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“One Gets So Afraid”: Latino Families and Asthma Management—An Exploratory Study

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“One Gets So Afraid”: Latino Families and Asthma Management—An Exploratory Study
Jill Berg, RN, PhD, Nancy Lois Ruth Anderson, PhD, RN, FAAN, Mary J. Tichacek, MN, CS, APRN, BC, Alma C. Tomizh, MSN, NP, & Gary Rachelefsky, MD

ABSTRACT Introduction: This study explored Latino family experiences, issues, and needs in caring for a child with asthma as expressed by Latino parents of children with asthma. Methods: Eight families represented by 7 women and 2 men, primarily of Mexican descent, participated in the study. All families had at least one child enrolled in preschools in the East Los Angeles area. The study had an exploratory design and used ethnographic group and individual interview techniques to discover the parents’ experiences in managing their child’s asthma and the meaning asthma has for their families. All interviews were conducted in Spanish. Results: Several common themes emerged from the data: (a) fear, “I got scared”; (b) the acute care experience, “I was not told what to do, nothing”; (c) knowledge, “I did not know anything about asthma”; and (d) parent alternative strategies or strengths, “We want to do what is best. . . . we need to be prepared.” Discussion: Strength emerged from fear. The parents were resourceful and began developing alternative strategies to assist them in their care for their child with asthma. The findings emphasize the need for more opportunities for culturally sensitive asthma education and community health care resources such as mobile asthma treatment centers and promotora programs. J Pediatr Health Care. (2007) 21, 361-371.

Jill Berg is an Associate Professor, University of California, Los Angeles, School of Nursing, Los Angeles, Calif. Nancy Lois Ruth Anderson is Professor Emeritus, University of California, Los Angeles, School of Nursing, Los Angeles, Calif. Mary J. Tichacek is a Staff Research Associate at the University of California, Los Angeles, School of Nursing, Los Angeles, Calif. Alma C. Tomizh is a Clinic Manager and Family Nurse Practitioner at The Children’s Clinic, Long Beach, Calif. Gary Rachelefsky is Clinical Professor and Associate Director of the Allergy/Immunology Training Program in the Department of Pediatrics at University of California, Los Angeles, School of Medicine, and Director, Allergy Research Foundation, Inc., Los Angeles, Calif. This study was funded by the University of California, Los Angeles School of Nursing, Center for Vulnerable Populations Research (CVPR) National Institutes of Health/National Institute of Nursing Research #P30, NR00504, and The Allergy Research Foundation. Correspondence: Jill Berg, RN, PhD, University of California, 4-254 Factor Building, School of Nursing, Los Angeles, CA; e-mail: jberg@sonnet.ucla.edu 0891-5245/$32.00 Copyright © 2007 by the National Association of Pediatric Nurse Practitioners. doi:10.1016/j.pedhc.2006.08.004

One gets so afraid . . . your child cannot breathe well. . . . And so when they get sick one becomes worried. . . . sometimes one doesn’t know what to do. . . . I started crying . . . because of my frustrations . . . because of my son. . . . I was very frustrated. Can you imagine your son telling you that he can’t breathe? . . . You wish you were affected, not him. Parents with children with asthma are often frightened and burdened by their child’s chronic illness (Koenig & Chesla, 2004). The management of childhood
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asthma can be overwhelming for family members who must make considerable changes in household routine and home environment (Butz et al., 2004). In addition to the physical changes that must be made for management of the disease, there is the emotional toll of having a child with an unpredictable chronic illness. Some studies have attempted to capture the experience that parents across the globe have in caring for their child with asthma (Koenig & Chesla; Maltby, Kristjanson, & Coleman, 2003; MacDonald, 1996; Trollvik & Severinsson, 2004), but none have looked at the added burden of recent immigration. Latino families living in the United States, particularly those who live in

low-income families are more likely to have asthma diagnosed and are hospitalized more often than children from families of higher socioeconomic status (CDC, 2004b; Dey, Schiller, & Tai, 2004). Meng, Babey, Malcolm, Brown, and Chawla (2003) described delays in receiving asthma care as four times more likely for children living below the poverty line. In 2001, one in six uninsured children with asthma in California lacked a usual source of care; more than 40% had visited a physician once or not at all in the previous year (Meng et al.). Low-income families are also more likely to live in rental apartments in areas where environmental asthma triggers are especially high and are im-

