Ukrainian families’ transnational living and perception of Germany’s health care system in times of war

doi:10.21203/rs.3.rs-3328899/v1

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Research Article

Ukrainian families’ transnational living and perception of Germany’s health care system in times of war

https://doi.org/10.21203/rs.3.rs-3328899/v1

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Purpose

During the Ukrainian war beginning in 2022, about 3.7 million children became refugees. When referring to pediatric wards in Germany, significant levels of frustration in their parents’ communication with health staff are noticed. This study aimed to analyze expectations and perceptions of the vulnerable Ukrainian families with underlying problem areas in their health care provision.

Methods

Embedded in a qualitative, participatory approach, eight narrative interviews and one focus group were performed in the Children’s and Adolescents’ University Hospital of Leipzig. The interviews were thematically analyzed by applying the perspective of qualitative research used in medical anthropology.

Results

We identified Ukrainian medical culture with a rather authoritarian communication and stricter medical treatment of infectious diseases influencing parents’ expectations. Prompt and quick appointments in Ukraine due to an income based on the number of patients treated oppose barriers and long waiting times when accessing pediatric care in Germany. Families return to Ukraine for medical appointments.

Conclusions

Discrepancies concerning the self-treatment of infections and unintended discrimination emphasize the necessity for health staff’s intercultural training. The high-quality care of chronically ill children in Germany is a relevant pull factor. However, the treatment of future refugee populations may benefit from a de-economization and digitalization.

children

Germany

Ukraine

qualitative

transnationality

health care

Refugee children are especially vulnerable due to their language barrier and their dependence on a custodian. They are more frequent visitors of health care facilities, especially emergency care units. The German state law of the “UN convention on the Rights of the Child”, 1989 obliges hospitals among other pediatric wards to provide appropriate space and staff resources for their treatment. However, lacking access to pediatricians and mental health support is prescribed among refugee populations.

The interviewed parents express their high destitution concerning access to pediatricians, whereas the language barrier was often well managed mostly by using translation applications. Discrimination was felt when facing long waiting times and not receiving antipyretics in the waiting room as expected. The parents describe early medical treatments of (febrile) infections in Ukraine through immediate visits of pediatric wards. Using the “Helsi.me”-application to arrange medical appointments, they still return to Ukraine even during the ongoing war to avoid long waiting times in Germany.

Following the Russian attack on Ukraine on February 24^th, 2022, half of the country’s 7.5 million children escaped to Germany among other countries such as Poland [1–3]. Upon Ukrainian families’ arrival, we noticed rapidly increasing numbers of hospital referrals as prescribed for earlier refugees [4–6]. The waiting time eventually increased to over five hours with overstrained health staff.

The United Nations (UN) Convention on the Rights of the Child specified that refugee children as in the case of the Ukraine war shall “(…) receive appropriate protection and humanitarian assistance in the enjoyment of applicable rights set forth in the present Convention (...)” [7]. März (2022) derive the best interests principle, which claims a substantive right of all children for adequate emotional care and participation regarding decisions in their health care provision [8, 9]. Both the best interests principle and the Convention are set forth in Germany’s “Children’s Rights Convention Bundesgesetz” – the state law of the children’s UN convention. However, refugee children and adolescents often struggle to access health care services [10] with main barriers including the language and cultural barriers when approaching mental or physical health support [5, 6, 11, 12]. The few studies on refugee families published until today report low health literacy, the unknown medical history, traumatization, poor housing, coordination of appointments and interpreters, and long waiting times as further barriers [13, 14]. Along with their illness aggravating their self-determination and their dependence on a custodian, these barriers form a triple burden of Ukrainian children when referring to a foreign health care facility.

German hospital health staff is often lacking time to encounter these struggles resulting in parents’ and health staff’s misunderstanding, frustration, and maltreatment that we experience [5]. The hospital is a particularly stressful and highly economized setting with negative impact on refugee families [15]. Health care provider centric recommendations for necessary investigations upon arrival exist in Europe [16]. However, the refugees’ perspective is not yet well understood although their sociocultural backgrounds are among the most important determinants of health care deficits in Germany [17]. See also Online Resource 1 for details on the situational context of Ukrainian families in the German health care system.

