Parents play an integral role in developmental growth and educational success for children with disabilities [1,2]. When parents give adequate support and encouragement, children have more opportunities to succeed. At times, this can be difficult to do, as there are various stressors when raising a child with a disability. According to Lu, et al. [3], Chinese parents of children with autism presented lower self-esteem, social support, and life satisfaction. Argyrakouli and Zafiropoulou [4] also conducted a similar study and found significantly lower self-esteem in Greek mothers of children with intellectual disabilities. This in turn decreases the level of support parents are able to provide and impacts the child's ability to succeed. Thompson [5] found that parental stress also affects the amount of positive appraisal parents give to a child. With higher parental stress and reduced positive appraisal, this can hinder a child with disability because they learn and benefit from positive reinforcements. Durisic and Bunijevac [1] reported that parental support and advocacy are important for children who have disabilities as parents' advocacy for services will improve their child's quality of life. Therefore, it is essential to understand parents' ability or their perception of their abilities to gain services for their child.
In addition, the United States is a multiracial, multiethnic, and multicultural society due to immigration and mixed families. As a result, culture and language play a significant part in a person's life because it influences their way of life and how they communicate with one another [6]. According to the Center for Disease Control and Prevention (2020) [7], 1 in 6 children between the ages of 3-17 have one or more developmental disabilities. The Center for Immigration Studies states that 1 in 5 U.S. residents, or approximately 61.8 million people, speak a language other than English at home [8]. These cultural and language differences present specific challenges for families, but especially for families of children with developmental disabilities.
As a Vietnamese American with immigrant parents and a sister with a developmental disability, the first author has observed that there are stresses and struggles her family had to face in order to give her sister the best life that she can have. Furthermore, parents of children with disabilities are faced with emotional and mental distress because they need to learn about the child's disability and what it takes to take care of the child, as well as to advocate for specific services for the child, such as speech therapy, occupational therapy, physical therapy, and more. When parents are faced with a language difference, it increases their anxiety level because they must communicate with professionals in their non-native language to identify and advocate for services for their child [9]. Therefore, trying to navigate the needs of a child with a disability in a language other than their native language will add significant challenges for parents. Parents have a huge role in caring for their child with developmental disorders. As culture impacts a person's values, beliefs, and way of life, immigrant parents often experience added responsibilities as they support their child with disabilities dealing with mainstream culture and language that are different from those at their homes. Thus, it is essential to take into consideration how all these factors can affect lives of individuals with disabilities and their parents who advocate services for them [1].
The purpose of this study is to examine how non-native English-speaking parents perceive their abilities to obtain services for their child with developmental disabilities by measuring self-esteem, parental stress, and life satisfaction. It is hypothesized that, due to the language barrier, non-native English-speaking parents will show lower self-esteem, higher parental stress, and lower life satisfaction scores.
A total of fifty non-native (n = 25) and native English-speaking parents (n = 25), who have children with developmental disabilities, participated in the study. Non-native speakers are immigrants whose primary language is not English; thus, they use any language other than English in their daily communication. Proficiency of English was based on self-report by the parents. Participants were recruited by posting an IRB-approved research flyer through local clinics, schools, and social media sites (Facebook, Instagram, emails).
As reported in their responses to yes/no and open-ended survey questions (Appendix A), 40 out of 50 parents had a child who was diagnosed with autism. The other 10 parents had children diagnosed with cerebral palsy, feeding issues, or other diagnoses. Of the 25 non-native English-speaking parents, 13 parents identified Vietnamese as their primary language. The remaining 12 non-native English speakers spoke Spanish, Chinese, Korean, or Thai.
The survey included three previously published scales: Rosenberg Self-Esteem Scale [10], Parental Stress Scale [11], and Satisfaction of Life Scale [12]. Permission to use these scales has been obtained from the authors of the scales by the first author of the study.
The purpose of using the Rosenberg Scale was to examine the parents' self-esteem as they experience requesting for services for their child while having different cultures and languages they speak. Although the original scale was designed for high school students, the instructions were modified specifically for the participants of this study (Appendix B). The Rosenberg Scale is a 7-item scale that measures positive and negative feelings about the self. All items are answered using a 4-point Likert scale format ranging from strongly agree to strongly disagree [10].
The Parental Stress Scale was utilized to determine if culture or language impacted parental stress in obtaining services for their child. The instructions for this scale were also modified and cultures of the parents were considered in their responses (Appendix C). The Parental Stress Scale is a 17-item scale on a 5-point Likert scale that measures feelings and perceptions about the experience of being a parent and their relationship with their child [11].
The purpose of using the Life Satisfaction Scale was to identify if parents were satisfied with how they advocate for services for their child with a disability (Appendix D). The instructions were modified for this study in hopes of determining if there is a need in changing how healthcare professionals provide services for non-native or native English-speaking families. The Life Satisfaction Scale is a 5-item scale on a 7-point Likert scale that measures the global cognitive judgment of life satisfaction [12].