and financial resources, Latino children with asthma are at increased risk for receiving inadequate medical supervision of chronic symptoms. Parents of Latino children with asthma frequently use the emergency department to obtain care for their children and have difficulty detecting symptoms and avoiding triggers (Klinnert, Price, Liu, & Robinson, 2003). Latino families use emergency services for asthma care because they perceive that emergent care is needed (Berg et al., 2004; Lara et al., 2003). Latino families face childhood asthma as a common, sometimes fatal chronic illness, while attempting to manage the illness with limited resources. Understanding the needs of Latino families with a child with asthma may better enable health care providers to help parents avoid asthma attacks and symptoms. THEORETICAL ORIENTATION The community-focused vulnerable populations’ conceptual model (Flaskerud & Winslow, 1998) served as a theoretical orientation for this study. Vulnerable populations are social groups with diminished resources that consequently experience an increased risk for morbidity and mortality (Flaskerud & Winslow). Key constructs in the model are resource availability, relative risk, health status, and vulnerable population. Available resources are articulated as environmental (e.g., related to access to and quality of health care) and socioeconomic (e.g., related to income, education, housing, and social status). Relative risk refers to a social group’s vulnerability to poor health given diminished resources, in comparison with the vulnerability of social groups who have resources and no exposure to health risks. The health status of vulnerable populations is threatened by limited resources and risk exposure and is reflected in morbidity and mortality statistics. This model provided
Journal of Pediatric Health Care

Latino families face childhood asthma as a common, sometimes fatal chronic illness, while attempting to manage the illness with limited resources.
poverty and those who are Spanish speaking only, may have additional health and social issues that health care professionals need to recognize and address. To provide high-quality care for Latino children with asthma, more information is needed about the asthma experience from the perspective of Latino families. BACKGROUND Childhood asthma affects approximately 9 million children in the United States and remains the most common chronic childhood disease for all children in the United States (American Lung Association, 2004; Centers for Disease Control and Prevention [CDC], 2004a). Children from
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possible to modify (Delfino, 2002). Managing childhood asthma presents difficulties for Latino families with limited resources. Differences in health care use and access likely add to ethnic and income disparities in relation to asthma morbidity and mortality (Akinbami, LaFleur, & Schoendorf, 2002). According to the National Health Interview Survey (JanuaryJune 2003), Hispanics were less likely than non-Hispanic whites or non-Hispanic blacks to have health insurance (Cohen, Hao, & Coriaty-Nelson, 2004). In the year 2000, 27% of Latinos lived below poverty level compared with 19% for the total U.S. population (Marotta & Garcia, 2003). In part because of lack of health insurance

an orientation for the study by focusing on major issues that often result in health disparities among vulnerable groups. Latino children with asthma living in Los Angeles constitute a potential vulnerable population. The frequent use of emergency and urgent care services and reported limitations in physical activity suggest threats to their health status (Simon, Zeng, Wold, Haddock, & Fielding, 2003). Another indication of vulnerability is that low-income Latino families have diminished resources to cope with their child’s asthma. Latino families may not have access to health insurance or health care providers. Reliance on public transportation in the Los Angeles area presents another obstacle to adequate health care, be-

ethnographic group and individual interview techniques (Spradley, 1979; Tedlock, 2003). Ethnographic interview techniques refer to methods that encourage research participants to talk about their experiences with a minimum of guidance from the researcher (Spradley). These techniques serve to facilitate group process and to elicit and comprehend expressions of a social group within the context of the group’s culture (Berg, 2001; Morse & Richards, 2002; Spradley). Individual interview techniques refer to communication techniques applied in a one-to-one conversation to elicit comments from the speaker (Rubin & Rubin, 2005). The same interview guide was used for the group and individual interviews.

borhood. We visited the MATC on 3 days. Approximately 10 children had scheduled appointments each day. As children and their parents visited the MATC, the MATC staff distributed flyers describing the study. Parents interested in participating approached our study staff members. Twelve families, who met the inclusion criteria (Latino children diagnosed with asthma before 5 years of age), expressed an interest in participating in the study. Seven mothers and 2 fathers attended one of three group discussion meetings. Three of the families who volunteered to participate in the study were unable to attend any of the meetings. Ultimately we were left with 8 families represented. Group Interview Guide We created an interview guide based in part on a review of the relevant literature and on consultation with clinicians who provide childhood asthma treatment in the Latino community. In addition, the primary investigator spent time at the MATC to better understand issues surrounding asthma management for this cultural group. The interview guide was translated from English to Spanish and back from Spanish to English again (back translated). The translated interview guide was checked for accuracy of content and translation by (a) a Latina anthropologist and professional group facilitator, (b) Latina master’s-level nursing student research assistants, and (c) an independent professional Spanish translator. Procedure The University of California, Los Angeles, and University of Southern California institutional review boards approved the involvement of human subjects. After approval was granted, the study was conducted in three phases. The initial phase consisted of a group meeting with parents, followed by the second phase of individual interNovember/December 2007 363

