Steinberg-DecisionsHispanicFamilies-2003

Decisions Hispanic Families Make After the Identification of Deafness Author(s): Annie Steinberg, Lisa Bain, Yuelin Li, Gilbert Delgado and Vivian Ruperto Source: Journal of Deaf Studies and Deaf Education , Summer 2003, Vol. 8, No. 3 (Summer 2003), pp. 291-314 Published by: Oxford University Press Stable URL: https://www.jstor.org/stable/42658660 JSTOR is a not-for-profit service that helps scholars, researchers, and students discover, use, and build upon a wide range of content in a trusted digital archive. We use information technology and tools to increase productivity and facilitate new forms of scholarship. For more information about JSTOR, please contact support@jstor.org. Your use of the JSTOR archive indicates your acceptance of the Terms & Conditions of Use, available at https://about.jstor.org/terms Oxford University Press is collaborating with JSTOR to digitize, preserve and extend access to Journal of Deaf Studies and Deaf Education This content downloaded from 67.207.12.4 on Thu, 08 Feb 2024 19:56:15 +00:00 All use subject to https://about.jstor.org/terms

Decisions Hispanic Families Make After the Identification of Deafness Annie Steinberg University of Pennsylvania School of Medicine Lisa Bain Yuelin Li The Children's Hospital of Philadelphia Gilbert Delgado Delgado Associates Vivian Ruperto The Children's Hospital of Philadelphia This study examines the decision-making process for His- panic families living in the United States who have a child with a hearing loss. Twenty-nine families in four geographical areas shared their experiences in searching for appropriate interventions and making choices regarding communication and education. We explored the impact of language, culture, minority status, and access to information and services on the decision-making process. The results indicate that the deliberations of Hispanic parents are often complicated by language and cultural barriers and by limited access to information, resources, and a full range of options. The communication method chosen tended to be the one recom- mended by professionals, usually a combination of spoken English and sign language. Parents frequently expressed the hope that their child would learn Spanish as well. These sub- jects displayed a higher degree of assertiveness in obtaining services for their children than other studies have suggested. The diagnosis of a chronic condition in an infant or child can have a profound impact on the family. In the The contents of this report were developed under a cooperative agreement from Gallaudet University. However, the contents herein do not represent the policy of Gallaudet University, and endorsement by Gallaudet or the US. Department of Education should not be assumed. We gratefully acknowledge the editorial assistance of Dahlia Rin in the preparation of this article and the participation of Louise Montoya in co- ordinating the research project. The following individuals contributed to the research effort as community facilitators, interviewers, and translators: Rocio Aguirre, Ada Brainsky, Maria Campos, Donald and Marilù Couch, Kathy DiPasquale, Madlyn Garcia, Eneida Gomez, Leo Hidalgo, Adela Llumpo, Marta Ordaz, Minnie Ponce de Leon, Linda Rosa-Lugo, Aracely Rosales, Jesse Sandoval-Barrett, Hugh Sommers, Nellie Torres, and Leticia Tumax. Correspondence should be sent to Annie Steinberg, Children's Sea- shore House at The Children's Hospital of Philadelphia, 3405 Civic Center Blvd., Philadelphia, PA 19104-4388 (e-mail: drannie@mail.med. upenn.edu). case of deafness, the experience of identification and the period immediately following has been described as one of grief, anger, guilt, helplessness, denial, and above all, confusion (Mindel & Vernon, 1971; Schlesinger, 1972; Steinberg, 1991). Although identification of a child's deafness is inevitably a highly charged emotional expe- rience, not all families respond in the same way, nor are responses necessarily consistent with the previous description. One factor influencing the response by a family to a child's disability is the family's cultural background. Cultural elements such as language, family structure, gender roles, beliefs about health and healing, and acculturative stress play significant roles in the fam- ily's decisions about rehabilitation and treatment of dis- abilities (Arnold, 1987). Individuals of Hispanic descent constitute the larg- est minority group in the United States, accounting for 12.5% of the total population (U.S. Census Bu- reau, 2001). This rapidly growing U.S. minority group is a heterogeneous community of Americans and immi- grants who derive their cultural identity from Mexico, Puerto Rico, Cuba, and Central and South America. Individuals in these groups share certain cultural traits such as the Spanish language, emphasis on the impor- tance of family, and many unique cultural traditions but differ in other characteristics (Becerra & Zambrana, 1985; Seligman & Darling, 1989). Among individuals of Hispanic descent living in the United States in 1990 to 1991, 4.2%, or over 900,000 individuals, had hearing impairments (Ries, 1994). Journal of Deaf Studies and Deaf Education vol. 8 no. 3 © Oxford University Press 2003; all rights reserved. DOI: 10. 1093/ deafed/ eng016 This content downloaded from 67.207.12.4 on Thu, 08 Feb 2024 19:56:15 +00:00 All use subject to https://about.jstor.org/terms

