Levels of Evidence Table

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Maternal and Child Health Journal (2020) 24:651–659 https://doi.org/10.1007/s10995-019-02853-x

Community‑Engaged Research to Translate Developmental Screening and Referral Processes into Locally‑Relevant, Family‑Centered Language

Dawn Magnusson1  · Natalie J. Murphy1 · Griselda Peña‑Jackson2

Published online: 16 December 2019 © Springer Science+Business Media, LLC, part of Springer Nature 2019

Abstract Objectives This project employed Boot Camp Translation (BCT) to engage community stakeholders in the translation of developmental screening guidelines and early intervention service recommendations into locally-relevant, family-centered messaging. Methods A subject matter expert provided an overview of development, developmental delay, developmental screening and referral processes, and early intervention to BCT participants. BCT participants and facilitators met in-person and via teleconferencing over the course of 12 months to co-develop locally-relevant messages and materials. Results BCT participants focused on defining development, developmental delay, and early intervention, rather than describ- ing developmental screening and referral processes. They proposed several dissemination strategies, and focused much of their effort on the creation of an informational booklet designed to educate and empower caregivers. Conclusions for Practice BCT is a useful approach for translating developmental screening guidelines and early intervention recommendations into locally-relevant, family-centered messaging.

Keywords Community-based participatory research · Child development · Developmental delay · Early intervention

Significance

One in four children in the United States is at risk for expe- riencing developmental delay. Significant racial, ethnic, and socioeconomic disparities exist in the early identification of children with developmental delay and their use of early intervention services. For many parents of children with developmental delay, evidence-based developmental screen- ing guidelines and early intervention recommendations use concepts and language that do not necessarily align with their beliefs, values and priorities. This project employed a community-based participatory research methodology to translate developmental screening guidelines and early

intervention service recommendations into locally-relevant, family-centered messaging.

Introduction

One in four children in the United States is at risk for expe- riencing developmental delay (CAHMI 2016), a condition in which children do not achieve timely motor, language, cognitive, behavioral or adaptive skills. The first three years of a child’s life are critical for the early identification of developmental delay and the initiation of early intervention services. Evidence-based developmental screening guide- lines, such as those put forth by the American Academy of Pediatrics (AAP 2006), are intended to support the early identification of children with developmental delay, while Part C of the Individuals with Disabilities Education Act (IDEA) authorizes states to provide comprehensive early intervention services for infants and toddlers with develop- mental delay. Despite the existence of such guidelines and recommendations, their adoption and implementation have been inconsistent (King et al. 2010; Hirai et al. 2018). Fewer

* Dawn Magnusson dawn.magnusson@ucdenver.edu

1 Physical Therapy Program, Department of Physical Medicine and Rehabilitation, University of Colorado School of Medicine, Aurora, CO 80045, USA

2 2040 Partners for Health, Aurora, CO 80010, USA

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than 25% of children likely eligible for early intervention services receive them under Part C, IDEA (Rosenberg et al. 2013), and significant racial, ethnic, and socioeconomic dis- parities exist in both early identification and intervention for children with developmental delay (Bailey et al. 2004; Mandell et al. 2009; Feinberg et al. 2011; McManus et al. 2013; Zuckerman et al. 2013; Knuti Rodrigues et al. 2016; Magnusson et al. 2016; Magnusson and Mistry 2016).

Efforts to improve the early identification of children with developmental delay have focused on improving the capacity for child and healthcare professionals to conduct developmental screenings and make appropriate referrals to early intervention in accordance with AAP guidelines (Association of Maternal and Child Health Programs 2014). As a result, developmental screening rates have improved (CAHMI 2016), however, post-developmental screening processes (early intervention referral and use) remain highly variable (Earls et al. 2009; King et al. 2010) while dispari- ties persist. Additional attempts to integrate screening and referral alerts within the electronic health record have shown potential (Carroll et al. 2014), but a lack of prioritization and data integration limits large-scale implementation.

Actions, processes, and decisions related to early iden- tification and intervention are informed by a multitude of clinic-level factors including resource availability, existing decision support, staffing cohesion, time, and reimburse- ment, and by clinician-level factors such as beliefs regard- ing the utility of standardized screening tools and the effec- tiveness of early intervention (Sices et al. 2003; Sand et al. 2005; Silverstein et al. 2006; King et al. 2010). They are also informed by a host of child- and family-level factors includ- ing parental knowledge and beliefs, family values and priori- ties, social and community networks, and various physical and emotional stressors (Jimenez et al. 2014; Magnusson et al. 2017; Zuckerman et al. 2018).

