Navigating the health-care system in community: Perspectives from Asian immigrant parents of children with special health-care needs

Abstract

Children with special health-care needs (CSHCNs) face notable barriers to health-care access and to receiving quality and family-centered care, despite higher health-care utilization rates. Within the population of CSHCNs, there are significant inequities in health-care quality impacting immigrants who have migrated to the United States. However, little is known about the experiences and needs of Asian immigrant families who have CSHCNs. This study aimed to explore how Asian immigrant parents of CSHCNs view their child’s health-care access, quality, and utilization. We conducted semi-structured qualitative interviews with 22 Vietnamese- and Cantonese-speaking parents of CSHCNs. Participants were recruited through community partners. Interviews were transcribed, translated, and coded using content analysis. Participants were generally satisfied with their children’s care and had strong relationships with their primary care doctors who were often culturally ‘matched’. However, participants experienced several important and culturally specific barriers, including gaps in their understanding of the health-care system, language barriers, and a sense of alienation. Parents frequently turned to informal and community supports for assistance in navigating the US health-care system. Further research to understand the drivers of health disparities and policy level solutions is warranted.

Keywords

Asian immigrants children with special health-care needs disparities immigrant health

Introduction

Children with special health-care needs (CSHCNs) are a known disparity population with significant vulnerability (Ghandour et al., 2013). CSHCNs have higher rates of health-care utilization, due to their often complex care needs (McPherson et al., 1998; Newacheck et al., 1998; Newacheck and Kim, 2005). However, compared to children without special health-care needs, CSHCNs have higher rates of unmet need for all types of medical services (Aruda et al., 2011; Hill et al., 2008; Newacheck and Kim, 2005; Silver and Stein, 2001), including specialty care (Ngui and Flores, 2007), mental health services (Ganz and Tendulkar, 2006; Inkelas et al., 2007), therapy services (Benevides et al., 2015; Dusing et al., 2004), respite care (Neff, 2009), communication and mobility aids (Dusing et al., 2004), and dental care (Paschal et al., 2016). The higher needs of CSHCNs sometimes negatively impact parental employment (Kuhlthau and Perrin, 2001; Parish and Cloud, 2006) and overall family financial health (Kuhlthau et al., 2005; Parish et al., 2010). For these reasons, ensuring coordinated, family-centered and culturally responsive care for CSHCNs is a public health priority (Strickland et al., 2011), with the potential to improve outcomes for this vulnerable population (Kou et al., 2011).

Within the large population of CSHCNs, children who belong to minority racial and ethnic groups face important inequities in health-care access, quality, satisfaction and outcomes, as compared to both White CSHCNs and children without disabilities (Emerson, 2012; Heer et al., 2012; Khanlou et al., 2017; Magana et al., 2012; Ngui and Flores, 2006; Parish et al., 2012). For example, there are significant racial and ethnic disparities in age at diagnosis of developmental disabilities like autism, with Black and Latino children receiving a diagnosis – and thus important services and supports – later than their White counterparts (Mandell et al., 2009). Black and Latino CSHCNs are also more likely than White CSHCNs to have unmet health-care needs (Ngui and Flores, 2007) and to encounter delays in accessing needed health care (Rosen-Reynoso et al., 2016). Similar effects have been noted for CSHCNs whose parents migrated to the United States and lack English-language fluency (Eneriz-Wiemer et al., 2014; Heer et al., 2012; Khanlou et al., 2017). In addition, low-income parents of CSHCNs, and those who live in states with higher levels of economic inequality, face higher financial costs associated with caring for their loved one, resulting in additional stress (Parish et al., 2012).

While health disparities among Asian-Americans have been underresearched (Holland and Palaniappan, 2012), we have evidence demonstrating that Asian-American children who do not have special health-care needs face disparities in health-care quality, access, and utilization, as compared to their White, non-Latino peers (Stevens and Shi, 2003; Yu et al., 2010). Related to mental health care, Asian-American children and adolescents had higher rates of using emergency room mental health crisis services and were less likely than their White peers to access follow-up mental health care, suggesting that routine mental health care may be less available or accessible to this population (Snowden et al., 2008). While some studies report lower disability prevalence among Asian-American children, this is likely due to issues related to data collection (Holland and Palaniappan, 2012) and low rates of service utilization among Asian immigrants (Waldman et al., 2015).