Decisions Hispanic Families Make about Deafness 293 facilitators and interviewers in topics such as recruiting and eliminating bias from interviews. The community facilitators were all connected with deaf education in their respective communities and were in charge of re- cruiting Hispanic families with hearing-impaired chil- dren between the ages of 3 and 13. Instruments Families who volunteered to participate were asked to complete a questionnaire (Appendix A) and participate in a 1- to 2-h semistructured interview (Appendix B). The questionnaire was developed in consultation with Kay Meadow-Orlans (Meadow-Orlans, Mertens, Sass- Lehrer, & Scott Olson, 1997). The semistructured, open-ended interview was designed to allow informants to discuss issues of importance to them with guidance from the interviewer but few directed questions that would have elicited yes or no answers. Thus, issues emerged somewhat spontaneously, and not all inform- ants directly addressed the topics we subsequently chose to analyze. This process allows analysis of the study subjects' experiences as well as their insights, cul- tural beliefs, and language. Interviewers and community facilitators assisted families in filling out questionnaires when necessary. In- terviews were conducted in either English or Spanish, according to the subject's preference. With subject's consent, interviews were audiotaped, videotaped, or both. Interviews that were conducted in Spanish were translated into English. Twenty-seven of 29 interviews were fully translated and transcribed. The translators were native Spanish speakers who were also fluent in English and who had prior translation experience. To the extent possible, translators were also matched to subjects according to dialect of Spanish spoken. Two in- terviews, both from families in the Texas subgroup, were not translated or transcribed due to technical prob- lems. Thus, the sample size of interviews was reduced from 29 to 27 families, whereas the sample size of the data from the survey questionnaire remained at 29 families. A survey questionnaire gathered basic demo- graphic information (age, gender, family composition, education, ethnic identification, etc.) as well as spe- cific information about the child's hearing loss, interven- tions that had been used, the child's progress, communi- cation methods used, sources of support and information, parental attitudes about deafness, family stress, and par- ental satisfaction with options available and guidance received. The questionnaire has been included in Ap- pendix A. All instruments used in this study were approved by the institutional review board of the Children's Hospital of Philadelphia. The institutional review boards of several of the cooperating schools also reviewed and approved the instruments. Analysis Demographic items from the survey questionnaire were summarized by tables of frequency counts and percentages (see Table 1). Answers to questions re- garding support, utilization of resources, and attitudes and beliefs about deafness were dichotomized, and the percentage of affirmative responses was calculated (e.g., "somewhat supportive" and "very supportive" vs. "not very supportive" and "unsupportive"). Responses to questions regarding the use of resources were di- chotomized into "used, found helpful" (coded affirma- tive) versus "did not use" and "used, did not find help- ful" (coded negative). These data are presented in bar graph form (see Figure 1). Analysis of the interviews used qualitative methods (Miles & Huberman, 1994.) Translations of interviews were fully transcribed from audiotapes. Transcripts were coded for themes of inter- est according to a coding schema developed by the re- search team. Themes were grouped in five categories of potential influence on parental decision making: guid- ance provided by professionals (including whether in- formation was available in Spanish), internal factors (e.g., parental expectations, values), external factors (e.g., availability of resources), decisions made, and sat- isfaction. The codes were then applied to the tran- scripts using a computer program called Folio Views (Folio VIEWS Infobase Production Kit, 1995), which allows for easy markup of text, followed by compilation of all segments coded with a particular theme. Each in- terview was coded by at least two researchers. Dis- agreements between the coders were resolved by the senior research analyst. Through this process, themes emerged that were of particular importance to the respondents in the study, and these themes were fur- ther analyzed for this publication. This content downloaded from 67.207.12.4 on Thu, 08 Feb 2024 19:56:15 +00:00 All use subject to https://about.jstor.org/terms

294 Journal of Deaf Studies and Deaf Education 8:3 Summer 2003 Table 1 Child demographics (N = 29)a Demographic variable Demographic category n Percentage Who child lives with Mother and father 17 (59%) Mother only 6 (21%) Mother and stepfather 2 (7%) Other 4 (14%) Gender of child with hearing loss Male 14 (48%) Female 15 (52%) Level of hearing loss Profound 15 (52%) Severe 8 (28%) Moderate 3 (10%) Mild 1 (3%) Don't know 2 (7%) Cause of hearing loss Unknown 15 (52%) Heredity 3 (10%) Prematurity 2 (7%) Meningitis 1 (3%) Prenatal infections 1 (3%) Other 7 (24%) Age at loss Unknown 9 (32%) Birth or earlier 15 (54%) No answer 5 (17%) Other disabilities 8 (28%) Children with cochlear implant 4 (14%) " Ages of children in the sample ranged from 4 years, 5 months to 13 years, 1 1 months, with a m 7 months. Results Respondents Eighteen of the interviews were conducted with moth- ers only, one with the father only, and nine with both mother and father. For one of the two interviews not transcribed for technical reasons, it is unclear who par- ticipated. Questionnaires were filled out by 28 mothers and one father. All parents had at least some high school education, and about a third also had some college education. Eleven mothers (39%) and 14 fathers (58%) did not complete high school. Seven mothers (25%) and six fa- thers (25%) graduated