We aim to identify the sociocultural context of Ukrainian parents’ perceptions and expectations regarding their children’s health care provision in hospital during their refuge in Germany. We aim to explore the biosocial, socioeconomic and political aspects in accordance with the perspective of medical anthropology, see also Table 1 [18–20].

To enable a parent-focused, in-depth approach, a qualitative analysis embedded into a participatory research design was chosen [6, 21–23]. A trial interview was carried out with a Ukrainian mother who accompanied the entire research’s planning and implementation as a cultural expert [21, 24, 25]. The semi-structured, narrative interviews were re-translated and collectively interpreted using reflexive thematic analysis in a focus group [21, 22, 25–28]. Selection bias due to a language barrier was avoided by involving a Russian- (five interviews and the focus group) or Ukrainian-speaking interpreter (two interviews) [6]. One interview was held without an interpreter using the English language. The audio recordings of the interviews and the focus group were transcribed using Microsoft Office transcription followed by a concise, repetitive re-listening. The final translation into the German language was carried out by the interpreter, if necessary [6].

Using convenience sampling in this new area of research, we contacted families at the inpatient department of the Children’s and Adolescents’ University Hospital of Leipzig in February 2023. Overall, of 18 families initially contacted, eight mothers were finally participating. The interviews had a duration of 40-120 minutes each. The families originate from different cities in Ukraine including Kharkiv, Mykolaiv, Vinnytsia, Bucha, Zaporizhzhia and Kyiv. Reasons for their referral to our hospital include their children’s acute, febrile infections and previously known diseases such as diabetes mellitus type 1, inflammatory bowel disease, a neurological disorder and non-Hodgkin lymphoma. Five main themes were identified when coding the transcribed interviews using thematic analysis (see also Online Resources 2-6).

Roots of worries about one’s children’s health (Ukrainian medical culture)

Throughout two interviews, Ukrainian doctors were clearly described as rather uneasy, not explaining well, quickly judging, just writing prescriptions, not smiling, and very strict. The resulting with a sense of loosing control eventually causes quick referrals to hospital, early calls of ambulances, demands for antibiotics and blood samples as recognized in our German health care system. One mother described being strongly convicted of having given the wrong lotion against a scald. “It made me wary. I will not ask the doctor a question again. I am not a very calm person (…) not understanding something makes me feel very different.”

A low physicians’ income depending on the number of patients treated despite high costs for medical school often necessitates sufficient “payment”, a tip or a gift in order to receive an adequate therapy. Physician’s consequential effort to see many patients in a short time eventually results in a situation such as one mother blamed for referring to the physician late making her feel a bad mother. Such experiences trigger the parents’ anxiety with paradoxical consequences: “No, to be honest, in Ukraine (…) I don’t go to the doctors. I don’t get sick.” Lately, the tipping for physicians was forbidden and the income increased to avoid corruption. Nevertheless, for one’s own assurance “to get something good”, parents still felt the need for tipping. “(…) one should be a millionaire to simply live in Ukraine. Children’s health and everything, you need; it requires only an enormous amount of money, just to simply treat you.”

Sharing the results in the focus group, one mother opposed this thesis and emphasized the rather advise-giving nature of her physician who was willing to find solutions together. In such a situation described by the other interviewees, she would have rather changed her pediatrician, which was easily possible in Ukraine.

First steps in Germany

First, compared to Ukraine, the process of finding a pediatrician in Germany is delayed by several months. “I have called all pediatricians in a 20-kilometer distance and they did not accept me and always put the phone down.” Besides, parents miss home treatment options or simple communication via social media with a pediatrician. Therefore, they often finally refer to the emergency room of the hospital with their child being sick. One parent described her disillusion with the words, “Where do you look for a pediatrician? I do not know anymore, where I should look for them. I simply don’t know!” In the focus group, parents felt neither the language barrier nor their sociocultural background causing the described hardship. They assumed the availability of less pediatricians overall, shorter opening hours, and the acceptance of less patients per physician compared to Ukraine. Suggestions discussed included mandatorily appointing a personal pediatrician according to zip-code or a payment per patient treated. “Only with changing attitudes to work harder, the problem may be solved.”

