Abstract
The number of children diagnosed with autism spectrum disorder (ASD) has increased greatly during the past 10 yr, with 1 child in 68 diagnosed with ASD (Centers for Disease Control and Prevention [CDC], 2014). A large body of research has documented the caregiving difficulties associated with having a child with ASD in non-Latino families (Hayes & Watson, 2013; Karst & Van Hecke, 2012). However, relatively little is known about the experiences of Latino families who have a child with ASD, their perspectives on living with the diagnosis, and their interaction with service providers. This study was designed to examine the caregiving experiences of Latino families.
Several studies have documented the difficult experience of living with a child with ASD (DeGrace, Hoffman, Hutson, & Kolobe, 2014; Hayes & Watson, 2013; Karst & Van Hecke, 2012; Lee, Harrington, Louie, & Newschaffer, 2008; Marquenie, Rodger, Mangohig, & Cronin, 2011; Stein, Foran, & Cermak, 2011; Suarez, Atchison, & Lagerwey, 2014). In particular, parents of children with ASD report caregiving challenges and increased stress levels, depression, anxiety, and physical health challenges (Estes et al., 2009; Ingersoll & Hambrick, 2011). However, few studies have specifically focused on Latino families and their experiences of caregiving related to ASD, and the information that is known to date is primarily about the diagnostic process and access to services (Magaña, Lopez, Aguinaga, & Morton, 2013; Zuckerman et al., 2013, 2014).
The United States is culturally diverse, with the Latino population being the largest ethnic group (CDC, 2015); therefore, it is critical to investigate whether Latino families have the same experiences as non-Latino families or challenges and perspectives unique to Latino families. Specific aspects of the Latino culture may influence family perceptions of the experience of caring for a child with ASD.
The role of culture is critical in working with families with children, including children with disabilities (Mandell & Novak, 2005), yet it has rarely been addressed in treatment of Latino families with a child with ASD. Although there is risk in stereotyping culture and it is important to recognize that every family is unique, there is also risk in ignoring traditions and values within and across cultures. For example, the meaning that parents attach to their children’s symptoms or prognosis may influence the types of intervention they choose or whether they choose to engage in treatment at all (Mandell & Novak, 2005).
Some researchers have described the beliefs of Latino cultures as ones in which people can do little to alter their fate and therefore do not actively seek early services (Flores, Bauchner, Feinstein, & Nguyen, 1999). Marin and Marin (1991) described the unique features of Latino families as having a strong identification with the immediate and extended family, valuing the needs of the collective over those of the individual, avoiding conflict and promoting pleasant relationships, having defined gender roles, and having a present time orientation. Caregiving styles in Latino families also may differ from those of White families; for example, 61% of Latinos tend to use a protective child-rearing style (Domenech Rodríguez, Donowick, & Crowley, 2009). Domenech Rodríguez et al. (2009) defined a protective style as scoring high on warmth and demandingness and low on autonomy granting. Other differences in parenting practices have also been described, some of which may be related to the child’s gender (Domenech Rodríguez et al., 2009), disability status, and family stress caused by socioeconomic disadvantages (Marquis & Baker, 2015).
Reduced access to health care for Latino families has been attributed in part to several factors: non–English-speaking status, financial constraints, health insurance issues, lack of transportation, lack of child care, and an inability to take time off from work (Larson, Dilone, Garcia, & Smolowitz, 2006). Of particular concern is that in Latino families ASD is diagnosed later and less often than in non-Latino families, with the subsequent restricted access to services and education (Liptak et al., 2008; Magaña et al., 2013; Mandell et al., 2009; U.S. Census Bureau, 2013). Latino families also may be at risk for health disparities because of the cultural views held by service providers. Delayed diagnosis may be a result of clinicians’ difficulty in identifying signs of ASD in Spanish-speaking families (Zuckerman et al., 2013). For example, some diagnostic tools may not provide the same information when used with Latinos, even when they have been translated into Spanish (Magaña & Smith, 2013). In turn, delayed diagnosis results in delayed initiation of early intervention services, which are critical to progress in children with ASD (Sullivan, Stone, & Dawson, 2014).