Differential access to services may explain preliminary findings of higher levels of stress among Asian-American parents of children with developmental disabilities, as compared to White parents of children with developmental disabilities (DeLambo et al., 2011). Like other immigrants, newly immigrated Asian parents of CSHCNs may struggle to learn and navigate the American health-care system, particularly if they lack English-language proficiency (Javier et al., 2010). In contrast, high acculturation was very positively correlated with having a usual source of care among Asian-Americans in California (Chang et al., 2015), suggesting that new immigrants may face more difficulty in understanding and using the health-care system. They may also face cultural challenges or conflicts with American health-care providers (Baker et al., 2010; Choi and Wynne, 2000) and may not understand how to advocate for their child’s needs in an unfamiliar system (Huang et al., 2004).

While quality of and access to health care is widely recognized as an important determinant of health (Huang et al., 2004), little is known about the experiences of Asian immigrant families who have migrated to the United States, in accessing care for their children, and whether these experiences might drive disparities. Therefore, we undertook a qualitative study of how Asian immigrant parents of CSHCNs view their child’s health-care access, quality, utilization, and experiences. We also examined parents’ experience of facilitators of and barriers to quality care, as defined by the parent.

Methods

Sample

Participants in this study were 22 parents of children with CSHCNs who spoke either Vietnamese or Cantonese and who identified as Asian immigrants. The 22 participants ranged in age from 30 to 57, and had resided in the United States for a period of between 4 and 34 years, with a median duration of residency of 14 years. Participants were recruited in partnership with a large community-based organization focused on CSHCNs and their families, with an extensive support program serving Asian-American CSHCNs and their families. This community agency has support groups for Vietnamese and Chinese immigrants having children with special needs. We chose to focus on these two subgroups because of their size in the community as well as our community partners’ existing relationships in the community. Program staff made announcements during parent support groups and classes and approached eligible potential participants and informed them of the option to contact the research team and schedule an interview. Participants were informed that the goal of the study was to better understand the experiences of Asian immigrant families and their CSHCNs and to make recommendations to improve these experiences. Potential interviewees were aware of the fact that the researchers were coming from an academic institution and were independent of the community-based organization.

Data collection

Interviews were semi-structured and followed a standardized interview guide that first collected basic demographic data and then asked participants about their experiences accessing health-care and other services for their child’s met and unmet needs and their perceptions of the quality and cultural competency of their child’s care. The interview questions were open-ended to allow participants the flexibility to best represent their experiences in their own words. The interview protocol began with ‘grand tour’ open-ended questions such as ‘What are challenges and barriers to health-care access, service utilization, and quality of care of your child?’ However, as participants identified issues, we asked more focused questions to address the most relevant concerns for these parents, such as reasons for having unmet needs for care, lack of a usual source of care, problems getting referrals, and lack of family-centered care. In addition, we asked questions about parents’ immigration status and pattern and the availability of supports to navigate the health-care system of their child in the United States. Interviews were conducted in Vietnamese or Cantonese by a native speaker of that language. Interviews were audio recorded, transcribed, and translated by professional translators.

Data analysis

Analysis was conducted in English, using the translated transcripts, and consisted of deductive and inductive methods, using the grounded theory method (Corbin and Strauss, 2008). First, two researchers independently coded four transcripts, including two from each language group, using open coding and memo-ing to develop a draft codebook. Definitions were collaboratively assigned to each code, and the codebook was further expanded and refined by the coders. Several initial codes were also compressed during the coding process. After a working draft of the codebook was created, coders used content analysis to assign the remaining transcripts to existing codes. Intercoder disagreements were discussed and resolved to achieve consensus. Inductive second-level coding was then completed in order to generate theories. This project was approved by the institutional review board of our institution.

Results

We conducted a total of 22 interviews. While parents of all genders were eligible to participate, all interviewees were mothers. Table 1 describes the demographic characteristics of our participants in detail. As shown, participants were mostly of low income and their children were publicly insured, though some participants had private co-insurance or insurance for their children. Participants had a range of educational attainment, from middle school to graduate degrees, with a majority of participants reporting a high school education. In addition, most of the participants had received their education in their countries of origin except for a few participants who had some college experiences or are attending a graduate school in the United States. While some participants described themselves as fluent or near fluent in English, 50% reported that they spoke little to no English and 45% rated their English level as medium. Interviews were conducted in Vietnamese (11) and Cantonese (11) by native speakers.