Second, long waiting times and distances for specialist appointments were mentioned in the majority of the interviews, e.g. six months for an ophthalmologist compared to one week in Ukraine. Parents feel that they “(…) have no control, when to go to the doctor who has a free appointment. This is about trust.” The implementation of massaging and calling applications (such as “Viber” for a first contact with the Ukrainian physician) as well as appointment applications (such as “Helsi.me” for referrals’ coordination and medical records) were suggested.

Finally, concerning appointments, one mother teaching 23 Ukrainian students in Germany said, “(…) with about 15 of them it already happened, that they went to Ukraine for treatments.” For such “medical tourism” as one mother named it, they accept extra charges and traveling expenses up to 500 Euros.

Waiting room and first aid in Germany

Waiting up to five hours and more in the emergency department makes the parents feel rather uneasy, helpless, frustrated, or even discriminated against: “Yes, everyone was tired. Only I understood that we had no physician… that the Germans were probably seen faster.” Ukrainian mothers feel the time deficit of the medical staff hindering an adequate translation with interpreters.

In Ukraine, first aid was given immediately and therefore also expected by the waiting parents in our emergency unit. Such first aid is considered an antipyretic or analgetic medication that several families complained not having received during their waiting time although feeling a need. “I was (…) in the queue so to speak. And then I had to rush home to get a medication against the fever, my husband waiting in the queue.”

Parents also claimed Germany’s immense bureaucracy and long waiting time for their child’s discharge summary. In Ukraine, the nursing service was responsible for the documentation, whereas in Germany physicians fulfill that task. However, disconcerting for the Ukrainian parents, the German nursing service takes blood pressure, pulse, and oxygen saturation as well as triages.

Antibiotic and antipyretic treatment

Febrile infections were treated early and with sufficient pharmaceuticals depending on the results of blood samples in Ukraine. Knowing the sale of antibiotics without prescription in Ukraine, the parents were anxious about the restrictive treatment in Germany: “I (my child) was hospitalized and 7 or 10 days with 38 up to 40 (degrees Celsius) no medical treatment happened. (…) And because of the extreme worries, I called the physicians in Ukraine (…)”. These discrepancies concerning the treatment confused parents: “Well, if my child in Ukraine had 40 (degrees Celsius) fever, then the ambulance comes with highest alert. And here, nobody would come even after three to four days. Moreover, we take our children ourselves and drive to the emergency room (…)”. During the focus group, the parents recognized they all had those feelings in common. In August 2022 (most of the participating families already living in Germany), Ukraine forbade the sale of most pharmaceuticals without prescription.

Medical care as a push and pull factor concerning the return to Ukraine

How parents compare the health care systems of Ukraine and Germany plays an essential role in means of push and pull factors concerning their potential return to Ukraine post-war. “I will not return. Because of my children’s health (…) Because I have seen the difference and what my children would have had (in Ukraine).“ The free health insurance covering all pharmaceuticals and therapeutic procedures contributes to the decision of families especially with chronically ill children. An annual check-up for diabetes patients in Ukraine costs about 350 Euros, which is approximately equivalent to a medical resident’s monthly salary. Besides, the standard of care with the technical equipment, mental health support and integration of children with disabilities is highly valued by the Ukrainian families. “If you have a big problem, you will have a better and broader support in Germany. And in Ukraine, you would always have to collect money for bigger treatments because the parents would have to manage the problem and treatment themselves.”

One mother however opposes the opinion of the others: “We had a good life, (…) a good income, went on vacation, we were able to afford things. (…) all this will end one day and we will return.”

Biosocial	Economical	Political	Frame: United Nations Convention on the Rights of the Child (1989)
discrimination	translating service	war
cultural aspects	health insurance	escape
personal history	health care system	social politics

Table 1. Aspects of the medical anthropology theory including biosocial, economic, and political components.