Relatively little attention has been paid to understanding parental beliefs, values, and priorities as they relate to devel- opment, developmental delay, developmental screening pro- cesses, and early intervention services. For many families, especially traditionally underserved and marginalized fami- lies, evidence-based developmental screening guidelines and early intervention service recommendations presented dur- ing the well-child visit likely use concepts and language that do not necessarily resonate with parents (Magnusson et al. 2017; Zuckerman et al. 2018). As a result, caregivers may be less likely to integrate this information with their own beliefs, values, and priorities regarding early identification and intervention. Stakeholder-engaged translation of medical guidelines and service recommendations has the potential of facilitating more meaningful conversations between car- egivers and clinicians (Norman et al. 2013; Westfall et al. 2016), and improving early identification and intervention for children with developmental delay. The objective of this

project was to translate developmental screening guidelines and early intervention service recommendations into locally- relevant, family-centered messaging. This paper describes the community-based participatory research approach used to achieve this objective, key outcomes of this approach, and participant reflections regarding the process.

Methods

Boot Camp Translation

Boot Camp Translation (BCT) is a robust, community-based participatory research approach developed by the High Plains Research Network Community Advisory Board to engage community members in the translation of evidence- based medical guidelines and clinical recommendations into locally- and culturally-relevant messaging (Norman et al. 2013; Westfall et al. 2016). The goal of BCT is to foster better understanding of health conditions and related guidelines among community members, and to co-develop messages and materials that promote discussions of the con- dition by community members with healthcare profession- als. Participants of the BCT process strive to answer three questions: “What do we want our message to say?”; “Who needs to hear our message?”; and “How do we disseminate that message to our community?” Focusing on the what, who, and how guides participants in crafting a message that better engages the community, and developing a dissemina- tion plan that best delivers the message to key community stakeholders. A complete description of the BCT process, participants and recruitment, and data collection and analy- sis is informed by the Consolidated Criteria for Reporting Qualitative Research (Tong et al. 2007).

Process

The approximately 12-month BCT process (Table 1) began with a full-day, in-person kickoff meeting (Table 1). The agenda for this meeting included: (1) an overview of the BCT process, (2) a discussion of meeting guidelines and expectations, (3) an expert presentation followed by a brief question and answer session, (4) solicitation of partici- pants’ initial reaction to the expert presentation, and (5) a preliminary brainstorming session. The expert presenta- tion was intentionally presented at an advanced level so that participants were able to hear and process informa- tion shared among healthcare professionals, and engage in conversations equipped with the language used by health- care processionals regarding the medical condition and related clinical recommendations. Our expert, a pediatric physical therapist and health services researcher, defined

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concepts like development, developmental delay, and early intervention, provided an overview of the AAP develop- mental screening algorithm, explained standard develop- mental screening tools and scoring criteria, and described the process for referring children to and utilizing early intervention services. Participant engagement and under- standing were encouraged using active learning strategies including small group discussion, problem-based learning, and teach-back strategies. Following this initial kick-off meeting, participants contributed to a series of 30-min conference calls and shorter (3.5 h) in-person meetings to refine the message (what), specify the target audience (who), and develop a dissemination plan (how). The BCT process formally concluded when the group answered each what-who-how question. During the final meeting, partici- pants had the opportunity to celebrate their work and com- mitment to the project, discuss next steps, and share their reflections regarding BCT. Meetings were co-facilitated by GPJ and DM, experienced community-based research- ers and group facilitators. GPJ, the executive director of a community-campus partnering non-profit, has long- standing relationships with members of the community. DM, a researcher and pediatric physical therapist, was relatively new to the community at the commencement of this project. All in-person meetings were held at the community-campus partnering non-profit, and attended by BCT participants and study team members.

