Developmental delay is “the inability of a child to acquire developmental milestones at the expected age” (Aly, Taj, & Ibrahim, 2010). It is estimated that five to ten percent of the global population of children has some type of developmental delay or disability, and seventeen percent of the children in the United States have a documented disability, either behavioral or developmental (Aly, et al., 2010).
Over the past few decades increasing emphasis has been placed on the early identification of developmental and behavioral delays. Commonly in the United States, physicians caring for infants, toddlers and preschoolers “assess” development through informal questioning of parents and observation of the child during well-child visits. This approach is described as development surveillance (Dworkin, 1989) – a flexible, continuous process whereby knowledgeable professionals perform skilled observations of children during the provision of health care. The components of developmental surveillance include eliciting and attending to parental concerns, obtaining a relevant developmental history, making accurate and informative observations of children, and sharing opinions and concerns with other relevant professionals. Unfortunately this type of informal assessment has been shown to miss many children with developmental delay (F. Glascoe & Dworkin, 1993).
Inclusion of standardized developmental and behavioral screening (SDBS) is now recommended at specific ages as part of well-child care along with ongoing surveillance. This involves the use of validated, standardized measures to assess a child’s development in areas such as gross and fine motor, language, social, and self-help/behavior. When concerns result from screening, children need further evaluation or intervention. SDBS has been reported to increase rates of identification of developmental delay from 20%-30% to as high as 70%-90% (Brothers, Glascoe, & Robertshaw, 2008; Palfrey, Singer, Walker, & Butler, 1987; Sand, et al., 2005; Squires, Nickel, & Eisert, 1996).
In 2001, the American Academy of Pediatrics (AAP) approved a new policy stating that, as part of developmental surveillance, primary care physicians should gain the necessary skills to administer and interpret developmental screening methods that are reliable and valid, and periodic screenings of infants and young children should be performed during preventive care. (Committee on Children With Disabilities, 2001; Sand, et al., 2005). While noting the improved accuracy of SDBS, this statement stopped short of advocating routine SDBS as standard of care or providing recommendations on either priority ages for administering standardized screening or high-lighting at-risk populations who might require extra vigilance in developmental surveillance.
In 2006 the AAP released revised guidelines and recommended developmental surveillance at all well-child visits and administration of SDBS at 9, 18 and 30 months, as well as at other ages if concerns were noted. Because a 30-month visit is not standard in pediatric care, the AAP supported an alternative screening at the 24 month well-child check (Council on Children with Disabilities, 2006). Despite these recommendations, the National Survey of Children’s Health in 2007, showed that only 19.5% of parents of 10-month to 5-year-olds reported completing SDBS during their child’s medical visit. Rates across states ranged from 10.7% to 47 %, with only three states above 30% (National Survey of Children’s Health, 2007).
When pediatricians were surveyed in 2002 (55% response rate), only 23% self-reported always or almost always using SDBS (Sand, et al., 2005). The most commonly utilized tool, the Denver II, can take 15-20 minutes to administer correctly. This may be more time than is available to most providers, so there is some question as to whether the respondents are truly utilizing this SDBS measure correctly in all cases. In a separate survey of over 500 pediatric and family physicians (49.3% response rate), just over 50% reported using standardized instruments for developmental screening (Sices, Feudtner, McLaughlin, Drotar, & Williams, 2003). By 2009, based on the AAP Periodic Survey of Fellows, the rates of pediatricians self-reporting always or almost always using some form of SDBS had increased to 48% (Radecki, et al., 2010). While this shows improvement, still less than 50% of pediatricians appear to be routinely following the AAP recommendations in this area. Thus, it is again unclear how frequently SDBS is being utilized in primary care.
Given that 10% of young children are estimated to have developmental delay and that only 2.5% of U.S. children are enrolled in IDEA Part C services (Sices, 2007; U.S. Department of Education, 2007, Data updated as of July 15, 2008), it is likely that nearly four of five children under 3 years of age with developmental delay are not receiving early intervention services. In addition, children who incorrectly screen positive (i.e., false positive result) may also be an at-risk population with atypical development or environmental stressors affecting developmental progress. This group has been shown to benefit from additional services (F. P. Glascoe, 2001) suggesting that a false positive finding may nonetheless be valuable information. Finally, it has been reported that even in the setting of reported use of SDBS by pediatricians, only a small percentage of patients may actually be screened (Smith, 1978). The current system of identification and referral for developmental delay is not optimally effective (Sices, 2007).