from high school, and another nine mothers (32%) and four fathers (16%) attended college. One mother had achieved a bachelor's degree. Seventeen (59%) of the 29 children in the Hispanic group lived with both parents. Six children (21%) lived with their mothers only; two (7%) lived with moth- ers and stepfathers. The remaining four (14%) lived with family other than parents. Twenty-one parents (72%) reported that they had other children. Three parents (10%) reported that their deaf children had other deaf siblings: One parent had three children, and two parents had two deaf children each. Four parents (14%) reported that there were extended family members (e.g., cousins, uncles, grandparents) who also had hearing losses. For most of the families in this study, the identifica- tion of hearing loss was obtained in the United States (69%). Many of the families left their countries of ori- gin (usually Puerto Rico or Mexico) either when they suspected a hearing loss or after hearing loss was con- firmed, believing that the opportunities, resources, and services for deaf children were superior in the United States and that children would face less discrimination there than at home. This content downloaded from 67.207.12.4 on Thu, 08 Feb 2024 19:56:15 +00:00 All use subject to https://about.jstor.org/terms

296 Journal of Deaf Studies and Deaf Education 8:3 Summer 2003 fourth parent did not answer this question. All four parents reported that they are very satisfied with the cochlear implant. Preferred Language in Family Spanish is the primary language used in most of the homes of the participants {n = 16, 55%). Three par- ents (10%) cited Spanish and some sign language as their primary means of communication. Two parents (7%) stated that they communicate through a combin- ation of Spanish, English, and signing or gestures. One parent (3%) responded that the children speak English and the parents speak Spanish. Four parents (17%) use English and some sign language to communicate with their children. One parent (3%) cites English as the family's primary means of communication. One par- ent uses Signed English as the primary means of com- munication, and another parent states that American Sign Language (ASL) is the primary language used in the home. Further exploration of preferred language occurred during the interviews with respondents and is discussed later in this article. Decision Factors Figure 1 summarizes the data about factors that influ- enced the decisions made by respondents. The factors analyzed include: the amount of involvement in deci- sion making for parents, grandparents, friends, and the family doctor; the importance of five decision factors; which characteristics of influential people were most important; attitudes and knowledge about deafness; and the use of resources. The results showed that mothers were most involved (100%) in decision making. Fathers were somewhat less involved (64%), followed by the family doctor, grand- parents, and friends. The most important factors in the parents' deliberations were the recommendations of pro- fessionals (96%) and the services provided by the lo- cal school district (86%). The parents thought that the most important characteristic of influential people was that they "listened to my concerns." The availability of services close to home, cost of services, and recommen- dations of friends were somewhat less important. Attitudes and beliefs about deafness were assessed by asking respondents about their agreement with six statements. Ninety-six percent of the Hispanic families agreed (strongly agreed or agreed somewhat) with the statement, "Children should be taught sign language so they can talk to deaf people." At the same time, only 25% agreed with the state- ment, "Although sign language may be useful, it isn't really a proper language." This positive attitude toward sign language was also accompanied by the belief that "All deaf children can learn to speak if enough time and effort were put into teaching them" and that "As a so- ciety, we push out deaf people." Less than half (46%) agreed with the statement that "Deaf children should go to ordinary schools." We studied six aspects of resource utilization: whether the parents had been given written and video- taped information about different approaches or in- structions for sign language or cued speech, whether they participated in parent meetings or individual coun- seling, and whether they had used interpreters. Sign in- struction was the most widely used resource, followed by parent meetings and use of interpreters. We did not distinguish Spanish language from sign language inter- preters; however, the interviews suggest that parents were referring to Spanish language interpreters. Indi- vidual counseling was used by more than half of respon- dents. Somewhat surprising was the finding that only 52% of the Hispanic families were given written mate- rials about different options. Videotaped information was even less widely used. Results Interview Data Two interviews were not translated and transcribed be- cause of technical problems. Therefore, the analysis of the interview data includes only 27 subjects. We refer to the subjects as "families" although as we noted earlier, in some cases only one parent was interviewed. In the semistructured interview, we examined how parents go about making important decisions for their children. When a child has a hearing loss, parents need to decide how they will communicate with their child, how the This content downloaded from 67.207.12.4 on Thu, 08 Feb 2024 19:56:15 +00:00 All use subject to https://about.jstor.org/terms

