Lessons learned from Hispanic mothers in the United States: Recommendations for personnel preparation and research in visual impairment

Abstract

This study reports the results of interviews conducted with families from Hispanic backgrounds who have children with visual impairments receiving special education services. Families were recruited in two states within the United States. A total of 11 Hispanic mothers participated in the study. The interviews were conducted to learn about family needs and perspectives to inform personnel preparation. Four major themes emerged from the interviews: quantity and quality of services, communication issues, need for resources, and cultural differences. Discussion provides insights learned by the researchers when working with culturally and linguistically diverse (CLD) families, including considerations for data gathering, cultural rapport, and recruitment of participants.

Keywords

Culturally and linguistically diverse families Hispanic Latino visual impairment

Literature suggests that best practices for working with exceptional students from culturally and linguistically diverse (CLD) backgrounds, and their families should include the use of techniques to enhance effective communication with families, use of culturally relevant teaching, and awareness of one’s personal beliefs (Araujo, 2009; Jordan, Reyes-Blanes, Peel, Peel, & Lane, 1998). In a study conducted by Joshi, Eberly, and Konzal (2005), general education teachers expressed an importance for knowing about their students’ cultures and recognized that family social values, communication patterns, and child rearing practices play a role in a child’s learning. The general education teachers also identified language barriers, time constraints, and difficulty negotiating the school culture as some of the reasons parents may not be involved in the child’s education. However, little evidence that teachers had or utilized practices to bridge the gap with families was evident in their study. Xu (2007) suggested that families from diverse backgrounds may feel powerless when working with professionals depending on the manner in which these professionals engage with them, highlighting a need to explore the perspective of families in order to gain insight into better preparing teachers.

When serving students with special needs, the connection and rapport that teachers have with families becomes even more important. It is not atypical for a special educator to work with a student and his or her family over the course of several years. Teachers of students with visual impairments (TSVIs) fall into this category and may work with a child throughout his or her educational experience. While the Council for Exceptional Children’s (CEC) (2009) standards for beginning special education teachers highlights the importance of educators working effectively with families from diverse backgrounds, data suggest that TSVIs may not be comfortable with their level of competency on these standards (Conroy, 2008; Correa-Torres & Durando, 2008; Milian & Ferrell, 1998). Understanding the needs and perspectives of CLD families within the context of this generally closer relationship between TSVIs can provide insight both to personnel preparation programmes wishing to improve competencies and to researchers wanting to learn from family experiences.

A literature review conducted in the area of visual impairments identified available information regarding service delivery when working with students with visual impairments who are from Hispanic backgrounds (Conroy, 2005; Conroy, Rude, & Phillips, 2006; Correa-Torres & Durando, 2011; Milian & Erin, 2001); however, only a few published studies were found that focused on the perspective of families. Milian (1999) found that Latino families were positive about the importance of being involved in their child’s education, but expressed apprehension about being able to support academic areas, especially when language or education level was a barrier. In another study which was focused on satisfaction regarding school efforts to support families, Milian (2001) found that Latino families of children with visual impairments reported that schools provided good information about their child’s progress but were not encouraging about involving them as volunteers, providing home visits, or helping them teach self-help skills at home. Ratings by families in these areas were partially linked with the age of the child, language spoken by the families, and number of years in the United States (Milian, 2001). In addition, Dote-Kwan, Chen, and Hughes (2009), investigated the perceived needs of Latino mothers and fathers compared to Anglo parents of young children with visual impairments. In this study, Latino mothers were found to want more information about their child’s condition and more assistance with financial matters than Anglo mothers.

Overall, the limited availability of published studies on families of children who have visual impairments who are from Hispanic/Latino backgrounds highlights the need to continue research in this area. In the United States, the terms Hispanic or Latino are the terms, often used interchangeably, that are most commonly used to categorize individuals who trace their roots to Spanish-speaking countries (Taylor, Lopez, Martínez, & Valesco, 2012). Census statistics from 2010 estimate that 50.5 million Hispanics were living in the United States (about 16% of the population) with the Hispanic subgroups of Mexican, Puerto Rican, and Cuban being reported by approximately three-quarters of the respondents (Ennis, Ríos-Vargas, & Albert, 2011). Therefore, the purpose of this study was to gain additional perspective from families from Hispanic backgrounds in order to provide information for personnel preparation practices. More specifically, this study focused on families from Hispanic backgrounds and their perceptions regarding interactions with professionals, in particular TSVIs, and the services they received. In addition, the process of conducting the study informed about research practices that might best promote family opportunity to share their perspectives.

