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Parental Perspectives of Early Childhood Caries
Inyang A. Isong, Donna Luff, James M. Perrin, Jonathan P. Winickoff and Man Wai Ng CLIN PEDIATR 2012 51: 77 originally published online 7 September 2011 DOI: 10.1177/0009922811417856 The online version of this article can be found at: http://cpj.sagepub.com/content/51/1/77

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as with other chronic diseases.org . 12 A contemporary approach to caries disease management is modeled on the medical management of chronic conditions and aims to alter the balance of risk factors in favor of protective factors to halt or slow down the caries process. and Man Wai Ng. All interviews were transcribed and coded.to 5-year-olds. conduct preliminary oral health assessments. James M. Results.10. MPH1. Isong. USA 3 Children’s Hospital Boston. Suite 901. 9 Caregivers’ oral health literacy is significantly associated with children’s oral disease status. parents. Conclusion. Boston. PhD2. adequate fluoride exposure.8 Families also play an important role in children’s oral health.Parental Perspectives of Early Childhood Caries Inyang A. perceptions.11 Until recently.4. SM1.1.com/journalsPermissions. USA Email: iisong@partners. Donna Luff.sagepub. Parents expected pediatricians to provide education on how to prevent childhood caries. MassGeneral Hospital for Children. surgical treatment of caries alone does not address the underlying disease process.The findings make a strong case for pediatricians to take responsibility for engaging and educating parents on fostering optimal oral health and helping to access early childhood dental care. Center for Child and Adolescent Health Policy. MPH. MPH3 Clinical Pediatrics 51(1) 77­–85 © The Author(s) 2012 Reprints and permission: sagepub. Isong. MD. MA. topical fluorides. Winickoff. along with general recommendations to change dietary and oral hygiene practices. Keywords children.1177/0009922811417856 http://cpj. caries. standards of care for ECC called for restorative and surgical treatment. USA Harvard Pediatric Health Services Research Program. Parental beliefs and self-efficacy help determine to what extent they engage in oral health promoting behaviors.7 Optimal prevention and management of early childhood caries (ECC) involves establishment of good oral hygiene. Boston. MA. However. Boston. Methods. and iterative analyses were conducted to identify key emergent themes within the data. MA. various social and behavioral factors influence children’s oral health. it is primarily a pathologic process driven by bacteria.nav DOI: 10. qualitative interviews Introduction Dental caries is the most prevalent chronic disease in US children.6 Children’s diet and oral hygiene practices affect their oral health.2 It is a reversible disease whose progression or reversal depends on the balance of demineralization and mineralization. Jonathan P. The authors conducted semistructured interviews with 25 parents of children aged 2 to 5 years.3 Disease management requires family engagement in day-to-day behavior modifications (tooth brushing. DDS. Parents had limited knowledge of behaviors contributing to early childhood caries and when to first seek regular dental care. 50 Staniford Street. and expectations regarding prevention and management of early childhood caries.6 Parents help define oral health practices early in their child’s life and also determine when to establish regular dental care. Parental perspectives of children with early childhood caries may help inform the development and improvement of caries prevention strategies. MD. and minimized exposure to dietary sugars and refined carbohydrates. Boston. Perrin. MA 02114. Objectives. and dietary control) that address disease etiology.com Abstract Background. with a known history of caries. with increasing rates among 2. MD1. MassGeneral Hospital for Children.5 However. USA 2 1 Corresponding Author: Inyang A. and help establish early linkages between medical and dental care.3 Although causes of caries are multifactorial.This study aimed to explore parents’ experiences.