Several reasons have been cited for not using SDBS, including lack of time, cost (Dobrez, et al., 2001), lack of reimbursement (Pinto-Martin, Dunkle, Earls, Fliedner, & Landes, 2005; Sices, et al., 2003), providers not understanding the importance of doing routine SDBS, and provider’s fear of a positive test result (Pinto-Martin, et al., 2005). The latter finding suggests a lack of confidence on the part of providers regarding how to interpret results and appropriate next steps/referrals when concerns arise. Despite these issues, it has been shown that the visit length does not increase if developmental screening tools are completed prior to the provider entering the exam room (Schonwald, Horan, & Huntington, 2009). Reimbursement and referrals/care coordination remain areas of concern, and indeed screening implementation has been more successful in states where payment for the 96110 screening code has been implemented or care coordination services enhanced, either at the practice site or through community efforts (MF Earls & Hay, 2006; M. F. Earls, Andrews, & Hay, 2009).
Implementation of routine SDBS has been shown to be feasible. Participants in a quality improvement project initiated after the AAP 2006 guidelines were released (King, et al., 2010) were able to screen an average of more than 85% of their patients at the recommended ages of 9, 18 and 24/30 months. North Carolina, which has provided both Medicaid reimbursement and practice-based support for implementation of SDBS, has reported use of SDBS in up to 85% of children ages 0 to 5 years (M. Earls, 2009). Both of these finding suggest that SDBS rates could be improved significantly with appropriate education and support for practices and providers.
Background: Immigrant and Refugee Populations
According to the 2000 census, one in five children in the United States was either born in another country or one or both of their parents were born in another country (Javier, Huffman, Mendoza, & Wise, 2010). This implies that a significant number of children have families who are recent immigrants or speak primarily or exclusively a language other than English. There is very little known about developmental screening in immigrant and refugee children in their new country of residence.
Additional barriers to SDBS with immigrant and refugee children are likely to exist, including the lack of validated and reliable measures in the family’s primary language, literacy and cultural differences in childrearing and interpretation of questions on current SDBS tools. Interpretation barriers during a screening encounter may also have an impact.
Immigrants referred to health care services may have more limited knowledge about navigating health care systems, further complicating their ability to access appropriate services (Welterlin & LaRue, 2007). In adult patients, language differences between the patient and his/her health care provider have been found to be associated with an increased chance of non-compliance, problems in rapport, and feelings of fear or despair (Schouten & Meeuwesen, 2006).
In addition, adults who were able to communicate with their doctors in their native language have been reported to ask more questions than patients who communicated in English only (Schouten & Meeuwesen, 2006). Families from cultural backgrounds outside the United States have also been shown to view their child’s development differently than families from a U.S. background, (Morrier, Hess, & Heflin, 2008), which may influence the information they pass on to their child’s health care provider as well as the questions they ask.
Research has suggested that some aspects of a child’s development may differ across cultures, perhaps due to differing parental beliefs and their influence on parenting practices (Tsai, McClelland, Pratt, & Squires, 2006) or perhaps because the concept of developmental delay and intervention appear not to apply in the family’s native culture. Although recent immigrant families are on average more likely to live in poverty and to have less educated parents than non-immigrant families, children under the age of six in immigrant families have been reported to use public benefits less often than those of U.S. born parents (Javier, et al., 2010).
The socioeconomic status of the family, the language, education, and ethnicity of the parents, and the insurance status of the child have all been shown to be important factors in how immigrant families with children with special health care needs experience health care, leading to less health care access/utilization and poorer general health (Javier, et al., 2010).
The goal of this project, then, was to identify possible points of intervention and improve developmental screening for children in immigrant and refugee families. In order to do so, we conducted a literature review and key informant interviews of health care workers intimately involved in work with immigrant and refugee populations.
Part I: Literature Review
This paper initially sought to review available literature relevant to developmental screening specifically with immigrant and refugee children; however, little relevant literature was found. For this reason, we chose to review available literature on developmental screening in ethnic/racial minority groups which we believe will be relevant to the original goal of this work.