Decisions Hispanic Families Make about Deafness 297 child and parent both will learn to communicate effec- tively in the chosen modality, whether the child will use hearing aids or other assistive devices, whether the child will get early intervention services, and where the child will go to school. Early intervention and school decisions also often require collaboration between par- ents and the state, county, or local school system. We found that the decision-making process for chil- dren with hearing loss is a complex one, affected by in- formation and resource availability, including the qual- ity of the information imparted by professionals and other sources; the parents' ability to acquire informa- tion and services; the parents' personal preferences and values; their decision-making style; and their beliefs about the causes and consequences of deafness. Although shared decision making between parents and profes- sionals is often seen as the desired model (Charles, Gafni, & Whelan, 1997), we found that there were bar- riers that sometimes prevented parents from participat- ing fully in the decision-making process. We explored the extent to which access to information that is a re- quirement for shared decision making is blocked in the Hispanic community by language and cultural factors as well as by the limited availability of resources and knowledge of legal rights. The interviews demonstrate the uniqueness of each individual case and the diversity of experiences among Hispanic parents of deaf children in the United States. Several common themes emerged in the interviews, including language differences, lan- guage preferences, choice of communication method, decision-making style, and religious beliefs. Language Differences Eight families reported that they experienced language difficulties that interfered with their acquisition of complete information. Four of these families reported that language differences presented barriers in some situations but that in other situations, interpreters, Spanish-speaking professionals, or the parents' own English-speaking ability mitigated these problems. It is especially noteworthy that 19 families, a majority of our respondents, reported that language differences were not a barrier to information access because interpreters were available and effective, Spanish-speaking profes- sionals were available, one or both parents spoke En- glish, or a combination of the above factors. One Florida mother who felt language was a barrier said, "If it had been in Spanish, although it was hard to accept . . . one is free, one can ask the questions one wants to ask as he or she wishes. But it is hard when one feels trapped [by the language]. In a foreign language, the words don't come out." Only one parent (in California) reported a problem with getting interpreters. She said, "Usually it was be- cause the interpreter took a long time to arrive. We would have to wait one or two hours ... so we finally decided that it was just easier for us to go in to the appointment on our own and talk to the doctor." Three families said interpreters were available but ineffective. In one case, the audiologist provided infor- mation in English to the teacher and the mother; when the teacher and mother returned to school, the teacher would tell the interpreter what had been said, and the interpreter would translate for the mother. As a result, the mother was unable to pose questions directly to the audiologist. Parents also reported that the translations were not good or that the interpreter was difficult for the parent to understand. One parent stated that One of the terms that he used was used in a wrong way, and that made the whole translation differ- ent. . . . when they had the interpreter that was Puerto Rican, I understood a lot better. ... It was not convenient for me to have Mexican interpreters be- cause they do not interpret the same. . . . We have the same culture, but we don't have the same language. Twelve families said that written materials were provided in both Spanish and English. Four families said they were available in English only, and the remain- ing 1 1 families did not address this issue. Most of the Spanish written materials appear to have been transla- tions from English. Many of the parents said that writ- ten documents were provided with English on one side of the sheet and Spanish on the other. One parent said: They send them to me in English, also in Spanish, but I prefer in English, because the Spanish, they re- ally kill it. I feel bad but I have told them that when they send something to me, send it to me in English This content downloaded from 67.207.12.4 on Thu, 08 Feb 2024 19:56:15 +00:00 All use subject to https://about.jstor.org/terms

Decisions Hispanic Families Make about Deafness 299 ilies in the Pennsylvania cohort spoke highly of the guid- ance they received from early intervention specialists at the school for the deaf. Said one mother, "I love that school because they helped him a lot since he was little." Decision-Making Style Previous studies (e.g., Young & Klingle, 1996) have in- dicated cultural differences for assertiveness in the med- ical encounter. We explored the extent to which parents played an active or passive role in seeking medical, audi- ological, or educational services for their children. Of the 27 families included in this analysis, 14 (52%) were rated "active" and 10 (37%) "passive" (Table 2). We were unable to classify the decision-making style of three fam- ilies. Families were rated active when they described their efforts in words such as inquire , explore , investigate , challenge, fight, zná organize. Families were rated passive when they made statements indicating acceptance of guidance without question or followup. Table 2 sum- marizes the statements of these two groups. Religious Beliefs and