After reviewing themes from the data with the parents, we asked them to become part of an advisory board to help develop an asthma educational program for their community.
cause families may need to travel great distances and endure slowmoving traffic to reach providers, even in emergency situations. STUDY PURPOSE The purpose of this study was to explore Latino family experiences and needs in caring for a child with asthma. METHODS The study used an exploratory design to discover Latino parents’ experiences with managing their child’s asthma and the meaning asthma has for their families. We selected a qualitative, exploratory approach as the most appropriate way to learn the parents’ perspectives. To learn from the parents about their experiences, we used
Journal of Pediatric Health Care

Setting and Sample The study took place in the inner city of Los Angeles. The research team used one of four existing mobile asthma treatment centers (MATC) to identify and to recruit a convenience sample of Latino families of children with asthma. MATCs treat approximately 3,000 children at 21 school sites in Los Angeles. Children treated through these MATCs are predominantly Latino (80%) and African American (12%). Approximately 25% of the children have no health insurance (Jones et al., 2005). The MATCs visit elementary, middle, and high schools Monday through Thursday during the school day. Each MATC site serves a number of schools in the neigh-

TABLE. Guide: interview questions
Asthma focus Question

Experience Management Knowledge

What are your family’s experiences with having a child with asthma? What is the most confusing thing about asthma? How do you manage your child’s asthma? What is the most difficult part of taking care of your child’s asthma? If your friend’s child had asthma and she asked you for information, what would you teach her about asthma? What did the doctors and nurses tell you about asthma that you felt was very important information? What didn’t the doctors and nurses tell you that you felt you needed to know about taking care of your child’s asthma?

views and the third phase, consisting of a second group meeting. Initial Phase: First Group Meeting Parents completed consent forms and agreed on convenient times for the initial group interview to be held at a local community site. Parents attended one of three small-group sessions held on three

standings, and (e) interactions with health care providers (see interview questions in the Table). The group interviews were conducted entirely in Spanish and lasted approximately 90 minutes each. For consistency, the facilitator presented the same five questions in the same order in each group. Participants listened to each question and then responded to the ques-

contrast to comments made in the group setting. Probes were used to give the parents an opportunity to add further comments and provide more in-depth descriptions. All individual interviews were conducted in Spanish and were tape-recorded. Third Phase: Second Group Meeting After all group and individual interviews were completed, transcribed, and analyzed, parents attended a second group meeting. This group was held at a community center. Five mothers who attended the initial groups were able to participate. The second meeting provided an opportunity for parents to confirm findings of the previous interviews and verify themes. A bilingual group facilitator presented the themes gathered from the initial small groups. Participants shared comments. The session was conducted entirely in Spanish and was audiotaped. Research assistants who were later involved in data management observed the group. One research assistant noted participants’ comments on a blackboard while another recorded group content on a notepad. In addition to reviewing findings and themes, a physician from the mobile asthma treatment program met with parents at the beginning of the second group discussion to answer the parents’ questions about caring for their child with asthma. This is an ethnographic participatory technique that was used as a mechanism to
Journal of Pediatric Health Care

Strength and resolve emerged from the parents’ resourcefulness and led them to begin developing other alternative strategies to assist them in their care for their child with asthma.
consecutive days to accommodate parents’ availability. Parents received parking, child-care fees, and a $20.00 supermarket gift certificate at the conclusion of the meetings. A bilingual, bicultural, Latina professional facilitator– medical anthropologist conducted all of the initial group sessions. A second bilingual, bicultural, Latina research assistant accompanied the facilitator and took active notes during all sessions. Research assistants who later would be involved in data management observed the group. All sessions were audiotape-recorded. Interview content focused on (a) asthma management needs, (b) descriptions of self-reported barriers in accessing health and asthma information, (c) barriers to care, (d) cultural under364 Volume 21 • Number 6