Participants and Recruitment

Members of the community-campus partnering non-profit, well-connected in the surrounding community, helped identify and recruit individuals. Neighborhoods within

the non-profit’s catchment area are characterized as hav- ing high social vulnerability (Centers for Disease Control and Prevention 2018c) and high socioeconomic deprivation (Kind and Buckingham 2018), and they include many of the children who are least likely to have their delays identi- fied and to receive early intervention services. Participants were recruited via community networking breakfasts and the study team’s vast network of community connections. Healthcare professionals were recruited via word-of-mouth and distribution of informational flyers to clinics serving children and families in the study’s footprint. Eligible par- ticipants were adults who served as the primary caregiver or early childhood provider for young children with or at risk for developmental delay. The BCT process involved a convenience sample of 12 participants (of 14 screened), and included parents, grandparents, and early childhood service providers. Each participant received $300 in grocery store gift cards in return for their contributions to this BCT. This project was conducted in accordance with prevailing ethical principles and approved by the Colorado Multiple Institu- tional Review Board. Participants provided informed con- sent prior to their inclusion in the BCT process.

Data Collection and Analysis

The study team used a process standard to BCT for collect- ing and analyzing the data. Following each in-person meet- ing or conference call, one study team member compiled raw notes from all data collected during the event (e.g., field notes, hand-written facilitator and participant comments, and flip-chart notes). These raw notes reflected group dis- cussions as they occurred, and included quotes from partici- pants. Members of the study team and participants of BCT independently reviewed these notes to ensure accuracy. The

Table 1 Event, venue, length, and agenda for BCT participant meetings

Event Venue Length Agenda

In-person kick-off (December, 2017)

2040 Partners for Health (commu- nity partner’s shared space)

6.5 h Introductions Discussion of BCT ground rules Expert presentation Question and answer session Reactions to presentation Initial brainstorming session around what-who-how

Conference calls (× 3) Remote 30 min each Message refinement (what-who-how) In-Person Meetings #1 2040 Partners for Health 3.5 h each Message refinement #2 2040 Partners for Health Product design #3 2040 Partners for Health Product refinement In-Person Conclusion (December 2018)

Home of BCT facilitator 2 h Celebration of final product and accomplishments Reflection on BCT Discussion of future directions

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study team employed content analysis to identify major or recurring concepts, and determine whether the group had reached consensus around each focal question (what-who- how). A summary of the event’s objectives, key themes and concepts, and next steps were distributed to participants prior to the next event. The results presented below repre- sent the compilation of themes and concepts across all BCT events.

Results

BCT Participants

Fourteen individuals expressed interest in the project, and 12 women committed to the BCT process. Sixty-seven per- cent of participants were Latina, 17% were African Ameri- can, and 17% were non-Hispanic white. These women had diverse connections to children and families, including working as mental health specialists, home visitors, nurses, teachers, and health care professionals, and raising young children or grandchildren of their own. Approximately 6 months into the project, two participants left the group secondary to moving out of the area. The remaining ten participants attended a majority of teleconferences and in- person meetings.

Key Outcomes

Initial Reactions to the Expert Presentation

BCT participants were asked to share their initial reactions to the expert presentation: What stuck out to you? What, if any- thing, seemed especially important? What, if anything, did you learn? Participants agreed that developmental screening and referral processes are extremely complex, with many gaps through which children can fall. As one participant stated, “[the process] is like a chain of islands with children getting lost in between”. Participants also recognized the importance of empowering parents and caregivers to engage in conversations with child- and health-care professionals, and to advocate on behalf of their children. However, as one participant pointed out, “parents are asked to fill out a host of forms [during the well-child visit] they may not under- stand”. As a result they may be less likely to engage with this material. Participants also wondered about the role that trust and bias (implicit or explicit) play in allowing meaningful conversations to occur between caregivers and professionals. Finally, participants discussed the sensitive nature of devel- opmental delay in their community. “Parents are concerned about labeling their children [as having delayed develop- ment], and may be left feeling embarrassed and ashamed”. Focusing on what’s wrong with the child is likely to further

elevate parents’ feelings of guilt and incompetence. This idea led to a conversation about the importance of shift- ing the narrative from one that is problem-oriented (e.g., your child is delayed…here are services and supports that can help [read:fix] her) to one that is more strengths-based and achievement-oriented (e.g., we both want your child to achieve his full potential…here are services and supports that can help get him there).