The survey consisted of 10 background questions (three yes/no and seven open-ended questions) in addition to the 29 items mentioned above. Background questions included ethnicity, language (e.g., "What do you consider is your native language?), and their child's diagnosis (e.g., "Do you have a child with a developmental disability?" "What is the diagnosis of your child?"). (See Appendix A for background questions, Appendix B for Rosenberg Self-Esteem Scale, Appendix C for Parental Stress Scale, and Appendix D for Satisfaction of Life Scale). This study was approved by the Institutional Review Board (IRB).
Participants selected a paper or online survey format per their preference, but the surveys were otherwise identical and took approximately twenty minutes to complete. For both survey formats, participants completed informed consent forms before beginning the survey.
Due to the infinite number of language that the participants could have spoken and to maintain consistency, the flyers and survey were presented in English to all the participants. However, questions were carefully selected to be culturally appropriate for non-native English speakers.
The researchers took the information from online (n = 14) and paper survey responses (n = 36) and converted all the responses into a SPSS-25 [13] statistical software to analyze the data for self-esteem, parental stress, and life satisfaction scale scores using one-way ANOVAs.
When asked if the participants observed any harms of speaking another language other than English, 22 out of 25 native English-speaking parents said there are no harms to their children, but 13 out of 25 non-native English-speaking parents said there were harms. When asked why they thought this, most (88%) native English-speaking parents stated that knowing multiple languages is beneficial to education because it could expand overall language skills. On the other hand, non-native English-speaking parents' responses were that there would be confusion if they spoke two or more languages. Refer to Table 1 summary responses between non-native and native responders.
Table 1: Summary of Responses to between Non-Native and Native English-Speaking Parents. View Table 1
A one-way ANOVA was conducted to test the research hypothesis that non-native English-speaking parents will have significantly lower self-esteem than native English-speaking parents when trying to obtain services for their child with a developmental disability. There was no statistically significant difference between non-native (M = 19.88, SD = 2.69) and native English-speaking parents' self-esteem (M = 20.96, SD = 2.85).
A one-way ANOVA was used to test the research hypothesis that non-native English-speaking parents will have significantly higher parental stress than native English-speaking parents due to language-related challenges in getting services for their child. There was a significant mean difference in parental stress between non-native (M = 46.44, SD = 9.23) and native parents (M = 38.12, SD = 9.95), F (1,48) = 9.39, p < 0.05. Refer to Figure 1. Higher parental stress scores indicate higher levels of stress.
Figure 1: Mean parental stress between non-native and native English-speaking parents.
View Figure 1
Post-hoc analysis was conducted using independent sample t-tests on each item to analyze if non-native parents have higher parental stress than native parents. In the Parental Stress Scale, three out of 17 questions showed significant results when controlling the error rates by adjusting the significance level at 0.003 (Bonferroni correction). For the statement, "There is little or nothing I wouldn't do for my child if it was necessary," the results were significantly different between non-native (M = 2.63, SD = 1.73) and native English-speaking parents (M = 1.36, SD = 0.49), t (37) = 4.43, p = 0.00004. Eighty-eight percent of native respondents feel "There is little or nothing I wouldn't do for my child(ren) if it was necessary," compared to 40% of the non-native respondents. For the statement, "I feel close to my children," the results showed a significant difference between non-native (M = 1.92, SD = 1.08) and native English-speaking parents (M = 1.20, SD = 0.17), t (31) = 3.23, p = 0.001. For "I enjoy spending time with my child," there was a significant difference between non-native (M = 2.04, SD = 1.54) and native English-speaking parents (M = 1.20, SD = 0.17), t (29) = 3.21, p = 0.002. The results for these three statements indicated that non-native English-speaking parents have higher parental stress than native parents. Refer to Figure 2 that shows responses to significantly different items between native and non-native English-speaking parents in the post-hoc analysis.
Figure 2: Response to significantly different items in post-hoc analysis in the parental stress scale.
View Figure 2
An even split was noted between agreeing (including strongly agree) and disagreeing (including strongly disagree) in non-native respondents, unlike the responses in native respondents (none agreed/strongly agreed). Hundred percent of native respondents "feel close to their children" compared to 92% of non-native respondents. Hundred percent of native respondents "enjoy spending time with their child(ren)" compared to 80% of the non-native respondents.
Another one-way ANOVA was performed to test the research hypothesis that non-native English-speaking parents will have significantly lower life satisfaction than native English-speaking parents due to caring for their child with developmental disorder. Results showed a significant mean difference in life satisfaction between non-native (M = 21.92, SD = 7.47) and native respondents (M = 27.16, SD = 6.30), F (1.48) = 7.12, p < 0.05. Refer to Figure 3. Lower life satisfaction scores indicate lower levels of life satisfaction.
