Perceptions of Disability: Families From Culturally and Linguistically Diverse Backgrounds The aim of the current study was to explore the perceptions of disability of families from culturally and linguistically diverse backgrounds. Investigators interviewed 10 families from diverse backgrounds and used qualitative inquiry techniques to identify shared and distinctive themes between families. Results produced themes related to diverse beliefs about the ... Article
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Article  |   September 27, 2016
Perceptions of Disability: Families From Culturally and Linguistically Diverse Backgrounds
Author Affiliations & Notes
  • Katrina Sanchez
    Florida State University, Tallahassee, FL
  • Carla Wood
    Florida State University, Tallahassee, FL
  • Disclosures Financial: Katrina Sanchez has no financial interests to disclose. Carla Wood is an associate professor at Florida State University.
    Disclosures Financial: Katrina Sanchez has no financial interests to disclose. Carla Wood is an associate professor at Florida State University.×
  • Nonfinancial: Portions of this paper were presented at the 2013 Convention of the American Speech-Language-Hearing Association.
    Nonfinancial: Portions of this paper were presented at the 2013 Convention of the American Speech-Language-Hearing Association.×
Article Information
Cultural & Linguistic Diversity / Part 2
Article   |   September 27, 2016
Perceptions of Disability: Families From Culturally and Linguistically Diverse Backgrounds
Perspectives of the ASHA Special Interest Groups, September 2016, Vol. 1, 38-46. doi:10.1044/persp1.SIG16.38
History: Received November 27, 2015 , Revised June 5, 2016 , Accepted July 1, 2016
Perspectives of the ASHA Special Interest Groups, September 2016, Vol. 1, 38-46. doi:10.1044/persp1.SIG16.38
History: Received November 27, 2015; Revised June 5, 2016; Accepted July 1, 2016

The aim of the current study was to explore the perceptions of disability of families from culturally and linguistically diverse backgrounds. Investigators interviewed 10 families from diverse backgrounds and used qualitative inquiry techniques to identify shared and distinctive themes between families. Results produced themes related to diverse beliefs about the causes of disability, perceived helpfulness of intervention, reactions to diagnosis, informational resources, and perceptions of bilingual services.

Speech-language pathologists in schools in the United States provide services and supports to a culturally and linguistically diverse population. The racial, ethnic, and linguistic background of the U.S. population has changed drastically over the last two decades (U.S. Census Bureau, 2012). Despite serving a growing number of children of immigrants and families from migrant backgrounds, there is a paucity of research on culturally diverse perspectives on disability. Additional research on services, supports, and perceptions of disabilities in linguistically diverse communities would be beneficial to add to our global awareness and understanding. Improved cultural awareness and responsiveness may help build partnerships and alliances by enhancing SLPs' understanding of perceptions or experiences that may be shared by immigrant and second-generation immigrant families of children with disabilities. A review of related issues is provided including: diverse perspectives on disability; access to services and supports in culturally and linguistically diverse communities, and potential implications for family quality of life and family-professional partnerships.
The importance of knowledge on diverse perspectives is also recognized for preparing high quality personnel. Banerjee and Luckner (2014)  conducted a study regarding the perceived training needs of early childhood professionals who work with culturally and linguistically diverse young children and their families. They also looked at the knowledge and preparation of these educators relative to children from diverse backgrounds. Professionals reported a lack of resources, tools, and collaborations that are responsive to cultural diversity, which was consistent with other studies (Banerjee & Luckner 2014; Jackson, Leacox, & Callender, 2010). It was also reported that there was a lack of evidence-based practices that can be implemented in the field. Areas that would be beneficial include evidence procedures, research-based intervention methods, and approaches for children from culturally and linguistically diverse backgrounds.
Diverse Perspectives on Disability
Disability is defined within cultures and can differ between and within groups. According to the World Health Organization, disability is broadly defined as, “an umbrella term for impairments, activity limitations, and participation restrictions” (Filmer, 2008, p. 142). Other sources stipulate disability as “extensive” in nature. Other sources identify potential types within the definition and include visual, hearing, speech, physical, and mental disabilities.