Translation of Developmental Screening Guidelines and Early Intervention Service Recommendations

WHAT BCT participants were tasked with translating evi- dence-based developmental screening guidelines and early intervention service recommendations into locally-relevant, family-centered messages and materials that encourage meaningful conversations between caregivers and early childhood providers. Table 2 summarizes key concepts for each focal question (what-who-how). Rather than focus on developmental screening and early intervention referral processes as we hypothesized, BCT participants focused on defining development, developmental delay, and early intervention in ways that reflect their community’s beliefs, values, and priorities. Prior to the expert presentation, many of the BCT participants reported understanding development to mean height and weight, not motor, language, cognitive, behavioral or adaptive skills. As a result, BCT participants felt it necessary to first define development using concepts that are meaningful to parents and community members while simultaneously reflecting the medical perspective. They conceptualized development as a “journey for grow- ing up happy and healthy”, with many differing paths for connecting, moving, talking, and learning. BCT participants viewed the acquisition of developmental milestones as “an important aspect of children’s health and happiness” but they were not particularly fond of the term developmental delay. Use of “delay” seems to infer that something is wrong with the child, that their development is stuck. As one participant pointed out, “these children are not broken—they are who they are.” Terms like “pauses” or “slow-downs” were recom- mended in place of delay. BCT participants expressed the importance of embracing children’s individuality, recogniz- ing that each child takes his or her own unique path in life, and understanding that many children experience pauses or slow-downs along the way. In their view, all children require love, nurturing, and support along their developmental jour- ney, and early intervention simply represents another support that is available to young children and their families.

As alluded to previously, developmental delay is a very sensitive topic for many parents. To help reduce the stigma attached to missed milestones, BCT participants felt it was important to highlight the fact that one in four children is at risk of experiencing developmental delay. One participant

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shared, “it’s important for families to know they are not alone”.

The last group of concepts related to the message’s con- tent (i.e., what) centered around taking action. “Earlier is better when it comes to promoting children’s development, but it is never too late to act”. Because many community members are unaware of the developmental services and supports that are available in their community, BCT par- ticipants wanted to highlight specific resources that parents and caregivers can leverage to promote child development. Actionable steps included talking with the child’s health care provider, contacting early intervention, and obtaining addi- tional information from local, state, and federal organiza- tions [e.g., CDC’s “Learn the Signs. Act Early” (Centers for Disease Control and Prevention 2018a, b) and the Office of Early Childhood’s “Birth to 5. Watch Me Thrive!” (United

States Department of Health and Human Services Office of the Administration of Children and Families 2017)].

WHO BCT participants viewed parents and primary car- egivers as key recipients of this messaging. As one partici- pant disclosed, “It’s hard when doctors ask, ‘so what other questions do you have?’ Parents don’t know what they don’t know, and education is key.” They recognized the value of disseminating messages and materials among extended fam- ily members, friends, daycare providers, community leaders, and other community members, but felt that this particu- lar project should focus on parents and primary caregivers, given their responsibility in nurturing and advocating for their children.

HOW In response to the question, “How do we dis- seminate our message to the community”, participants expressed the need for information to be presented in a way that is more eye-catching and engaging than standard

Table 2 Boot camp translation key concepts

Question Participant ideas

What do we want our message to say? Development, developmental delay, and early intervention • Development includes how your child connects, moves, talks, and learns • Development is an important aspect of your child’s health and happiness • Development is a journey, and each child’s path is unique • Children develop in their own time • Delays are like brief pauses or slow-downs in their journey • All children require services and supports to achieve their full potential—early intervention is

just another service/support that is available to children and families Stigma • You may feel ashamed or embarrassed, but you’re not alone • 1 in 4 children experience developmental delay (many children experience pauses or slow-

downs) Action • Parents and caregivers are experts in their child’s development • There are steps you (parents and caregivers) can take to promote your child’s development—

talk with your child’s doctor, contact early intervention, get more information from the CDC and Learn the Signs Act Early

• Resources exist in your community • Earlier is better when it comes to identifying and exploring community services and supports,

but it’s never too late to act Who needs to hear our message? • Parents and primary caregivers (key recipient of this BCT)

• Community members (extended family members, friends, childcare providers, community leaders, community members, and healthcare providers)

• Early childhood providers How do we disseminate our message? (the

final product produced from this BCT is in bold)