Latino families are also more likely to encounter providers who do not spend enough time with them, are not culturally sensitive, and do not make parents feel like partners than are parents in non-Latino families (Parish, Magaña, Rose, Timberlake, & Swaine, 2012; Zuckerman et al., 2014). Factors identified as interfering with early diagnosis and access to services among Latino families are low economic resources, lack of awareness of services, a feeling of disempowerment, low levels of parental acculturation, and decreased English proficiency (Zuckerman et al., 2014).
In addition to later diagnosis, research has indicated that additional care disparities occur in Latino families (Harstad, Huntington, Bacic, & Barbaresi, 2013; Zuckerman et al., 2014). Therefore, it is a critical to examine the unique cultural factors that may influence the perceptions of caregiving in Latino families with a child with ASD and how these experiences may affect services.
Method
Research Design
This study used descriptive qualitative research methodologies, which are recommended when trying to understand study participants’ experiences and the meaning they attribute to these experiences in a natural setting (Huberman & Miles, 1994). This study was approved by the university institutional review board.
Participants
This study included 15 Latino parents (12 mothers and 3 fathers) from 13 families who used either English or Spanish as their primary language and who had a child between the ages of 2 and 8 yr diagnosed with ASD by a physician or psychologist. The majority of the parents were not born in the United States, with countries of origin including Mexico, Peru, and Honduras. Children with severe motor impairments such as those with cerebral palsy or with known genetic, endocrine, or metabolic dysfunctions were excluded.
The study included 13 children (1 girl and 12 boys), all born in the United States and diagnosed with ASD between the ages of 18 mo and 6 yr. The child’s age at the time of the parent interview ranged from 3 to 8 yr. The families were recruited through fliers in local clinics, parent support groups, and word of mouth. All parents signed a written consent before participating in the study. Participants are described in Table 1. Pseudonyms are used for all participants.
Participant Characteristics
Note. All children were born in the United States, except for Rita’s son, whose birthplace was not reported.
Procedures
Data were collected through in-depth semistructured interviews (Figure 1 shows the interview guide used by the study’s six interviewers, which provided relevant topics for systematic inquiry [Patton, 2002]). Four of the interviewers (three of the authors) were fully bilingual and bicultural. Two were raised in the United States by immigrant parents, one was born in Chile and came to the United States as an adult, and one non-Latino spent extended time in Latin America. The other two interviewers were graduate students in an occupational therapy program and conducted interviews in English. All of the interviewers were formally trained in qualitative methods.
Interview guide.
The interviews were conducted in the language of the parents’ preference (5 were done in English, 6 in Spanish, and 5 in English and Spanish) and in the parents’ choice of location, including their homes and the clinic where their child received therapy services. Observations made during the interviews were included when pertinent to the topic. According to the parents’ preferences, 13 interviews were audiotaped and transcribed verbatim and for 3 the interviewers took copious notes, which included verbatim quotes. The four bilingual interviewers translated the interviews done in Spanish to English.
Data Analysis
Data analysis was informed by thematic analysis (Boyatzis, 1998) and performed in two main stages. The first stage entailed two authors (Blanche and Diaz) reading and coding the first three transcripts, identifying common codes, and establishing preliminary intercoder agreement. The authors then discussed these initial codes with a third author (Cermak) and developed a coding scheme used in the subsequent transcripts.
The second stage of data collection and analysis was performed by an extended team of three additional interviewers for a total of six interviewers. This stage rotated among data gathering through interviews, group discussions, coding, and analysis. The team conducted meetings to discuss additional codes and themes emanating from the subsequent 13 interviews.
Rigor was obtained through two main strategies for judging the quality and credibility of the data: triangulation and reflexivity. Triangulation was obtained by including all four authors’ perspectives when analyzing the data and by checking the consistency of findings generated from different data sources and different methods (Boyatzis, 1998). Additional data sources included observations when the interview was conducted in the home environment. For example, Laura was interviewed in her home while trying to feed her child. During one of the interviews, she referred to some maladaptive behaviors accompanying meals, which the interviewer corroborated with direct observation.
