Disabled and immigrant, a double minority challenge. A qualitative study about the experiences of immigrant parents of children with disabilities navigating the Norwegian healthcare system in general and the pediatric rehabilitation services in particular.


 Background: Immigrants and their Norwegian-born children make up approximately 18% of the total population in Norway. While several studies have been conducted on migrants’ utilization of healthcare services, immigrant families are systematically underrepresented in international studies of children with disabilities. This study, by focusing on experiences of immigrant parents of children with disabilities who are navigating the Norwegian healthcare system in general and the pediatric rehabilitation services in particular, will generate knowledge of how accessible and tailored the services are from their point of view. Methods: This study took a qualitative approach, using semi-structured interviews to explore the experiences of immigrant parents of children with disabilities from non-Western countries. The interviews were transcribed, coded, and analyzed via an inductive thematic analytic approach. Results: The findings show how the “immigrant experience” influenced the way the parents looked at, experienced, and even praised the services. The parents appreciated the follow-up services provided by the pediatric rehabilitation centers, which they experienced as predictable and well-organized. While navigating the services, they experienced several challenges, including the need for information, support, and timely help. They felt exhausted because of the years of struggle in the healthcare system to gain access to the help and services they needed. They expressed how this struggle had affected their own health. The feeling of being treated differently from the majority was another challenge they experienced while navigating the services. The findings also show how the parents’ experiences of communication with healthcare providers were influenced not only by their own language and communication skills but also by the healthcare providers’ intercultural communication skills and dominant organizational culture. Conclusions: The parents’ experiences show that there is still a gap between the public ideal of equal healthcare services and the reality of the everyday lives of immigrant families of children with disabilities. By exploring immigrant parents’ experiences, this study highlights the importance of mobilization at both the individual and system levels to fill the current gap and provide tailored and accessible services to the entire population. Keywords: Immigrant parents, Children with disabilities, Healthcare system.


Background
The composition of the Norwegian population, as in other countries in Europe, has been changing (1, p. 3). Immigrants and their Norwegian-born children comprise approximately 18% of the total population in Norway. More than 80% of all immigrants in Norway come from non-Western countries (2). The immigrant population, like the rest of the population, is not a homogeneous group (1, p. 4). They come from 221 different countries and independent regions for many different reasons (3). They vary in ethnic, cultural, educational and socioeconomic backgrounds, as well as the length of their stay in Norway (2).
An inclusive and equal society is an important goal of the Norwegian government. It is important both for the individual and for the society that everyone feels a part of the society. An equal healthcare service is a very important part of and a condition for achieving this goal (1, p. 3). However, the consumption of healthcare services in Norway varies both within different immigrant groups and between immigrants and the general population (4).
Increasing ethnic diversity in the population and differences in the utilization of healthcare services pose challenges to the authorities' stated goal of equitable healthcare. Improving knowledge of what influences immigrants' use of healthcare services will therefore be beneficial for planning policies and delivering healthcare services (4). While much research has been conducted on immigrants' utilization of healthcare services, immigrant families are systematically underrepresented in international studies of children with disabilities (5).
A critical review of the international literature on immigrant and refugee families of children with disabilities revealed an absence of information about their access to, utilization of and experience with both community-based healthcare and rehabilitation services (6). Bailey et al. (7) in their study of 100 Latino couples of young children with disabilities conducted in the United State (US) found that awareness and utilization of services varied among these families, and high awareness was associated with high use of services. Interestingly, their findings showed that none of the demographic variables, such as education of parents were correlated with awareness and use of services. Their results revealed how parents with low awareness and utilization tended to be satisfied with the services they had received, and did not actively pursue additional information. Thus, the authors suggested that family variables such as feelings of control, which could influence an individual's ability to gather information and make use of necessary services, might be more important determinants of awareness and use among these families. However, a recent review of seventeen international articles revealed increased barriers to care for immigrant families of children with special healthcare needs, partly due to the difficulty in navigating a challenging and changing healthcare system (8). A qualitative study accomplished in Canada also shows that Immigrant parents of children with disabilities not only face the same barriers as majority families but also encounter additional challenges (9). Besides to this study, a narrative review of 39 articles, which are mostly from the US and United Kingdom (UK), showed how immigrant parents of children with disabilities mainly face additional challenges due to language barriers (10). According to Bailey et al. (7) parents in minority ethnic groups may also face challenges due to lack of familiarity with cultural expectations regarding the proper way in which to seek help, and professionals who are not fully aware of the implications of ethnic diversity with regard to values, goals, and behavior. Fellin et al. (11) who interviewed 43 clinicians within two pediatric centers in Canada highlighted the need for clinicians to provide culturally competent care to immigrant families of children with disabilities by being aware of their own cultural and/or professional worldviews and the views and experiences of these families.
Two studies of Pakistani and Bangladeshi families with a severely disabled child conducted in the UK revealed how service providers' stereotypical perceptions of immigrant families created challenges during these families' encounters with the healthcare system (12,13) .
Research conducted in Norway and Denmark also showed how service providers largely explain the challenges they face while interacting with immigrant families as being the result of cultural and religious differences (14,15). Because of this, service providers may easily overlook other matters of importance and instead create stereotypical images of "the others" with reference to their culture or religion (14). This generalization can hinder the building of individual relationships to meet the unique needs of each family. In her study of minority parents of disabled children within the Norwegian healthcare system, Söderström (16) highlighted how language difficulties and stereotypical assumptions made it difficult for minority families to access healthcare services.
The legitimacy of the healthcare system is a product of its ability to provide timely and appropriate services to the entire population (17). Increasing ethnic diversity in the population necessitates a great deal of flexibility, creativity, and professional expertise on the part of the healthcare services to provide equal access, usage, and outcomes for the entire population (16). Research shows that lack of use of services has more to do with how the services are organized than with the characteristics of the families (5,12,13).
There is, however, limited literature that tells us about the stories of immigrant families who have children with disabilities (18). A lack of knowledge of these families' experiences interacting with the healthcare system limits the cultural integrity of practices within healthcare services (14,18). McKay (8) notes a lack of data about best practices with regard to immigrant children with special healthcare needs. According to Fellin et al. (11), there is an absence of formal procedures for developing approaches and treatment plans based on interactions between professionals and immigrant families who have children with disabilities, despite their importance for the support of those families.
It is, therefore, important to conduct research focusing on diverse populations to enhance the further development of healthcare services and provide appropriate care and guidance to immigrant families who have children with disabilities. This study sheds light on the experiences of immigrant parents of children with disabilities who are navigating the Norwegian healthcare system in general and the pediatric rehabilitation services in particular.