• Interactive resource that engages caregivers and encourages action • Informational sheet attached to developmental screening tool • Developmental chart or tracking sheet—similar to vaccine schedule—that parents and car-

egivers bring to each well-child visit • Recipes for development—developmental milestones and calls to action presented as recipe

cards and contained in a “recipe” box • Brief video about child development that plays in the waiting room • Phone calls and/or text messages reminding parents and caregivers about next steps in the

screening and referral process • Visuals: children as growing flowers that require love and nurturing; development as a jour-

ney with different pathways that lead to health and happiness

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informational flyers or tri-folds. They came up with sev- eral options (Table 2), and in the end settled on creating an informational, accordion-style booklet that (1) defines development, developmental delay, and early intervention using family-centered concepts, (2) reduces stigma, and (3) encourages action (Fig. 1).

Participant Reflections

During the final in-person meeting, participants had the opportunity to reflect on their BCT experiences, and consider challenges and strengths of this approach. Participants appreciated the knowledge gained through BCT, and reported sharing this knowledge with friends, family members, and clients. They reported seeing the potential of this work in benefiting not only children and their families, but their broader community as well. Many respondents reported feeling a sense of accomplishment, and feeling “proud to have come so far” since the kick- off meeting to “produce something for the community”. Finally, a few participants reported an increased sense of belonging and community cohesion as a result of partici- pating in BCT. One participant, whose nephew experi- ences delayed development, reported no longer feeling guilty or ashamed about his condition and knows that “[she is] not alone”. Another participant reported feeling empowered, knowing “there are many within [her] com- munity who care about this issue”.

Discussion

This project sought to translate developmental screening guidelines and early intervention service recommenda- tions into locally-relevant, family-centered messaging as a means of improving early identification and intervention for children with developmental delay. We conducted a well-established CBPR methodology that sustained com- munity engagement over the course of twelve months and yielded valuable insights into how we might better engage parents and caregivers of children with developmental delay in meaningful conversations about development, develop- mental delay, and early intervention. Participants answered three important questions that are central to BCT: “What do we want our message to say?”; “Who needs to hear our message?”; and “How do we disseminate that message to our community?”.

What Do We Want Our Message to Say?

We expected BCT participants to focus on translating the technical aspects of developmental screening and refer- ral processes, but from their perspective such an endeavor would prove insufficient in engaging parents in meaningful conversations about child development and related services and supports. Instead, participants recognized the impor- tance of first defining terms like development, developmen- tal delay, and early intervention in ways that reflect their community’s beliefs, values, and priorities. These findings add to a growing literature emphasizing the role of caregiver beliefs in informing key decisions related to early identifica- tion and intervention (Mandell and Novak 2005; Jimenez

Fig. 1 Boot camp translation product: interactive accordion booklet (the top image represents the front of the booklet while the bottom image represents the back of the booklet)

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et al. 2012; Zuckerman et al. 2014, 2018; Magnusson and Mistry 2016; Magnusson et al. 2017). Early childhood pro- viders cannot assume that parents and caregivers conceptual- ize development and developmental delay in the same way. In talking about development with parents and caregivers, providers should explain that development encompasses more than a child’s height and weight: development includes how a child talks, moves, plays and connects with others, and growth in these areas is critical for a child’s future health and well-being. The Centers for Disease Control and Preven- tion offers an online course and a variety of resources to help providers talk with parents about their child’s development and related developmental concerns in culturally-sensitive ways (Centers for Disease Control and Prevention 2018d).

Given the guilt and shame many parents and caregivers experience when they suspect or learn their child’s devel- opment is delayed, BCT participants feel it is important for providers to focus on a child’s strengths and potential, rather than their challenges and limitations. Despite ample evidence supporting the benefits of strengths-based conver- sations (National Academies 2016) such methods are not routinely employed by early childhood providers. Additional work is needed to ensure that early childhood providers receive adequate training around how to engage children and families using strengths-based, family-centered approaches.

Who Needs to Hear Our Message?