Rigor obtained through the researchers’ reflexivity and audit (Boyatzis, 1998; Guba, 1981) involves the researcher reflecting on his or her own position within the social context being studied. Reflexivity is essential when using qualitative methods because the researcher is an active instrument in the research process; hence, much of the work within the naturalistic tradition is grounded in the researchers’ biography (Ely, Anzul, Friedman, Garner, & Steinmetz, 1991). In this study, the authors’ experiences as clinicians and multicultural people shaped ideas about the topic being studied. For example, two of the authors with different bicultural experiences (Blanche was born in South America and immigrated to the United States, and Diaz was born in Mexico and raised in the United States) had different viewpoints during data analysis. For the final discussions, all of the authors reread all transcripts and confirmed and elaborated on the existing themes.
Results
Four interacting themes illustrating the caregivers’ experiences in parenting a child with ASD were identified (Figure 2).
Dealing with the diagnosis
Dealing with stigma and isolation from family and community
Understanding the role of mothers in changing family routines
Utilizing services.
Interaction among the themes identified during interviews with Latino families.
For the families interviewed, family and community issues influenced all of the themes. Parents often referred to their cultural background as central to their daily lives and in their encounters with ASD. The results document evidence of the influence of Latino culture on caregiving practices and on the parents’ perspectives of the diagnosis of ASD. Anna, Monica, and Susana provided examples of the differences they perceived among Latinos in reference to ASD.
Anna described understanding autism in different cultural contexts: “My mom is from Sonora [bordering the United States, and] she said [autism] is not very common [there]. I think there’s still a lot of ignorance there . . . and culturally, they attribute it a lot to being boys, like ‘Oh, he’s slow’ or ‘Oh, he’ll grow out of it.’” Monica, the mother of a 6-yr-old girl, alluded to the Latino culture's acceptance of ASD: “They don't really [accept ASD]. In our culture, it's more like, ‘Give her a little spanking; it'll go away.’” Susana described the cultural differences in relation to the father’s role: “And if there's a cultural thing going on, I've seen it with Latin American families. The fathers are like ‘There is nothing wrong with my child; what are you talking about?’ And it becomes this chip-on-the-shoulder-type fight.”
These quotes point to the centrality of culture. Participants mentioned cultural differences in response to questions about cultural differences and also questions regarding other topics. Moreover, these quotes demonstrate that participants identified specific cultural differences in the interaction with the ASD diagnosis that may have affected the parents’ search for services. The most salient themes embedded in this cultural identity are described next.
Dealing With the Diagnosis
Latino mothers often described the need to deal with the unknown they experienced during the pre- and post-diagnosis stage. Dealing with the signs of ASD required seeking information, responding to the extended family’s reactions, and trusting their religious beliefs.
Parents reported that they sought information through the Internet, local organizations, and family members and neighbors. The family often played an important role as informants in this process. For example, Monica was guided by her sister-in-law when trying to identify her son’s issues:
It wasn't really . . . in my head until I talked to [my sister-in-law] when Hilary was like a year and a half . . . when I noticed she wasn't talking. I said, “You know what, Hilary is not talking. . . . I remember that you had said that David wasn't talking.” She said, “You gotta get her evaluated. Go to the regional center.”
Although extended family members provided information and often served as a source of support, in many cases, their acceptance of an ASD diagnosis was slow to emerge. The extended family’s reactions included voicing inaccurate knowledge, encouraging a wait-and-see attitude, and resisting the diagnosis. Resistance to the diagnosis was exemplified by quotes from family members such as “Americans label everything,” “the doctors are crazy,” “the kid is badly behaved,” “the child is spoiled; that is the reason he doesn’t talk,” and “the child is smart so he can’t have autism.” The family of one Latino father did not believe in seeking immediate help for health issues, demonstrating the wait-and-see attitude, whereas his non-Latino wife’s family did. The wait-and-see attitude is clear in Rita’s reaction when she was first told by a family member that maybe her child was different:
[She said,] “I know your son . . . and there's just something not there. Go get him diagnosed.” [I said], “Okay, fine.” [She told me when he was 2], and I said let me wait ‘til 2 and a half. And if within 6 months [something] is coming up, then I’ll go ahead and get him diagnosed.
