Each participant had a unique story, and their experiences of the services and challenges were diverse. However, four main themes emerged 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:
I am satisfied with the follow-up program. You know for sure how the pediatric rehabilitation works; they follow the children’s health conditions, behaviors and schooling. (P 11)
This participant pointed out his appreciation of how the follow-up services took care of his child’s needs comprehensively.
The immigrant experience was highlighted when the participants praised the services. A participant explained that in her home country, her child could not even go to the ordinary school with the other kids, and they had to pay a substantial sum of money to buy her a wheelchair.
I'm satisfied with everything … we have different assistive devices and exercise equipment. She is riding, she is very happy, she goes to the physiotherapy, and she goes to the school, which is also important. We cooperate with the school and the hospital, and there is a lot of responsibility. (P 8)
She deeply appreciated the services, acknowledging that her child would not have the same opportunities in their home country because of her disability. She appreciated her child’s happiness participating in the different activities like other children. Similarly, several participants compared their experiences of services in their home countries with the Norwegian services, which reinforced their gratitude and satisfaction. Some participants appreciated being involved and informed about their children’s condition while receiving well organized follow-up services, which was not common in their home countries.
They always plan what the next step is going to be and how. The doctor discusses her (condition), and they inform us of what they think has to be done. We are grateful for it because not all countries give these opportunities. (P 1)
Coming from countries in which the doctor-patient relationship is based on the idea that doctors exert professional authority through medical expertise, the participants appreciated the opportunity to be involved in the physicians’ decision making and follow-up procedures. Some participants experienced being involved in this process as informative and educational. Participants also appreciated how attentive the healthcare providers were with the children and how well they handled and took care of them. One participant explained how she, as a newcomer to Norway, experienced their first meeting with the healthcare providers:
The way they talk to the kids; the kids feel so safe here. They are not afraid. I don’t know; it was a total shock. And in the beginning, when they started talking, I wanted to cry. Because I felt like a human being, like a real human being. This was really new to me. Also when you feel that everyone will help you ... I'm so grateful. (P 16)
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.
Several participants experienced communication difficulties because of language barriers, especially during their first years in Norway. They experienced communicating through the interpreters as challenging and emphasized how disturbing and frustrating it was to communicate through interpreters, whom they perceived as unprofessional. A participant, who was dependent on having an interpreter to communicate with the healthcare providers, shared her experience as follows:
Sometimes they (healthcare providers) order a good interpreter, but sometimes they order an interpreter who misinterprets! Then, the healthcare providers misunderstand, and it bothers me for the rest of the day… It is important that they order a professional interpreter… It is about a human life. (P 10)
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.
They found out that the baby was not normal when they did an ultrasound (during pregnancy); however, my husband asked them to not tell me about it because it could upset me! Also, when the baby was born, his face was different! A week after birth, the doctor told me about the baby’s condition. (P 9)
While interviewing this participant, her husband confirmed that he knew about the baby’s condition before his birth. Although the participant justified her husband’s decision to not inform her, the fact that she the right to know about the baby’s condition during her pregnancy is undeniable. It is the healthcare providers’ responsibility to ensure that their clients have understood the content of the conversation and to use a professional interpreter instead of relatives.
On the other hand, there were participants who were satisfied with their communication with the healthcare providers despite the language difficulties. They explained how their ability to ask questions, the healthcare providers’ patience, and their ability to explain contributed to overcoming language barriers while communicating. A participant with basic language skills who was satisfied with the communication shared his experience as follows:
We had good communication. We did not have communication difficulties! But if I do not understand what they say in Norwegian, I'm not just going to pretend I understand. I have to understand what this is about ... I ask them to explain. (P 11)
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. They believed that the healthcare providers’ engagement, empathic listening and even their body language influenced the experience of the communication. A participant who could speak a little Norwegian explained what he believed about communication:
I remember there was a professional doctor at the hospital, where we communicated through an interpreter, but it was still difficult to get to the point and communicate. Conversely, there was a social worker who was also professional, and we understood each other quite well and were on the same page, even though we did not use an interpreter... I think culture plays an important role. Possibly, the doctor has not been in touch with immigrants like me, perhaps we communicate differently, maybe they have been educated differently… (P. 6)
This participant noted culture and experience as important dimensions of communication. To him experiencing good communication was not only about speaking the same language but also about the healthcare providers’ intercultural communication skills because culture and communication are strongly intertwined. One of the participants even perceived that belonging to different cultures affected the communication with healthcare providers by making both parties more cautious than they might otherwise be. Some participants also noted how the dominant organizational culture, especially time pressure, influenced communication despite management of the language barrier. A participant who speaks Norwegian fluently shared her experience with us:
Even though we are physically present, mentally we are almost not there, because it is an unfamiliar language and things happen very quickly, and it is not natural to stop very often and ask them what something is, because they have to go through everything in an hour and a half …it's too short a time… the last few times, it became more like writing what they need in relation to the CPOP (The national Cerebral Palsy Surveillance Program). It was the program that was the focus rather than what we would need in the future. (P 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 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:
There is no information, or if there is, it is hidden, maybe it is in Norwegian. I don’t know, but a lot of information is not readily available to immigrants, I don’t know why. Perhaps the health caregivers just assume that you know what to do or where to get the information from. (P 19)
This participant’s statement reveals the need to make information available in different languages. Furthermore, healthcare providers need to be aware of the importance of informing and enabling immigrant families who are trying to navigate the services. 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 general practitioner (GP), shared her experience with us:
We have experienced that many healthcare providers, even our regular GP, who is absolutely fantastic, do not have information about our rights… So I think if healthcare providers who are supposed to provide information to us do not know about it themselves, it would be very random how multicultural families get access to information. (P 20)
This participant noted the importance of being prepared as a healthcare professional to provide the information that immigrant families need to access the services that they are entitled to. Lack of information about the services available and how to access them limited the participants’ abilities to navigate the services. It was not easy for some of them to know what to ask healthcare providers about either. Some participants stated that the healthcare system was structured in a way that only benefited privileged clients who were already able to participate fully. They emphasized the importance of tailoring the services to different groups in society to offer accessible and equal services to the entire population. A well-educated participant who defined herself as a resourceful and well-integrated citizen noted the need to enable the immigrants she defined as disadvantaged:
There are immigrants who have less knowledge and do not know what to ask about. They do not know which services are available, so maybe it would be good to inform them… I think society expects that this group of immigrants will integrate well, but the society is responsible for informing them. (P 7)
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:
I was in touch with a social worker earlier; she told me about our rights, and how to access the services … I cannot write very much, like proper letters, so after receiving the necessary medical documents from the GP, I used to go to the social worker and she helped me with that. (P 15)
As this participant noted, navigating the services demands special skills, such as an appropriate level of writing skills, to apply for services. Application letters have to be well documented and convincing. The participant used the social workers to not only obtain the information but also navigate the services. Some participants, however, experienced that the information provided by social workers was not comprehensive or continuous. Despite the fact that the participants’ need for information was continuous as their children grew up and entered new stages of development, their relationship with the social workers was not continuous. They stated that they met the social workers only a couple of times in the very early years after their children were diagnosed. Considering that family situation and healthcare options vary over the years, the participants’ need for information was not completely met by the social workers either.
- Accessing the 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 priority.... Again we went back to our regular GP, it was already over one year later, so she sent a reminder of the referral … then we got an appointment at the orthopedic outpatient clinic, and the physician recognized what was wrong, so she sent us to the children's department at the hospital immediately.... She was 5 at the time. (P 20)
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 experienced her attempt to access help through 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.
We used to receive an appointment with the doctor. We went there and talked to the doctor, but as you may know, he kept saying that everything is fine. As you may know in Norway, the doctors always say that everything is fine. (P 5)
Some participants felt that healthcare providers did not always pay attention to their concerns or were not interested in listening to their worries. They described how healthcare providers used to interrupt them or change the subject of the conversation, which they might have thought to be irrelevant. One of the participants, who had experienced his worries about his family’s situation not interesting healthcare providers, described it in this way:
I have experienced that it is not important for them to know or hear about my financial situation or about my residential situation, or when I am talking about transport, I have noticed that they do not care. In my opinion, our financial and residential situation is related to my children’s health, but they do not see it, they do not understand it. I have always talked about it to my regular GP... (P 11)
This participant felt that the healthcare providers ignored and overlooked what this family truly struggled with. He believed that the healthcare providers did not consider his worries to be of interest or relevant to their jobs. He then described how exhausting it had been not to receive timely help:
…The problem is that it takes so long, you get help when you have become completely exhausted. You have to approach them and complain again and again, they do nothing until you fall down ... then they will help you. (P 11)
He finally described how the demanding and stressful process of getting help over the years had caused him a lot of stress and disturbed his mental balance. This type of experience among the participants underlines the importance of listening and responding to the families' perceptions of their own resources, challenges and needs. These experiences highlight the need for a coordinated approach to the assessment of need and the provision of services appropriate to all aspects of the family as a whole.
Language barriers and lack of knowledge of medical conditions made it even more challenging for some participants to get timely help. One participant, whose daughter suffered from seizures for several months before she received help, shared her frustration as follows:
Every time I went to the hospital, I explained how she used to lose consciousness and started kicking and how disturbing it was for her. Every time I told them, they replied that it has something to do with her nerves. (P 10)
She explained that she did not know anything about seizures, and this condition was quite unfamiliar to her. The participant’s difficulty in describing her child’s condition precisely caused significant delays in receiving a proper diagnosis and specialized services for her daughter. The participant explained how, after several months of suffering and trying to navigate the healthcare system, her daughter finally received the treatment that she needed. This family’s experience illustrates how important it is for healthcare providers to be aware of language barriers and inadequate knowledge about medical terms among immigrant families. Being curious as a healthcare provider and paying enough attention while interacting with immigrant families would prevent some families from experiencing what this family had been through.
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. One participant explained how her regular GP refused to give her a referral for X-ray, despite the fact that she was suffering from back pain. The GP considered it unnecessary and a waste of tax money. This participant referred to her own experiences at the same time as she referred to attitudes towards immigrants in general:
I am wondering, if the same happened to an ethnic Norwegian, would it be treated the same way?... It was her attitude, that it was a waste of tax money… So this was a special attitude that I can speculate about. ...I think there is a lot of discrimination, and having a child with a disability causes a lot of challenges, being multicultural in addition, it becomes twice as much. (P 20)
Being an immigrant and raising a child with a disability are experienced as particularly challenging by immigrant families because of discrimination. Some participants also perceived that their skin color and religion influenced how they were treated and the services they had received. Thus, healthcare providers must be aware of their attitudes while interacting with a group of people, as immigrants have experienced many years of stigmatization and discrimination in society. This would be a step toward providing the services that are available and appropriate for the whole population, regardless of ethnicity, religion, function or social status.