A few studies have examined parents' perceptions of disability and services. In one such study, Kummerer, Lopez-Reyna, & Tejero Hughes (2007)  examined the perceptions and beliefs of 14 mothers of Mexican-American immigrant backgrounds regarding their children's communication disabilities. The participants reported varied beliefs about the cause of their child's disability, including too few extended family members in the home and the superstition of cutting the child's hair too early. Among suggestions, mothers recommended that professionals should speak the family's home language or utilize interpreters, and should share informational resources about the therapy process and intervention techniques.
Shogren's descriptive study (2012)  aimed to identify mothers' perceptions of self-determination and self-determined behavior of Hispanic transition-age youth that have severe disabilities. The study surveyed seven Hispanic mothers of children with severe disabilities. It was designed to analyze how they see the role of self-determination in their family, how they perceive cultural influences on self-determination, and how self-determined behavior plays a role in school. Generally self-determination is thought to entail goal-directed and self-regulated behavior. It has been defined as, “an understanding of one's strengths, and limitations together with a belief in oneself as capable and effective [allowing individuals] to take control of their lives […]” (Field, Martin, Miller, Ward, & Wehmeyer, 1998, p. 115). In the Shogren study, researchers grouped responses based on how they define self-determination, creating opportunities for self-determination, goals for the future, cultural influences, and school-family conflicts. Results revealed that mothers felt that self-determination was important for their children, however, they described differences in the ways that they used self-determined behavior in the home. Interestingly, the differences noted caused conflicts between activities at home and at school.
Family Involvement in Special Education Services
Based on the literature, linguistic differences are one of the most significant barriers to effective family-professional partnerships for families of ELLs (Ruiz-de-Velasco & Fix, 2000). Parents, related service personnel, and school staff report feeling limited by inability to communicate with parents of ELLs (Jackson, Leacox, & Callender, 2010). Language barriers affect both written and oral communication and create the need to innovative problem solving to transcend barriers to effective communication.
Brown and Brandon (2009)  summarized five separate articles focusing on cultural backgrounds and perspectives of (African American, American Indian, Asian, and multiracial families) in an effort to identify strategies that can be used to enhance family relationships from a variety of culturally and linguistically diverse backgrounds. Results indicated that many parents/caregivers from such backgrounds are underrepresented in involvement in the school. Differences in perceived involvement were also noted by Shogren (2012)  in which Hispanic mothers who participated reported feeling that their cultural values were disregarded or disrespected when working with professionals when attempting to set goals for the future. Other potential reasons for lack of involvement, described by Brown and Brandon (2009), included perceived lack of time and energy, feeling shy or embarrassed of educational level or linguistic abilities, a lack of understanding of information regarding the structure of the school and accepted communication, feeling unwelcomed by teachers and other school personnel, and teacher and administrator assumptions regarding parents' interest or ability to help in their children's schooling. Further research in these areas is necessary to raise awareness and discover strategies that will help avoid these parent concerns.
Family Involvement and Inclusion in Community
Parents' cultural backgrounds and views regarding disability may affect their involvement in special services and the extent to which they desire or pursue opportunities for their children to be included in the community (van Kleeck, 1994). The notion of culturally situated goals refers to creating goals that align with the norms and daily routines of the family which requires an understanding of the child's development within the cultural context of the family (Fuller & García Coll, 2010). Culturally situated parenting goals may influence the extent to which involvement in services and/or the community is desired (McCollum, Yates, Ostrosky, & Halle, 2014) and motivating. Some sources suggest that cultures differ in the extent to which parents utilize specialized support services, seek medical care, and/or desire inclusion in the community for their child with a disability (Bennett, Zhang & Hojnar Tarnow, 2014). If a family has a positive view of the child's disability and expects the child to live a normal life, the family may be more likely to seek out opportunities and services for the child with a disability. Conversely, if a family holds a fatalistic view of the child's disability and does not expect the child to be an equal and contributing member of the family and community, the family may be uninvolved and less vested in services or the child's participation in community activities.
The aim of the current study was to identify diverse perspectives in order to advance our understanding to better address family needs and therapy outcomes. The study aimed to expand the existing literature base on perceptions of disability and access to services and supports from culturally and linguistically diverse communities through further examination of families' experiences and perceptions of disability.