Another coping mechanism used by participants was a belief in the power of God. For example, Anna said,
This is a disorder that obviously there is no cure for it. Not that there can't be healing. I do believe in the power of God, and there may be healing. . . . I have hope, and I tell him [my son], “You're gonna get married, and you're gonna go to college and have children and have a career.” . . . I know the Lord has a plan for his life, and I know that he created who he is for a reason. He has a purpose.
Bella said, “I pray to God [and say], ‘God, I want my boy to graduate already. I want him to go to a university.’” These quotes demonstrate that although the parents acknowledged that ASD is a lifelong condition, their faith in God gave them hope for a productive future.
Dealing With Stigma and Isolation From Family and Community
Another topic that was brought up repeatedly by the parents was their discomfort and anger with having their child singled out in the community. The mothers often referred to the coping strategies they developed to avoid what they referred to as chisme, or hearsay. One strategy involved a mother not telling others about her child’s difficulties because of fear that stories about the problem would leak back to her village of origin in Central America. Another strategy described by a mother was to cover up her child’s atypical behavior by, for example, tickling her child when he laughed without a reason so it would appear as though his laughing was due to her tickling. Discomfort with having their child’s behaviors judged by others led parents to the most prevalent strategy: social isolation.
Monica described using social isolation as a strategy:
So, yeah, I was like, like, very isolated. . . . just with the girls at home. . . . I can't do nothing. Hannah is always crying, every day. . . .Yeah, I don't really visit them [extended family] anymore. I'll visit my grandma too, but [she says], “You gotta give her some little spanking so she could understand.” No, no, no, no, no. Oh, whatever. I'm not going to go there anymore.
Susana described changes in her interaction with others:
It's tough. [Relationships] do change. . . . I don't recall the book, but I do remember the parents’ suggestion that the dynamics with your relationships will change with people who you were close to, and I thought, no, my friends are good friends. And it has nothing to do with them being good or bad; it just has something to do with that sense of are you going to match up any more socially? If your child doesn't match up socially, that's what creates that uneasiness.
These quotes illustrate how dealing with stigma in some cases led to changes in social practices with friends and family, resulting in isolation.
Understanding the Role of Mothers in Changing Family Routines
In many Latino cultures, gender roles are firmly established, and the mother’s primary role is to care for the children (Marin & Marin, 1991). Therefore, mothers of children with ASD often carry the responsibility of changing family routines in response to ASD. In the study participants, mothers and other women in the household were the ones securing services for the child and restructuring day-to-day family routines, mainly in response to the demands for therapy and school, meal preparation, toileting, and outings. Fathers often were not involved, as articulated by Cecilia:
We don't go to the restaurant without reading the menu first. We know what we’re gonna order before we get there. We have a bag of tricks, you know, we’ve got stickers, we’ve got crayons, so we’re not going to have like this long dining experience. We’re going so she [our daughter] has the exposure. We’re gonna eat. She’s gonna have a meltdown; she’s gonna throw stuff everywhere. We’re just gonna have to deal with it. My husband cannot deal with that. It just . . . freaks him out.
In this excerpt, the mother was responsible for planning the outing, and to make it successful, she also needed to anticipate her husband’s level of comfort.
Many mothers also needed to deal with the reaction of their husbands and families to the first signs of ASD. Maribel described her husband’s denial of their child’s problem:
He said, “What happens is that the child is spoiled . . . he is the baby in the family, that is the reason he doesn’t talk.” . . . He has always said I am hardheaded, and he said, “You already have the idea in your head and will not stop until you see what happens.”
Monica’s husband’s reaction to her need for help also illustrates this point: “My husband would get home and he would be like, ‘What's wrong with you? . . . Why are you always complaining that you need help? You didn't used to ask for help before so much.’” However, mothers often got support from other women in the family. Valeria described the pivotal roles that her older daughter and her grandmother played in caring for her son with ASD:
But as far as dressing him, we [my daughter and I] get ready for work, and my daughter is the one that gets him ready and she's the one that takes him to school. . . .We both work, but Grandma is here and waits for him and on Fridays my daughter is the one that's here, but once we're here, it's like all of us.