tion and commented on what other parents said. Parents readily shared experiences throughout the group sessions. Second Phase: Individual Parent Interviews At the conclusion of the group interview, facilitators invited parents to an additional individual interview. These individual interviews were conducted in parents’ homes. The same procedure was followed, and the same questions were asked with the individual interviews as with the group interviews. This strategy enabled parents to respond independently to the same questions that were discussed by the group. It also allowed researchers to obtain parents’ individual perceptions in

give something of value to the community and thank the parents for their prior participation in the study. The asthma presentation was given after the parents had already provided their perceptions and talked about their experiences during group and individual interviews. After reviewing themes from the data with the parents, we asked them to become part of an advisory board to help develop an asthma educational program for their community for a future Community-Based Participatory Research project. Participants requested an additional session for family members who were previously unavailable and for friends who were parents of children with asthma. In response, we held an

beled files for easy retrieval. Several steps were followed in the analysis of the data. Step 1: The researchers read and reread the three data sets (transcripts, field notes, and blackboard notes) and confirmed the accuracy of the transcripts by reading them while listening to the tapes. Step 2: Two researchers independently coded each transcript. Using thematic content analysis procedures (Berg, 2001; Morse & Richards, 2002; Schatzman & Strauss, 1973; Spradley, 1979; Tedlock, 2003), the researchers reduced the transcript data by identifying segments according to the question categories in the interview guide. These data segments were gradually refined and consolidated to avoid overlap

from participants in phase 3 discussions, resulting in this data report. Description of Study Participants At the time of consenting to the study, parents filled out a demographic questionnaire. Eight families participated in the study, including 7 mothers and 2 fathers. The participants, ranging in age from 28 to 51 years, were predominantly Mexican, with two born in El Salvador, one born in Honduras, and one born in the United States. Eight participants had immigrated recently within a 3-year period and had resided in the United States during the 3 years since immigration. All parents had children in whom asthma was diagnosed before age 5 years. Parents in seven of the families predominantly spoke Spanish at home; the remaining two spoke English and Spanish at home. We collected minimal information about immigration status and income from these families because of parents’ concern about privacy and confidentiality. We were not able to assess acculturation and recognize this as a limitation in the study. We attempted to balance privacy and safety issues out of respect for these families. We also used pseudonyms to protect the anonymity of our participants. FINDINGS Several common themes emerged from the data in all three participant focus group discussions and were confirmed in the in-depth interviews: (a) fear, “I got scared”; (b) the acute care experience, “I was not told what to do, nothing”; (c) knowledge, “I did not know anything about asthma”; and (d) parent alternative strategies/ strengths, “We want to do what is best. . . . we need to be prepared.” These themes follow a trajectory of parental responses beginning with the fear the parents experienced
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The recurring theme in all of the discussions and interviews was a combination of not knowing what to do, a sensation of helplessness, and lack of understanding about the disease process and the treatment regimen.
open educational session that provided basic asthma information and facilitated participant questions and group discussion. and to begin the process of discovering unifying themes. Step 3: A third researcher independently coded the transcripts according to repeated words and phrases. This third researcher then recombined the two forms (segments per interview question and repeated words and phrases) of coded interview data into a single group of common themes with a set of reflective notes, interpreting and describing the relationships between the two sets of coded data (Denzin & Lincoln, 2003). Step 4: The research team reviewed the coded data and data summaries from group and individual transcripts and compared these data with field and blackboard notes. This process was integrated with the comments

Data Management and Analysis We audiotaped all group and individual interviews. A bilingual staff member translated and transcribed each tape verbatim from Spanish to English. A second bilingual staff member examined all transcripts for accurate translation. These transcripts and the other data sets (field notes with reflective interpretations of observed behaviors and transcribed blackboard notes constructed during the group interviews) were stored in separate, secure, and clearly laJournal of Pediatric Health Care

when their child was “out of breath.” Parents then described how they “got scared” thinking the child could die. Their experiences when they took their child to an acute care facility troubled them and left the parents feeling inadequate to care for their child because of their perceived lack of knowledge about asthma. Their determination to “do what is best for my child” prompted them to seek alternative resources within their own informal networks in the community. Strength and resolve emerged from the parents’ resourcefulness and led them to begin developing other alternative strategies to assist them in their care for their child with asthma.