Method

Sampling procedures

Participants for this study were recruited by sending information via email about the study to all TSVIs working in the state of Colorado and a large metropolitan area of Illinois. TSVI support was requested to contact families from Hispanic/Latino backgrounds who have children with visual impairments. Interested families who self-identified as being from this background were asked to directly contact one of the researchers to set up an interview. The study procedures were approved by the Institutional Review Boards at both researchers’ universities during the time of data collection.

Interviews

Qualitative research methods were used in this study. Interviews with interested families were conducted by one of the two researchers, either in person or by phone and in the language selected by the family member (Spanish or English). Interviews were audio recorded and then transcribed by a graduate research assistant who was fluent in both languages. After reviewing the literature, 14 interview questions were developed specifically for this study and asked of each participant (see Table 1). Prior to conducting the interviews, participants were given an opportunity to read and sign the consent form, review the interview questions, and also fill out a demographic questionnaire that included self-identification of ethnicity, primary language used at home and school, and information about their child’s age, school placement, visual condition, and presence of any additional disabilities. During the interviews, questions were elaborated upon when the interviewer or interviewee felt further clarification was necessary. Each interview took approximately 20–30 min. Participants in this research project received a small honorarium in exchange for their time and thoughts.

Table 1.

Interview questions.

Tell me about the services/support you receive from the TSVI/OMS who work with your child.

How are services provided?

How are meetings with you conducted?

How do they communicate with you?

How can service providers be more supportive to your family when working with your child with B/VI?

What is the most effective way for TSVI/OMS to communicate your child’s needs to you?

How could professionals help you/support you to be more involved in your child’s education?

What are the resources in the community or nationally with which are connected?

What would you like to know about other resources available for your child?

What do you think TSVI/OMS understand the most about your culture when working with your child?

What are some of the challenges when interacting with teachers and other professionals who work with your child?

What would you like your child’s teachers and professionals to know about your culture?

Is there anything else you would like to share?

Do you have any questions for me?

B/VI: blind/visually impaired; TSVI: teachers of students with visual impairments; OMS: orientation and mobility specialists.

Participants

A total of 11 families, 6 from Colorado and 5 from Illinois, participated in this study. All of the family members interviewed for this study were female (mothers). Participating families were asked to indicate their ethnic background. This was an open-ended question since families may have preferred to identify themselves by country of origin rather than by a pre-conceived, general category (Taylor et al., 2012). The families identified themselves as Hispanic (Mexican) (n = 1), Hispanic (n = 7), Caucasian Hispanic (n = 1), and Hispanic-American (n = 2). Among the families who participated in this study, eight of them indicated use of Spanish as their primary language at home, while three identified English as their main language at home. Eight of the interviews were conducted in Spanish, and three were conducted in English. Table 2 provides demographic information about the children with visual impairments in these families.

Table 2.

Demographics of the participants’ children with visual impairments.

Participants	Child’s age	Gender	Self-identified ethnicity	Eye condition	Visual learner	Additional disabilities	School placement
1	2 years	F	Hispanic	Nystagmus, low vision	Yes	No	Home
2	6 years	M	Caucasian and Hispanic	Septo-optic hypoplasia	Yes	Yes	School for the blind
3	7 years	M	Hispanic	Retinopathy of prematurity, light perception	No	Yes	General education
4	6 years	F	Hispanic-American	Microphthalmia	No	No	General education
5	7 years	M	Hispanic	Cone rod dystrophy, achromatopsia, nystagmus	Yes	No	General education
6	2 years	M	Hispanic	No central vision	Yes	Yes	Home
7	18 years	F	Hispanic	Legal congenital amaurosis, peripheral vision (left)	Yes and no	No	General education
8	19 months	M	Hispanic	Nystagmus	Yes	Yes	Home
9	3 years	F	Hispanic	Unknown	No	Yes	General education
10	2 years	M	Hispanic (Mexican)	Optic nerve hypoplasia	Yes	Yes	Pre-school centre for B/VI
11	Missing	F	Hispanic	Missing	No	No	General education

B/VI: blind/visually impaired.