In other cases, the child’s grandmothers and great-grandmothers were described as the only people who mothers and children interacted with on a weekly basis, which means mothers must also deal with their mother’s and grandmother’s reactions. For example, Susana described her mother’s reaction:
My mom is probably the only person we see on a weekly basis. And for her it's still, I don't know if it's because of his [my son’s] age, that she thinks, “Oh, he'll grow out of it. …” My husband gets annoyed by it and I used to too but it's exhausting to try to keep up with her feelings too.
As part of restructuring the family routine, mothers sometimes reported having to leave their jobs to respond to the additional needs of a child with ASD. Alicia stated, “You know what, I can't do this anymore. I can't take it anymore. I think I'm going to have to stop working before I go crazy!” and I was trying to battle everything, and I told my husband. . . . “You know what, today's my last day of work!”
For many mothers, having to stop work meant a reduced income and may have resulted in increased isolation.
Utilization of Services
Participants often reported unique difficulties in accessing services for their children because of lack of knowledge and language barriers. Ema’s son had been previously evaluated through early intervention at the recommendation of his grandmother, but there was no follow-up. Ema’s son attended preschool for more than 2 yr before she understood that something was not right, and she received this information from a Spanish-speaking classroom assistant rather than from the service providers. In this case, lack of understanding about the diagnosis and language barriers prevented Ema from fully accessing services. Once the assistant told her that her son’s behaviors were becoming unmanageable, she asked another Spanish-speaking mother, who informed her about services. At that point, she discussed the situation with her husband:
I said to my husband, “You know that the school assistant says this and this and this.” “I think so,” says my husband, “because Nathan is not normal. I think he has something; maybe he has the autism.” I say, “Well, I don’t know.” It never occurred to us to read the papers that the regional center gave us, [which said to return in a year for further assessment]. And a year had gone by, and we had never read the papers.
The parents had received written information when the child was initially evaluated; however, the diagnosis and the need for services had not been emphasized by the service providers, perhaps because of language barriers. Moreover, there was no follow-up by the evaluating agency to determine whether the family had further questions. Ema described her interactions with the service providers in the following way:
So they gave me some papers at school saying something about education, a guidebook on special education, and I said, “[What is this]? My child is not special; why are you giving me this?” They said, “These are the papers; sign them.” . . . I signed them.
Ema also reported that her lack of information about the individualized education program (IEP) process was due to her inability to attend the IEP meeting scheduled 2 days after her younger daughter was born. Her husband attended the meeting, and according to Ema, he signed what he was given without fully understanding the services offered to his child. In this case, the mother was not able to directly attend to the child’s needs; therefore, the child was not given adequate services. However, the language barrier could also have been a limitation.
Other parents referred to the lack of information in Spanish, which led to misinformation and decreased services. Anna described her dissatisfaction with the available information in Spanish:
When we got the diagnosis, there was a time period of educating and letting people know this is what it is. The material that I was given was pretty much all in English. I have researched and tried to find a book in Spanish, but I haven't had luck. I mean, I've found a few, but the excerpts that I've read . . . don't satisfy me.
With time, parents reported developing skills in navigating the system and in becoming advocates for their children. Susana addressed the importance of advocacy in obtaining services, stating, “If you don't know how to write or advocate for your child . . . if you don't have those tools, you don't have that capacity, you're not gonna have a chance [to get the services].” Many parents reported that developing the ability to advocate for their child made them proud of their accomplishments. For example, Rita stated, “I know now how to fight for my child, and if I have to go all the way to the White House so that I can talk to Obama about my son, then that is what I am going to do!”
Discussion
This study provides an understanding of the caregiving experiences of Latino families with a child with ASD. The term Latinos refers to a broad ethnic group that encompasses more than 15 countries of origin, different immigration statuses, and many levels of acculturation and socioeconomic status, only some of which were represented in this study. Although stereotyping must be avoided, it is critical to recognize the importance of the family’s cultural history.