Delays in diagnosis and referral for developmental services have been documented in ethnic minority groups in both North America and Europe. This has been especially noted in diagnosis of autism spectrum disorders (ASDs). Children from ethnic minority backgrounds have been found to receive diagnoses of ASDs later than white children (Mandell, Ittenbach, Levy, & Pinto-Martin, 2007; Mandell, Listerud, Levy, & Pinto-Martin, 2002; Mandell, et al., 2009). In fact, black children were shown in one study to receive an ASD diagnosis at least a year later than white children and to have triple the number of office visits related to developmental delay or a mental health issue before receiving the diagnosis (Mandell, et al., 2002).
Among those who eventually received an ASD diagnosis, a diagnosis of an ASD at the first evaluation visit was found to be 2.6 times more likely for white children than for African American children. Latino and Asian children were also found to be less frequently diagnosed with ASD at initial visits when compared with white children (Mandell, et al., 2007). The underdiagnosis of ASDs in minority children has also been observed in Europe, where a Dutch study found significantly fewer ethnic minority children than expected to be receiving services for ASDs.
This study went on to present vignettes of children with autism features and varied ethnicity – Dutch, other European minority (English/French) or other minority (Turkish/Moroccan) – and found that pediatricians were more likely to consider an ASD diagnosis when reading a vignette about a Dutch child than when the vignette involved a Turkish or Moroccan child. This effect disappeared when the pediatricians were asked to specifically report the probability of an autism diagnosis (Begeer, Bouk, Boussaid, Terwogt, & Koot, 2009).
Together these findings suggest that underdiagnosis of ASD in minority children crosses cultures and may be particularly problematic in general screening as opposed to in more specific autism focused evaluations. Additionally, a recent report found not only later diagnosis for Hispanic and African American children than white children but also significantly later diagnosis for children born outside the continental United States or whose mothers had been born outside the continental United States (Valicenti-McDermott, et al., 2010). These findings suggest that delay in diagnosis may be more substantial in recent immigrant children or those whose parents have lower English-language proficiency regardless of ethnicity.
Delay in diagnosis or underdiagnosis has been attributed to the professionals’ and family’s interpretation of symptoms, professionals’ racial prejudice and challenges accessing health care for families (Mandell, et al., 2009). Additionally, disparities in access to important aspects of the medical home in ethnic minority children have been shown. These include areas likely important to appropriate developmental screening and service referral, including having a primary care practitioner and having adequate time and good communication with him/her (Raphael, Guadagnolo, Beal, & Giardino, 2009). For immigrant families, professionals may also view atypical social interactions as part of the process of acculturation and, therefore, may not be as quick to diagnose and refer immigrant children. These problems may lead to underdiagnosis of ASD in immigrant and ethnic minority groups (Begeer, et al., 2009).
Part II: Qualitative Findings
Between June 2009 and November 2009, interviews were conducted with six bilingual/bicultural caseworker/cultural mediators (CCMs) who serve patients and their families with limited English proficiency receiving health care at Harborview Medical Center in Seattle, Washington. CCMs provide multiple services including interpretation, patient advocacy, home visitation, health education, and coordination of patient care. They also provide assistance to patients and families with complex medical and social challenges by working as liaisons between the individual’s or family’s respective communities and social service organizations, schools or other agencies.
This project was conducted in collaboration with EthnoMed (https://ethnomed.org), a joint program of University of Washington and Harborview Medical Center’s Interpreter Services Department/Community House Calls Program. EthnoMed is a publically available website that provides information about medical issues and cultural beliefs as well as other topics relevant to the health care of immigrants to the United States. With Institutional Review Board permission, EthnoMed recruits CCMs to participate in interviews for EthnoMed projects. For the current project, EthnoMed staff recruited participating CCMs who served five immigrant groups: Cambodian, Ethiopian (2), Latino, Somali, and Vietnamese, and provide interpretation for a total of 6 different languages. These immigrant groups were chosen because they comprise some of the largest immigrant communities in Seattle, Washington where the project was conducted.