Table 1.

Study participant characteristics.

	Age	Time in the United States	Primary language	Family income	Educational attainment	Self-reported English level	Insurance type
Participant 1	57	12 Years	Vietnamese	<$25,000	Middle school (Vietnam)	Medium	Public only
Participant 2	50	19 Years	Vietnamese	<$25,000	Some college (United States)	Medium	Public and private
Participant 3	56	19 Years	Vietnamese	<$25,000	High school (Vietnam)	Low	Public only
Participant 4	45	9 Years	Vietnamese	<$25,000	High school (Vietnam)	Very low	Public only
Participant 5	50	14 Years	Cantonese	≥$25,000	High school (China)	Medium	Public and private
Participant 6	–	4 Years	Vietnamese	≥$25,000	4-Year college (Vietnam)	Medium	Public only
Participant 7	38	14 Years	Vietnamese	<$25,000	High school (Vietnam)	Medium	Public only
Participant 8	36	11 Years	Vietnamese	<$25,000	High school (U.S)	Medium	Public and private
Participant 9	41	15 Years	Cantonese	≥$25,000	4-Year college (United States)	Medium	Public only
Participant 10	55	5 Years	Vietnamese	<$25,000	Middle school (Vietnam)	Very low	Public only
Participant 11	35	34 Years	Vietnamese	≥$25,000	Graduate school (United States)	High	Private only
Participant 12	40	16 Years	Vietnamese	<$25,000	High school (Vietnam)	Medium	Public only
Participant 13	–	–	Vietnamese	<$25,000	High school (Vietnam)	Medium	Public only
Participant 14	30	4 Years	Cantonese	<$25,000	4-Year college (China)	Medium	Public only
Participant 15	50	23 Years	Cantonese	≥$25,000	None	Low	Private only
Participant 16	45	15 Years	Cantonese	≥$25,000	Middle school (China)	Medium	Private only
Participant 17	33	6 Years	Cantonese	<$25,000	Middle school (China)	Low	Public only
Participant 18	45	13 Years	Cantonese	≥$25,000	2-Year college (United States)	Medium	Public only
Participant 19	43	11 Years	Cantonese	≥$25,000	High school (China)	Low	Public and private
Participant 20	53	17 Years	Cantonese	<$25,000	2-Year college (China)	Low	Public only
Participant 21	39	12 Years	Cantonese	<$25,000	High school (China)	Low	Public only
Participant 22	42	18 Years	Cantonese	<$25,000	High school (China)	Very low	Public only

Note: ‘–’ symbol indicates that information is unavailable due to missing data.

Table 2.

Relevant quotes for theme 1: Barriers to and facilitators of care.

Theme 1: Barriers to and facilitators of care
Selected subthemes	Quotes
Cost/insurance as a facilitator of needed care	‘This is a society that cares and has a lot of concerns so within the (public insurance company), we have a case manager that calls and checks on [child] every week’. (Participant 2)
Cost/insurance as a facilitator of needed care	‘Because they were born in the United States, they are lucky because the government pays for the surgeries’. (Participant 15)
Cost/insurance as a barrier to needed care	‘The insurance covers [needed service], so you can’t complain much about the insurance. But when you go to the company to get service, you wait for half to one year because most of the time, everyone is on the waiting list’. (Participant 9)
Long wait times and insufficient time with their specialists	‘We don’t get much time, but that might be the same for everyone normally. I don’t know’. (Participant 9)

Note: Quotes are identified by the participants’ number.

Table 3.

Relevant quotes for theme 2: Culturally specific barriers to care.