Figure 3: Mean life satisfaction between non-native and native English-speaking parents.
View Figure 3
Post-hoc analysis was conducted using independent samples t-tests on each item to examine whether non-native parents have lower life satisfaction than native English-speaking parents. On the Satisfaction of Life Scale, two of the five questions showed significant results when error rate was adjusted at 0.01 controlling the number of comparisons (Bonferroni correction). For the statement, "The conditions of my life are excellent," results showed a significant difference in life satisfaction between non-native (M = 4.00, SD = 3.00) and native English-speaking parents (M = 5.40, SD = 3.25), t (48) = -2.80, p = 0.004. For "I am satisfied with my life," the results showed a significant difference between non-native (M = 4.68, SD = 2.64) and native life English-speaking parents (M = 5.76, SD = 1.94), t(47) = -2.52, p = 0.008. Results for both statements indicate that non-native parents have lower life satisfaction than native English-speaking parents. Figure 4 demonstrates the significant differences in responses between native and non-native English-speaking parents in the post-hoc analysis.
Figure 4: Response to significantly different items in post-hoc analysis in the life satisfaction scale.
View Figure 4
In sum, self-esteem was not significantly different between non-native and native English-speaking parents. However, there was a significant difference in parental stress between native and non-native English-speaking respondents. Non-native respondents felt more stress than native respondents and the non-native respondents felt less life-satisfaction than the native respondents. Specifically, native parents were more than twice as likely to agree "There is little or nothing I wouldn't do for my child(ren) if it was necessary." A full 100% of native respondents "feel close to their children" compared to 92% of non-native respondents, a significant finding in and of itself. Similarly, 100% of native respondents "enjoy spending time with their child(ren)" compared to 80% of non-native respondents. Life satisfaction was significantly different between native and non-native respondents. Native respondents perceived themselves as more satisfied than non-native respondents. In particular, 72% of native respondents perceived "the conditions of their lives are excellent" compared to 60% of non-native respondents. Eighty-four percent of native respondents were "satisfied with my life" compared to 76% of non-native respondents.
This study hypothesized that non-native English-speaking parents who have children with developmental disorders will show lower self-esteem, higher parental stress, and lower life satisfaction scores compared to native English-speaking parents due to their language barrier.
The results of the current study indicated that non-native English-speaking parents do not have lower self-esteem. However, they do have higher parental stress and lower life satisfaction compared to native English-speaking parents.
The results of this study indicate that overall parental self-esteem was not affected by language status (native vs. non-native English speakers). It is worth noting that despite non-significant overall difference in self-esteem, when responses to individual items of self-esteem scale were examined, there was a trend of slightly negative tendency in responses by non-native responders compared to native responders. For example, non-native respondents were much less likely (52%) than native respondents (84%) to agree, "On the whole, I am satisfied with myself" or "I am able to do things as well as most other people" (60% vs. 88%). As well, 48% of non-native respondents, compared to 68% of native responders, reported "At times, I am no good at all" and 76% of non-native responders, compared to 64% of native responders, reported "I feel I do not have much to be proud of." And yet, this negative trend was reversed for the question "I take a positive attitude toward myself," to which 88% of non-native respondents agreed, compared to 68% of native responders.
Overall, non-native responders showed higher parental stress than native responders. When responses to each item were examined, significant differences between native and non-native responders were observed on the following three items: "There is little or nothing I wouldn't do for my child(ren) if it was necessary," "I feel close to my child(ren)," "I enjoy spending time with my child(ren)." Forty percent of non-native responders compared to 0% of native responders felt that there is little or nothing they would not do for their children if it was necessary. Yet 40% of non-native responders felt otherwise (disagreeing with this statement). The higher rate of agreement among non-native responders than native responders, as well as the split responses between agreeing (40%) vs. not agreeing (40%) among non-native respondents, could be related to 1) cultural differences, or 2) phrasing of the survey item. First, native responders may be more practical in terms of what is feasible and not feasible to provide for their children with developmental disorders. They may feel they have done all that they could for their children with developmental disorders. However, non-native respondents might not be fully aware of what they can provide for their children or feel limited in terms of how effectively they can advocate for their children due to their language barriers. Non-native respondents could also have perceived themselves as powerless due to their language barrier [9]. Second, the perceptual difference between native and non-native respondents could be an artifact caused by double negatives in the item statement ("little or nothing they would not do") and response choices (strongly agree, agree, disagree, strongly disagree).