Each interview was conducted by one interviewer, and lasted approximately 1 to 1.5 hours. An interview guide was developed by a pediatrician and a research assistant with questions based on the developmental screening literature and clinical experiences with developmental screening in minority and immigrant families. The interview included 17 questions querying beliefs and attitudes toward developmental screening. Questions sought to explore potential barriers to effective screening for developmental delay among a broad group of immigrants and refugees with limited English fluency. Answers are considered to be a combination of the CCMs own personal experiences of their native culture and what they have learned from client/patient families over their years as CCMs. All interviews were audio-taped with permission of the CCMs, transcribed, and reviewed by a team described below which did not include the interviewer to ensure accuracy.
A team of three coders representing five academic disciplines – pediatrics, psychology, special education, social work and public health – conducted qualitative analysis on the transcribed interviews. The hierarchy of categorization had overarching domains which consisted of unifying themes that recurred throughout the transcripts and were subcategorized into key categories. The coders first read the transcripts individually and identified themes and categories. The group then discussed interviews until consensus was formed for each. Finally, broader domains were developed into which the key themes fit and, again, consensus among the three reviewers was reached.
A full outline of domains, themes, and categories can be found in Table 1. The consensus of the reviewers was that the potential issues impacting effective developmental screening identified by the CCMs fell into three overarching domains: 1) Attitudes & Beliefs, 2) Barriers, and 3) Improvements/Suggested Solutions. Each will be discussed separately.
Attitudes and Beliefs
Table 2 lists a number of selected quotes illustrating the themes related to Attitudes & Belief. Four general themes emerged in this domain: 1) the Parental Reaction, 2) Cultural and Religious Beliefs, 3) the belief that developmental disabilities are Inherited and 4) Denial of the delay or disability.
Parental Reaction: Blame was commonly discussed in the parental reaction theme, although the person or entity being blamed was not consistent. Reference to blaming the mother was common, but blame toward the father, the child or others was also reported. Some of those interviewed also discussed acceptance, both of the diagnosis and the child. In at least one interview, this was noted to be a change over the past, “…before they were really afraid if they are going to have a baby like that and I don’t see that …it just changed.” Shame and parental confusion about the etiology of the delay were also voiced as parental reactions.
Cultural and Religious Beliefs: Cultural and religious beliefs were major themes throughout many of the interviews. These included both benevolent and non-benevolent “Higher Powers.” In addition, the topic of karma was also raised, in the sense of having a child with a disability because of something done in a previous life. By agreement among the coders, karma was kept separate from a non-benevolent “higher power,” because it was unclear from the text if this was considered punishment or simply an expected and accepted occurrence. There was also a tone of acceptance related to religion in some cases, for example “God made him, so it doesn’t bother me.” Finally cultural beliefs around event causality were also noted.
Disability Inheritance: One CCM mentioned a belief that closely resembled inheritance or a genetic basis for disability by referring to the fact that you inherit behaviors or the way you act from your grandparents.
Denial: The final theme included in the Attitudes & Beliefs domain was denial. There were three categories represented. The first involved the thought that any delay was due to a lack of education during the refugee process, acculturation or a language barrier. The second was that the child was delayed but would catch up. Finally, there were general statements made regarding disbelief or denial of a problem with the child.
Table 3 lists a number of selected quotes illustrating the themes related to Barriers. The reviewers identified ten themes in the domain of Barriers to developmental screening, diagnosis and service attainment:
Language: Barriers in language were not solely those traditionally mentioned, such as difficulty obtaining interpretation or efforts at communication in a non-native language. CCMs also mentioned difficulty due to the use of technical terms, even in the setting of highly qualified interpreters. For example, some concepts may not exist in the family’s native language, leaving the CCM to explain as best as possible the meaning of the English-language term. The lack of available screening tools in the languages spoken was also reported as a barrier.
Communication: With regard to more general communication, not knowing how to ask a question was a frequently noted concern. The availability and skill level of interpreters were also mentioned as potential barriers. The CCMs noted good availability of interpreter services in the setting where they worked, but only limited availability in some other hospitals and clinics, particularly in more rural areas.
Transportation: One of the main issues limiting family access to follow-up evaluation and services is transportation, with disparities in access to transportation noted. In particular, those with access to free transportation through Medicaid or other service provision were noted to have fewer barriers.