Methods
The current project was approved by the human subjects review committee at Florida State University (HSC #: 2014.12354). Investigators disseminated information through two cooperating agencies: a university speech and hearing clinic and a private clinic in the community providing services to young children and their families. The investigators also circulated invitations to participate to alumni of a speech-language pathology training program who were encouraged to invite families of children with communication disorders. Fliers, invitations, and consent forms were provided in English and Spanish. Interested families who provided consent were contacted by the investigators to schedule a semi-structured interview. Parents and caregivers responded through means of online or phone surveys and interviews in their language of choice, English or Spanish. The survey consisted of 26 short-answer questions pertaining to the family's cultural background, thoughts about their child's disability, and their perception of support and services the child is receiving.
Participants
Respondents included primarily Hispanic/Latino families including parents who reported origins from Columbia and Honduras (n=2), El Salvador, Venezuela (n=2), Cuba (n=2), and Guatemala. Additionally, respondents reported Native American ethnicity, with origins from the Dine and Acoma Pueblo tribes. All participants reported that they identify with their cultural background and that culture has had an influence on the way they raise their child. All participants also reported that they would prefer their therapist knew their cultural background and would like to or have already discussed language preferences for therapy. Refer to Table 1 for characteristics of respondents and their child with a disability.
Table 1. Participant Characteristics
Participant Characteristics×
Participant Ethnicity or Country of Origin Relation to Child Age of Child Diagnosis of Child
Parent 1 Hispanic, Mother Adult Cerebral Palsy
Cuba 24
Parent 2 Hispanic, Venezuela Mother 16 Autism
Parent 3 Hispanic Mother and Father Adult Cerebral Palsy
Cuba
Parent 4 Hispanic Mother 10 Deletion chromosome 22
Venezuela
Parent 5 Hispanic Mother 6 Autism/ADHD
Columbia
Parent 6 Native American Father 4 Speech and Language Impairment
Dine &Acoma Pueblo
Parent 7 European/Hispanic Mother and Father 7 Deaf/Hard of Hearing
Ireland/Germany/Guatemala
Parent 8 Hispanic Mother 7 ADD/Bipolar/Schizophrenia
Honduras
Parent 9 Hispanic Mother 5 Unknown diagnosis/Severe speech and language delays
Guatemala/El Salvador
Parent 10 Hispanic Father 15 Autism
Cuba
Table 1. Participant Characteristics
Participant Characteristics×
Participant Ethnicity or Country of Origin Relation to Child Age of Child Diagnosis of Child
Parent 1 Hispanic, Mother Adult Cerebral Palsy
Cuba 24
Parent 2 Hispanic, Venezuela Mother 16 Autism
Parent 3 Hispanic Mother and Father Adult Cerebral Palsy
Cuba
Parent 4 Hispanic Mother 10 Deletion chromosome 22
Venezuela
Parent 5 Hispanic Mother 6 Autism/ADHD
Columbia
Parent 6 Native American Father 4 Speech and Language Impairment
Dine &Acoma Pueblo
Parent 7 European/Hispanic Mother and Father 7 Deaf/Hard of Hearing
Ireland/Germany/Guatemala
Parent 8 Hispanic Mother 7 ADD/Bipolar/Schizophrenia
Honduras
Parent 9 Hispanic Mother 5 Unknown diagnosis/Severe speech and language delays
Guatemala/El Salvador
Parent 10 Hispanic Father 15 Autism
Cuba
×
Respondents' children ranged in age from 4–16 years old and two respondents also had adult children (21 and older). All respondents lived in the United States and resided in Florida, New Mexico, or Kansas. Parents spoke English or spoke English and Spanish conversationally, except for two families from Florida who only spoke Spanish. Children of the respondents had disabilities ranging in severity from mild to severe affecting cognition, ability to communicate verbally or through alternative and augmentative communication, and whether or not the child is ambulatory. Respondents reported that their children had the following disabilities: autism (n=3, one of which also has diagnosis ADHD), Cerebral Palsy (n=2), Deaf/Hard of Hearing (n=2, one of which also has diagnosis cerebral palsy), Bipolar and schizophrenia (n=1), ADD/ADHD (n=2, one of which also has diagnosis bipolar with schizophrenia), deletion in chromosome 22 (n=1), and other unknown diagnoses/speech and language impairment (n=3).