a child 7 years of age with asthma, explained: One night he could not breathe . . . until he turned black and fainted and quickly I rushed him to the emergency room. . . . When I arrived they asked me what was wrong with my child and I told them, “I do not know, he can’t breathe”; they took him in and . . . they helped him quickly and this is when I really got scared because I saw him this way. Most parents explained that they took their child to the hospital or emergency department when they were unable to help their child recover from an asthma episode. Trips to the hospital often took place at night or when a parent was alone with the child. Mina,

tells me that he is not going to get to grow old. I ask him, “Why?” And he says, “Because I have asthma and I am going to die. I cannot breathe like you.” The Acute Care Experience— “I Was Not Told What to Do, Nothing” Once they reached the hospital, parents often felt more desperate. Clinicians and staff in the busy and crowded acute care delivery system often failed to meet the needs of the parents. Clinicians and staff may not have recognized that the extent of the parents’ fear was so great they may not have comprehended instructions. Many of the participants discussed the fact that they were never told their child had asthma. “Until my daughter was out of breath I was not told [she] had asthma.” Other parents complained that they were “not told anything.” These and similar statements were frequently made by the participating parents. One parent described her experience about not knowing what was happening with her child in the emergency department: The nurse would tell me don’t worry; I ask, “Are you going to admit him?” and she would say, “No, just a half an hour. . . . he is okay, everything is going to be okay, just calm down,” that’s it. But any nurse can do that, but for someone to come and say I am going to explain the procedure, nothing is going to happen to your child. All they would say is “Calm down, everything will be fine,” and I would see him continue to cough desperately and . . . they did not remove the machine, and no one would tell me why. One parent described a situation when her youngest son had an asthma attack: I was a bit scared because my oldest son had never had any of that. Therefore I thought that my son had something wrong and that he would possibly die. Unfortunately, the hospital only told me
Journal of Pediatric Health Care

Parents described their actions to obtain care, their frustration, and their inability to make sense of the medical community’s inadequate response. Frequently, parents labeled the treatment they received as rude.
Fear—“I Got Scared” Participants were very emotional during the group discussions and interviews. At times, participants would cry and then apologize for their emotional outbursts. Participating parents often responded initially to questions by describing feelings experienced during their child’s asthma events. Parents acknowledged each other’s experiences and contributed their own similar stories. When parents discussed a traumatic event, they tearfully described fear and turmoil related to the episode. Fear, desperation, and anxiety for the immigrant Latino parents in the study occurred when their child could not breathe. As one participating parent, Tora, the mother of
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also a mother of three children, two with asthma, talked about her fears in the following example: I would spend more time at the hospital than at home. . . . my . . . son would get frightening asthma. . . . I would have to run to the hospital at 2 o’clock in the morning. . . . I thought that perhaps he could die. Fear of death during an asthma episode pervaded the discussions when parents talked about getting scared or anxious and feeling desperate. An even more upsetting event for the parents occurred when their child expressed fear of dying. Marta described the time when her son talked about dying: It [son’s talk about dying] causes me great anxiety because my child

that it was a bronchial problem that they were going to treat; they never told me “asthma.” This same parent further explained that providers dispensed albuterol and brief instructions but did not offer classes or education about the child’s illness. All they told me was that his bronchi were very congested, they were closed, what the medication would do is open them so that he could breathe—to be very careful when he coughed and that if he became very ill to run to emergency. But they never told me, you know, that “He has asthma and this is what can happen” because as I understand it, a child can die of asthma. Their anxiety increased when they were unable to explain what they thought was wrong with their child because of a language barrier. For example, Nora, a mother of three who recently moved to the United States from Mexico, explained her exasperation with not being able to express her child’s symptoms to a non-Spanish-speaking physician: “There are some doctors that don’t know Spanish and I cannot speak with this person and say, ‘My child has this, has that, this happens, take care of him quickly, and things like that.’” Participants perceived, and were sometimes told, that there was “no time” for them. One parent, Paola, explained what happened to her: “I tell him [the doctor] I got this problem and this problem and he responds, ‘Just tell me one problem. Do not tell me any more problems because we don’t have too much time to spend with one patient.’” Nora, a parent in a different discussion group, commented, “They do not care if they attend [our children] today or tomorrow. . . . so they talk and talk over here and we are suffering over there with our children.” Participating parents also told stories of cold, rude treatment. Rita, mother of four, described an incident that made her very angry
Journal of Pediatric Health Care

