Beliefs Regarding Development and Early Intervention Among Low-Income African American and Hispanic Mothers

This study was conducted at Johns Hopkins Medicine in Baltimore, Maryland. Study sites included 2 urban pediatric primary care clinics serving predominantly low-income African American and Hispanic families. EI referrals are generated by clinic staff at both sites. In 2015, these clinics provided pediatric primary care to more than 10 000 children 0 to 21 years old. Ninety-four percent of children served by the clinic live at or below 200% of the federal poverty level.

Given limited available evidence and the complex nature of the relationship between maternal health beliefs and help-seeking behaviors, qualitative methods were employed. In-depth interviews were conducted to allow exploration of maternal health beliefs. Purposive sampling was used to recruit African American and Hispanic mothers who were at least 18 years old, spoke English or Spanish, and were the legal guardian of a child aged 0 to 36 months with clinician-documented DD diagnosed by administering a standardized developmental screening tool. We recruited mothers with a range of experiences with using EI services: those with no experience and those with previous or current experience. Mothers of children with significant medical complications, diagnosed congenital anomalies, or diagnosed genetic disorders were excluded. The institutional review board at the Johns Hopkins School of Medicine and the research review teams at participating clinics approved the study. Informed consent was obtained for all study participants.

Eligible children scheduled for well-child visits during the study period were identified through their electronic health record. Mothers attending the well-child visit were informed about the study by their child’s pediatrician and were subsequently recruited by a member of the study team. For those choosing to participate, in-depth interviews took place either immediately after the well-child visit at the clinic or were scheduled for a later time in person or by phone. All recruitment and data collection took place during the summer and fall of 2015.

An open-ended, semistructured interview guide was created by using input from a multidisciplinary study team consisting of an EI provider, pediatricians, health services researchers, and the mother of a child with DD. Questions were focused on understanding maternal beliefs in shaping key stages of the help-seeking pathway: (1) identification of children with DD; (2) EI service appraisal; and (3) EI service use. Interviews were conducted by an experienced qualitative interviewer (D.M.M.) or trained bilingual research assistant, and they lasted ∼30 minutes. Each interview was audiotaped, translated into English (if needed), transcribed, and entered into ATLAS.ti (Scientific Software, Berlin, Germany). Members of the study team met weekly during data collection to ensure interview consistency and data quality and to incorporate new concepts into the interview guide as needed. Demographic data, including maternal age, education, country of origin, and length of time in the United States, were also collected during the interview. Data collection continued until thematic saturation was achieved and no new themes were identified.

Inductive content analysis¹⁵ was used, whereby the primary author reviewed transcripts to identify and define an initial set of codes that were entered into a preliminary codebook. Two members of the study team, with qualitative methods training, then read and independently coded each transcript and met regularly to modify the codebook as necessary. Discrepancies were resolved through consensus. This iterative process continued until no new codes or themes emerged from the data. An audit trail documented key decisions made during data collection and analysis. Members of the multidisciplinary study team and the parent consultant further reviewed emerging concepts and themes, allowing for more rigorous interpretations of the results via triangulation.¹⁶ 

Twenty-two African American and Hispanic mothers whose children had clinician-documented DD participated. Thirty-six percent were African American, 64% were Hispanic, 59% had less than a high school education, and 41% had study-eligible children who currently or had previously used EI services (Table 1). Details regarding children’s sex, age, and developmental areas of concern are presented in Table 1.

The analysis revealed 5 major themes describing the role of maternal health beliefs in shaping key stages of the help-seeking pathway for children with DD (Fig 1). The 5 major themes were: (1) “I can see” (observing other children and making comparisons); (2) “Children are different and develop in their own time” (perceiving that their child might be delayed, but not being concerned); (3) “It’s not that I don’t trust the doctor” (relying on social networks rather than the pediatrician to inform the help-seeking pathway); (4) “I got so much going on” (difficulty prioritizing EI because of competing social or financial stressors); and (5) limited and conflicting information (delaying or forgoing EI serves because of limited and conflicting information). Key differences between African American and Hispanic mothers are also described. Representative quotations for each theme are provided in Table 2.

Observations and direct comparisons of children’s development often shaped mothers’ attitudes toward development and influenced whether mothers identified DD. Mothers either perceived their child’s development as being the same as other children, “I can see that other children are doing the same as he does,” or as being different, “I can see [other kids] utter phrases of 2 or 3 words asking for something, and my son can’t do that yet.”

