense for the full costs. In practice, an undocumented patient in Sweden was dependent on voluntary organisations and a benevolent attitude in the health care rather than on a predictable regulation (4-6). Still the right to health care for undocumented migrants and asylum seekers is limited to the unclear concept ”care that cannot be deferred” (”vård som inte kan anstå”). If the changed law in practice will affect the right to health care for undocumented persons remains unclear and needs to be evaluated.

Syfte

The overall object of this study is to describe the health situation of undocumented migrants in Sweden, a heterogenous but vulnerable and marginalized group given their migration status. Surprisingly little is known about the health status of this group, estimated to consist of 10,000 - 50,000 individuals. This study is a mainly quantitative study on the health of undocumented adult migrants with particular focus on self-reported physical and mental health, social and psychological functioning, and the experiences of how the current health needs are met. The findings aims at enhancing knowledge and contribute to a basis for interventions and other changes in order to improve the health needs of this vulnerable group.

Frågeställning / Hypoteser

  1. To evaluate the physical and mental health of undocumented migrants.
  2. To assess their health service needs and how that relates to their actual access to health.

Metod: Urval

Methods
The project uses multiple methods with a) a descriptive cross-sectional study, and b) a qualitative focus group study. The study will be conducted in Gothenburg, Stockholm and Malmö. The study population is adult undocumented migrants who visit the voluntary clinics for health care for this group. It is estimated that approximately 1,500 unique undocumented migrants visit these clinics each year. Also other voluntary organisations supporting undocumented in various ways (trade unions, asylum groups etc) will be used to reach participants. Even if we can not guarantee a representive selection, we will thus reach the best possible variation given the circumstances.

Study group
Approximately 500 undocumented migrants will be included in this project. The number is estimated in order to catch the variety of the heterogenic group of undocumented migrants. The focus group interviews will be conducted in Stockholm, Gothenburg and Malmö.

Reference group
A reference group of people with experience of living undocumented will be invited to participate during the whole study, giving information about all relevant issues for the questionnaire as well as for interpretations of the result. They will contribute with a user- involvement, which will be extremely important in order to grasp the actual living conditions of undocumented migrants.

Metod: Datainsamling

Questionnaire
A questionnaire is constructed out from the following considerations:
1) It should include questions on physical and mental health in a wide aspect, including trauma, as well as access and barriers to health care.
2) It should cover specific aspects of the situation as undocumented.
3) It should be possible to compare results with other studies on other populations.
The questionnaire will consist of a wide range of questions with multiple choice answers plus some open-ended questions to enable a deeper understanding on selected issues. It will use both validated instruments, as well as newly constructed questions tailored for the purpose of this study.

Questions from the following established and validated instruments are included in the study:
Physical health, overall health status, functional status, and health-related quality of life: Short- Form 36 Health Survey (SF-36), Living Conditions survey (Undersökning av Levnadsvanor, ULF), Public Health Reports (Hälsa på lika villkor, Folkhälsoenkäten).
Mental health: The Mini International Neuropsychiatric interview (DSM-IV)
Experiences of violence and threats in Sweden: Public Health Report (Hälsa på lika villkor Folkhälsoenkäten)
The details of the questionaire are formed in collaboration with eperts in the field as well as a reference group of migrants who have experiences of being undocumented. Special consideration in the design will thus be taken to the vulnerability of the informants.
The questionnaires will be filled in by the interviewer together with the informant. Henry Ascher and co-applicant Lena Andersson will be responsible. At each location there will be a local responsible person. Medical and psychology students who are volunteers at the clinics, as well as other senior staff with experience of work at the clinics, will be involved. All information is translated into the most common languages among the undocumented. When necessary interpreters are used to overcome language barriers and to avoid exclusion of illitarate informants, an important group to study that commonly are excluded from research studies. As an alternative to printed questionnaires we are considering the possibility of an iPad-solution. Such a solution have several advantages: It may be possible to make logical jumps, the language can easily be switched, a voice and record solution may be used e.g. for illitarate informants and interview data can easily and safely be transferred directely into a database for later analysis.

Procedure for the interviews
Oral and written information about the study will be given in the waiting room including that careful information about voluntariness, informed concent and secrecy. The interviews will be held in privacy, either at the same time or at a later point of time.