Parents, especially low-income, minority parents, often feel disengaged from and overwhelmed by information and deci- sions regarding early identification and intervention (Pachter and Dworkin 1997; Jimenez et al. 2012, 2013, 2014; Zuck- erman et al. 2014, 2018; Magnusson et al. 2017). Evidence suggests that patients with higher levels of activation and empowerment believe they have an important role to play in managing their condition, engaging in shared decisions with providers, and maintaining their health (Hibbard et al. 2004; Lipstein et al. 2012; Butler et al. 2015). By addressing gaps in expectations, knowledge, attitudes, and confidence, BCT participants believe parents will be better positioned to make informed decisions that reflect their family’s values, priorities, and preferences.

How Do We Disseminate Our Message to the Community?

We recognize that much of the content developed during the BCT process can be found elsewhere, and it is worth noting that participants had access to resources like “Learn the Signs. Act Early” (Centers for Disease Control and Prevention 2018a, b) and “Birth to 5. Watch Me Thrive!” (United States Department of Health and Human Services Office of the Administration of Children and Families 2017).

Participants felt that information needed to be more inter- active and engaging than standard flyers or tri-folds, and accessible in a single resource. A host of products were con- sidered (Table 2), and in the end, participants settled on an accordion-style informational booklet that could be widely disseminated across diverse settings. The study team is cur- rently sharing the booklet with community partners to get feedback regarding its content and readability, and to gauge interest in using the booklet across diverse early childhood settings (e.g., pediatric primary care, nurse home visiting programs, early intervention, and family resource centers). Next steps will include assessing the booklet’s feasibility and acceptability, and evaluating its effectiveness in engag- ing parents in meaningful conversations about their child’s development and reducing disparities in early identification and intervention. As described in Table 2, BCT participants also considered the creation of an informational video and the development of a messaging system to increase aware- ness regarding developmental delay and early intervention. Recent evidence suggests these formats hold potential for improving early identification and intervention for young children with developmental delay (Jimenez et al. 2017; Nel- son et al. 2019). Future efforts in this area will be guided by a newly formed, community-based research steering com- mittee. Members will be instrumental in identifying research priorities and devising additional community-based solu- tions. They have already expressed interest in finding ways to amplify their message in the community through strategic advertising and marketing.

This study has several limitations to consider. First, the number of community members contributing to this effort was relatively small, and their views may not reflect the beliefs, values, and priorities of the broader community. Moreover, participants were limited to women, and impor- tant perspectives of men and fathers may have been over- looked. However, these participants were recruited given their experience working with and commitment to support- ing children and families. Second, this study was limited to community members with connections to a very specific footprint in Aurora, Colorado. Nevertheless, key findings align with existing literature, and the approach described has been replicated in diverse communities. Third, BCT can be a lengthy process, but in giving control to the participants, they were able to take ownership of the project and main- tain their enthusiasm throughout the 12-month process. The identification of multiple target audiences (who) and dis- semination strategies (how) reflect the magnitude and com- plexity of the issue, and provided the impetus for many of the participants to remain engaged beyond the formal BCT process and serve on the newly-formed community-based research steering committee. Finally, lack of continued fund- ing risks disrupting the group’s momentum and enthusiasm (Kwan et al. 2017). Fortunately, we were able to secure

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additional funding to continue working alongside our com- munity members to produce, implement, and evaluate the tool, pursue other dissemination strategies, and devise addi- tional community-based solutions.

Conclusion

BCT is a useful approach for translating medical informa- tion and related clinical guidelines into locally-relevant, family-centered messaging. Insights from this project pro- vided a clearer picture of the informational needs of parents, caregivers, and community members within the context of their beliefs, values, and priorities. In the present case, we successfully engaged community members in the translation of developmental screening guidelines and early interven- tion service recommendations, and the creation of a family- friendly, informational booklet. Although key concepts that emerged from this BCT align with existing materials, the interactive format of the booklet is expected to enhance parent, caregiver and community member engagement with the material, and yield more meaningful conversations with child- and health-care professionals.

References

American Academy of Pediatrics. (2006). Identifying infants and young children with developmental disorders in the medical home: An algorithm for developmental surveillance and screen- ing. Pediatrics, 118(1), 405–420.

Association of Maternal and Child Health Programs. (2014). Envi- ronmental scan: State strategies and initiatives to improve devel- opmental and autism screening and early identification systems. Washington, DC: Association of Maternal and Child Health Programs.

Bailey, D. B., Jr., Hebbeler, K., Scarborough, A., Spiker, D., & Mallik, S. (2004). First experiences with early intervention: A national perspective. Pediatrics, 113(4), 887–896.