Data analysis

Following the interview and transcription processes, data were analysed to determine systematic categories through coding. Coding was conducted independently by the two researchers and compared for consistency during all phases of the data analysis process, through the use of the constant comparison method. During this process, the transcription from each interview was carefully reviewed for meaning units (Merriam, 1998). The meaning units for each participant were grouped into categories based on frequency of occurrence, then labelled with a provisional category label. Each participant was then compared with the subsequent participant, again in search of categories established through repetition of meaning units. After comparing each transcript to all the other transcripts, the categories were examined for consistency across all participants. Categories that emerged across a majority of participants were retained, and the rest were discarded for lack of support. Comparisons were made between meaning units for different groupings in order to note any patterns (e.g., noticeable differences in responses between families using Spanish and families using English at home). Finally, categories were clustered together into themes based on similarity of content.

Results

Four themes emerged consistently across a majority of the participants: quantity and quality of services, communication issues, need for resources, and cultural differences. Within the services theme, families expressed being grateful for the services their child was receiving and felt that professionals were doing what they could to support the child. However, there was a desire for more services and information in specific areas such as braille and orientation and mobility (safe travel techniques). A majority of families expressed that they wanted their child to be independent and that more support in the home would be helpful.

In terms of more services and independence, one mother stated,

He needs a lot of resources. I would like to see, like watching my other sons in the street that walk alone, I don’t want him to be at my side, [I want him to have] all the opportunities of this country, even though he isn’t from here but he has always grown up here. I would like, well, that he has all the opportunities that other children have here [translated statement].

Another mother noted,

Well, I believe that there should be more opportunities for children with visual problems. Like, besides the classes given in school, that they have the opportunity to do something else after school because at times he gets bored. He watches TV, but he gets tired, his eyes get tired. He would like to do something. But, because he has problems with light, we cannot go outside much [translated statement].

In the area of communication, families who identified Spanish as their primary language were consistent in identifying language as a barrier to communicating with professionals and receiving information. They recognized that English is the dominant language and did not expect professionals to know their language, but viewed their inability to speak English proficiently as a barrier in attending events, communicating their needs and thoughts with professionals, and understanding written communication sent home. Most families stated that written communication was inconsistent and provided via notes, text messages, and emails. When information was provided, it was generally in English. The use of interpreters was another common category within communication. Generally, interpreters were available for meetings. In addition, some families receiving early intervention also had interpreters during home visits that could also help with written information. Although interpreters were available many times, they were not available all the time, which was a common concern for many of the families in the study. When interpreters were not available, meetings were cancelled or paraprofessionals or family members were used.

As one mother stated in response to a question about what would be the most effective way for teachers to communicate with the family, ‘More effective would be that I knew how to speak English, because it is very difficult for them and for us [translated statement]’. Another mother stated,

I have the support, yes, the support I have, the difficult thing is the language. If there is an event or something that my child has to participate in, it is the same problem, because of the language, that they speak pure English there [translated statement].

In terms of resources, most families stated that they were not familiar with what was available locally or nationally and expressed high interest in learning more. In particular, families wanted more information about extra-curricular activities appropriate for their child and local resources such as parent support groups. Despite the interest in wanting to be involved in activities, most of the families listed at least one barrier to participation. Identified barriers included transportation (activities being far away or a need to use public transportation), time available due to family and work responsibilities, costs, and language. In terms of time constraints, families wanted help in sifting through opportunities that were available to select the most relevant ones instead of receiving an abundance of written information without guidance.

One mother mentioned,

They send many paper with events but since they are in English, they haven’t told me that some of them like Boy Scouts are for children with visual impairment, but there is the problem that he wasn’t born here so he doesn’t qualify and they want us to pay a lot of money for him to attend.

Another mother suggested,

[There should be] more programs, because there are parks and recreation centers which have activities every summer and this and that, but there is a lack of programs for children with [disabilities]. Information, support programs for parents, and support programs for [the children] themselves, and this is what I would like to have more of [translated statement].

Regarding culture, the majority of families believed that professionals did not understand their culture. Some expressed that it would be beneficial for professionals to better understand the cultural background of the family (e.g., customs, the role of the extended family, closeness of family) in order to have a more accurate perspective of their child within the school context. However, at the same time, a majority of families did not seem to have expectations that professionals would actually be able to understand their culture and provided specific examples on what they would like professionals to know about them. One example that did emerge in the interviews involved families expressing desire for professionals to understand that they did want to support their child at home, but sometimes, barriers such as language and not understanding an assignment got in the way.

One mother, in regard to professionals understanding their culture, stated, ‘No, they are really nice people, well, they mean really well, you know, I really appreciate that from them, but they don’t know our culture, nothing’. Another mother indicated, ‘I believe that it would be interesting for them and for us that they know more about our cultures and about our countries so that they will understand our children better [translated statement]’.