The Norwegian healthcare system
The Norwegian healthcare system is publically funded (19), and characterized by universal coverage and public provision of services (20). It is semi-decentralised with municipalities responsible for primary healthcare services and the state responsible for specialist healthcare services (19). Primary healthcare includes long-term care services, general practitioners (GPs), physiotherapists, community health nurses and emergency care.
Specialist healthcare includes both specialist healthcare providers and hospitals (21).
Residents are assigned a GP who acts as a gatekeeper to specialist healthcare services.
Patients, except children and pregnant women, pay a subsidised consultation fee when visiting their GP. Most medical specialists outside hospitals, as well as out-patient hospital services require co-payments (22). There is also private healthcare in Norway where one can access specialists directly, but out-of-pocket fees are typically four times higher (21).
Private healthcare is relatively uncommon and mainly available in urban areas (20).
The primary and the specialist healthcare system both provide services within pediatric rehabilitation, but the tasks are more specifically defined for specialist healthcare services. The primary healthcare system has the overall responsibility for the follow-up, providing the necessary examination to identify the need for rehabilitation, and if necessary refer these children to the specialist healthcare services. Children and adolescents from 0-18 years with congenital or early acquired disability, developmental disorders or chronic illness may be entitled to pediatric rehabilitation services in the specialist healthcare system. Multi-professional pediatric rehabilitation teams have the core responsibility to provide services, and follow-up children in accordance with their overall needs. Most of the service are provided as out-patient services, but may also be provided at children's wards (23).