Child Care: Care by non-English speaking relatives and home-based daycare placement were both reported to be associated with delay in diagnosis. In general, the comments centered on a lack of or delayed recognition of developmental delay by these providers, potentially due to unfamiliarity with typical development and signs of delay or a lack of understanding of its importance.
Economic: Economic barriers to obtaining services were expected, but interestingly, several CCMs noted better service access for those with Medicaid coverage than those who had private insurance. The ability of the family to have time outside of work hours to observe the child and note differences from other children, to attend assessments and to obtain services was also reported as an economically-related barrier.
Education: Parental and family education level was seen as an important factor. Less education was associated with less confident interactions with providers, poorer communication skills and reduced understanding of provider concerns and diagnoses.
Family: Some interesting family characteristics were also cited as potential barriers including being from a rural area in one’s country of origin, a shorter length of residence in the United States, single parent status and individual beliefs about the reasons for developmental delay.
Trust: Trust in the provider was raised both in how it impacted adherence with medical recommendations and how it affected a family’s understanding and acceptance when concerns about possible developmental delay were raised.
Understanding: A lack of understanding of both the medical and educational systems in the United States was a common theme. Lack of understanding was noted to result in less acceptance of diagnoses and reduced service access.
Society: With regard to the larger society, concerns were noted about discrimination as a reason for a diagnosis. Fear of authority or invasion of personal space were also suggested to reduce some family’s acceptance of both diagnoses and recommended services, particularly when those services were to take place in the home as is common with young children.
The third domain that was clearly articulated by the CCMs was what could be done to improve or solve the difficulties in early identification of developmental problems in refugee and immigrant populations. Details and relevant quotations can be found in Table 4. This domain contained three themes: Transportation, Communication, and Education.
Transportation: The main suggestion regarding transportation was to improve access. Unfortunately, detailed suggestions for how to attain this were not queried or frequently noted. Thus, this constitutes an important area for future work.
Communication: CCMs indicated that improvements in communication were necessary to remove barriers. Suggestions included using simple language, decreasing the use of diagnostic labels when speaking with families, giving information in small amounts and through frequent meetings over time, and scheduling provider-interpreter pre-appointment conferences to discuss the concerns and possible misunderstandings and provide needed clarification. The latter can be a brief check-in, conducted after the interpreter has arrived at clinic and just prior to entering the room with a patient and family. Other recommendations included avoiding the use of phone appointments or phone feedback, sending reminders about appointments, clearly outlining next steps (e.g., written care forms or pictorial guides for those with limited literacy), and developing informational materials about developmental disabilities and therapies in the multiple languages utilized by the local community.
Education: The final theme of this domain was education. CCMs cited the need to educate community members, interpreters, childcare providers and parents about developmental milestones, screening and disability. They discussed the need for improved cultural competency and knowledge about the various cultures served. However, the CCMs also indicated it was very important not to assume all members of a certain culture are similar. They also emphasized the need to take family income into consideration as this may be a marker for parental education level or the level of other stressors the family is experiencing.
This project set out to examine developmental screening for immigrant and refugee children through relevant literature review and a qualitative project with six CCMs. Through review of available literature, it was shown that disparities in time to diagnosis of developmental disability do appear to exist in ethnic minority children. Language differences and/or immigrant status may exacerbate such delays. The qualitative portion of this project elucidated potential barriers to developmental screening and service access for recent immigrant and refugee families. Figure 1 outlines important considerations regarding developmental screening in these populations.
The qualitative portion of this project has a number of limitations. The sample of individuals interviewed was extremely small and limited to 6 language groups in the Seattle metropolitan area. This significantly limits the generalizability of these findings to other ethnic/language groups in different locations. In addition, only CCMs were interviewed.
Despite these limitations, the qualitative results did raise a number of suggestions for improving developmental screening and service linkage for identified delays in immigrant and refugee populations which warrant further evaluation. There is a need to know the family’s history. Parental educational attainment, rural vs. urban residence in the country of origin, and the length of time residing in the United States were all raised as important variables. Educational outreach to community groups, childcare providers, interpreters and parents to increase awareness of normal development and “red flags” for concern as well as the importance of diagnosis and treatment were also detailed. Although not directly stated, there were several indications that families needed additional assistance communicating with schools. Finally, the findings outlined here suggest that more time with families will be necessary to conduct appropriate SDBS and assist immigrant and refugee families in accessing needed services.