Theme 2: Culturally specific barriers to care
Selected subthemes	Quotes
Discrimination in care	‘The doctor told me that he/she couldn’t get payments. I don’t know English, so I asked the doctor to write something. Then I took it to the insurance company. There’s a Chinese-speaking person to help me. He/she just took a look and said, “Oh, this person is just that mean.” That person is either Caucasian or Hispanic. Right after looking at the paper, the Chinese staff said, “How can someone be that mean. This person is just that mean, and you are not the first one.” He/she has called and talked on behalf of me, but there’s still no approval’. (Participant 15)
Primary care provider’s lack of knowledge about disability	‘They (doctors) don’t guide us with any directions. For example, if I say I want to find a special program for my son, they don’t know. I think maybe my son should be seeing the geneticist, but they just say it’s normal. When I ask why my son is very slow and isn’t able to study, the interpreters ask whether the doctor could suggest a geneticist to understand his disability…When I came back and ask them…they just said nothing came out and everything is fine’. (Participant 6)
Primary care provider’s lack of knowledge about disability	‘Frankly speaking, I understand the condition more than the doctor does…. Basically, we don’t get from there any useful information about the special condition’. (Participant 9)
Higher expectations of primary care providers and dependence on them	‘I feel that the primary care doctor that sees my daughter. He doesn’t have enough knowledge or understanding about the autism so I really hope that later on, the primary care doctors should have more understanding about autism so that they can refer families to more specialized service’. (Participant 13)
Lack of understanding of disability and evaluation and assessment in their countries of origin	‘Just like in China, he would be regarded as just being quiet and an introvert and would grow out of it. Actually that’s not the case (here)’. (Participant 22)
Lack of connection between systems and the resultant need	‘We are the aggressive type, and my child gets a lot of them. Many of my friends get a lot less than we do. They have several problems. First, they don’t understand English. They don’t know how to contact hospitals because there are so many hospitals. Some accept this [insurance], not accept that. When the insurance is accepted, we have to deal with the insurance company. It is very complicated. This is the first big problem. The second problem is transportation. For example, the husband goes to work, and the wife doesn’t know how to drive. This kind of situation is a big problem…’. (Participant 9)

Note: Quotes are identified by the participants’ number.

Table 4.

Relevant quotes for theme 3: Navigating the system as a newcomer or long-term resident: The importance of community?

Theme 3: Navigating the system as a newcomer or long-term resident: The importance of community	Quotes
Difficulties with navigation	‘I don’t really know how the system works here’. (Participant 6)
Difficulties with navigation	‘I learned about it (the health-care system) on my own in the dark. We fumbled our way to find them out by asking around’. (Participant 18)
Community-based solutions, including formal and informal supports	‘There was the time I took my son to the dental clinic, where I saw a child who, I thought, had the same symptoms that my son had. At that time I was to the point of being unbashful and said to the parent that I thought her child didn’t seem to be very normal. She was very frank and said that her son also had [disability]. Then I chatted with her; she understood’. (Participant 5)

Note: Quotes are identified by the participants’ number.

Table 5.

Relevant quotes for theme 4: Cultural differences and their impact on relationships with primary care doctor.

Theme 4: Cultural differences and their impact on relationships with primary care doctor
Selected subthemes	Quotes
Culturally competent health care	‘We can at least communicate in the same language. There is no barrier. I can express myself and understand what they say’. (Participant 16)

Culturally incompetent health care	‘Especially for [child], there is an Asian doctor…. But I feel that her way is very Americanized’. (Participant 11)

Note: Quotes are identified by the participants’ number

Table 6.

Relevant quotes for theme 5: Language barriers and their impact on relationships with the health-care system.

Theme 5: Language barriers and their impact on relationships with the health-care system
Selected subthemes	Quotes
Miscommunication and missed opportunities	‘I really believe that it may be a problem for other families, such as where to see a doctor, especially for parents who don’t speak English…. Many mothers cannot speak English, hence cannot communicate with the doctors in the hospital’. (Participant 9)
Interpreter quality and availability	‘Doctors at [facility with a large Asian immigrant population] are very good, but it’s difficult to get an interpreter. Seven to eight times out of ten, interpreters are provided over the phone. Some telephonic interpreters speak lousy English, and their interpretation is so messy that I don’t feel like talk(ing)’. (Participant 22)
A sense of feeling underserved or lost	‘There are so many different things that I don’t understand’. (Participant 7)

Note: Quotes are identified by the participants’ number

Qualitative analysis identified several important barriers to and facilitators of care, some of which overlapped with general population experience, and some which were more unique to Asian immigrants and their CSHCNs, such as navigating the system as a newcomer. These culturally specific barriers to care were often addressed through the use of community and informal supports, but also impacted participants’ relationships with their health-care providers. Language barriers, including issues with interpreters, impacted participants’ overall quality of care. These themes will be presented in thetables 2-6 and discussed in turn below.