Methods
This study was conducted with a qualitative approach, using semi-structured interview guide (Additional file 1) to explore the experiences of immigrant parents seeking care for their children with disabilities. Parents were asked about their experiences with both primary and specialist healthcare services in general, and the pediatric rehabilitation services in particular. By focusing on experiences of immigrant parents from non-Western countries, this study generates knowledge of how accessible and tailored the services are from their point of view.
The potential participants who lived in the Oslo area were additionally informed about the study verbally by phone by the first author in simple language after they had received the information letter. The sample included 23 parents, with 6 fathers and 17 mothers who were immigrants from 14 different countries (Table 1). One potential participant declined to participate in the study, because of family difficulties. Some participants were familiar with the first author prior to the study commencement due to her role as a project's coworker in a former developmental project, which was intended to inform and encourage immigrant families to participate in a pediatric rehabilitation program at a Norwegian rehabilitation center with adapted physical activity as the main intervention. One of the families was already familiar with the first author due to her role as their child's physiotherapist.
Although we used convenience sampling, the participants varied in their educational and socio-economic backgrounds, Norwegian language skills, and the length of their stay in Norway (Table 2). Because the healthcare system in Norway is organized similarly across the whole country, the experiences of the services would remain largely the same regardless of the city of residence in Norway.

Data collection and analysis
Twenty-three interviews were conducted from April 2017 to January 2018. All interviews were conducted by the first author in Norwegian, except one that was conducted in English. Data saturation was discussed with the co-authors and considered as achieved.
The first author is an immigrant from the Middle East herself. She worked as a pediatric physiotherapist in the primary healthcare system in a multicultural district in Oslo for several years. Both as an immigrant herself and as a health professional, she was familiar with some of the challenges that the participants may have experienced while navigating the Norwegian healthcare services. The shared experiences and cultural familiarity was a foundation for building trust between her as a researcher and the participants.
Professional interpreters contributed while interviewing six participants. The use of interpreters was based on the first author's perception of the participants' language skills during the telephone conversation prior to the interviews, if the participants did not mention the need themselves. The interpreters explained their roles and their duty regarding confidentiality, and they signed a declaration form prior to each interview.
Prior to each interview, the first author explained the purpose of the study and the study regulations regarding confidentiality, and then she obtained written informed consent from all participants. She also emphasized that they could withdraw their consent without giving any reason if they wished to later. The participants were also informed of the interview procedure and the recording of the interviews. Interviews lasted for approximately 25-65 minutes and were performed at a place and time that were convenient for each participant, including participants' homes, a café, Oslo Metropolitan University, the rehabilitation center, and the Family House health and educational service providers in the participants' local districts. While interviewing two participants, their spouses were present during parts of the interviews.
During the interviews the first author continuously used to ask participants if she had understood their statements correctly, in order to make sure that she had captured their meanings accurately. Two participants were contacted and interviewed again by the first author in order to make further clarity about some subjects. All interviews were recorded and transcribed verbatim by the first author. Transcription of the first four interviews took place immediately after conducting the interviews, which was useful for fostering reflection on the applied terms, and construction of interview questions based on participants' understanding and responses. Then, the interview questions were modified, and new questions were added to the interview guide. However, adjustments of the interview guide were constantly made while conducting the interviews depending on the participants' responses and the context of the interview. The interview guide explored three domains: (1) the experience of services in terms of both strengths and challenges; (2) the experience of interacting with healthcare providers; and (3) the experience of receiving information. The interview guide was developed based on experiences from the former developmental project at a rehabilitation center with informal conversations and observations of the participants who were later recruited to the present project.
The transcription of interviews was an ongoing process as was conducting the interviews; the process of transcribing the interviews lasted a while after completing the interviews.
Therefore, the first author listened to all audiotapes again right before analyzing the transcripts and refamiliarized herself with the context of each interview and the content of the data as a whole. An inductive thematic analytic approach (24) informed by interpretive description (25) was applied to explore the potential patterns in the data. Each interview transcript was read individually in an active way, searching for potential patterns, and initial data-driven coding was performed. The initial codes were defined broadly to bring together a group of data extracts that could be related. As a result, the data were ultimately organized into 17 codes, such as the strengths of the services, the experience of communication, and the interpreter. At the same time, a "quotable quotes file" was created including the particularly powerful pieces of data to ensure that they would not be lost while also preventing them from dominating the evolving analytic process (25, p. 149). A file named "reflection notes" was also created to register the first author's reflections and thoughts while analyzing the data.
After organizing the data extracts into different codes, the analysis involved making sense of the relationships among the various groups by moving within and across the groups of data extracts within each code. A repetitive thinking and reasoning process and shifting attention from similarities between certain cases to the differences between other cases led to the deconstruction of the initial groups. By linking data elements together across the different codes and discarding some codes, data extracts were reorganized into six initial themes: 1. The alienation of immigrants; 2. communication between immigrant families and healthcare professionals; 3. gratitude towards the healthcare system; 4. the battle to access help; 5. access to information; and 6. prejudice as an extra challenge while navigating the healthcare system. Thereafter, the data within each initial theme were further analyzed, and subthemes were generated to give structure to the themes by elucidating the variation and details within the themes. For instance, three subthemes were identified within the theme "access to information": "lack of information", "challenges to accessing information", "facilitators of accessing information". Next, the initial themes and subthemes were reviewed by all four authors to ensure that the themes were appropriate with regard to the data set, that the data within the themes cohered meaningfully and that there was a clear distinction between the themes. Subsequently, the themes were refined; one theme that did not fit with the others was discarded ("alienation of immigrants"), and two themes were combined to form a new theme ("the battle to access help" and "prejudice as an extra challenge while navigating the healthcare system"). Finally, four themes were identified, and representative quotes were selected to generalize the descriptions of the participants' experiences. The first author discussed the identified themes with a non-involved peer, which contributed to further reflections and enhancing rigor of the final analyses.
The four themes were further interpreted in the context of previous literature. Although the different phases of the analysis are described here as being linear, the process of analysis was actually done by moving back and forth throughout the different phases.