The illustrated aspects are known to influence the health (care) and physical as well as mental well-being of an individual [18–20]. Furthermore, they are part of the UN convention [7]. This framework is used as the basis for this study and the semi-structured, narrative interviews.

From the Ukrainian families’ transnational living, we may reflect and derive consequences for our health care system’s performance. Overall, the current war in Ukraine is challenging the assumed biomedical universality (i.e. the applicability of medical care independent of patients’ individual cultural background) in times of intense hospital economization [15].

First, the anxiety concerning their children’s health seemed to increase for Ukrainian parents in Germany after having experienced highly efficient health care in their home country. The German “Diagnosis related groups”-system (DRG) with lump compensation is currently leading to less children hospitals and hospital beds [17]. Thus, children and families are facing long waiting times for appointments and are regularly treated by untrained staff primarily from adult health care units [17]. Besides, the access to a personal pediatrician is highly complicated and often seems impossible although demanded by the UN convention [7, 13, 29]. The “Kassenärztliche Vereinigung Leipzig” (organization in charge of pediatricians’ licensure) oversees appointments for singular pediatric referrals or their long-term care in Germany (hotline +49 116 117, extension 2) [30]. Similar institutions may exist in other countries. These recommendations should be included in information for refugees upon arrival and into medical health staff’s training to advice further refugee patients contributing to refugees’ knowledge-seeking behavior [13]. In addition, governmental action to enforce a constitutional law for children’s health would emphasize the necessity to provide enough health staff for all children [17]. Incentives for more effective work of existing medical staff as well as the appointment of personal pediatricians according to zip codes were proposed by Ukrainian parents. However, such incentives may also result in inadequate and less extensive care for chronically ill children and should therefore first be discussed by the ministry for health and further responsible institutions. Technical improvements include translated health forms as demanded by Evangelidou et al. [5] and the development of health and appointment applications similar to “Viber” or the Ukrainian “Helsi.me” application. These applications may enable to contact the health staff in case of questions or need for a prescription and thus avoid unnecessary visits with prolonged waiting times. Besides, the pre-visit translation of the course of the disease and pre-existing diseases using translation applications may save time for all people involved (see also the handout for Ukrainian families in Online Resource 7). A waiting time reduction may furthermore be able by limiting and delegating bureaucratic work and through the provision of professional interpreters [5]. In addition, digital records would facilitate transnational care with the option to easily translate and present the medical records in the required language.

Second, Merry, Pelaez and Edwards [10] also described major socio-cultural challenges for escaped parents including discrimination and demoralization. They were especially evident, where first aid was often not given as expected when referring to the emergency room of our hospital. The described situation of a mother having gone back home to get an antipyretic drug is exemplary for underlying hierarchical structures and power imbalances [15, 20]. They intimidate Ukrainian parents and the situation were perceived as discrimination. Thus it is highly conflicting the UN convention and the “best interests of the child principle” [7–9, 12], although maybe only the language barrier or different definitions of fever might have caused misunderstanding.

Parents’ worries may also result from the rather authoritarian pediatricians in Ukraine. Due to their payment per patient, they may be eager to see many patients, e.g. with febrile infections, in a short time not allowing a participatory decision-making. This thesis needs further investigation as it was beyond the scope of our focus group to prove it. Compared to the early professional treatment in Ukraine, the handling of febrile infections in Germany seems to primarily lie in the hands of the folk health and popular sector [31]. It may require Ukrainian parents to take a new responsibility for their children they had never learned to bear and therefore rather overstraining them. The “fever app” – also available in Russian – may assist parents for gaining knowledge and competence concerning antipyretic and analgetic home treatment, see also Online Resource 7 [32]. It may lower the urgence of seeing a doctor and hinder unnecessary referrals to the emergency department or calls of the ambulance. Such action would result in shorter waiting times and lower health expenditures.