This project represents an initial attempt to describe barriers to developmental screening in a population which is missing from the bulk of the developmental screening literature. This area is particularly important in light of the outlined data suggesting relatively poor implementation of SDBS in the general population and delays to or underdiagnosis of ethnic minority children. The paper highlights potentially unmet needs and suggests that further work in this area is warranted. It is believed that, through such efforts, disparities in SDBS and developmental diagnoses can be reduced.
Table 1: Outline of Identified Domains, Themes and Categories
A. Parent Reaction
c. Within family
B. Cultural/Religious beliefs
iv. God’s will
v. Culture-specific belief
i. In the nature of the person or family
i. Is it acculturation issues or bilingualism?
ii. (S)he will catch up
A. Language Barriers
ii. Limitations in Language Concepts
iii. Assessment Tools
i. Don’t know how to ask questions
ii. Varying intepreter skill
iii. Limited interpeter availability
i. Childcare by relatives
ii. Home-based childcare
i. Insurance status
ii. Must choose between work or services for child
iii. Less time with child due to demands of work
ii. Improved understanding
i. Rural vs. Urban in country of origin
ii. Length of residence in US
iii. Partnership status
i. More likely to follow instructions if trust provider
ii. May not believe concerns when raised
I. Lack of Understanding of System
i. Medical System
ii. School System
iii. Different in Country of Origin
iv. Don’t see problem
i. Concerns about Discrimination
ii. Fear of Authority
III. Suggested Solutions
i. Improve Access
ii. Duration and Frequency of Appointments
iv. Interpreter-Providcer preconference
v. Appointment Reminders
vi. Provide clear next steps
vii. Need more translated materials
iii. Childcare providers
v. Teach cultural competency, including more about low-income families
Table 2: Attitudes and Beliefs around Developmental Screening and Disability
|Parental Reaction||Blame||Self: “Blame…mother blame herself.”|
Others: “Blame…mother blame herself. Or blame the system, feeling guilt that they didn’t provide their child the things he needs”
Within Family: “usually they blame on the mothers, the mothers blame the fathers”
Child: “A lot of times you can hear parents say, you know but I keep telling him, do homework, he is not listening to me, or she is not listening to me. So they blame … the child”
|Acceptance||“people are more accepted those things…before they were really afraid if they are going to have a baby like that and I don’t see that it is not like that…it just changed”|
“I think culturally they accept them [children with difficulties]”
|Shame||“Disability is…like a taboo. People don’t talk about it, people hid. It would be shameful to show that you have a disability child”|
|Confusion||“this kind of disability, they usually concern they don’t know why they have a child like that”|
|Cultural/Religious Beliefs||Benevolent||“some people think that it’s kind of bless that having a child like that”|
|Non-benevolent||“before people believed it was because you did something bad and then now you are paying and that’s why it got send it to you”|
|Karma||“when a family has some child that has some kind of disability, they always think that because of previous life and maybe they did something wrong so now they have a child, someone in this family having this kind of disability”|
|God’s Will||“she [a mother with a child with disability] said “no this is how God made him so it doesn’t bother me and I am not going to interfere with God’s work”|
|Cultural Belief||“… we believe that moon…born in different month or different year, some people believe that babies born on this day, it’s hard to control. You are born on this day and this month, it’s smart. They believe on the day they are born”|
|Inherited||In the nature of the person or family||“kids who don’t start talking at the age they should, and they believe that it’s because heritage issues like that”|
“The behavior also, we just say just because, you inherit the behaviors, the way you act from your grandparents”
|Denial||Is it acculturation, bilingualism?||“When they were back home… they go to school. But when they came through refugee [camps], and there is no education…”|
“they just came to United States, it’s language problem”
“I don’t know the diagnosis of psychological, cognitive developmental delay and the learning disability or acculturation in general, how they can differentiate that?”