Methods This study was conducted from June to December 2009. The oral health status of many children in the project showed caries arrest (remineralization). IAI) independently categorized and coded interviews. perspectives on prevention medications. 1 sociologist. with a history of caries. Questions explored parents’ general perspectives on health and oral health. age (2-3 years. MWN. stratified sampling techniques to identify and recruit parents. Study Setting/Participants We recruited parents of children aged 2 to 5 years. parent/provider interactions) influencing optimal asthma practice by families. and experiences managing their child’s caries at home. We pilot-tested the guide and obtained verbal consent before each interview. and (c) determine parents’ knowledge and expectations regarding prevention and management of ECC. cultural practices. The team created a hierarchical structure of codes and higher codes. Three researchers (DL. Children were stratified into . and health influencing behaviors. The aims of this study were to (a) explore how parents’ perceptions of caries are influenced by their social and physical environment. Data Analysis We used a thematic data analysis approach. Both interviewers were trained to conduct semistructured interviews. We also identified factors from the literature as important in ECC prevention.21 We developed the guide by adapting questions used in previous qualitative oral health studies17 and in consultation with a team of qualitative research experts (1 cultural anthropologist. The interview guide was first translated into Spanish and then reviewed by another Spanish speaker to verify content and meaning. and 2 clinicians). and identified emergent Sampling and Recruitment Strategy We used purposive. we developed a conceptual framework based on the model of Wu et al19 indicating factors (eg.17. Invitational letters describing the study. and had been enrolled in the ECC demonstration project for at least 6 months. We followed up with phone calls to enroll parents who did not opt out. MWN (pediatric dentist) and IAI integrated all coded data. and graduate student). parental beliefs. whereas other children continued to display caries progression.13.15-18 However. Hispanic. (b) explore how parents’ experiences and perceptions of caries influence ECC management and prevention at home. including opt-out return post cards. We first transcribed Spanish interviews in Spanish and then translated them into English. using NVivo 8. were mailed to a randomized sample of parents of children drawn from each criteria-defined group. We mailed participants who completed the interview a $45 gift card. influences and expectations regarding caries prevention and management of parents whose children have ECC. We recruited participants from these groups based on the known proportions of the demonstration project population to get a representative sample of respondents. English interviews were conducted by IAI (female pediatrician) and Spanish interviews by Odeviz Soto (OS) (male. perspectives and interactions. while exploring their expectations regarding prevention and management strategies. Interviews lasted up to 60 minutes and were conducted using a standardized interview guide.20 The study was approved by the CHB Institutional Review Board. To guide the study. vs 4-5 years) and race (white. were patients at CHB dental clinic. and attitudes toward their children’s oral health.14 Previous qualitative studies explored parents’ beliefs. native speaker. none of these studies focused exclusively on parents of children with prior ECC. for recruiting equal numbers of parents.16. we were interested in qualitatively exploring the prior knowledge. Differences in coding between MWN and IAI were discussed with DL—a sociologist experienced in qualitative methods— until MWN and IAI reached agreement. The guide comprised a core list of open-ended questions and probes that were modified iteratively during the interviews to explore emerging themes. As part of this project. and receiving dental care on behalf of their child. Data Collection We conducted semistructured telephone interviews with parents in English and Spanish. analyzed the data iteratively. Clinical Pediatrics 51(1) categories based on clinical indicators of ECC status and clinical outcomes (caries arrest vs progression). knowledge and understanding of caries. A qualitative approach is useful for developing theoretical insights and allows for a deeper understanding of experiences. We used differences in project outcomes (caries arrest or progression). other). We recorded and transcribed all English interviews.78 A demonstration project was implemented at Children’s Hospital Boston (CHB) dental clinic to test the feasibility of implementing an ECC disease management approach and determine if this approach would result in improved clinical outcomes.

This lack of knowledge was prevalent across all socioeconomic groups. 56% of respondents were white. Parents were not aware of the multifactorial etiology of caries.Isong et al. Although both parents were recruited. the few fathers preferred to have the interview conducted with the child’s mother because they considered the mothers to be the primary care giver. For example. fluoride) Oral health experience/expectations Self-efficacy Guilt and perception of blame Competing priorities Parent/Provider Interaction Communication Parent information seeking Provider counseling strategy Figure 1. These major themes are presented in the Results section. Parents reported that they lacked adequate oral health knowledge and had limited knowledge of behaviors contributing to ECC before participating in the ECC demonstration project. Child and Participant Characteristics n (%) Child characteristics   Age group (years)    2-3    4-5  Female   Insurance status    Private    Public     Public and private    Self-pay Parent characteristics  Mother   Age group (years)    25-29    30-39     ≥40  Race     White    Black    Hispanic     Asian   Primary language spoken at home not English   Other children in household   Single-parent household     8 (32) 17 (68) 10 (40)   9 (36) 14 (56) 1 (4) 1 (4)   25 (100)   5 (20) 12 (48) 8 (32)   14 (56) 1 (4) 8 (32) 2 (8) 10 (40) 18 (72) 8 (32) Results Of 32 eligible parents to whom we sent letters. some . We integrated key themes and used them to refine our conceptual framework (Figure 1). and 4% African American. aged 25 to 59 years (Table 1). 79 Social Milieu Normative pressures Contradictory messages Family Factors Demographics Oral health beliefs Cultural factors Provider/System Factors Provider knowledge Insurance limitations Cost of care Child Factors Overall health Oral hygiene Dietary behaviors Consequences of caries Fluoride exposure Dental visits Optimal Caries Prevention and Management Parent Factors Oral health beliefs and literacy Attitudes (oral health. and was perceived by many parents to be an important contributor to their child’s ECC. Respondents were all mothers. In total. Many felt they were doing everything right and were shocked when their child developed caries. one Spanish-speaking parent was perplexed by the apparent unclear cause of her child’s caries and surmised that he was born with it (Table 2). 25 (78%) completed telephone interviews (18 English and 7 Spanish). Thematic Areas Child Oral Health Influences Impact of lack of knowledge and previous oral health experience. 8% Asian. 32% Hispanic. Qualitative responses did not differ by project outcome group or demographic variables. and so were combined in presentation of results. Table 1. Conceptual model for factors that influence prevention and management of early childhood caries themes within the data.