Procedures
The investigators utilized questions derived from the literature regarding potential differences in experiences, perceptions, and beliefs surrounding disability and support services. The draft questions then served as a guide during semi-structured interviews with family members of children with disabilities. The first author conducted the interviews over the phone, in person, and with asynchronous e-mail correspondence depending on the parents' preferred means of communication. The first author typed responses and deconstructed responses into units or thoughts using the naturalistic inquiry procedures (Lincoln & Guba, 1985) in which units are described as individual thoughts that can stand alone. The first and second authors met to examine similarities and differences between units across participants to identify shared themes.
Researcher Stance
The first author who conducted the interviews was a graduate student in speech-language pathology at the time of the interviews. She had experience partnering with families in schools and a variety of natural environments including homes and community settings, as well as in private therapy centers. The first author was a native Spanish speaker and established relationships with families in their native language, facilitating valid and reliable responses during interviews.
Analyses
Responses were broken down by associated question and units or thoughts that could stand alone, using naturalistic inquiry techniques (Lincoln & Guba, 1985). Units were reviewed and transferred into a Microsoft Excel spreadsheet. Questions were listed with corresponding responses from each participant for more accurate comparisons. Data were analyzed for commonalities among responses to identify themes.
Results
Several themes emerged from the interviews with parents of children with disabilities from culturally linguistically diverse backgrounds. Among the most prevalent themes based on data comparisons, respondents discussed: beliefs about the causes of their child's disability, their own reactions to diagnosis, informational resources helpful through evaluation and treatment process, helpful treatments, and perceptions of bilingual services.
Beliefs About Causes of Disability
Parents shared varied beliefs about the cause of or reason for their child's disability. Among the causes discussed, it appeared that some perceived causes were not based on scientific information, including that the disability was caused by or related to dual language learning or violations of taboos. Others believed there was an unknown medical cause such as blood type, vaccine injections, or “bad genes.” One respondent noted that she thought the symptoms were in part due to the lack of a father figure.
Families Reactions to Diagnosis or Disability
When parents were asked how they felt when they received a diagnosis or have not received a diagnosis, responses varied from: feeling of guilt/shock, acting supportive, wanting answers, and blaming others. Responses included information on how families were told, which provided additional input into how families from a variety of generations were affected.
One family whose adult child with a disability was born in Cuba stated:

In Cuba, a therapist told us that in these cases you take her to the top of the mountain and leave her there. We decided to move to Miami and started researching and looking for answers. We finally got connected with United Cerebral Palsy.

All families expressed their continued support for their children, although initially some required more time to accept the problem, as stated by a father from a Cuban household below.

My family was very supportive. My reaction as a father though… I reacted saying how could that be? I start blaming. You never really want to believe that it's happening to your kid so you try to find another reason. Eventually my wife kept telling me and I knew I had to accept it and start doing something about it.

One mother from Honduras noted that while she supports her son in any way she can, she refrains from telling other family members about her child's disabilities as she stated, “I haven't told my family about his full diagnosis, I only told them that he has ADD because they would think he's crazy and they would blame it on me.”
Information Families Received About Diagnosis
Families mentioned a variety of informational responses from clinicians and health professionals regarding their child's diagnosis, however 30% of parents from this study expressed that they did not know the formal diagnosis of their child at the time of this study's interview. Five of the 10 parents stated that they or their child's biological parent are partially at fault for the cause of disability. At the time of diagnosis, 70% of parents did not know details about the nature of the disability. Families such as parents of Native American descent expressed an interesting point regarding their background knowledge of diagnosis and how the family addressed the diagnosis as stated below.

Most tribes have taboos to explain diseases, disability, [and] sickness. They're [the taboos] kind of sociocultural rules for living, raising children, and interacting with other people. When the taboos are violated due to personal choice or lifestyle; disease, disability, sickness occurs. As in my child's case, we sought traditional healing through a medicine man to help address his developmental delays by addressing any taboos we violated and to help address whatever ailment was present in our child. This was also intended to help ease the frustration and guilt we had as parents. (Navajo- Native American)

Beliefs About Helpfulness of Intervention
When asked about their beliefs and knowledge of treatments and cures, respondents identified different aspects of treatments or services that they believed to be important or effective. One respondent identified the use of a Medicine Man (also used are traditional ceremonies, chants, herbs, and songs to cure illness/disability) to restore spiritual and physical harmony. Another family of Columbian background identified bilingual therapy as an important component. One family identified family-centered services; and another family (of Cuban background) identified that holistic medicine was important to her and her family.