Results
Each participant had a unique story, and their experiences of the services and challenges were diverse. However, four main themes were identified after analyzing the data: 1) immigrants' gratitude for the services, 2) communicating beyond language, 3) finding a way through the service system, and 4) accessing help as a battle.

Immigrants' gratitude for the services
The participants were mainly satisfied and grateful with regard to the services, especially the follow-up services provided by the pediatric rehabilitation centers. They experienced the follow-up services as continuous, predictable and well-organized. They also felt safe that their children were in good hands and would receive follow-up services from by caring and competent healthcare providers. Some participants were even cautious of talking about the challenges they had experienced while navigating the healthcare system because they were afraid of being perceived as ungrateful or demanding.
One participant explained how satisfied she was with her son's checkup routines and her ability to stay in touch with his physicians over many years. She expressed her trust in and gratitude for the healthcare providers as follows: They (the healthcare providers) have done the best they could do…I feel that one should not criticize and be very picky about things that are unnecessary because people who are ungrateful to humans are ungrateful to God, too. (P 9) A culture of gratitude and appreciation is a major part of the values that this participant, like many others in this study, grew up with and believe in. Thus, this participant, like many others, was initially hesitant to talk about what she had struggled with over the years while navigating the healthcare system. Some participants also experienced that the follow-up services had a holistic approach and included several important dimensions with regard to their children's development. They were satisfied with how their children's wellbeing and progress at school had been followed by the healthcare providers. Their experience was that the healthcare providers supported them in overcoming the challenges that their children faced at school by cooperating and participating in the school meetings. One participant explained his satisfaction with the services as follows: The participant was grateful for the way the healthcare providers approached her and her child calmly and with respect. She explained how she used to be very emotional in the beginning because this type of approach was quite unfamiliar to her. Furthermore, she explained how differently they used to be treated by the healthcare providers in their home country. She could remember the day that she was kicked out of the hospital because she complained about what she perceived to be wrong treatment of her child. She experienced that the healthcare providers did not listen to her at all. She explained how in their first meeting with the physician here in Norway, she did not talk because she was afraid of being treated the same way she was in her home country.
The participants' statements illustrate how the immigrant experience made them look differently at the services available to them in Norway. Comparing the services with those in their home countries made them even more appreciative of the Norwegian healthcare system, knowing that their children's needs were being met by qualified and empathic healthcare providers.