Faith Seventeen of the 27 families (63%) indicated that their religious beliefs and faith influenced their decision- making process. Seven families (26%) said their deci- sions were not influenced by religious beliefs, faith, or the Church. One mother answered, "I don't know, I don't know if that's anything that has helped us." Two families did not address the questions. For some families, faith and prayer were cited as key factors in the decision-making process. For example, a mother in Florida said, "I put everything in God's hands. ... I ask God to give me the wisdom to make proper decisions for him." A father in Pennsylvania said, "We were praying to God that everything would be okay, and God listened to our prayers." Several parents (4; 1 5%) attributed improvements in the children's hearing to God or indicated a belief that God would cure their children's hearing impairment in the future. A mother in Florida said, "I am sure that God helped his ears, even though he needs the hearing aids. In time God will be restoring his hearing." A mother in California described an experience of praying to Santo Niño about her child, who was born with multiple prob- lems, including deafness. "My husband and I knelt down to pray and at that moment I felt that that saint had helped me to save my child and ever since she has been better off." Another mother in Pennsylvania remem- bered, "They told me that there was nothing impossible that could not be done with God's help, and that's the way it has been and thanks to God's help is that the child has improved a lot and I have seen how he is better now." Discussion Upon learning that a child has a hearing loss, parents face a host of confusing options and must quickly eval- uate the numerous choices in communication, educa- tion, and habilitation in the absence of an evidence base and with only limited information about the expected out- comes of the interventions. This decision-making pro- cess is challenging, regardless of cultural background. In this study, we sought to determine the degree to which Hispanic parents who live in the United States and who have children with hearing loss are at a dis- advantage relative to their non-Hispanic counterparts in the same situation. The findings we discuss below suggest that Hispanic parents of children who are deaf often make their decisions in the context of language and cultural barriers, and limited access to informa- tion, resources, and the full range of options. Special issues such as trilingualism are rarely addressed by pro- fessionals, leaving parents to grapple with their ques- tions alone. Language Barriers Scaled by Hispanic or Bilingual Professionals Language differences presented significant obstacles to less than a third of our families. The availability of Hispanic or bilingual professionals (counselors, audiol- ogists, nurses, and teachers) reduced the impact of lan- guage differences to a great extent in some areas. When bilingual professionals were not available, interpreters were also useful, although parents seemed to benefit from clearer communication with professionals who spoke the same language. Even parents who spoke En- glish relatively well described how the presence of a His- panic professional added to their comfort and ability to integrate and respond to the information. When inter- This content downloaded from 67.207.12.4 on Thu, 08 Feb 2024 19:56:15 +00:00 All use subject to https://about.jstor.org/terms

300 Journal of Deaf Studies and Deaf Education 8:3 Summer 2003 Table 2 Parenting style Active ( n = 14) DHF03 I made them change. I communicated with people that helped me. I'm the type of mother who shows up unexpectedly to see what they are doing. I'm in the process of organizing a support group for the parents. I need to investigate more and know someone who knows more and gain more information. DHF04 1 was very involved, every situation. I talk to some more people and see what they get out of it . . . see what decisions they made and why they made that decision. I do think about it, I don't just jump into it. DHF06 we went to talk with the county and the board and she [lawyer] prepared with a binder with all the laws . . . and she underlined very clearly all the rights that the child had ... so then finally they transferred us. DHT15 I told them if you're putting a barrier or a limit, I am very sorry but I am going to remove my kids from the school and the next day we start terminating all the paperwork. We look for the best school and we try to really get into the school to try and to help. You have to grab the bull by the horns and otherwise you're going to be wasting your time. We never just stay in one place and don't do anything. DHT16 We went totally against what the school wanted. DHC20 We discuss the options and what we think is best and he [husband] helps me make the decisions. ... I had done some research about these different schools. We're just looking into other resources right now. DHC21 1 always try to get help somewhere to help me with the decision. I always ask questions. I make sure I go visit the school first and get information about the school. DHC22 1 decided to get her out of that school so then I transferred her to a regular school and I started to notice that she progressed a lot and that she started to do things right. DHC23 The thing I learned most was my rights. I would start to notice these other women and mothers that were in these meetings and you know, the American women, they were very aggressive and would ask a lot of questions and I would watch them and study them and think that that's how I should be behaving. I had to get a lawyer and everything. I also feel that it is my responsibility to get more information about the