He started experiencing pain and would tell me he has a bad tooth. . My teeth were so good and so were my husband’s.” (DT12) Perceived importance of “baby teeth”   Theme 4: Influence of friends and family     “Well my mother . it’s rotting their teeth. He had night pain too. . Aside from not giving her candy we really didn’t worry about it too much until she had a problem. did not like the pacifier. . shortly after her teeth came in. so probably around 8 or 9 months. . So we just casually rubbed her teeth with a washcloth every once in a while. because he brought the cavities with him . Experiences. . he gets to start over in a few years.” (DT10) Social context/normative pressures   Theme 5: Social influences     “It’s difficult for us because we have to tell him often that that’s not a snack that is good for his teeth.” (DT16)     “He was 3 and I made his first dentist appointment and brought him to (the dentist) and they told me he had cavities and that cavities were forming and I almost had a heart attack. . I don’t understand how he ended up with cavities. That felt like we were being pulled in two separate directions.” (DT3)   Theme 6: Contradictory messages     “I figured you know what my kid is drinking milk. That’s difficult because there is so much emphasis put on junk food for kids. . . . but on the other hand. . That makes me doubt. My friend assured me oh they’re just her baby teeth.80 Table 2. because . tends to (play) the role of the grandparent—so we get a lot of the ‘oh he’ll be fine—they’re just his baby teeth.” (DT3)     “. he did not use a baby bottle. Thematic Area 1: Oral Health Perceptions.” (DT17)     “I wish that I’d taken better care of my teeth. .” (DT13)   Theme 3: Impact of parental personal oral health experiences     “. And even before his little teeth came out I had already started brushing . However. he only breastfed.” (DT23)   Theme 2: Parental surprise at early childhood caries     “He was about 3. I took (her oral health) very casually until she got these (cavities). . I noticed that her front two teeth looked dark to me. I mean. . I didn’t think he would have cavities. so much of their social world revolves around birthday parties and snacks. . . . When I was younger I didn’t take the greatest care of my teeth. . I didn’t really believe him because I didn’t think he could get a cavity. I am surprised. it was a shock. we were putting the syrup in (the milk) that was fortified with calcium and they market it saying oh look at this stuff— it’s good for your kid. every day that I’m doing things. . my daughter. they’re not his adult teeth. their child’s caries experience changed this perception and resulted in them establishing a dental home at age 1 year for subsequent children. That was really hard. . but I didn’t realize the risk of the continual milk-filled sippy-cup that you’re continually just bathing your teeth in. Lessons learned from the child’s ECC experience influenced how they managed the oral health of their other children. Some parents reported that they or other family members had experienced tooth problems or dental pain and did not want their children to suffer similar consequences. and Influences Clinical Pediatrics 51(1) Impact of lack of knowledge and previous oral health experience   Theme 1: Lack of adequate oral health knowledge     “. . so I feel like often he’s being told he can’t have something because of that. A key influence on how parents cared for their children’s teeth was their own personal oral health experiences and practices. Many reported that prior to their child’s ECC experience. they’re fine. In addition. . . . I was shocked.” (DT3) had associated it solely with excessive consumption of candy. so I feel like maybe as a parent I’m not as good at it. . there are other things that seem more important. and I do not know what happens with that. pain with sugar or chewing. I understood there was sugar in strawberry and chocolate syrup. they did not feel it was necessary for a child to see a dentist early in life. most parents were not aware of current recommendations on the timing of the first dental visit. These experiences altered their perception of their child’s ECC and the value they placed . .” (DT7)     “.’ Because she doesn’t like to see us tell him he can’t have something. But it was really pain. So when I first took him to a dentist and they told me that. Sometimes I feel like there are things that I take better care of and I realize I kind of project that onto the kids. . there was a period of time when he wasn’t gaining a lot of weight and we had the nutritionist telling us to get a lot of calories into him but we had Dr X telling us to give him as few snacks as possible. . Even though I know it’s important.