Barriers to and facilitators of care

While there appeared to be some unique, culturally mediated barriers specific to Asian-American families and/or immigrants, many of the barriers to care identified by parents in this study are well-documented in the general population. These include barriers related to transportation, scheduling difficulties, wait times, and balancing multiple familial needs, such as employment, school, and other children. Some families also reported a lack of sufficient specialized providers, such as psychiatrists. While these challenges can complicate access to care for anyone, they may also interact with culturally specific barriers to and the difficulties of being a newcomer to exacerbate difficulties.

Cost/insurance

While a few families identified costs as a barrier, the majority of participants felt that their publicly funded insurance provided them with desired access to needed services. Many families described services covered by their insurance plan as important for their child’s development or well-being and expressed gratitude for the caring that they perceived as engendered by their insurance as well as what they perceived as the US’ commitment to their children.

At first we got (public insurance type), which is specifically meant for children with emotional problems or autism. That insurance helps me a lot. Because of it, I can get mentoring help and [needed service]. I have those people help me, even for psychiatry. Because of [public insurance type], I have more choice of providers. (Participant 5)

However, while public insurance was generally viewed positively as a facilitator of needed care, several participants described prior difficulties learning about their insurance coverage and understanding the services that were available to them.

I thought that we could not have [public insurance] because I have [private insurance company] (through participant’s job). I didn’t know we could have had [services available through public insurance] which therefore caused a delay (of) over 10 years long. (Participant 5)

While this 10-year delay was the longest wait time shared with the interviewers, long wait times for services were a significant challenge that participants felt had potentially detrimental impacts on their children.

It (the wait) was a big problem…. we had to wait for a long time, almost half a year. Waiting is an issue. When we first noticed [child’s] problem, he was 20 months old. Because of the very long wait, we applied (for services) as soon as possible. For autism, you need to treat and intervene as early as possible to be effective. The sooner the better. Therefore, this is a problem-here we waited half a year. (Participant 20)

In addition to the length of time between requesting and receiving specialized services, many families also experienced long periods of time in the waiting room before appointments, for both specialists and interpreters and then felt they received insufficient time with their specialists.

Culturally specific barriers

While only two participants named discrimination in care, cultural considerations and differences were an important consideration for many families. Interestingly, while one parent stated that they experienced discrimination related to their race in health-care settings, another parent was unsure if her experience of being treated differently was due to her culture or to her child’s disability.

I dislike [major urban medical center] very much. There is open discrimination by the doctor. I’m not sure whether it is against the Chinese or (my) child’s autism. It’s blunt and lets you feel it. (Participant 9)

Some parents also expressed the belief that their primary care provider lacked specific knowledge about their child’s condition, and other parents expressed frustration and mistrust related to the lack of medical certainty or a ‘cure’ for their child:

For typical kids, a physical checkup is easy. But for a child with disability, I think the doctor should have more professional training so they can understand more about the disability or genetics or something so that at least when they do check my son who has special needs like this they can at least recommend or refer me to specialists instead so that I can be more aware…. (Participant 6)

These examples of frustration and mistrust toward the primary care providers were closely linked to higher expectations of primary care providers and dependence on them due to the cultural and language barriers to navigate a complex US health-care and special education system, which requires multiple medical documents related to the child’s disability from health-care providers among these Asian immigrant parents. For example, many participants expressed a strong desire to get a coordinated and comprehensive care and education plan and detailed advice for their child from their primary care doctors who were often culturally ‘matched’.

The primary care doctor does not have any information at all so it’s just not a really good. See as you know when I came in the beginning…when I first came for the first visit they basically just see a physical daily check-up and I just asked the primary care doctor to see, yeah now my child does have some problem like that. I need to find some kind of special education but he doesn’t know anything. So basically I have, I myself I have to go around and I think that I need to get some kind of documents from the psychologists to be able to refer him into some kind of special education program. (Participant 6)

Notably, several parents noted significant cultural differences in both their understanding of disability and service availability and expectations of CSHCNs in the United States as compared to their home country.

This quote is representative of the reports of many parents, and was a mother’s response to being asked about her child’s formal diagnosis, which was made in the United States.