Parents identified several helpful supports including: information gathering; advocacy; early intervention; bilingual, culturally sensitive therapists; mentors; and family support groups. On the topic of the importance of culturally sensitive therapists, one Native American family responded:

We definitely wish to have all stakeholders in my child's education aware of his cultural and linguistic background. I always remind clinicians who work with (my child) that we want him to be bicultural and be able to navigate two different cultures. So, we are fine with traditional approaches if they meet his needs.

The parent expanded saying that they valued “professionals who demonstrate cultural competency by acknowledging and respecting family values and beliefs.” Similarly, one respondent of Honduran origin, responded by saying, “There needs to be more therapists that speak Spanish or can help with interpreters.”
Additionally, many families initiated comments that reflected that they valued support in the area of advocacy. This was exemplified in the comment of a parent of Honduran origin, who indicated accessing support services and informational resources was challenging as she stated, “Finding a case manager has been difficult, neurologist, psychiatrist…. We want a therapist who will care and take the time to help the family understand.”
Parents' Perception of Bilingual Therapies
Parents appeared to have many varying responses about bilingualism and therapy services. Families in the past and present have been told to discontinue use of two languages due to delays in language. The families were asked what they would prefer and how they perceive bilingual therapies. Results demonstrated that 20% of parents say their child has received bilingual speech and language services, where there may be a possible lack of awareness of bilingual services. Another 40% state that they feel that their child is not receiving culturally sensitive services. Additionally, 30% of parents are currently looking for bilingual services, as some parents only speak Spanish and want their child to continue learning in Spanish, and/or families want their child to maintain their original language.
Discussion
Overall, the findings substantiated the literature on cultural differences and the importance of SLPs' responsiveness. Parents' beliefs about causes of disability were interesting and somewhat consistent with the varied perceptions reported in Kummerer et al. (2007) . Since families' responses reflected a lack of information or understanding about the medical nature of the disorder, additional access to informational supports and resources may be beneficial. Differences in perception may stem from misinformation or lack of resources for families. Barriers in language and communication may have contributed to misunderstandings and misinformation among families. The number of misperceptions may suggest that we have not fully accomplished providing access to informational resources in parents' native language or in disseminated informational supports in ways that they prefer to access information. Further examination of the responses suggests that families within large communities like Miami reported having easy access to culturally responsive services. In contrast, families in rural areas of northern Florida reported having more difficulty finding culturally responsive services.
On average, parents spent most time responding to questions related to the cause and diagnosis of the disability, how the disability affects them as parents, advice they could offer other parents, and the current or future supports that could help. Topics appeared to be important to families, because families typically spent between 1 and 3 hours discussing responses with the interviewer.
Limitations
Themes of the current study should be interpreted cautiously because the sample size was relatively small and responses varied greatly even though most were from a Hispanic background. Variance in responses was noted across many factors including cultural beliefs, education, and experiences from treatment or the lack of education and treatment. Because of the small sample size and large variability in responses, it cannot be assumed that trends would be generalizable.
Implications and Suggestions for SLPs
Despite the limitations of a small qualitative study, themes in responses may hold insights for service providers. Given the multitude of comments from respondents regarding the value of culturally responsive services, findings would support the notion that families may be more receptive to therapists who acknowledge and discuss cultural background and preferences for therapy with the families. Considering responses on informational supports and resources, findings suggest that additional studies may be useful in examining potential barriers and challenges in health informatics, or access to informational resources about disability, with considerations for the wide cultural and linguistic diversity that comprise our communities of service. Future studies are needed to further examine how families access materials in their first language, how and if translation occurs, and families' preferred sources of informational supports.