things they are not telling me. DHC24 1 called an agency for the deaf and I asked them to please send me any information, any paperwork that they had. I sent out about 40 letters to different agencies. I'm a person with a very strong character. I really don't let anybody tell me anything. DHP26 Started to analyze and to think that no, I should look for other specialists and that I should look for other tools to give to him. I have always been a person that I never give up. DHP28 My questions were very hard questions. Other professionals that were around me also said that they didn't expect that I would be so strong, so strong in my questions, because they thought that it was going to be a lot easier with me. DHP30 When we found out that she didn't hear anything, that's when we make decision. That's when we call over there and then, when there was no more options in Puerto Rico. So we said if she was born like that, we have to look for her progress. DHP31 So I woke up and I'm like, all right, this is what I got to do for him and I called them up and I went to their office and they scheduled a lot of appointments. I was very involved in it. Passive (n = 10) DHF02 1 don't think that here I have enough information, and also I don't have enough time. DHT09 They give us the only option and we just follow up. DHT10 1 did not inquire about any other. DHT1 1 1 never told them what I had decided. They gave me the information and I went to the school and that was all. DHT12 We only looked at the school program that we were told about. DHT13 They would give us options and we knew that if they recommended it to us it was for the well-being of our daughter. We always agreed with what they told us. DHT14 1 have never been a person of asking too many questions. So whatever they say, it's okay. DHC 16 It [the program child attends] was just given to me. I really didn't choose it. They really didn't give me much options. DHC 19 It was their decision. They tell me it's very important for me to go to be able to communicate with her, but I've never gone, and they sent me a notice and I told them that I couldn't go because I have no form of transportation. Then after that they never said anything. DHP25 They decided. I accepted them. This content downloaded from 67.207.12.4 on Thu, 08 Feb 2024 19:56:15 +00:00 All use subject to https://about.jstor.org/terms

302 Journal of Deaf Studies and Deaf Education 8:3 Summer 2003 children to learn, they also expressed a strong desire for their deaf children to learn and retain Spanish and its related culture. The task before these parents seems daunting, particularly in light of the fact that profes- sionals often recommended a single language or bilin- gual approach and fail to highlight options that might allow them to achieve their goal of trilingualism. Moreover, maintaining a connection to the Spanish language is difficult even for Hispanic citizens with nor- mal hearing. In a recent article about the possible dis- appearance of Spanish in the United States, Rumbaut (2000) stated that "the hope of fluid bilingualism in the third and fourth generations is slight if not non- existent." If this is true, deaf children of Hispanic par- ents have even less chance of learning, let alone retaining Spanish. Counteracting the diminution of Spanish in the United States are several factors: Spanish is still the dominant language in a very large part of the world and is tightly integrated with the cognition, literature, con- versation, music, foods, and traditions of people who use it. Additionally, immigration from Spanish-speaking countries to the United States continues to be high, with population forecasts indicating that by 2025, 25% of the U.S. population will be Hispanic. Decision-Making Style in the Hispanic Community In contrast to previous studies that have cited minimal involvement of Hispanic parents with educational sup- port services (Bennett, 1989; Cohen et al., 1990), the families in this study indicated a remarkably high degree of effort in obtaining appropriate services for their chil- dren, particularly those whose parenting style was rated as active (see Table 2). Conclusions Although decision-making literature demonstrates that parents have a strong desire for information and involve- ment in medical decisions, making informed choices involves access to culturally relevant information and resources. A shared language between parents and med- ical professionals is also necessary to optimize the discussion and exploration of treatment options. This study demonstrated that various factors impact on the decision-making process for Hispanic families living in the United States who have children with hearing loss, including religious beliefs and faith in God as the ulti- mate guide to the best options and outcome for the chil- dren and complications resulting from language and cultural barriers. Included in the latter category are the following factors: paucity of appropriate Spanish lan- guage materials about deafness, little offering or consid- eration of communication options, absence of shared language with professionals with whom decisions are typically explored, and the failure of professionals to ad- dress trilingualism as a feasible family goal. Degrees of assimilation into American culture (including the ac- ceptability of advocating aggressively for one's child) and satisfaction with the United States relative to ser- vices and options available in one's country of origin are additional factors recognized by parents who partici- pated in this study. Limitations of This Study Although this small sample size limits the generaliza- bility of this study, recruitment from various geographic regions and through different sources minimizes the