In Vietnam, before he came here, it was because of math, he could not pass. And when they notified us that he had to stay back, we kept him at home for a couple of years before we came to the US. They just thought that he could not learn and they just let him stay back. It’s not like in American, where they talk about the syndrome. (Participant 10)

This lack of understanding of disability and evaluation and assessment in their countries of origin caused significant delays in getting proper diagnosis and receiving specialized services for the children of Asian immigrants.

Another important barrier to care was lack of connection between systems and the resultant need to navigate an unwieldy system, often in English, which participants spoke at varying levels. Navigating between systems and advocating for one’s needs were related to both disconnects in the system and the higher health-care needs and utilization of CSHCNs. Many participants described visiting multiple specialists, attending weekly or monthly appointments and generally investing significant time in their child’s interactions with the medical care system. They reported needing extensive navigation skills, which were often facilitated through community and informal supports, discussed below.

Navigating the system as a newcomer or long-term resident: The importance of community

For some parents, these difficulties with navigating a complex system were compounded by aspects of their immigrant experience, such as isolation and increased dependence on more acculturated relatives, and a lack of knowledge of a system that is significantly different from the system in their home country. The following quotes represent some of the issues encountered by newcomers.

I feel that in the US, the way people live is so strange. Because everything they want to do-my sisters in [state], it just seems like they are so structured in a mold that it’s so very difficult. I felt very uncomfortable because I had lived freely in Vietnam. Just because they sponsored me, I felt I had to listen to them, according to their arrangements. (Participant 10)

The specific difficulties with navigation were often addressed through community-based solutions, including formal supports like the services offered by culturally matched social workers and an Asian community association, as well as informal supports provided through connections to other Asian parents of CSHCNs. Both formal and informal supports were viewed as lifelines by many parents, as described below by this participant, regarding her culturally matched social worker:

Like if I got a bill at the hospital, I give it to [my social worker] to take care of…she knows a lot. She helps take care of my family…. We rely on [social worker]. (Participant 10)

For long-term residents, they described bonding with each other over shared experiences and challenges. In fact, many participants described their bonds with other parents as a rare opportunity to be understood, as a member of their cultural group, as an immigrant, and as a parent of a CSHCNs.

Mostly the parents of special education (children) tell each other what is good for the children. We are like a sorority…. We communicate with each other. If there is any entertainment for the children, we take our children and go together to help them. Besides, the Chinese community is not big and only in [major city]. Therefore, we rely on the support from each other and the friendship among us. (Participant 16)

As well as providing needed emotional support and understanding, these community connections helped parents learn to successfully navigate the system. For example, many parents credited community-based classes run by an Asian community organization for explaining the system to them in accessible, culturally appropriate language.

They (the classes) are very helpful and give a very good feeling to the parents. (Participant 20)

Community resources were often the first line of response to issues that arise, and parents expressed confidence in the knowledge of these supports in navigating the system. For example, a participant who was experiencing challenges getting a needed service stated:

I plan to ask them at [community agency] this Friday. Every third Friday of the month, there is a meeting with Professor [name] for all the parents who need special services. I will ask them how to solve this problem and will find help (at the next meeting). Right now, I don’t know what to do at all. (Participant 20)

These community connections also empowered parents to advocate for their child and to continue working to get their child’s needs met within the system.

It’s even more difficult when we need to find ways to help our children. Therefore, we as parents rely on the help from each other. (Participant 16)

Cultural differences and their impact on relationships with care providers

Aspects of the immigrant experience, and culturally related needs, also played an important role in participants’ expectations for and relationships with their health-care providers. For example, many of the long-term residents reported long-standing relationships with their children’s health-care providers. Generally, participants focused their comments on their child’s primary care doctor. These doctors were often based in a community health center. This quote was typical:

She is really attentive and checks everything including things I don’t even think of checking. She suggested checking [child’s] hearing because his dad is Deaf. I didn’t think of doing that before…. when [child] was really young, the doctor told me to tell her if [child] still didn’t speak when he turned 18 months old, so that she could refer us to a specialist. She sets everything up for us. (Participant 19)