Ninety-two percent of non-native responders compared to 100% of native responders did not feel close to their children. Eighty percent of non-native responders compared to 100% of native responders did not enjoy spending time with their children. The results could be due to their children's developmental disorder-related behavioral challenges, difficulty in communications, and the parents' lack of knowledge and skills about what to do with their children who present these challenges [3]. The observed slight difference between native and non-native responders in these two items could be culturally based difference. Some of the non-native respondents are still practicing their birth-countries' group-oriented cultural practices than native respondents who are practicing the individualistic cultural practice of the U.S. This can be a reflection of intersectionality of language and culture [6].
Native respondents' life satisfaction scores were higher than non-native respondents. When responses to individual items were examined, responders reported that the conditions of their lives are excellent (52% of non-native and 72% of native responders) and they were satisfied with their lives (72% of non-native and 84% of native responders). Overall, both native and non-native respondents perceived their lives as satisfactory despite having children with developmental disorders. However, their perception of the conditions of their lives was slightly less satisfactory for non-native respondents (52%). This could be due to cultural differences or language barrier-related challenges, as the non-native English speakers in the study are identified as immigrants.
The study examined misconceptions that native or non-native English-speaking parents have about their abilities to get services for their children with developmental disorders due to parents' language barrier. The implications of this study suggest that primarily speaking another language than English in the United States can change people's perception on their ability to obtain services for children with developmental disabilities. By identifying these challenges, non-native English-speaking families can learn to strategize and receive resources to decrease any issues caused by their language barriers and to help them advocate for their child with confidence.
Professionals and educators can use the information from this study to give parents tools and techniques that will benefit their child's education. For example, bilingual professionals can be available for parents who feel more comfortable speaking in their native language when trying to advocate for services for their child. Since non-native English-speaking parents believe that having two languages will confuse their child, educating parents how to effectively communicate to their child and understand that having multiple languages does not inhibit their child's learning is important because parents will be able to learn to utilize and appreciate their culture in a way that will benefit their child's life [14].
In addition, it is essential for professionals, such as speech-language pathologists, psychologists, and teachers, to learn about cultural diversity in order to better collaborate with parents in order to determine how to best support the child. Gonzalez [14] has created some tips when communicating to non-English speaking parents. She includes listening skills, use of technology, and techniques to establish rapport and trust with parents. These are essential when communicating with our clients and their family members to decrease the language barrier that might be present. Thus, education for professionals and parents will improve communication skills and eliminate any misconceptions that each group may have.
Seung, et al. [15] found that it is important to provide culturally sensitive intervention as early as possible to develop a child's language foundation, bilingual children with autism can have the same vocabulary spurt as typically developing children, and parental stress may decrease with positive effects of intervention. When examining non-native English-speaking parent's perception on their abilities to get services, they presented higher parental stress than native English-speaking parents. If this is the case, professionals can use information from both studies to conclude that since bilingual children can experience the same vocabulary spurt as typically developing children, it is crucial to provide them with intervention that fits with their cultural background [14]. With the necessary services, this will benefit the child's education but also reduce the parents' stress. When children are provided the services that they need, this would lead to the best outcome for the family. Thus, the result of this research has an important clinical implication because professionals can provide support that will help parents eliminate the misconceptions they have and provide services that will benefit their children and families.
There are some limitations with this research study. First, external validity is limited because most of the participants live in Orange County, California. In addition, most of the non-native participants were Vietnamese and most of the children were diagnosed with autism. Therefore, the results of this study may not generalize to various developmental disorders and other ethnicities. The sample size could have been larger to represent the intended population. In addition, this survey was self-reported, and fourteen people took the survey online whereas 36 completed the survey in person. The lack of consistency in the procedure could have influenced the results.
Most of the participants also mentioned that the survey was too long for them to complete; therefore, they may have rushed and not fully thought about their answer choices. Furthermore, a question in the background information asks about their child's diagnosis. This is a sensitive topic for some cultures [9] and could have led to parents to answer the questions dishonestly. Next, the survey was only offered in English. This could have impacted the non-native English-speaking parents' ability to answer the questions. However, they were given the researcher's phone number and email in case they had any questions about the survey question or answer choices. Another limitation is that the environment in which the participants completed the survey was not controlled. The participants could take the survey online or in person which could have caused response bias. Some people could have not answered the survey honestly if their child, relative, or spouse was next to them and looking at their responses. However, this research study has valuable information and potential to be further developed in the future research.
To continue to combat these misconceptions, future research can examine if the amount of time spent with the child may impact the parents' stress or the child's progress in their learning. Another interesting future study can be whether the involvement of the father, mother, or siblings may impact the child's ability to get services. If there is a single-parent or a two-parent house, this might hinder or benefit the child's support system. Lastly, researchers can investigate sibling stress, self-esteem, and life satisfaction when their other sibling has a disability. These future research ideas can help the family of children with developmental disorders, their siblings, and professionals. With more knowledge, families can maneuver the systems to get more services and benefit their child's life.