Based on the families' responses, several suggestions for service providers emerge. In an effort to convey respect for diverse background and implement culturally responsive practices, SLPs may benefit from engaging in conversations with parents about their cultural background, language, family traditions, and preferences for services. Themes in the current study would support the recommendation that providers take time to inform clients about diagnosis, characteristics of disabilities, factors that influence outcomes and how to access desired services and supports. It would be important to ensure linguistic access to informational resources and handouts. The school-based team may need to include additional members with expertise in serving language minority children, specifically including someone who speaks the child's native language. It may be beneficial for the school or district to identify members in the community who would be willing to serve as a language liaison if interpreters are not available. This proactive step in establishing a network of language liaisons each school year can be helpful in facilitating your timely response to new referrals throughout the school year from varied linguistic backgrounds.
Themes in participants' responses would support the recommendation to check for understanding frequently to ensure parents understand service options and factors influencing outcomes to engage and empower families in informed decision-making. Among recommended supports: be explicit, incorporate repetitions, pair with existing knowledge, check for understanding, and expand or extend the information. Providing family-centered services to ELLs with disabilities will likely require more support for language and communicative exchanges than what SLPs may be accustomed to using with students and families who are monolingual. Speech-language pathologists may benefit from employing strategies recognized in the literature. Strategies highlighted in the existing literature included: (a) respect the uniqueness of each family system; (b) honor the role of the parent; (c) view diversity as an asset; (d) create alliances with cultural guides; (e) communicate in culturally appropriate ways; and (f) offer families information about programs and services in a sensitive and responsive way (Burns & Corso, 2001; Harry, Kalyanpur, & Day, 1999; Jackson, Leacox, & Callender, 2010; Kummerer et al., 2007). Based on the literature, these strategies may entail using the family's heritage language whenever possible (Kummerer et al., 2007); being sensitive to areas of family life that may be affected by the child's disability (Jackson, Wegner, & Turnbull, 2010); and developing action plans that take into account the families' priorities and preferred roles (Jackson, Traub, & Turnbull, 2008).
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Table 1. Participant Characteristics
Participant Characteristics×
Participant Ethnicity or Country of Origin Relation to Child Age of Child Diagnosis of Child
Parent 1 Hispanic, Mother Adult Cerebral Palsy
Cuba 24
Parent 2 Hispanic, Venezuela Mother 16 Autism
Parent 3 Hispanic Mother and Father Adult Cerebral Palsy
Cuba
Parent 4 Hispanic Mother 10 Deletion chromosome 22
Venezuela
Parent 5 Hispanic Mother 6 Autism/ADHD
Columbia
Parent 6 Native American Father 4 Speech and Language Impairment
Dine &Acoma Pueblo
Parent 7 European/Hispanic Mother and Father 7 Deaf/Hard of Hearing
Ireland/Germany/Guatemala
Parent 8 Hispanic Mother 7 ADD/Bipolar/Schizophrenia
Honduras
Parent 9 Hispanic Mother 5 Unknown diagnosis/Severe speech and language delays
Guatemala/El Salvador
Parent 10 Hispanic Father 15 Autism
Cuba
Table 1. Participant Characteristics
Participant Characteristics×
Participant Ethnicity or Country of Origin Relation to Child Age of Child Diagnosis of Child
Parent 1 Hispanic, Mother Adult Cerebral Palsy
Cuba 24
Parent 2 Hispanic, Venezuela Mother 16 Autism
Parent 3 Hispanic Mother and Father Adult Cerebral Palsy
Cuba
Parent 4 Hispanic Mother 10 Deletion chromosome 22
Venezuela
Parent 5 Hispanic Mother 6 Autism/ADHD
Columbia
Parent 6 Native American Father 4 Speech and Language Impairment
Dine &Acoma Pueblo
Parent 7 European/Hispanic Mother and Father 7 Deaf/Hard of Hearing
Ireland/Germany/Guatemala
Parent 8 Hispanic Mother 7 ADD/Bipolar/Schizophrenia
Honduras
Parent 9 Hispanic Mother 5 Unknown diagnosis/Severe speech and language delays
Guatemala/El Salvador
Parent 10 Hispanic Father 15 Autism
Cuba
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We've Changed Our Publication Model...
The 19 individual SIG Perspectives publications have been relaunched as the new, all-in-one Perspectives of the ASHA Special Interest Groups.