For many participants, their child’s primary care doctor provides medical care, but were also viewed as a source of support in navigating complex systems and generally serving as an advocate for the child and family. Interestingly, advocacy provided by primary care doctors and medical office staff was often perceived as associated with the presence of a long-standing relationship, rather than as an expected function of the role of health-care providers. As described by a participant:

Because my kids were born here and have been coming here for more than 10 years, the doctors and nurses follow up with everything for us. (Participant 15)

These nonmedical navigation and advocacy-related supports were particularly important for parents who did not speak English well. For many parents with low English proficiency, primary care doctors were important allies in meeting their children’s needs:

I don’t speak English. While my son’s school wanted to have my son transfer to another school, he wrote me a doctor’s letter to prove my son’s need to stay in this school…. He helped me. (Participant 17)

These supports were often also attributed to the personal relationships between the primary care doctor and the family, rather than viewed as an expected role of health care. This is an important distinction, especially given the challenges felt by newcomers to the country and the above-described culturally different perceptions of disability and the health-care system’s role in their child’s life.

There was a high degree of cultural matching and perceived cultural competency on the part of health-care providers in our sample. As one parent described:

If I come into the clinic I usually speak with someone who speaks Vietnamese. Most of the time there is a Vietnamese-speaking person right there. (Participant 6)

Many parents described positive communication with their health-care providers as a result of the culturally competent setting and their relationships with individual health-care providers. Furthermore, parents often perceived their health-care providers’ cultural competency as a facilitator of their relationships both to health care and to their child’s diagnosis and needs:

If it were in English, that would be a disaster (because) we don’t know it. Since it’s in Chinese, it’s easier for us to accept. (Participant 16)

Interestingly, despite perceived high levels of cultural competency, health-care settings were still viewed as culturally dissimilar. For example, a participant who had a culturally matched provider describe their child’s physician as follows:

The family doctor is a Vietnamese doctor. But this doctor, although a Vietnamese person, he grew up here so he doesn’t understand much Vietnamese, so he is considered an American. (Participant 2)

Language barriers and their impact on relationships with the health-care system

Despite generally positive relationships and good communication reported by the majority of participants, there were some instances of miscommunication and missed opportunities. The most dramatic example of communications failure was provided by this parent:

In fact, the doctor has never confirmed to me that he’s autistic. They use some medical terms. I didn’t know whether he has autism or Asperger’s syndrome, not until I received his IEP (individualized education plan, prepared independently of medical staff by the school system). Not until I received his IEP evaluation report in Chinese when he was in seventh grade…. I found out he’s autistic. (Participant 22)

There were also some problems reported with specialists communicating through a third party (mentioned by three participants), such as the child’s American stepparent.

They talk to [American spouse] and he understands. (Participant 10)

While these three participants were outliers, it is important to note that there was also a high level of language-matching primary care doctor in this sample, which was drawn from a large city with significant infrastructure for serving Asian immigrants. The impact of physician communication with a third party on parents’ perceived involvement in their children’s care is therefore significant.

Finally, language barriers and the need for interpreters played a significant role in families’ relationships to the health-care system as a whole with notable issues with perceived interpreter quality and availability. Participants reported particular barriers when communicating with specialists.

No, there isn’t (always an interpreter). Because with the specialist, I don’t know what to say…there’s no interpreters. And you know, whenever there have been interpreters, I mean regardless if there’s interpreters I do understand a bit of English. But sometimes the interpreter doesn’t interpret correctly what the doctor is saying, so then I become disappointed so then I don’t want them. (Participant 2)

These difficulties with interpreters led to a sense of feeling underserved or lost for some participants:

So I am trying to find more services for him, because my English is too bad. It is really hard for me. (Participant 2)

Discussion

This qualitative study examined the experiences, needs, and strengths of Asian immigrant parents of CSHCNs. Though participants reported strong relationships with their children’s primary care doctors, who were often culturally matched, they also faced many culturally specific or culturally mediated barriers to care. In addition to language barriers, parents reported that their understanding of their child’s condition, and of the health-care system, was impacted by their cultural and economic status. Primary care doctors and their staff often played an important role in helping parents navigate the health-care system as well as assisting with other needs. However, parents expressed some dissatisfaction with what they perceived as their primary care doctors’ lack of knowledge about their child’s specific disability as well as their inability to solve the challenges facing their children. Parents frequently relied on community and informal supports, despite a high degree of cultural concordance with their child’s health-care providers.