Communicating beyond language
The participants experienced communication with the healthcare providers differently; while some perceived it to be good or very good, others perceived it to be difficult or stilted. The experience of being misinterpreted by unprofessional interpreters, given the importance of the content of the conversation, was disturbing to the participants. They also felt insecure about how correctly the information from the healthcare providers was relayed to them. Participants stated that they did not give feedback to the healthcare providers about their experience with the interpreters, rather relying on the hope that they would have a different interpreter the next time. However, there was a participant who got frustrated having the same interpreter several times in row.
Participants also occasionally used to communicate with the healthcare providers through their spouses or their children, who could speak Norwegian. Although they did not complain about that, the following experience shows how damaging it could be to communicate through relatives in the context of the healthcare system. Although these participants were confident about their communication with the healthcare providers, there is no guarantee that they truly understood the conversation completely.
Speaking a language partially can be more challenging than not speaking the language at all. The reason for this is that neither the clients nor the healthcare providers ask for a professional interpreter, which could lead to the loss of important information. Some participants believed, however, that communicating in the same language was not enough to experience good communication in the context of the healthcare system.

20)
Time pressure, routine tasks and the surveillance program were perceived as challenges by this participant while communicating with healthcare providers. She also experienced medical terminology as an unfamiliar language, which affected her ability to completely follow the conversation with the healthcare providers. Participants' experiences reveal that communication in the context of the healthcare system depends not only on the communication skills of both the clients and the healthcare providers at an individual level but also on the dominant organizational culture at a system level.

Finding a way through the service system
Knowledge of the laws, their rights and the services they were entitled to was important to the participants. They experienced that healthcare providers did not inform them about the rules or their rights. Furthermore, language barriers made it difficult for them to access and comprehend this type of information themselves. One of the participants who also experienced that information was not made available to immigrants reflected on the possible reasons: Several participants also experienced that they received information randomly by meeting other parents on different occasions. Some others said that they received some information by being associated with different organizations for children with disabilities.
A participant who had tried to access the services, which they were entitled to, through their GP, shared her experience with us: The participant's statement highlights the importance of enabling the immigrants to not only navigate the services but also integrate into the society. As this participant noted, access to the services is an important element of the integration of immigrants into society.
Among the professionals referred to, social workers stood out. Participants met social workers mainly after their children were diagnosed. The participants were mostly satisfied with the information and support they had received from the social workers. Some of them noted that receiving the information was not helpful if they did not receive the guidance and help they needed to access and navigate the services. One participant shared her experience as follows:

Accessing help as a battle
Years of struggling to get help were what some participants had experienced and talked about. They felt that their concerns had been underestimated and had not been taken seriously by the healthcare providers. They described how they consistently had to insist on their need for help, and they were even wondering if they had been perceived as nagging or rude. They felt exhausted, and they experienced their attempts to get help as stressful, frustrating and demanding in terms of resources. They stated that the struggle over the years had affected their mental and physical health. Some participants described it as challenging to obtain access to the specialist healthcare system through GPs, who acted as gate keepers. One of them, who had felt that her worries about her daughter had been underestimated by their regular GP for several years, described her experience as follows: We really experienced from the beginning that she was very uneasy, cried a lot and was delayed in her motor skills, so we arranged an appointment with our regular GP, and she told us that there was no reason to worry… when she turned 3 years old, we still experienced challenges; then we arranged a new appointment with the GP, and she still said that it was normal until she turned 5

years old. (P 20)
She then explained how they kept being worried because they observed that their child fell a lot. Then, they decided to reach out to their regular GP again to obtain a referral to the orthopedic outpatient clinic. Although the GP referred their child to a specialist this time, she was not prioritized.
... but we did not receive any response, so we called them, and they said she was not a Five years of being sent back and forth to access help from the healthcare system was a burden on this family. This participant described how they could not pay enough attention to their son because they were focused on getting help for their daughter. She believed that this entire burden could have been alleviated if their concern had been taken seriously by the healthcare providers in the beginning. Another participant, who described access to help as a battle, was wondering if healthcare providers perceived the parents' concerns as excessive. She could remember how even after her child was finally hospitalized with a swollen and painful knee, it took almost two months before an orthopedist visited her and then referred her for further examinations. It had been several years since her child was diagnosed, but she still experienced her attempt to access help through emergency care and their regular GP as continually hitting a wall. One participant even generalized her experience of not being taken seriously by the doctor as a common pattern while seeking help in Norway. She further explained how years ago when her child was only 18 months, they had to take her to emergency care three times, and each time they were send back home. Lastly they had to take her to the hospital, where she went into coma and was hospitalized for a month. According to this participant the child was never the same after that, and they struggled to get the help they needed for several years. When interpreting and reflecting on their experiences with healthcare services, some participants brought up their position as immigrants. They believed that the way they were treated by the healthcare providers was important.
Some participants perceived that their skin color and religion influenced how they were treated and the services they had received. One of the participants who was frustrated about how a physician had alerted the child protective services immediately after she and her child had left the hospital, explained her feeling as follows: This statement shows how the physician could have handled the situation differently with making some clarity about her concerns, and making an informed decision. Interestingly, a study on Turkish-speaking families of children with disabilities who were immigrants in the UK showed how the parents appreciated the services they were given, even if they did not meet their expectations (30). Sandhu et al. (30) interpreted the immigrant families' appreciation as a reflection of their assumptions that health and social care support are privileges that can be withdrawn, rather than rights. This interpretation may also explain why some participants in our study were so grateful and hesitant to talk about the challenges they faced while navigating the services. Sandhu et al. (30) perceived that assumptions of the services as privileges, rather than rights, could also explain why immigrant families tended to respond to the challenges they faced with a stoicism, which was less usual among non-immigrant families.