The themes identified with this group of families in many ways echo information documented in research with non-Latino families. For example, prior literature with non-Latino families has documented that caregivers of children with ASD may use religion to cope (Gray, 2003; Luther, Canham, & Young Cureton, 2005), feel the need to search out information and learn to effectively advocate for their child (Altiere & von Kluge, 2009; Kuhaneck, Burroughs, Wright, Lemanczyk, & Darragh, 2010), engage in excessive planning (Kuhaneck et al., 2010), and require support from family members to manage daily routines (Luther et al., 2005). Prior studies have documented gender differences and lack of involvement from fathers in caregiving of children with ASD (Gray, 2003). Similarly, studies have documented that in families of children with ASD, mothers often reduce their workload or leave their employment entirely to manage their child’s needs (Cidav, Marcus, & Mandell, 2012; Montes & Halterman, 2008), and the care of the child with ASD often results in social isolation (Myers, Mackintosh, & Goin-Kochel, 2009; Woodgate, Ateah, & Secco, 2008).
Although many of the comments from our study reflect similar experiences to those of non-Latino families in the United States, these experiences have not been fully documented in Latino families. However, the influence of Latino culture was evident throughout all four identified themes, with culture particularly affecting service utilization.
Participants often identified distinct characteristics of being Latino that influenced the experience of having a child with ASD. The number of Latino families who live in poor socioeconomic environments is one of the highest of all the ethnic groups (U.S. Census Bureau, 2013), and this problem limits access to resources and services. However, delayed and missed early ASD diagnosis among Latino families is compounded by an inadequate number of professionals trained to understand family values and cultural beliefs, including, but not limited to, language barriers (Zuckerman et al., 2013). The difficulties encountered with service providers and lack of culturally appropriate information may not be unique to Latino families but may be exacerbated and affect the quality and timing of services. In addition to a delay of diagnosis, families may delay seeking services because they may not understand or accept the diagnosis or because of the stigma associated with both the diagnosis and the use of health services.
Many of the comments from the caregivers, as exemplified in the quotes provided, were consistent with what have been described as characteristics of Latino families: being family oriented, avoiding conflict and promoting pleasant relationships, and having defined gender roles (Marin & Marin, 1991). Moreover, Latino families may place fewer demands on their young male children regarding behavioral expectations and independence in daily living skills such as feeding and dressing. They also may be more tolerant of behavioral differences, which may contribute to their child’s early differences not being noticed (Domenech Rodríguez et al., 2009; Magaña & Smith, 2013; Zuckerman et al., 2014).
In the study results, having a family orientation was evident in the reliance on the family for information and support. Gender roles were evident in the mother’s role in restructuring daily routines and the reliance on other female family members for the child’s caretaking. In restructuring of daily routines, study data revealed that many mothers restricted their social life to avoid negative encounters that could arise from their child’s behavior. Overall, given the importance of family and social supports for Latino families (Marin & Marin, 1991), three issues in these families become salient: the isolation that mothers experience, the role of other women as a source of support, and the potential conflictual relationships with other family members. The isolation that may occur in all parents with children with autism (Myers et al., 2009; Woodgate et al., 2008) may be especially pervasive in the family-oriented Latino culture and needs to be taken into consideration by service providers. The fear of stigma and isolation may particularly affect the early search for services.
The results of the study also support previously identified factors affecting utilization of services: lack of information in Spanish that can increase awareness of health care and educational resources and a lack of professionals trained to understand family values and cultural beliefs, including, but not limited to, language barriers (Zuckerman et al., 2013). A wait-and-see attitude, described as part of the Latino culture, and evident in quotes from this study, may also be an underlying reason for a later diagnosis (Liptak et al., 2008; Mandell et al., 2009). Prior research has documented the belief within the Latino culture that individuals can do little to alter their fate (Flores et al., 1999) and the importance of faith and belief in God (Skinner, Correa, Skinner, & Bailey, 2001). These belief systems may also limit service utilization. Zuckerman et al. (2014) also identified low economic resources, lack of awareness of services, a feeling of disempowerment, and decreased English proficiency as affecting Latinos’ access to services.
This study elucidates the specific experiences that may underlie cultural beliefs about accessing health care, the extended family’s role, the belief in God, and the dependence on the mother’s role in reorganizing family routines. Most of these factors serve as buffers and liabilities that may contribute to a delay in ASD diagnosis and a delay in receiving the necessary services. They are considered buffers because the value of extended families for social support and a source of information was often described as important but liabilities because the stigma attached to diagnosis and opinions about the child’s behavior delayed acceptance of the condition.