dentists. For example. Feelings of guilt were also associated with incidences of pain. aesthetic concerns. high caries risk patients who required more preventive care (eg. transportation. and friends and family members often made comments about their tooth discolorations or missing teeth. Some families (typically those with private dental insurance) reported excessive out-of-pocket expenses associated with managing their child’s caries. which then led to subsequent feelings of shame and guilt. pediatricians. Children and parents also suffered emotional consequences of ECC. Parental Information Seeking and Expectations of Pediatricians Parents recognized that all caregivers (parents. For example. daycare providers) played a role in preventing ECC. The majority of parents valued oral health as important and perceived oral health problems to be as serious as other health problems. On the other hand. daycare. Parental perceptions of blame and feelings of guilt. more frequent in-office topical fluoride applications) had to pay for the additional treatments out of pocket. Caries in baby teeth was believed to be temporary. reported that they still cared for their children’s teeth the way they cared for their own teeth.and long-term consequences of ECC and wanted to prevent them. For many families. This lack of knowledge resulted in many disregarding their child’s complaint of dental pain and delaying care seeking. the notion that baby teeth are not important was reported by parents as a prevalent belief among family members (especially grandparents) and friends (Table 2). financial. with no long-term consequences. A few parents reported first perceiving blame from a care provider. despite dentist recommendations. faced with this contradictory message. Contradictory messages. or need for general anesthesia for their child’s dental work. Parents also relied on friends and family members as sources of information. These consequences affected not just the child but the entire family. Many parents. Some parents were reluctant to restrict unhealthy food choices because of not wanting their child to be singled out as being different from other children. A few parents were concerned about exposing their children to fluoride and preferred to use herbal oral hygiene products. Some peers teased them. Many parents believed that their child’s ECC was perceived by health care clinicians as a parenting failure. The Internet was a commonly cited source of oral health information. Emotional effects. juice is a product heavily marketed to children and parents. costs associated with frequent dental visits (eg.Isong et al. They especially looked to their child’s pediatrician as an important source of oral health information but often felt that this information was not provided. Since private dental insurance typically only covers a limited number of preventive procedures per year. various erroneous beliefs of friends and other family members played an important role in their child’s oral health. several parents had limited prior experience with ECC and expressed surprise and confusion that young children could experience caries. Some parents reported that their children were embarrassed or had low selfesteem as a result of ECC negatively affecting the aesthetic appearance of their teeth. multivitamin drinks) marketed as beneficial for children. 81 Impact of Early Childhood Caries on the Child and Family Parents reported various physical. Perceived importance of “baby teeth”. parents turned to them first for oral health information and advice regarding ECC prevention. Physical consequences of ECC. teachers. especially on natural or herbal products. birthday parties. Not surprisingly. on disease management. Parents also noted this tension between their desire to provide what they thought was nutritious or healthy and the need to maintain optimal oral health for their child. Because children have frequent interactions with pediatricians. . Parents reported being uninformed about the negative impact some commercial products have on children’s oral health. and emotional consequences of caries in their children (Table 3). and so on. parking) as well as payment for dental supplies were burdensome for several families. as meeting important nutritional requirements. In addition. nonfluoridated toothpaste. Several parents felt guilty or responsible for their child’s caries. Physical consequences reported were mostly tooth pain and difficulty eating. They understood the short. This struggle also occurred frequently with other marketed products (eg. most struggled to limit their child’s juice intake. Social context/normative pressures. were inundated with unhealthy food choices. Children’s everyday activities and interactions at school. Some parents were also concerned about the physical appearance of their child’s teeth due to ECC or its treatment. with the potential of leading to serious health and social consequences if left untreated. Financial costs. This belief at times resulted in some parents being less vigilant about their child’s oral health behaviors or receipt of dental care. which parents found difficult to control. Parents’ own suboptimal oral health practices correlated with negative dental health consequences in their children.