Discussion

Several of the themes that emerged in this study parallel those found in other studies including the key importance of considering how language, communication, and other logistics can create barriers between families and professionals and the desire of families to receive information about their child (Dote-Kwan, Chen, & Hughes, 2009; Milian, 1999, 2001). In addition to these themes, an interesting pattern of responses was observed. When we conducted a closer analysis of the specific participants where a majority of themes emerged, it revealed that they mostly came from interviews of families who identified as Hispanic or Hispanic (Mexican). More often than not, the outliers (individuals identifying different themes or not having similar concerns) were from the families who self-identified themselves in this study as Hispanic-American or Caucasian-Hispanic (see participants section). This highlights the importance to first ask families how they identify themselves (and not giving them a cultural label based on our opinion) and second, avoid thinking that all families from similar backgrounds have the same needs. The families in this study who chose a term different from Hispanic or Latino may have done so to indicate a varied cultural connection, for example.

Based on the findings of this study, some specific suggestions for TSVIs or other professionals to effectively work with students with visual impairments who are from Hispanic backgrounds and their families might include the following:

Be comfortable asking questions to and of the family, and show interest in them as individuals, and interest in their culture, language, and customs.

Offer to work directly with families to show techniques and suggestions for working with their child and offer to do home visits.

Consider the perspective of culture when creating the activity/context for teaching skills.

Remember to avoid stereotype. Although a student and his or her family might identify with a specific ethnic group, in this case Hispanics, remember that not all members of that group have the same needs or experiences. Individualization when working with different families to address their unique needs is crucial.

Create a system that works for the family to provide information in their native language.

Learn how to find and use interpreter services effectively, and know what to do when these services are not available.

Find ways to provide materials in the native language of families and know what to do when they are not available.

Communicate with families about barriers preventing use of resources and help families problem-solve through those barriers.

In addition to the main thematic findings of this study, a secondary set of suggestions emerged regarding research methodology when working with families from diverse backgrounds. These suggestions are based on the researchers’ reflections about the process of identifying interested participants and the interview process itself. To a certain extent, the selected research methodology may have impacted the amount of information that was gathered from families. For example, although there were multiple attempts to recruit families from diverse backgrounds, the number of families who began and finished the interview process was smaller than we hoped. Several families expressed interest to their TSVI and even participated in the first part of the process (e.g., attempts to set up interviews, return demographic forms) but ultimately decided not to participate. The parent, out of respect for their TSVI, may not have wanted to decline the invitation to participate in the study.

Also, we observed that some families during the interview seemed hesitant to express concerns about services or needs. Although confidentiality was assured, parents may have felt uncertain about the process or conflicted about critiquing the services received from the TSVI who connected them with the study. Finally, upon reflection, the interview process may have been too formal for some families. Although consent forms are used in studies to protect and guarantee participant rights, the formality of these forms as well as the structured nature of the questions may have created an obstacle for natural communication. Based on experience from this study, some considerations for conducting research with CLD families include the following:

Data gathering. When conducting qualitative research, use of focus groups and broader open-ended questions where families can build off of each other’s comments may provide richer information. Also, providing ‘choices’ or multiple ways that participants can share information (e.g., interview in person, online chat, email, multiple meetings) may allow families to enter a study at the level in which they are initially comfortable.

Cultural rapport. While both researchers spoke Spanish fluently, neither shared the same cultural background as the participants. Use of a cultural broker or liaison (a person who can interpret language as well as culture) during the interviews may help families feel more comfortable. Also, meeting with the family informally before conducting a formal interview might help establish a more comfortable atmosphere for the families.

Recruitment. If possible, consider ways of recruiting that do not connect the professionals working with the family to the study.

Limitations and future research

While the results of this study contribute to the limited research base about CLD families and, in particular, families from Hispanic backgrounds who have children with visual impairments, there are some limitations that should be addressed. This study utilized a convenience sample in only two states, and the sample size was small. Therefore, generalization of findings should be made with caution. Suggestions for practitioners cannot be assumed to apply across a variety of diverse cultures. An extension of this study to further investigate the perspectives of families from Hispanic backgrounds who have children with visual impairment might incorporate some of the insights about research methodology that emerged from this pilot study. In addition, the two states used in this study have a high percentage of Hispanic families. Use of a purposeful sample that targets geographical areas where other underrepresented groups are more prominent is recommended to increase the range of cultures in a future study.

Footnotes

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

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