and upset at a time when she was already frightened about her daughter’s illness: It took 3 months to get care. There was this girl that worked at one of the clinics who was very rude. . . . This woman told me I had to have brought her earlier. . . . I was upset. I had nerves. I had taken my child very sick to that place and I had another child with me too . . . I don’t think it was right for the woman to treat me like that . . . I have seen the receptionists, the nurses talking, laughing at us, and they have us waiting until they feel good and ready to call us. Vera, a mother in a different group, took one of her three daughters on the bus, an hour’s ride to the hospital, worrying all the while that her daughter would stop breathing before she arrived. After she arrived at the hospital she discovered she would be required to wait longer until someone would care for her child. How can I explain it . . . [it’s] as if they are giving the services for free. They just tell you to “Wait a while” or “We will see you soon,” but they are very cold since they can’t feel the pain that one is experiencing and you feel so hopeless because you can’t do anything. Throughout the interviews, parents emphasized the need to know what to do for their child with asthma, including during emergency situations. For example, Nora expressed her perception: “Well the most difficult is to see him [my child] there [in the emergency room] without knowing what to do.” Knowledge—“I Did Not Know Anything About Asthma” Parents’ perceived lack of knowledge compounded their problems when the system failed them and further escalated their fear and anxiety. The recurring theme in all of the discussions and interviews was a combination of not knowing what to do, a sensa-

tion of helplessness, and lack of understanding about the disease process and the treatment regimen. A father explained what happened when his daughter became ill during the night: It happened one night at about 11:30 in the evening. She started with a cough and she coughed and coughed and coughed and I got up. . . . I gave her a little bit of water and started to look over her prescription. We have a spray we should apply in an emergency and . . . I looked for the spray and gave it to her according to the instructions, and waited for a while, about half an hour and she was still the same, so what I did is that I took her to the hospital . . . and they kept her under observation. But this was something I truly had never experienced, and my wife and I were pretty scared. Tomas voiced the anguish experienced and shared by the other participating parents: What makes it hard is the lack of information. If one would be well informed, one could deal with it better. . . . [What’s hard is] the not knowing what to do, to see your child sick and not being able to do nothing[sic]. Parents said they wanted to know, “Can asthma be cured? Will it go away? Why does he get sick even when he takes the medicines?” Nora described another aspect of the parents’ dilemma when she asked, “What did I do? What did I do wrong as a mother that he has this?” Parents admitted, “We are confused.” The parents’ perceived gaps in knowledge might have resulted in part by what they learned from family and friends that may have differed from what they were told in acute care settings. Marta described knowledge obtained from her aunt who cautioned her to follow certain advice: A lot of people say, at least in my family, they say not to drink anything cold because . . . it is bad. . . . I do not believe those things,
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but I have an aunt that is older and since she switched religion she says that . . . she no longer suffers from asthma. . . . she says, “Well, you have to take care of him [Marta’s son with asthma] that he doesn’t drink anything cold. . . . Or when it’s cold he should always have his back covered.” Tomas explained this dilemma to the group, “Yes, many times according to our ancestors, we get the traditions of ’don’t do this because this will happen to you. . . . ’ So we are carrying a series of beliefs from the past.” The parents’ perceived lack of knowledge about what information was most accurate and helpful to their child with asthma led them to seek to improve their knowledge base and to search for improved health care. Parent Alternative Strategies/ Strengths—“We Want to Do What Is Best. . . . We Need to Be Prepared” When the system failed them and they recognized their own knowledge gaps, impoverished immigrant Latino parents who had been separated from their usual family supports were further devastated. Their desperation led parents to seek help, information, and advice from coworkers, other parents at their child’s school, and from neighbors. Pedro, a father of four, talked with a friend at work who also had a child with asthma. Pedro’s coworker said he had been advised to remove the carpeting. The two fathers encouraged each other to remove their carpeting “even though we were not homeowners,” an action that took courage. During the discussion Pedro explained the problem carpeting causes. What happens is, that even if you vacuum, as you step on the carpet, the invisible dust that you cannot grab [with the vacuum] stays underneath and [then when stepping on the carpet] flies around. . . . I noticed that since we
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removed it my daughter hasn’t been ill. Considerable discussion ensued among the participants; one denied that vacuuming would help. Pedro continued to explain and was able to convince this parent of the danger that carpeting poses for persons with asthma. In their search for care, knowledge, and information, parents found other parents of children with asthma and learned from these parents or from their child’s school about the mobile van. They learned that the mobile van provided health care for children at various school and community locations. For example, Rita explained that her son had experienced eight episodes of dyspnea by the age of 6 years, and even sending him with an uncle to Mexico did not resolve the problem. “But then, my friend told me that there was an asthma truck at his school. . . . I started visiting this truck and, from there on, thank God [he improved].” Participants, who learned of the mobile van from other parents and from the school, considered the MATC to be quite literally a “Godsend.” Marta described what happened soon after her child had experienced an acute asthma attack: Around that time I remember that a doctor from the asthma mobile arrived at school and I told him, “You arrived as if God had sent you to me,” because it was exactly when he got sick and I was feeling frustrated because I did not know what asthma was and no one would tell me what to do. Participants voiced praise for the MATC service and acknowledged that this had been their best source of knowledge and hope. Mina and Vera talked about this service. Mina said, “I’m delighted” with the asthma van. Her interrupted comment continued later when Vera explained, “I . . . wish this [asthma van] would extend or continue because I know that there are many mothers that need