risk of sampling too narrow a range of respondents. Nev- ertheless, because of the size and diversity of the His- panic community, a larger study would be necessary to understand fully the barriers that face this diverse com- munity and the optimal efforts that can be made to over- come these obstacles. Additionally, because of the voluntary nature of the subjects, we may have gained access to families with a more active decision-making style and resultant higher degree of satisfaction; thus we cannot be sure that our sample is representative of the full range of experience and sentiments. The problem of a small, self-selected sample group is common to many ethnographies, in- cluding this one, and is difficult to escape. However, this type of sample group does not necessarily detract from the validity of the study's findings as long as one keeps in mind that the findings should not be o ver generalized. Translation issues also arose during the translation and transcription of the interviews. Although all of the translations for this study were completed by native Spanish speakers, we originally hoped to utilize transla- tors from within the communities in which the inter- views were conducted, but we were unable to realize this This content downloaded from 67.207.12.4 on Thu, 08 Feb 2024 19:56:15 +00:00 All use subject to https://about.jstor.org/terms

Decisions Hispanic Families Make about Deafness 303 goal in all cases. Additionally, although interviewers and community facilitators were instructed not to espouse their own preferences regarding communication modal- ity, school, or other interventions, personal biases or misconceptions may have inadvertently crept into the interview discussions. One final limitation concerns the relatively broad age range (approximately 4-14 years) of the deaf chil- dren whose families we studied. It is likely that parents of the older children may have unintentionally recalled events that occurred early in their children's lives less accurately than parents of the younger children. This problem was unavoidable from our point of view be- cause we aimed for a broad sample within the diverse Hispanic community rather than, for instance, a sample that included only newly identified deaf children. Implications of This Study The implications of this study's findings for profession- als working with Hispanic families who have children with hearing loss are noteworthy for several areas, in- cluding the need for a shared language. Although there is much we don't know about the interplay of language with factors such as client characteristics, acculturation, and fluency levels, the recognition of the importance of culture and respect for language preference applies not only to ASL and Deaf culture but also to Spanish and Hispanic culture. The families we interviewed greatly valued the opportunity to converse in Spanish with a member of the community, suggesting that cultural matching may ultimately prove to be the critical variable in interventions. Trilingual interpreters would be partic- ularly well equipped to address the complexity of trans- lation and interpretation and should be very involved in innovating future linguistic options and intervention trials for the Hispanic family with a child who is deaf. Informational channels were significantly reduced for many participating families, making the direct service provider communication and relationship even more vi- tal. Although we did not inquire about perceived literacy, significantly fewer Hispanic parents (55%) were given written materials for review than non-Hispanic parents (92%); more globally, access to health care was most likely reduced for this community, given that a third of Hispanic families in America do not have health insur- ance. Further investigation in the areas of resource ma- terial development, building informational telephone networks, and a heightened understanding of computer utilization and utility for Hispanic families with deaf children are clearly needed in order to ensure equal access to information. Hispanic families need all avail- able information regarding communication methods. Our study demonstrated that information provided re- liably affected how the families' decisions were made, but in the absence of information, reasoned decisions are not possible, and decision making must rely on other actions, such as an act of faith. Because Hispanic fam- ilies have significantly less access to other parents of deaf children, they may benefit greatly from peer sup- port. Facilitated parent groups based in the commu- nity (e.g., homes, churches, etc.) would best serve to connect families and provide needed support. Learning a second language is a challenge for many children. Although it is affected by language exposure and positive associated emotions, mastery of two lan- guages requires full and continuous access to rich lan- guage. Many hearing children learning English as a sec- ond language do not master it, let alone a third language. Hard but realistic choices may need to be made for children who do not receive significant auditory input. Should they be taught in the family's language or should a choice be made to give them primary access to the lan- guage of the community with which they will most likely affiliate? Should cochlear implantation be recommended earlier to optimize the auditory input necessary to mas- ter several languages? Should a focus be put on a single language, and if so, which one? How much of a role should professionals play in this decision making, and how can their involvement be most helpful? If the deci- sion is made to emphasize the language of the child's presumed future community, how can home communi- cation be supported? We have learned that Hispanic families are presented with fewer options such as cochlear implantation. It also appears that cued speech is rarely considered as an op- tion, although it is not clear whether this is due to a lack of knowledge within the Hispanic community about cued speech or whether cued speech is not thought to be a good choice for families who are struggling with En- glish in the home. When Hispanic parents are presented with the news that their child is deaf or hard of hearing This content downloaded from 67.207.12.4 on Thu, 08 Feb 2024 19:56:15 +00:00 All use subject to https://about.jstor.org/terms