Although some of the strategies used mostly by mothers to deal with the diagnosis of ASD (e.g., searching for information) may have led them to an increased understanding, other strategies such as the family’s reaction and the belief in God were two-sided. On one hand, the extended family lent support and the belief in God gave hope; on the other hand, the family’s dismissal of the importance of the child’s problem and the belief in the power of God may have delayed the search for services. At the same time, the importance of the mothers’ role in the well-being of the child is undeniable; however, relying on one parent for all of the family’s needs, including the child’s needs for services, becomes untenable when a mother is unable to perform necessary duties, as was the case for Ema.
Study data also revealed a belief in God’s or a superior being’s plan, which made the diagnosis easier to accept and provided hope for the families. However, this belief combined with the characteristic of avoiding conflict previously described may have been the reason for not questioning professionals who reportedly provided diagnostic information in writing without fully explaining its meaning or prescribed a limited amount or no services.
Study Limitations
The limitations of this study include the small sample size and the limited geographic location in Southern California. Latino families in other parts of the country may not have the same experiences as those in Southern California. We acknowledge that being Latino is not a uniform experience because multiple cultural factors contribute to this experience.
Implications for Occupational Therapy Practice
Our findings have the following implications for occupational therapy practice:
Latino families document many similar caregiving challenges as non-Latino families, and these challenges related to ASD should be routinely considered in occupational therapy through delivery of family-centered care.
To provide Latino parents with the necessary tools to help their children, service providers need to understand the distinct roles of family members in caring for and supporting the child with ASD.
For Latino families in particular, it is critical to offer educational opportunities to the extended family because the extended family may form a key component of the family structure.
Occupational therapy practitioners must understand the concepts of health literacy and how the health literacy of their clients affects the services being delivered.
Occupational therapy practitioners must ensure that parents fully understand the information provided, not only through the use of temporary interpreters, but also through ongoing interaction. Written material might be unread or disregarded and is not a substitute for an accompanying verbal explanation and ongoing consultation. Best practice would ensure providing follow-up information and appointments.
Conclusion
The need for family-centered approaches is widely documented (Kingsley & Mailloux, 2013). Services include parent education or training in implementation of intervention strategies (Beaudoin, Sébire, & Couture, 2014; Dawson et al., 2010). However, many parents, especially those in low-income, non–English-speaking families, do not have access to these services. To provide parents with the necessary tools to help their children, service providers need to understand how the culture of Latino families influences their caregiving and their service utilization. To serve the unique needs of Latino families, services need to be provided in a culturally sensitive context couched in the family unit. To better understand these needs, providers must ask clients about cultural beliefs that may affect service provision (Mandell & Novak, 2005).
In Latino families, extended family members may play distinct roles. Therefore, it is critical to offer educational opportunities to the extended family, particularly in Latino families whose extended families form a key component of the family structure.
Data reveal that parents often do not understand their options, and providing them with only written material that might be unread or disregarded later is not a substitute for an accompanying verbal explanation. Effective health care delivery and promotion largely depends on the capacity of the health system to use resources that are adequate to the needs and characteristics of populations with diverse cultural backgrounds. Characteristics such as limited English proficiency and beliefs and attitudes regarding health and illness are generally not addressed in materials developed for general American audiences. Given the costs and dangers resulting from cultural and language barriers, it is essential that processes of care and written materials for Latinos be adapted linguistically and culturally.
Health literacy, the degree to which people have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions, is critical. Recognizing that culture plays an important role in communication helps service providers better understand health literacy. For people from different cultural backgrounds, health literacy is affected by belief systems, communication styles, and understanding and response to health information. Occupational therapy practitioners must be cautious in their estimations of the health literacy of their clients (Leyva, Sharif, & Ozuah, 2005; Sentell & Braun, 2012). Even though culture is only one part of health literacy, it is a very important piece of this complicated topic. The U.S. Department of Health and Human Services (n.d.) recognizes that culture plays a role in the communication of health information.
Footnotes
Acknowledgments
We would like to acknowledge the families who allowed us to interview them to help us learn more about their experiences with autism. We would also like to acknowledge our research assistants Amber Angell, Celina Lemon, and Chloe Urbano.