it and the hospitals do not have the care, the support one gets [at the van].” Participating parents recognized their lack of knowledge, repeatedly commenting as did this parent, “I don’t know enough about asthma, I wish to know more.” Their perceived lack of knowledge led them to talk about ways to learn more. During these discussions, they talked about what they did know, indicating they had picked up some information during contacts in formal health care clinical situations and conversations with other parents. With the exception of the discussion about the carpeting, parents were somewhat tentative in talking about what they did know, demonstrating an awareness of the gaps in their knowledge. As Rita mentioned, “The more information I have, the more I can fight with this illness and help my children.” Parents demonstrated their determination to fill the gaps in their knowledge when they asked questions in the discussion such as, “What causes asthma; what complicates asthma inside the body?” Mina said she wanted information from “an organization, like people who had more power than us as mothers, not as Latinas, but as mothers. Is it possible to implement, like for example, more information at the hospitals?” The participants demonstrated considerable courage in their determination to “do the best for our children.” Their efforts signal their possession of numerous strengths they can mobilize on behalf of their child and themselves. They explained that they needed to “pay attention to the treatment, be sure medication is never lacking at home,” and “be consistent with doctor visits.” Parents told their children, themselves, and each other, “Don’t lose hope.” In addition, the parents talked with each other about things they did and said for their children so the children would believe that they were
Journal of Pediatric Health Care

living a normal life. Parents also asked their children to “be responsible” about taking care of themselves, teaching them to be selfreliant. Parents talked about things they like to do with their children. Tomas described things he does with his children, “During my free time, my wife and I enjoy going to the park with our kids.” Tora described reading to her children and taking them for walks. Rita told about playing basketball, baseball, and Nintendo games with her four children, as well as helping them with their homework. DISCUSSION In this study, Latino families described fear, experiences with the acute care environment, lack of knowledge, and strategies and strengths in dealing with their child’s asthma. Some of these themes have been expressed elsewhere and may be related to the stress of having a child with a chronic illness such as asthma (Kieckhefer & Ratcliffe, 2000; Maltby et al., 2003; Trollvik & Severinsson, 2004). Although the experience of caring for sick children (particularly those with asthma) is stressful in any family, the participants in this study faced additional obstacles as low-income, immigrant families. In light of these additional challenges, participating parents demonstrated ongoing efforts to gain knowledge and skills to give their child the best care. Parents described their actions to obtain care, their frustration, and their inability to make sense of the medical community’s inadequate response. Frequently, parents labeled the treatment they received as rude. All participants commented on the cold, seemingly unfeeling treatment by health professionals. Clark (2002) conducted an ethnography with immigrant Mexican mothers and found that the mothers interviewed requested health services that provided “intervention, explanation, and personalismo” (a warm and
Journal of Pediatric Health Care