Limitations

Before discussing the study implications, we delineate its limitations. First, the sample size was relatively small for each language group, and the study focused on Cantonese- and Vietnamese-speaking parents. Asian-Americans are a large and heterogeneous group (Holland and Palaniappan, 2012), and Chinese and Vietnamese-Americans do not represent all other Asian-American national and cultural groups. Another limitation is the fact that all participants were drawn from a single urban area, and these findings may not reflect the experiences of families living elsewhere or in rural areas. Therefore, these results might not be generalizable to less urban areas or states with more isolated Asian-American populations. Furthermore, our findings related to health insurance provision are not generalizable to other countries that have publicly funded national health-care system, which covers every cost for health care such as National Health Service (NHS) of the UK. However, the fact that participants experienced culturally specific barriers and difficulty navigating the health-care system even in this community suggests that further investigation to understand and mitigate cultural and practical barriers to care is necessary.

Implications

Community supports and assistance learning about the health-care system was an important theme in this data. Community-based programs and methods of data collection have been used effectively with disenfranchised Southeast Asian-American communities in California and may be an appropriate strategy to replicate (Baker et al., 2010). Informal and social supports were very important for participants in this study. This effect was also seen in another study that focused on military spouses who were the primary caregivers of CSHCNs; among this population, who experience high levels of stress, informal supports were found to increase resiliency (Farrell et al., 2014). Further research to determine how to best promote connections to culturally appropriate informal supports are also warranted. On a related note, families of CSHCNs are thought to derive particular benefit from medical–legal partnerships and other programs designed to address the social determinants of health, due to their increased vulnerability to financial and other stressors (Dejong et al., 2016). Significant efforts to make programs culturally accessible for Asian immigrant families may also be beneficial.

Interestingly, only two participants explicitly named discrimination as a consideration in their child’s health care, and one parent was unsure whether her experiences of perceived discrimination were related to her race/ethnicity or to her child’s disability. This is in contrast to prior research showing that discrimination was a common experience that had negative impacts on Asian-Americans’ health (Nadimpalli and Hutchinson, 2012). As noted above in the limitations section, our sample was drawn from an urban area with a large Asian-American community that offered culturally matched health-care options; this may have lessened or otherwise impacted discrimination.

The Maternal Child Health Bureau has proposed six core outcomes for CSHCNs, including decision-making partnerships with families, coordinated and comprehensive care within a medical home, adequate insurance, early and continuous screening, organized community-based services, and successful transitions to adult health care (US Department of Health and Human Services, 2013). These outcomes are important for all CSHCNs and may be particularly meaningful for Asian immigrant CSHCNs, given the culturally specific barriers described by immigrant parents in our sample. In particular, medical homes have been shown to improve access and care quality and reduce unmet need among all CSHCNs (Miller et al., 2013). A patient-centered medical home is an approach to delivering primary care that is patient centered, comprehensive, coordinated, accessible and committed to quality and safety (AHRQ, n.d.). The term ‘patient-centered medical home’, refers to the collaborative model and may or may not be centered in one physical location. Medical homes strive for culturally competent, family-centered care and have been shown to reduce – though not eliminate – disparities among immigrant children (BeLue et al., 2012). This may be especially significant for Asian immigrant CSHCNs, given the difficulty navigating the system experienced by participants in this study. These findings point to the importance of understanding the impact of having culturally matched health-care service providers.

Conclusions

This qualitative study of Chinese and Vietnamese parents of CSHCNs described experiences of, needs of, and barriers to Asian immigrant parents of CSHCNs in navigating the health-care system and seeking supports and services for their children. Participants were generally satisfied with their children’s care and had strong relationships with their primary care doctors who were often culturally matched. However, participants experienced several important and culturally specific barriers, including gaps in their understanding of the health-care system, language barriers, and a sense of alienation that they felt might be due to either their immigrant status or their child’s disability. Our findings highlight the importance of community-based, peer and informal supports, a significant strength of the particular community we sampled. Further research, including quantitative and health policy studies, to describe, understand, and reduce health disparities among Asian immigrant CSHCNs is suggested.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: a grant from the Deborah Noonan Memorial Fund and the Lurie Institute for Disability Policy.

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