Decisions Hispanic Families Make about Deafness 305 6. Training child has received 7. Does child have any conditions other th 8. Does child have a hearing aid? If yes, when did he/she get it? Child wears aid: Aid was provided by: 9. Has a cochlear implant been considered for child? If yes, has child been evaluated for implant? If yes, was surgery performed? Satisfaction: What part of cost was covered by insurance? _ 50-75% Section II: Special Services for Child and Famil 1 . Is child enrolled in early intervention or other school program? What is the name of the program? This content downloaded from 67.207.12.4 on Thu, 08 Feb 2024 19:56:15 +00:00 All use subject to https://about.jstor.org/terms

306 Journal of Deaf Studies and Deaf Education 8:3 Summer 2003 What communication mode is used? Services provided at home? Services provided at center? Any deaf adults on staff? 2. Is this program provided by your local school district? 3. How much time per week do vou spend in formal program (at home/ scho does your child spend in formal program (at home/school/ center)? do you spend at home teaching your child? - hrs. 4. How do you evaluate program? Always Sometimes Rarely Nev a) Staff listens and responds to my concerns, ideas and questions 4 3 2 1 b) Program is flexible enough to respond to my child's specific needs 4 3 2 1 c) I am considered an active member of the team 4 3 2 1 d) staff is considerate of time and energy limits of our family 4 3 2 1 e) my child seems to like the program 4 3 2 1 f) My child's progress has been: Section III: Decision Making 1 . Who is involved in making decisions about your child's care? Very Somewhat Somewhat involved involved uninvolved Uninvolved a) mother 4 3 2 1 b) father 4 3 2 1 c) grandparents 4 3 2 1 d) friends 4 3 2 1 e) family doctor 4 3 2 1 2. Who has been most or least support Not Very Somewhat Not very applicable supportive supportive supportive Unsupportive a) spouse or partner NA 4 3 2 1 b) child's grandparents NA 4 3 2 1 c) other relatives NA 4 3 2 1 d) friends NA 4 3 2 1 e) other parents of deaf children NA 4 3 2 1 f ) clergy NA 4 3 2 1 g) family doctor NA 4 3 2 1 h) specialist (e.g. audiologist) NA 4 3 2 1 This content downloaded from 67.207.12.4 on Thu, 08 Feb 2024 19:56:15 +00:00 All use subject to https://about.jstor.org/terms

308 Journal of Deaf Studies and Deaf Education 8:3 Summer 2003 Section VI: Communication and Peer Relationships 1 . Which method of communication do vou use with your child at home now? 2. Which method of communication does your chil Section VII: Questions About Your Own Feeli Strongly Agree Disagree Strongly agree somewhat somewhat disagree 1 . 1 enjoy being a parent 4 3 2 1 2. 1 can feel proud of the way I have responded t needs of my child 4 3 2 1 3. 1 can't make decisions without help 4 3 2 1 4. My communication skills are quite adequate for my child's needs 4 3 2 1 5. 1 feel that I am success child to do or not do something 4 3 2 1 6. Since I first brought my child home, I find that I am not able to take care of this child as well as I thought I could. I need help 4 3 2 1 7. My child is often left out of communication problems 4 3 2 1 8. As a parent, I can handle anything 4 3 2 1 9. 1 feel that I am a very good parent 4 3 2 1 10. There are many things I can't seem to communicate to my child 4 3 2 1 Section VIII: Backgrou 1 . With whom does child l 2. Other child Boys: (ages 3. Other family members with hearing loss? How are they related to your child? (e.g., grandmother, uncle) This content downloaded from 67.207.12.4 on Thu, 08 Feb 2024 19:56:15 +00:00 All use subject to https://about.jstor.org/terms

Decisions Hispanic Families Make about Deafness 309 4. Primary language used at home: 5. Hig mother: father: 6. Occupat mother: father: 7. Racial or ethnic background: Section IX: Satisfaction (answ diagnosed) Not Strongly Agree Disagree Strongly applicable agree somewhat somewhat disagree 1. 1 am satisfied with the range of options available for my child. NA 4 3 2 1 2. 1 have been able to obtain all the info need to make decisions for my child. NA 4 3 2 1 3. The first professional I consulted pointed me in the right direction. NA 4 3 2 1 4. Knowing what I know now, I would choose the same approach as I chose originally. NA 4 3 2 1 Appendix B: Interview OPCIONES: Parental Decision-Making Interview I. Background Information 1 . How old is 2. What kind of a hearing loss does 3 . Who lives in 4. Where do you live? How would you describe the area or community w farm . . .) 5. Do you work outside of the home? What types of jobs do the members of your family have? 6. What language(s) does your family use in your home? Which language is more comfortable for you to speak? 7. How good is your Spanish? English? What about your other family members? 8. Where is your family from originally (United States, Puerto Rico, Mexico, etc.)? If originally from another country (not born in U.S.), How long have you lived in the United States? Why did you (your family) come to the United States? This content downloaded from 67.207.12.4 on Thu, 08 Feb 2024 19:56:15 +00:00 All use subject to https://about.jstor.org/terms