Butler, A. M., Weller, B., & Titus, C. (2015). Relationships of shared decision making with parental perceptions of child mental health functioning and care. Administration and Policy in Mental Health and Mental Health Services Research, 42(6), 767–774.

Carroll, A. E., Bauer, N. S., Dugan, T. M., Anand, V., Saha, C., & Downs, S. M. (2014). Use of a computerized decision aid for developmental surveillance and screening: A randomized clinical trial. JAMA Pediatrics, 168(9), 815–821.

Centers for Disease Control and Prevention. (2018a). Learn the Signs. Act Early. Retrieved January 1, 2018, from https ://www.cdc.gov/ ncbdd d/actea rly/.

Centers for Disease Control and Prevention. (2018b). Milestones in Action. Retrieved February 2, 2018, from https ://www.cdc.gov/ ncbdd d/actea rly/miles tones /miles tones -in-actio n.html.

Centers for Disease Control and Prevention. (2018c). The Social Vul- nerability Index. Retrieved February 1, 2018, from https ://svi.cdc. gov/.

Centers for Disease Control and Prevention. (2018d). Watch Me Train- ing Page. Retrieved February 1, 2018, from https ://www.cdc.gov/ ncbdd d/watch metra ining /.

Child Adolescent Health Measurement Initiative. (2016). Data Resource Center for Child and Adolescent Health. 2016 National Survey of Children’s Health (NSCH) data query. Retrieved from February 6, 2017, https ://www.child healt hdata .org.

Earls, M. F., Andrews, J. E., & Hay, S. S. (2009). A longitudinal study of developmental and behavioral screening and referral in North Carolina’s Assuring Better Child Health and Develop- ment participating practices. Clinical Pediatrics (Phila), 48(8), 824–833.

Feinberg, E., Silverstein, M., Donahue, S., & Bliss, R. (2011). The impact of race on participation in part C early intervention ser- vices. The Journal of Developmental and Behavioral Pediatrics, 32(4), 284–291.

Hibbard, J. H., Stockard, J., Mahoney, E. R., & Tusler, M. (2004). Development of the patient activation measure (PAM): Conceptu- alizing and measuring activation inpatients and consumers. Health Services Research, 39(4p1), 1005–1026.

Hirai, A. H., Kogan, M. D., Kandasamy, V., Reuland, C., & Bethell, C. (2018). Prevalence and variation of developmental screening and surveillance in early childhood. JAMA Pediatrics, 172(9), 857–866.

Jimenez, M., Barg, F., Guevara, J., Gerdes, M., Fiks, A. (2013). The impact of parental health literacy on the early intervention refer- ral process. Journal of Health Care Poor Underserved, 24(3), 1053–1062

Jimenez, M. E., Barg, F. K., Guevara, J. P., Gerdes, M., & Fiks, A. G. (2012). Barriers to evaluation for early intervention services: Parent and early intervention employee perspectives. Academic Pediatrics, 12(6), 551–557.

Jimenez, M. E., DuRivage, N. E., Bezpalko, O., Suh, A., Wade, R., Blum, N. J., et al. (2017). A pilot randomized trial of a video patient decision aid to facilitate early intervention referrals from primary care. Clinical Pediatrics, 56(3), 268–277.

Jimenez, M. E., Fiks, A. G., Shah, L. R., Gerdes, M., Ni, A. Y., Pati, S., et al. (2014). Factors associated with early intervention referral and evaluation: a mixed methods analysis. Academic Pediatrics, 14(3), 315–323.

Kind, A. J. H., & Buckingham, W. R. (2018). Making neighborhood- disadvantage metrics accessible—the neighborhood Atlas. The New England Journal of Medicine, 378(26), 2456–2458.

King, T. M., Tandon, S. D., Macias, M. M., Healy, J. A., Duncan, P. M., Swigonski, N. L., et al. (2010). Implementing developmental screening and referrals: Lessons learned from a national project. Pediatrics, 125(2), 350–360.

Knuti Rodrigues, K., Hambidge, S. J., Dickinson, M., Richardson, D. B., & Davidson, A. J. (2016). Developmental screening disparities for languages other than English and Spanish. Academic Pediat- rics, 16(7), 653–659.