Reference group
The reference group discussions will be recorded and trancribated verbatim. A qualitative analysis will be done using a manifest content analysis.

Metod: Databearbetning

The intention is to analyse all variables in the questionnaire in order to reach a descriptive analysis of health, social determinants to health and access to human rights including access to health. Correlations to factors like the time of being a refugee or being undocumented and access to social support will be explored. For questions used in other studies, risk rations will be analysed.

Resultat

The project fills a knowledge gap about undocumented migrants, one of the most marginalized and invisible groups in todays Western world, and whose situation also affects public health. The study will provide important knowledge about health, living conditions and health care seeking behavior, as well as knowledge about strategies used to manage the challenges in an everyday life characterized by exclusion. The participatory design of the study aims at activate undocumented persons to express their needs and use the results in order to support their demands as a basis for spreading knowledge as well as for interventions. The results thus have a potential to increase the possibilities for undocumented migrants to receive proper medical attention and thus increase their possibility to access their human rights including the right to health. The project thus aims first at describing the health in the group and secondly to give tools for improving the health care.

The knowledge generated in this study will also be important for health authorities, policy makers as well as for health professionals in clinical practice. Today the importance of fulfilling the human right to health by giving equal access to health care for all is on the agenda. A new law giving some access to health has just been implemented. However it has been criticized for maintaining a discriminatory and arbitrarly health care for asylum seekers and undocumented since it denies a particular and vulnerable group of patients the right to health care from their clinical need alone (5-6).

Results from the project will be presented in peer reviewed scientific journals as well as at national and international conferences. We plan to arrange a conference and a report after finishing the study and we will lecture also outside traditionally academic areas.

Diskussion

A major problem in doing research about undocumented migrants is the difficulties to recruit undocumented migrants for research studies. They are often invisible, suspicious and fearful. In a quantitative study in Norway it was, in spite of great efforts, only possible to recruit 15 respondents (7). In a Swiss study, in which students who were personally acquainted with undocumented migrants were used as interviewers, it was much easier to recruit informants (8). The possibilities in the present study of two reasons; a) accessibility to the voluntary health clinics that provide health care to undocumented migrants in Gothenburg, Stockholm and Malmö and b) the main applicant is one of the founders of the Rosengrenska foundation in Göteborg, and thus holds a high level of trust among undocumented migrants and their network. This provides this study with unique credibility and prospect to reach its goal are exceptionally good.

Referenser

  1. Envall E, Vestin S, Björngren Cuadra C, Ascher H, Staaf A, Khosravi S. Papperslösa. Social rapport 2010: Socialstyrelsen; 2010. p. 267-92.
  2. Läkare i världen. Tillgång till vård för papperslösa i elva europeiska länder. Läkare i världens kartläggning av tillgång till vård i Europa. Stockhom: 2009.
  3. Läkare utan gränser. Gömda i Sverige. Utestängda från hälso- och sjukvård. Stockholm: 2005.
  4. Ascher H, Björkman A, Kjellström L, Lindberg T. Diskriminering av papperslösa i vården leder till lidande och död. Nytt lagförslag hot mot patienterna, vården och samhället. Läkartidningen. 2008;105(8):538-41.
  5. Ascher H. Rätten till hälsa för papperslösa migranter i Sverige. In: Lundberg A, editor. Mänskliga rättigheter — juridiska perspektiv. Stockholm: Liber; 2010. p. 267-92.
  6. Wright S, Ascher H. Undocumented Migrants. In: Backman G, editor. The Right to Health Theory and Practice. Lund: Studentlitteratur; 2012. p. 281-310.
  7. Hjelde, K. «Jeg er alltid bekymret». Om udokumenterte migranter og deres forhold til helsetjenestene i Oslo, in NAKMIs skriftserie om minoriteter og helse2009, NAKMI: Oslo.
  8. The Process of Social Insertion of Migrants, Refugees and Asylum Seekers in the Context of Access to and Use of Health and Social Services. Synthesis and Recommendations, 2004, International Centre for Migration and Health: Geneva.


Hälsa och ohälsa hos papperslösa migranter, from FoU i Västra Götalandsregionen
http://www.researchweb.org/is/html/vgr/project/147351