Perspectives of refugee parents and unaccompanied minors on initial health assessment and access to care

We designed a qualitative study with focus group discussions (FGD) and semi-structured interviews. Focus groups consisted of asylum-seeking parents and unaccompanied minors with rejected asylum requests. Interviews were conducted with health care professionals working in reception centers and with other refugees than our study population. From 50 reception centers in the Netherlands in 2018, we approached one center in Arnhem in which many families reside, hosting on average about 400 people, among which are 100 children. The inhabitants were asylum-seekers waiting for their asylum decision and refugees with a residence status, waiting for a regular house or apartment. Focus group discussions (FGD) with parents of children were held in this center. A nearby small-scale housing facility in Arnhem for unaccompanied minors (UMs) with rejected asylum request was approached to recruit minors. The personnel of the reception center were informed in a training about the study, the independency of the researchers, and the informed consent procedure to ensure voluntary participation in the recruitment, transparency, and confidentiality.

Parents and UMs were recruited in collaboration with employees from the National Central Organ of Asylum-seekers (COA), working in the Arnhem Center or minor housing facility. The employees orally invited parents and UMs through purposive sampling to voluntarily participate in a group discussion about health assessment and access. They distributed a study flyer in five languages to ensure representation from the main regions of origin. Researchers provided written and oral information about the study to the managers of the locations to the UM guardians who had custody and to the participants themselves for recruitment. At the start of each FGD, we gave the informed consent forms in the specific language at hand to the participants and discussed—via an interpreter—information and consent with them. Researchers answered questions of participants, and, after that, participants gave written consent. UMs’ guardians were asked permission to conduct a FGD with minors; they gave written consent after oral assent by the minors. Health professionals were recruited with the snowball technique, starting with professionals in the network of the first authors.

In the report of this study, we followed the COREQ guidelines [17].

At each FGD, a professional interpreter, recruited through a licensed bureau for interpreters, was present to translate between Dutch and the mother tongue of the participants (two FGDs in Arabic, one Farsi, one Dari, and one Tigrinya). The interpreters were briefed before to explain the aim of the FGD and the most important concepts. The questions were asked in Dutch and translated in the language of the participants, and the answers were translated back into Dutch. The transcripts were analyzed and coded in English.

The audio-recorded FGDs and interviews were transcribed using verbatim style. The transcripts were coded with ATLAS.ti 7 software (ATLAS.ti GmbH, Berlin, Germany). A combination of a deductive and inductive approach was used in the analysis. Each transcript was read several times in order to gain familiarity with the data. A deductive approach was used for all fragments concerning access to health care by health care professionals based on the five access dimensions (approachability, acceptability, availability, affordability, and appropriateness) and their corresponding patient abilities (ability to perceive, to seek, to reach, to pay, and to engage) by Levesque [14] (see Fig. 1). Next, open coding was used, and the subsequent codes resulted in a coding scheme. Then, axial coding was used for all fragments concerning experiences and needs of the study group on the initial health assessment. Data analysis was a circular process of going back and forth adding new codes or labels where necessary [18]. Final themes were created based on the prevalence of certain codes and their interrelation, or the salience of a theme in relation to the research questions. Appendix II contains the final coding scheme. Two researchers (CB, SFA) coded the transcriptions. Two others (AB, MH) double-coded a selection of the transcripts. Differences were discussed until a consensus was reached.

In general, parents and unaccompanied minors did not understand that they had received an initial health assessment, with the exception of being asked about and possibly receiving vaccinations. Vaccinations were well received, both by parents and adolescents. Some minors confessed they were reluctant to go for future vaccinations or what they called check-ups, for example, because they were afraid of injections or perceived they did not need them (“I feel healthy”). Some were unable to find the location or felt barriers to see a doctor (Table 3, quote 7). (See Appendix IV for all characteristics of the participants).

Parents expressed worries about the health and nutritional status of their children because children suffered during the war, during the flight, and in the Netherlands (Table 3, quote 1–2). Some children had spent time in prison. Parents, especially mothers, and minors expressed needs and expectations regarding physical and mental health screening (Table 3, quote 8) and a more extensive initial health assessment or follow-up. Mothers expressed a wish to learn more about health, diseases, and prevention (Table 3, quote 4).

Parents from countries where thalassemia screening was obligatory before marriage, due to the high prevalence in the general population (Syria, Turkey), expected such screening in the Netherlands as well (Table 3, quote 3). UMs stated they would prefer a screening upon entry instead of going to a doctor on their own initiative (Table 3, quote 7).

Psychosocial issues were mentioned in every FGD. Parents told about nightmares, bedwetting, and anxiety of their children (Table 4), who had recurrent thoughts of the war.

They mentioned specific needs as refugees who fled from a war zone (Table 3, quote 8) and suffered severe psychological consequences (Table 3, quote 9). Children taken out of their beds at night by the police in the Netherlands suffered from severe post-traumatic stress symptoms. The parents and minors who traveled through Libya were especially worried about mental and trauma health issues. They were not able to talk about their experiences because it was too stressful (Table 3, quote 7).

Uncertainty about their residence status was a big stressor for the unaccompanied minors and influenced the ability to perceive health needs and act accordingly. Continuity of care for extensive mental health and psychosocial problems was discussed in all focus groups. Minors identified that they had major mental health problems, but they did not search for care nor were referred care or support. In all FGDs, unmet needs regarding mental health and social problems were mentioned.

Differences between the health care system in the Netherlands and the country of origin were discussed (Table 5).

None of the participants could explain the organization of the Dutch health care for asylum-seekers, nor understood the distinction between preventive Youth Health Care, primary care by a general physician, and secondary curative services. The need for information and education on health and diseases was discussed extensively, among refugees and among healthcare professionals. Various ideas and suggestions were brought up regarding factors that may influence the ability of refugees to obtain information, such as access to the internet, recall of diagnosis or care used in the country of origin, and social contacts in the neighborhood.

Participants perceived that treatment or care for refugees was postponed and delayed, and they expressed their concern about long waiting times and the complex Dutch referral system. Parents of children with complex health needs were often not informed in their own language about the condition of their child, or only with the help of an informal “interpreter,” for example, a relative with little understanding of the Dutch or English language.

Parents and minors had to get used to the reluctance of health care providers to subscribe antibiotics in the Netherlands, in comparison to receiving antibiotics over the counter in their country of origin.

The health professionals’ experiences with access to care for asylum-seeking parents and UMs, were related to the five access dimensions of Levesque (Table 6).

The doctor-patient relationship was a recurrent topic, as it takes time to build such a relationship, especially in an intercultural setting. Professionals acknowledged that it took time to build trust and gain authority with the refugee population. Health care professionals underlined the importance of professional interpreters.

Although not asked for explicitly, cultural change was mentioned spontaneously as part of parental and children’s well-being. Parents told they tried to maintain their own cultural values and practices, while their children quickly accommodated Dutch cultural practices at school. Parents perceived that this cultural gap led to uncertainty about norms and values, to parent–child conflicts (Table 3, quote 10 and 11), or to professionals not taking into account or respecting parental norms and values (Table 3, quote 12). Parents experienced difficulties in raising their children without their extended family and compatriots around.

Parents stated that their children had little social contact with other children. Relocations from center to center negatively influenced the establishment of a social network. Parents expressed their need for parental support (Table 3, quotes 10–12).