“When refugee kids speak different languages, maybe little slow than mainstream, but it’s still normal”
|Will catch up||“Some children are born like a little bit slow, but as they grow, they start to be fine.”|
“Yeah they might be rushing the kids, saying doesn’t speak, difficult speaking or learning…They might say his grandpa start talking when he was 4 years old and nothing’s wrong. This is something that happens in the family and is gonna disappear problem by the time they’re five years old.”
|General||“A lot of families do have hard time accepting the fact that their children have challenges.”|
Table 3: Barriers to developmental screening
|Language||Understanding||“those questions are really difficult because of the technical term or language translation and those…could be problematic”|
“it’s sometimes too technical or too linguistic…not in a level that clients able to understand…there could be difficulty for the open questions”
|Concepts in Language||“In [language], one word “fool” or “crazy”. So they come to the…they have the mental problems to see psychiatrist, they are not happy because they see that they are not crazy, because they don’t know about the diagnosis a lot”|
|Assessment Tools||“The screening tools, there are, but it’s not really enough for the target language. I hope they would have more that would make it easy for the family”|
“the toys or other things. They might never had that chance to have all those things, to know what triangle is, what circle is. I believe that most of the time it’s not culturally appropriate”
|Communication||Don’t know how to ask Questions||“They have a lot of questions but they don’t know how to ask and how to get more information”|
|Interpreter Skill||“the interpreters make a lot of difference … how skillful the interpreters and how articulate…have familiarity with the area can bring openness with the family.”|
|Interpreter Availability||“Here they [interpreters] might be available, but outside in other cities it’s not available”|
|Provider||“they don’t take too much time to explain or sometimes they take too much time to explain and give too much information at once, and they don’t get everything especially if people don’t have experience with that”|
“If the family brining the children to the clinic or the hospital where the primary care provider have those information, that helps, but some of the families don’t have that access to right primary care providers, that information is difficult for families to get it”
|Transportation||Access||“they might not always getting transportation to take them”|
“when they have disability, they are going to have Access [van service] or DSHS taxi Hopelink. If they are not, we arrange transportation”
“And also most of them…the taxi never showed up. Transportation”
|Childcare||Childcare by Relatives||“the boy…is raised by the grandmother. Two elderly, non-English speaking raising autism child. I don’t know how much they know about it [child’s disability]”|
|Home-based Daycare||“they just put their children under someone’s care and not professional child care so nobody find out [about disability]”|
|Economic||Insurance Status||“if you don’t have medical coupon, and if you are working for a company, taking time off and paying for those bills, if the company doesn’t provide coverage for the insurance, would be [a] challenge or difficulty”|
“Some of the families who are low-income, they get medical coupon, seem like they get more services than the private insurance…sometimes families [who have private insurance] have to fight with the insurance to get the services for the children”
|Choose between work or services||“Most of these parents they don’t, they can’t, it’s not that they … want to miss it [appointments], they can’t miss work. If they miss work they have hard time to have enough food or they going to get laid off””Work, the child, food…it’s just become so hard”|
|Less time with child||“Since everybody’s schedule are very busy everybody don’t have time to pay attention to all of those things,”|
|Education||Self-efficacy||“If the family has education, they want to learn more”|
|Improved Understanding||“understanding and education level you have that could seek a lot of other help and understand the illness of the child and the ability of your children to grow and development”|
“it’s going to depend on family’s education … they are more open and more expressive and more educated and they accept the situation and they have been involved in their kids life and ask for help”
|Family||Rural vs Urban in Country of Origian||“When the parents are educated or from the city or they have better background, they work with the doctors…if they are from the village and they don’t have education background, it’s going to be stigma to the parents. But when they are from the cities and going to school and working families, much better to work with the doctors”|
|Length of Residence in United States||“immigrate here for a while have been here for a while, yes [knows how to access information and understands basic aspects of service delivery]”|
|Partnership Status||“for some families who have single mothers who have disability children, those would be difficult”|
|Trust||More likely to follow instructions if trust provider||“When they have a trust, its fine, feel secure, feel ok, you will accept it|
“So it’s just very important to have someone who you trust and you know that this person, the only thing want, she wants is just help me and that make people be safe. And if you are safe, you are going to accept it what they told you to do.”