conduct preliminary oral health assessments. or to break up the things that he cannot eat well.” (DT13)   “I don’t know if it was my own like. he was my first kid. . . You try to do everything possible for your kids and then you’re told he’s got these (cavities) You don’t want to put your child under general anesthesia unless it’s absolutely necessary so it was really a bad experience and I felt like it was all my fault. .” (DT22) Theme 8: Costs   “It definitely is a big ordeal. Infants and Children programs. I noticed that she just wouldn’t smile. It was kind of like ‘why did you wait till he was 3?’ I had no idea. I have to cut up meat for him. . just horrible. I didn’t know that he had to go when they first had their teeth. played an important role in ECC prevention and management. I didn’t know any of that. Various strategies have been implemented to improve parents’ oral health literacy. . we added up how much we were paying just for fluoride and visits and it was $28 a month. he needs his good little teeth. or white spot lesions indicating demineralization). because it’s not enough to break up the little pieces of meat for him. As has been previously reported. Almost like they didn’t believe me what I was feeding her. .” (DT4) Theme 10: Parental perceptions of blame   “The dentist was very ignorant..22-25 The perception of feeling blamed by health care clinicians for their child’s . I had to take him to the doctor again . A new finding of this study was the effect of contradictory messages on children’s oral health. These findings emphasize the importance of addressing the social context in ECC prevention programs. he can’t eat hard things like a normal kid who has good teeth .6 These social influences and normative pressures impacted parents’ ability to optimize their child’s oral health. the social milieu within which children live. Many consequences of ECC described in this study have been documented previously. I felt like they thought it was my fault—that I didn’t take good care of my daughter’s teeth. . . a little molar. . .” (DT10) Theme 11: Parental feelings of guilt   “. or that I . One regulatory approach recently implemented in Massachusetts requires child care programs to assist children with tooth brushing. and she kind of just looked at me when I have my history and the father’s dental history like. now he complains that a molar hurts him.” (DT8) Theme 9: Emotional effects   “Kids would just say such mean things to her. and ensuring accurate information in consumer marketing. I thought they were good for him but I guess I was wrong. but I don’t think so. and delayed care seeking until the child developed tooth pain. Some parents were frustrated by the pediatrician’s failure to provide education on ECC prevention. self-projected . your mouth is nasty’ . .” (DT15) or when they noticed early signs of caries (eg. including family and social factors.10. why would you even bring a kid into this world–type attitude and I didn’t even want to deal with her. he doesn’t want to eat. A few parents were satisfied with the pediatrician’s appropriate provision of preventive dental care and timely dental referral. tooth staining. So it adds up! And then we were trying to weigh that against the cost of just having them (the cavities) fixed in the OR. like ‘you don’t brush your teeth. Discussion This study provides a unique view of children’s oral health from the perspective of parents of children who have caries. so. prenatal classes and maternal postpartum hospital discharge counseling. .82 Table 3. . . And if she did smile she would always put her head sideways so she didn’t have to look directly into the camera. and recommend or help them establish early linkages between medical and dental homes. most parents reported receiving erroneous or no oral health information (Table 4). . However. . like I failed at making his teeth healthy and was giving him all the wrong things.” (DT9)   “I felt kind of bad. .11 parents’ limited oral health literacy was important in ECC prevention. . she made me feel like I was a dead beat mother. Thematic Area 2: Impact of Early Childhood Caries on the Child and Family Clinical Pediatrics 51(1) Theme 7: Physical consequences of early childhood caries   “.16 parents misdiagnosed their child’s caries as tooth “stains” in need of cleaning. Additional targeted oral health education efforts could be delivered through Women. Consistent with prior studies. he cannot chew well and I think that affects his daily life as a child. Parents’ reliance on personal oral health experiences to guide their care of their child’s teeth contributed to many children experiencing ECC and delayed care seeking. . In a study by Horton and Barker. When he wants to eat. $300 for the stuff that we pay per year plus those two cavities that were filled—that’s $400. I didn’t go to the dentist when I was a kid. . The goal is to provide families with oral health information and increase awareness of the importance of good oral health practices for children.