Finally, especially families with chronically ill children mentioned the extensive health insurance and medical support in Germany as important pull factors concerning their post-war living place. Besides, the given infrastructure and educational as well as social institutions in Germany facilitate the integration of children with disabilities despite prescribed organizational deficits [12]. However, the current grant to benefit from health insurance as asylum seekers will be rescinded with the ending war potentially necessitating the families to return to Ukraine [33]. A political debate about the long-term integration of such families is necessary to encounter their foreseeable denial of a return to Ukraine.

Other families shortly return to Ukraine for medical appointments despite the high traveling costs. In contrast to this phenomenon, “medical tourism” primarily describes people leaving home for appropriate medical care elsewhere [34, 35]. The phenomenon of returning to the home country (despite the ongoing war) rather touches on the concept of transnationality. So far, it was only prescribed by a few studies [34, 36]. It describes a competence gained by experiencing and adopting to different cultures without rejecting but moreover integrating either of them [10]. Staying in contact with pediatricians in Ukraine via “Viber” is one further example of lived transnationality. Future research would benefit from a clear distinction of this phenomenon with a clear definition as for example “medical return” [36], “return medical tourism” or “coming back medical mobilities”.

The knowledge gained in this study must be integrated into mandatory intercultural trainings for health staff and further stake holders as well as into medical curricula. It would allow to meet the demand of a sufficient health care provision for refugee children in line with the best interests of the child principle [5, 8, 9, 37–40]. Community-based participatory research will enable the implementation and evaluation of the interventions recommended [41, 42].

Our study’s limitations include a potential sample bias of only mothers and rather non-traumatized parents participating. Traumatized parents may tend to not participate in such interviews. In addition, families who had no contact with a pediatrician at all – although in need – could not be included. Problems with the Russian language spoken in five interviews and the focus group were felt by neither the researcher nor the interpreter. However, we could not resent an antipathy towards the Russian language due to the war, which might influence the interviewees’ responses. An unintentional influence of the researcher’s and interpreter’s perspective [24, 43] and a limitation of interviewees’ responses by the imperfect human memory and cultural beliefs may occur in narrative interviews [23, 44]. To the best of our intention and perception, there were no major alterations of interviews’ content. The knowledge gained is situated and thus not generalizable [45]. To complement Ukrainian parents’ perceptions of our health care system, we recommend to involve German and Ukrainian health staff as well as the children themselves with respect to their difficulties of reflecting and expressing own emotions in future research. Children in our study are seen in a more traditional way in need of a custodian [46]. We felt most frustration in the hospital to originate in the communication and interaction with the parents themselves. Modern theory denies a binary differentiation between adults and children describing childhood a “cultural invention” similar to womanhood [46, 47].

We fill a research gap with only a few pre-existing studies concerning asylum-seekers of which none concern Ukrainian families in Germany to the best of our knowledge [10]. Our results well describe the socio-cultural, economic, and political backgrounds and perspective of the Ukrainian families. Their transnational living uncovers both pull factors and blind spots of our health care system, e.g. limits of its current economization. With an intended co-intentional learning process, we provide clear and feasible recommendations and empower parents, health staff and further stake holders to change perspectives and reflect upon their experiences. The conclusions derived are in line with the United Nations Convention [7] and therefore going beyond previous research [48]. The methodology used in this study may be exemplary for qualitative studies of further refugee populations’ perceptions in German among other health care systems.

DRG Diagnosis related groups

UN United Nations

Statements and declarations

Ethical approval

This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by the ethical committee of the Faculty for Medicine, University of Leipzig (Jan., 21^st 2023, No. 433/22-ek).

Competing interests

The authors have no relevant financial or non-financial interests to disclose.

Funding

The authors declare that no funds, grants, or other support were received during the preparation of this manuscript.

Consent

Informed consent was obtained from all individual participants included in the study.

Author contributions

All authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by Anastasia Hoffmann, Daryna Pokas and Niels Ziegelasch and assisted by Olga Gotra. The first draft of the manuscript was written by Niels Ziegelasch and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

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No competing interests reported.

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Ukrainian families’ transnational living and perception of Germany’s health care system in times of war

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