|Not believing concerns when raised||“It’s not from my son or from my daughter, it’s from the school. Or the teacher doesn’t, she might look, she might overwhelm from other students so she always points my son, but my son nothing’s wrong”|
|Lack of Understanding of System||Medical System||“I don’t understand why if he is not learning, why he needs to see the doctor”|
“Because they never see that [screening tool] before. When they live at home, they never go to see a doctor. They don’t know about the tools like in here”
“One thing that they still don’t get it now even if they live here long time, referrals, the waiting lists and those…the system itself”
“Even people with education, they don’t understand because, in [home country], we don’t use referrals”
|School System||“the school system in our country and here are different because the school back home for our populations, the parents does not enroll, depend all on the teachers…so it’s nobody know what to do, who should do…”|
|Different in Country of Origin||“Because they never see that [screening tool] before. When they live at home, they never go to see a doctor. They don’t know about the tools like in here”|
“They don’t believe that they need extra help and in [country of origin] we don’t have it”
|Don’t see a Problem||“sometimes … can see that they don’t believe it, they don’t do anything”|
|Society||Discrimination||“some families…think that because child is [ethnicity], that’s kind of a discrimination, and that’s why this child is not learning, because he needs to be treated like a white child”|
|Fear of Authority||“People like us from countries like that are scared of authorities. So many women…when [they] see you in uniform and your title, they will go down like this and they don’t ask questions”|
“The other barrier is invasion” (when discussing home-based service provision)
Table 4: Improvements and Suggested Solutions
|Transportation||Improve Access||“… getting transportation to take them there is very important.”|
|Communication||Language||“And explaining why the child needs to go here in simple language, explaining in simple language what the problem is and what the child what kind of benefits he can get if you go through this.”|
“parents don’t like the word “disabled”…so you have to use your own words to help the family to understand what is the situation that he can improve his way of learning by attending in the school”
|Duration and Frequency||“I think this kind [of information] has to be little by little in giving information, actually spending more time in more appointments, not in one appointment, one hour, an hour and a half, to explain everything. I think it will work better if you just give 20 minutes and then probably two or four appointments. 20 minutes each one or 30 minutes each one. And it will be more understandable for them and accepted because your parents will accept it”|
|Avoid phone communication||“the thing is by phone, patients don’t for some reasons they don’t get it when it’s by phone, especially those kinds of things”|
|Interpreter-Provider preconference||“Before we screen we have a conference with the doctor about the background about the culture, about the religion, so we talk and when we go to the room we are on the same page. So when the doctors address the problem, they are more culturally aware”|
|Appointment Reminders||“Mostly we are … are vocal. You tell them you have an appointment, they might not put it in their calendar. They might forget…so it’s always is good to remind them of [the] appointments they have and where they have and reason they have.”|
|Clear next steps||“we have to explain exactly what is going to happen and why this doctor is ordering referral”|
|Translated materials||“I have to say that translated material is very important. If they get the information, they can read it, they can understand that. It’s much better than interpreting”|
|Education||Community Members||“To train the community to teach the community, it will make a huge difference. It would make it easy to communicate with the parents.”|
“It’s not one person problem. It’s the community’s problem. If we teach the community and teach them what to expect … from their kids and that it is normal to be disabled…how can we help the children, to be in the right school or the right place to get the right treatment, the right help so it’s the community’s education”
|Interpreters||“I wish that interpreters can have more training in this field [developmental disabilities]”|
|Childcare Providers||“educational opportunity…could happen in daycare, preschool, all those places as soon as possible, materials to pick it up, educational support group, once a week education about child development or delay, brochures, videos, and they do a lot of other stuff.”|
|Parents||“You have a habit of doing prenatal visit or post visit, those kinds of things should be talking and some of the questions should be for parents … when they go to a regular child visit”|
|Cultural Competency||“you have to take case by case and then screen individually based on history, language ability, history of … illness, you have accommodate that and then depend how long the family arrive here, where they have been, family support, extended family, isolated…”|
“Knowing more about families…especially those families…if you see that low-income families is the ones that need more help”
Figure 1: Developmental Screening Considerations
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Further ReadingCulture: Diverse diagnostics
This article, written by Sarah DeWeerdt and published in the November 2012 issue of the journal Nature, discusses how the diagnosis of autism may clash with cultures that have different forms of everyday social interaction and different standards for how children should behave.