personal approach) (p.175). In Clark’s study, the lack of personalismo affected the type of care that mothers obtained for their children, resulting in less primary care and more emergency care. Other studies have corroborated the increased use of asthma emergency services by immigrant Latino parents (Lara et al., 2003; Flores, Abreu, Tomany-Korman, & Meurer, 2005), perhaps because the use of primary care can be such an unpleasant experience for Latino families. Lara et al. acknowledged that worsening asthma symptoms are cited as the reason, a justifiable reason, for using emergency department services. Flores et al. described parent and physician perspectives on asthma hospital use. A smaller percentage of parents (26%), compared with physicians (40%), thought the hospital visit could have been prevented. Transportation, money, and language are usually cited as barriers to health care in underserved populations. In our study and in other studies, a primary barrier to care was the attitude of the health care worker (Lara et al., 2003; Clark, 2002; Martin, Hernandez, Naureckas, & Lantos, 2005). Martin et al. described comments of community health workers concerning access to care issues in their community. The community health workers acknowledged that the biggest barriers to care did not relate to language and insurance, but to “quality of care and the ability of people to understand the information about asthma, whether in Spanish or English” (Martin et al., p. 893). In our study, parents were not deterred but used their negative experiences as a catalyst to seek additional sources of support. One of the additional sources of support that participants discussed was the MATC. Parents described how they first heard of the MATC through coworkers and friends. They acknowledged its help “as if God sent you to me.” Information

sharing was a way that parents learned about asthma and also a way to express how much they did not know. The parents’ alternative sources of advice and help demonstrated that they shared information with each other. During the group discussions, parents gave many suggestions for improving the quality of care in acute care settings. The trajectory portrayed in the Figure diagram emerged from the data as we examined the themes. Coincidentally, the trajectory and the themes reflect the three components of the theoretical orientation used in this study (Flaskerud & Winslow, 1998), thus the inclusion of the components (resources, health status, and risk) on three of the themes in the trajectory diagram. When parents recognized that their child could not breathe and sought help at the hospital or emergency department, they often encountered a failure of these health service resources. The parents were apprised of their child’s health status when they finally received the asthma diagnosis. Their perceived lack of knowledge regarding asthma became their self-identified risk accompanied by their continuing fear about the potential for their child’s further morbidity and possible mortality. Dissatisfied with the health services they had received, these families sought alternative resources through their existing family, work, and friendship networks (see Figure). The themes and the trajectory demonstrate that although the parents were frightened each time their child had an asthma attack or breathing problems, they marshaled their courage and strength. They expressed their concerns and identified alternative resources to improve their child’s health and quality of life. The parents explained the kind of care they were seeking for their child and the respect they wished to receive. Their requests serve as the basis for craftNovember/December 2007 369

FIGURE. Trajectory from fear to alternative resources for asthma care
Child couldn’t breathe “I got scared” Search for Help “I took child to Hospital”

Resources System Failure “I was not told what to do, nothing” “They did not tell me what was wrong”

Health Status “They said he had asthma”

Risk “I didn’t know anything about asthma”

Alternative Resources “I talked to parents at school” “ I went to asthma truck”

ing interventions and modifications in care delivery. IMPLICATIONS The interest of the parents and their willingness to give advice and to help each other can be emphasized as mechanisms for mobilizing community and system interventions. Community partnerships can be developed to involve interested parents to participate in parent support groups, as well as to initiate promotora programs (Balcazar et al., 2006; Nichols, Berrios, & Samar, 2005). Promotora programs use natural helpers, or promotoras, at the community level, who, with additional training, function as lay health workers to help others within their neighborhood communities (Balcazar et al.; Nichols et al.). Recognition of parents’ need for respectful treatment and personalized culturally and linguistically competent care for their child can motivate nurses to serve as liaisons, advocates, and/or culture
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brokers for parents and children within even the busiest emergency and urgent care facilities. Focused education for nurses should include strategies for recognizing and reducing parental fear and stress before offering patient education and information. Parents actually know more than they may realize, but much of that knowledge has been gained from lay sources. Nurses can assist in helping parents to know which information is helpful to their child and relevant to their home situation. It is important to help parents more effectively mobilize their own resources and restructure care in their communities. SUMMARY In summary, this study provides some information about the strengths and needs of immigrant Latino parents of a child with asthma. Parents demonstrated their desire to provide the best care possible for their children with asthma, as well as opportuni-

ties and encouragement for their children to lead healthy lives. The parents clearly voiced their need for assistance to meet these goals. Health care providers in general and nurses in particular can improve care for the Latino child with asthma by addressing the educational and support needs of Latino parents. Effective approaches should address parental fear and promote knowledge and skill development regarding asthma. Before offering asthma education, clinicians need to acknowledge and help reduce parental fear so that parents are able to take in new information. Culturally acceptable strategies such as parentto-parent support and promotora programs that incorporate personalismo would enhance the clinicianto-parent interaction dynamic. Further research is needed to address asthma treatment and education programs that reduce parental fear, develop parental asthma management skills, and incorporate culturally sensitive supports, for example,
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