The belief that children are different and develop in their own time influenced whether mothers identified DD: “the truth is, there are some [children] that develop well and others that don’t.” Few mothers identified their child’s development as delayed. The belief that children develop in their own time also influenced EI appraisals. One mother did not perceive her son as having a DD or needing EI services because her nephew (who did not receive EI) “took a long time to walk but then started talking instead.”

Social networks played a much stronger role than pediatricians in influencing maternal beliefs. Regarding development and the identification of DD, 1 mother stated, “[my friends] tell me [girls] develop quicker than, whatever, mature quicker than [boys].” When mothers recalled conversations with the pediatrician, these conversations often occurred within the context of mothers’ social networks: “it’s not that I didn’t trust what the doctor said [that her son’s development was delayed], because I did. But hearing it again from someone that I put my trust in to take care of my son, it kinda made me feel a bit more confident.” Maternal social networks also influenced EI appraisals: “I’ve heard [from friends] that those therapies are very helpful.” Few mothers recalled receiving information about accessing or using EI from their child’s pediatrician: “In the beginning, the doctor, she didn’t give me as much details. She just said, ‘there’s a program called Infants and Toddlers.’ At that point I had no idea what it entailed at all.” Unless mothers had heard of EI from a close friend or family member, they typically did not use these services.

Competing social and financial stressors often prevented mothers from prioritizing EI services for their child: “just sometimes, I got so much going on, it’s hard keeping it all straight.” Mothers also had difficulty using EI services as a result of these stressors: “I think I had [the evaluation] rescheduled and missed it or something. There was something that just came up.”

Limited and conflicting information about EI referral and eligibility processes often resulted in delayed or forgone services. One mother, with limited understanding of the EI referral process, described delays in scheduling her son’s initial evaluation: “there were about 8 appointments…they cancelled them. So for about a year and a half, there was nothing.” Another mother had her son evaluated for EI services, but did not know whether her son was eligible for or needed services: “[EI] said that we should wait a bit more [to initiate services] because it appears that, yes, he is going to walk. But the pediatrician said that she’s going to make another referral for him to be reevaluated [because he needs services].”

Maternal beliefs were similar across stages of the help-seeking pathway, with 1 notable exception regarding EI use. A few Hispanic mothers agreed to EI services despite not identifying their child as delayed nor being concerned about their child’s development. Although they did not necessarily agree with the pediatrician, they went along with his or her recommendation because “whatever the doctor says is fine.” In contrast, some African American mothers went along with EI services for fear of judgment and “to avoid trouble.” These mothers also reported feeling as though their opinions did not matter: “sometimes I feel like what I say don’t really matter. Like the doctor’s just gonna do whatever.”

We conducted in-depth interviews with low-income African American and Hispanic mothers to better understand the role of health beliefs in shaping maternal decisions regarding key stages of the help-seeking pathway for children with DD and to explore differences between African American and Hispanic mothers. With our findings, we highlight the important role maternal health beliefs (particularly regarding DD and EI), social networks, and external stressors play in influencing early identification and intervention for children with DD. The following discussion reveals relationships between each theme and key stages of the help-seeking pathway and provides potential solutions for providing family-centered and developmentally-focused anticipatory guidance for children with DD.

The first theme, I can see, suggests that mothers rely on observations to compare their child with other children and to identify delays. Glascoe and MacLean speculated that the task of comparing or contrasting child development is easier and more natural than identifying, for example, the ages at which children are expected to achieve milestones.¹⁷ Mothers in our study who did not perceive their child’s development as being delayed (despite clinician-documented delays) were unlikely to value or use EI services. The use of video- or computer-assisted developmental screening tools during the well-child visit, or completion of screening tools at home, may provide parents with an opportunity to visually compare their child’s development with that of age- and culturally-appropriate peers. The Centers for Disease Control and Prevention recently published “Milestones in Action,” a free library of photos and videos of developmental milestones to supplement their “Learn the Signs. Act Early” campaign.¹⁸ Use of these pictures and videos, in conjunction with standardized developmental screening tools, may support parents in making comparisons of their child’s development, increasing understanding of developmental milestones, and improving early identification of DDs.