Discussion
Despite their satisfaction with the follow-up services, participants in our study experienced several challenges while navigating the services. The challenges that the participants in this study spontaneously shared were mostly about accessing help during the time before their children were diagnosed. At that time, they felt that their concern had not been taken seriously by the healthcare providers, and they did not receive the help they needed. A former study conducted in the Netherlands also shows how mutual understanding and compliance is often worse in doctor-patient consultations with ethnic minority parents of pediatric patients than with their socially dominant counterparts (31).
The study suggests that the large differences in explanatory models of health and illness used by physicians and ethnic minority parents could be a reason for this poor mutual understanding. The same study found that consultations that ended without mutual agreement more often resulted in noncompliance with the prescribed therapy. As Van Eriksen et al. (32) in their book "Cultural difference in practice", also explain how some immigrants express their symptoms in a way that reflects their cultural background, which is minimally influenced by Norwegian medical thinking. These immigrants are unable to express themselves in a way that a Norwegian doctor is likely to take seriously. They struggle with getting the treatment they need over a long period of time. Eriksen et al. (32) pointed to how Norwegian doctors and immigrant patients used the same word to describe two different conditions. According to them, in these cases, misunderstandings persisted partly because the doctors never tried to determine what the patient truly intended to say, and their conversation was not constructive.
The participants in our study also expressed unmet needs for information about their rights, the rules, and the services available to them and to which they were entitled.
Sandhu et al. (30) found that although immigrant families of children with disabilities expressed gratitude for the services they were receiving in the UK, they felt that they were overlooked and not kept informed by service providers.
However, the experiences of needing information (33)(34)(35)(36)  Providing information about the services and their availability is a crucial determinant for parents to take an active role in the care process, obtaining appropriate help and decision-making (37)(38)(39). Research shows, however, that healthcare providers are not always aware of the resources available to the families of children with disabilities (34,40). In addition, parents may find it difficult to define and express their information needs and may instead wait for healthcare providers to address a subject (41,42). These challenges explain how some participants in our study experienced accessing information by chance.
While providing information itself seems to be a challenge for service providers (43), immigrant parents in our study expressed the need for guidance and support in addition to the information. Paperwork and the need for adequate writing skills, as well as knowing where to go or whom to contact, were challenges faced by several families in our study.
Consistent with our findings, Fellin et al. (9) found that social workers act as facilitators of health and social services by assisting immigrant families who are navigating the health and social systems. Interprofessional collaboration and connecting immigrant families with social workers is therefore important for their ability to manage navigating the health and social systems and connect with the appropriate resources (44).
Peer health navigator (PHN) interventions have also shown to be promising approach to breaking down barriers to care for people from underserved populations, such as immigrants and ethnic minorities (45). PHNs are individuals from the target population with the shared lived experiences who have received specialized training to support and help the others to navigate the complex and often fragmented healthcare delivery systems (45). Providing PHN programs which are adapted to meet the needs of immigrant families of children with disabilities may therefore reduce barriers to care for these families, specially the newly arrived families.
However, navigating systems with multiple organizational and access issues has also been indicated as being difficult according to parents belonging to the majority of the population (33).
While these common challenges can complicate gaining access to and navigating The use of medical terminology (48,49), the lack of intercultural communication skills, and the lack of training pertaining to working with families from diverse backgrounds were also communication challenges that immigrant families in our study faced. Healthcare providers may unintentionally devalue immigrant families' perspectives and perceptions, assuming that the 'Western way' is the 'best and only way' (50). According to Söderström (16), the communication between healthcare workers and minority families occurs in the context of the healthcare providers' perspectives and sense of reality. Healthcare providers need, therefore, to utilize culturally sensitive communication, which involves listening to and respecting the family, reflecting on their own knowledge and biases, and sharing their beliefs with the families with diverse backgrounds (51). Although ensuring equal access to public healthcare services for culturally diverse families of disabled children involves applying culturally sensitive communication (16), it is widely recognized that healthcare providers lack the skills to have culturally sensitive conversations with these families (52). Therefore, enabling healthcare providers to use culturally sensitive communication by equipping them with the required knowledge and skills is important (51,52).  This underlines the importance of listening and responding to the families' perceptions of their own resources, challenges and needs.