” (DT16)   “I noticed that her teeth were not normal like the other children’s. when can he sit in a chair. has encouraged and funded the development of collaborative and interdisciplinary training in oral health between medicine and dentistry. . Future studies can assess if factors . and everyday. interview style). and consequences of poor oral health on the family. and integrate oral health into overall systems of care so that pediatricians are better equipped to provide family-centered oral health information and services to their patients. where parents expressed guilt as a result of being unable to prevent ECC or extensive dental treatment for their children. accurate messaging. and can help clinicians better understand how to meet the needs of families of children at risk for caries.29-30 Our study highlighted important influences on children’s oral health that could be addressed in clinical practice. perceptions of blame) that influence prevention and management of ECC (Figure 1).28 Several medical schools and residency programs have implemented oral health internships and training modules. nonjudgmental way. The federal government. .’ I thought I was doing the best I can.’ I would tell the pediatrician and she would tell me that everything was fine. through the Title VII program. Table 4.Isong et al. .’ . and she would not refer . low oral health literacy. avoid a blaming approach and provide counseling in a sensitive. One limitation of qualitative research is the possible introduction of investigator bias during collection and analysis of data.26 A key finding of this study was that parents value pediatricians as an important source of oral health information but most reported receiving no or incorrect information from them.’ I even asked my own dentist and she said ‘well. largely because of a lack of oral health training. I told her that my son’s teeth were looking badly. In a study by Hilton et al. Thematic Area 3: Parental Information Seeking and Expectations of Pediatricians 83 Theme 12: Erroneous or inadequate oral health information   “I did speak to the pediatrician around 2 (years) and said ‘I’m really concerned about his teeth I don’t think he’s getting a good brushing.” (DT25) Theme 13: Parental expectations of pediatricians   “I was actually kind of angry with his pediatrician because I felt like if she had lifted his lips and looked and examined his teeth at 1 year she might have seen something that could have been addressed like 6 months earlier. and that she could not help me because she was too young to be sent to the dentist. . most said they would choose the child’s primary care provider. for example. Because of their enrollment in the ECC demonstration project and experience caring for their children with caries. We attempted to limit these qualitative research biases by using a standardized interview guide. Focusing on parents of children with caries lends unique and contextual insight into children’s oral health influences from a parental perspective. She told me she did not know the reason for it. could have influenced data collection. and also enabled us to refine the framework to include newly identified factors (eg. Our report of parental guilt was documented previously in another qualitative study. . they started turning a little bit yellow.’ So I said ‘he’s very active’ and she said ‘well then just wait. that his teeth started coming out quite early .27 Various initiatives have been implemented to enhance oral health training among medical students. perceptions of guilt and blame. Then I told the pediatrician. parents may have knowledge and insights that do not apply to other groups. triangulating our findings. his comment to me was ‘do the best you can.’ So I felt like I was looking for advice and got bad advice . only 54% of pediatricians conduct oral health examinations and counseling for more than half of their patients. Our findings confirmed some of the important domains identified in our conceptu al framework. and drawing on the expertise of a multidisciplinary research team in coding and analyzing data.31 Differences between both interviewers (gender. they were turning more and more yellow . That’s my opinion—I think they should have done a little check of the teeth at that time. Our results represent the perceptions of a small group of parents attending a dental clinic in Boston. This study has several limitations. . and the pediatrician did not pay attention. I would tell her to refer me to someone (I did not know I could go to the dentist without her reference). . the broader social context.” (DT24) caries expressed by several parents in this study was a novel finding.” (DT9)   “I noticed. . So I said ‘when do I start taking him to the dentist?’ and he said ‘wait till about 3 (years). . . and I would say. Additional strategies can also be implemented to foster consistent. . . . Providers can be trained to incorporate core concepts of family-centered care in delivering preventive dental care. ‘maybe it’s the toothpaste I am using. and practicing pediatricians. However. residents.17 when parents were asked which health provider they would choose to conduct their child’s oral health assessments at 1 year. she did not help me out. Training programs could equip medical and dental providers to address many of these factors. she did not seem to take me seriously.

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