The second theme, children are different and develop in their own time, suggests that mothers may identify DD but may not necessarily perceive a problem or a need for EI services. These findings align with those of Jimenez et al¹⁹, suggesting that mothers who are ambivalent about DD may view the use of community services, including EI services, as an imposition. Use of standardized screening tools and parent decision aids to elicit mothers’ developmental expectations or concerns during well-child visits, while clearly communicating one’s own expectations and concerns, may help to engage mothers as equal partners in the decision-making process.^20,21 A recent randomized trial assessing the impact of a 3-minute video decision aid on parents’ attitudes regarding DD and appraisals of EI demonstrated favorable changes in these areas.²² 

The third theme, it’s not that I don’t trust the doctor, appeared consistently across all stages of the help-seeking pathway. Mothers in our study (as with parents across cultures)^23,24 relied on social networks for advice about their child’s care and help-seeking behaviors. Surprisingly, few mothers in our study reported having meaningful conversations with their child’s pediatrician about developmental concerns or EI services, despite such documentation in the child’s electronic health record. These findings highlight the importance of engaging mothers and influential family members or friends in the decision-making process. It might be useful for clinicians to talk with parents about their social networks, and the role networks play in shaping help-seeking behaviors. To enhance knowledge and awareness of developmental milestones and EI services in the broader community, pediatricians may consider participating in local media campaigns and outreach activities in diverse markets,²⁵ or they may consider promoting community-based parenting classes.

The fourth theme, I got so much going on, reveals the difficulty many families experience in prioritizing or using EI services. Children in these families are likely to continue facing significant challenges in getting their developmental needs met until families are able to achieve greater social and financial stability. Clinicians are encouraged to discuss families’ socioeconomic environment and to ask about, listen to, and support families’ experiences.^4,26 For some children, the current system of primary care may not adequately address their families’ complex socioeconomic needs.²⁷ Evidence-based models, such as Health Leads,^28,29 Healthy Steps,^30,31 or Safe Environment for Every Kid³² help pediatricians address these needs, thereby empowering families to use EI services.

The last theme, limited and conflicting information, highlights the challenge that many families face in accessing and using EI services, even when they identify their child as having a DD and perceive a need for EI services. To increase coordination between pediatric primary care and EI systems, many state and professional organizations have launched educational initiatives targeted for pediatricians and EI clinicians.^33,34 Use of information technology (eg, shared electronic health records and patient Web portals)³⁵ or brief referral plans and checklists³⁶ further enhances communication between pediatricians and EI clinicians. Moreover, family navigators can facilitate EI use by providing families emotional support, family-centered and developmentally-focused anticipatory guidance, and logistical assistance.³⁷ 

Interestingly, differences between African American and Hispanic mothers emerged during conversations around service use. Both groups of mothers reported feeling pressured into using services. African American mothers tended to go along with services to avoid trouble, whereas Hispanic mothers tended to go along with services as a result of traditional social hierarchies.²³ Regardless of the source of pressure, the end result was a process from which mothers were further disengaged. With these findings, we underscore the importance of eliciting mothers’ concerns and expectations early in the help-seeking pathway and of engaging them as equal partners throughout the decision-making process.

Our study has several limitations. First, we did not capture the views of low-income African American or Hispanic mothers whose children do not receive routine well-child visits. However, it is reasonable to expect that mothers whose children do not receive pediatric primary care are at least as likely to rely on social networks for information related to development, DD, and EI and to experience challenges using EI services. Second, because this study was conducted in a single academic institution located in an urban setting, the perspectives captured may not reflect those of mothers whose children receive primary care through community-based practices or whose children are served by different EI systems. Third, we conducted interviews with low-income African American and Hispanic mothers; although we achieved thematic saturation with our sample, beliefs may differ in other racial, ethnic, and socioeconomic groups. Finally, we explored the role of maternal health beliefs in shaping help-seeking behaviors for children with DD. Future studies should seek to obtain the views of fathers and social networks.

In this study, we explored the ways in which maternal health beliefs influence key stages of the help-seeking pathway for children with DD. Our findings add to a growing body of literature in which authors suggest that completion of a developmental screener and the subsequent referral of a child to EI services do not guarantee that a child with DD will use these services. Understanding maternal health beliefs and expectations regarding DD and EI, acknowledging the influence of social networks on the help-seeking pathway, and helping to address social and financial stressors are critical to ensuring that children with DD are identified and that they access needed services. Without such family-centered anticipatory guidance, disparities in early identification and intervention will likely persist.

 
• DD

  developmental delay

 
• EI

  early intervention

We thank the mothers who participated in this study and the pediatricians who supported this project. We also thank Doris Valenzuela-Araujo and Dr Kristin Mmari for their contributions.