Study strengths and limitations
While previous research conducted in Norway and internationally has mainly focused on particular minority populations, the participants in this study were immigrant parents with varied linguistic, cultural and religious backgrounds. They came from different parts of Africa, Asia and Eastern Europe, which together compose the largest immigrant group in Norway. There is also little research exploring the experiences of immigrant families with pediatric rehabilitation services (9), as this research does.
This study did not reach newly arrived families because only immigrant families who had participated in an intensive pediatric rehabilitation program at a rehabilitation center were included. Applying for this program demands familiarity with the healthcare system and some language skills. Thus, the participants did not face the same challenges as newly arrived families might, and the results do not reflect on the challenges and experiences of newly arrived families when seeking assistance from the healthcare system in Norway. However, the participants described their experiences of navigating the services during the very first years of their time in Norway, and those were included, analyzed and reported in the results of this study.
Furthermore, Norwegian is not the first language of the first author (Interviewer) or the interviewees. This might have affected the quality of the produced data, despite the fact that the first author did her best to make sure that there was a mutual understanding of the interview questions and the responses.

Conclusion
This study was conducted to generate knowledge of how accessible and tailored the Norwegian healthcare system is from the perspective of immigrant parents of children with disabilities. The immigrant parents were mainly satisfied with the follow-up services provided by the pediatric rehabilitation centers, but they experienced several barriers while navigating the healthcare system. The barriers from the perspective of immigrant parents were associated with both the system and individual levels. At the individual level, the barriers were related both to family characteristics and those of the healthcare providers. Insufficient competence in the majority language, a lack of knowledge of the services and a lack of understanding of how to navigate those services were some of the barriers related to family characteristics. Applying medical terms, a lack of experience and intercultural communication skills, and perceived attitudes on the part of the healthcare professionals were among the barriers related to the service providers' characteristics. At the system level, the barriers were related to the use of interpreters who were perceived as being unprofessional, organizational routines, and insufficient time allotted for interactions with immigrant families. The lack of effective strategies to inform, empower, and enable immigrant families to manage navigating the complex and growing healthcare system was another barrier at the system level.
This study therefore highlights the importance of mobilization at both the individual and system levels. There is a need to reach out and educate immigrant groups to enable them to meet the complex demands of navigating the healthcare system in modern Norwegian society. Healthcare providers should particularly be aware of immigrants' need to be informed and supported, even though they may not ask for it, so that they can make  The project was registered with and approved by the Norwegian Centre for Research Data (NSD) and received permission for implementation with reference number 51764. The project was also submitted to the Regional Committees for Medical and Health Research Ethics (REK) but was considered to be outside the remit of the act on medical and health research and could therefore be implemented without the approval of the REK with reference number 2016/1764. Prior to participating, the potential participants received an information letter describing the study, the study purpose and that participation was voluntary. The letter also stated that they could withdraw their participation without giving any reason and that the participants' contributions would be unidentifiable in the final report. Furthermore, the potential participants received information verbally over the phone in simple language after they had received the letters and had the opportunity to ask questions if so desired. The participants gave written consent to participate in the study. The consent form was approved by the NSD.

Consent for publication
The participants were informed in writing and verbally that the findings would be published in scientific journals.
Availability of data and material The datasets generated and analyzed during the current study are not publicly available due to the need for participant anonymity but are available from the corresponding author on reasonable request.