Kwan, B. M., Jortberg, B., Warman, M. K., Kane, I., Wearner, R., Koren, R., et al. (2017). Stakeholder engagement in diabetes self-management: Patient preference for peer support and other insights. Family Practice, 34(3), 358–363.

Lipstein, E. A., Brinkman, W. B., & Britto, M. T. (2012). What is known about parents’ treatment decisions? A narrative review of pediatric decision making. Medical Decision Making, 32(2), 246–258.

Magnusson, D., Palta, M., McManus, B., Benedict, R. E., & Durkin, M. S. (2016). Capturing unmet therapy need among young children with developmental delay using national survey data. Academic Pediatrics, 16(2), 145–153.

Magnusson, D., Minkovitz, C., Kuhlthau, K., Caballero, T., & Mistry, K. (2017). Beliefs regarding development and early intervention among low-income African American and Hispanic Mothers. Pediatrics, 140(5), e20172059.

659Maternal and Child Health Journal (2020) 24:651–659

1 3

Magnusson, D., & Mistry, K. (2016). Racial and ethnic disparities in unmet need for pediatric therapy services: The role of family- centered care. Academic Pediatrics, 17(1), 27–33.

Mandell, D. S., & Novak, M. (2005). The role of culture in families’ treatment decisions for children with autism spectrum disorders. Mental Retardation and Developmental Disabilities Research Reviews, 11(2), 110–115.

Mandell, D. S., Wiggins, L. D., Carpenter, L. A., Daniels, J., DiGui- seppi, C., Durkin, M. S., et al. (2009). Racial/ethnic disparities in the identification of children with autism spectrum disorders. The American Journal of Public Health, 99(3), 493–498.

McManus, B. M., Robert, S., Albanese, A., Sadek-Badawi, M., & Palta, M. (2013). Predictors of receiving therapy among very low birth weight 2-year olds eligible for Part C early intervention in Wis- consin. BMC Pediatrics, 13, 106.

National Academies of Sciences, Engineering, and Medicine. (2016). Reaching and Investing in Children at the Margins: Summary of a Joint Workshop.

Nelson, B. B., Thompson, L. R., Herrera, P., Biely, C., Zarate, D. A., Aceves, I., et al. (2019). Telephone-based developmental screen- ing and care coordination through 2-1-1: A randomized trial. Pedi- atrics, 143(4), e20181064.

Norman, N., Bennett, C., Cowart, S., Felzien, M., Flores, M., Flores, R., et al. (2013). Boot camp translation: A method for building a community of solution. The Journal of the American Board of Family Medicine, 26(3), 254–263.

Pachter, L. M., & Dworkin, P. H. (1997). Maternal expectations about normal child development in 4 cultural groups. Archives of Pedi- atrics & Adolescent Medicine, 151(11), 1144–1150.

Rosenberg, S. A., Robinson, C. C., Shaw, E. F., & Ellison, M. C. (2013). Part C early intervention for infants and toddlers: Percent- age eligible versus served. Pediatrics, 131(1), 38–46.

Sand, N., Silverstein, M., Glascoe, F. P., Gupta, V. B., Tonniges, T. P., & O’Connor, K. G. (2005). Pediatricians’ reported practices regarding developmental screening: Do guidelines work? Do they help? Pediatrics, 116(1), 174–179.

Sices, L., Feudtner, C., McLaughlin, J., Drotar, D., & Williams, M. (2003). How do primary care physicians identify young children

with developmental delays? A national survey. The Journal of Developmental and Behavioral Pediatrics, 24(6), 409–417.

Silverstein, M., Sand, N., Glascoe, F. P., Gupta, V. B., Tonniges, T. P., & O’Connor, K. G. (2006). Pediatrician practices regarding referral to early intervention services: Is an established diagnosis important? Ambulatory Pediatrics, 6(2), 105–109.

Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19(6), 349–357.

United States Department of Health and Human Services Office of the Administration of Children and Families. (2017). Birth to 5: Watch Me Thrive! Retrieved from February 26, 2019, https :// www.acf.hhs.gov/ecd/child -healt h-devel opmen t/watch -me-thriv e

Westfall, J. M., Zittleman, L., Felzien, M., Norman, N., Tamez, M., Backlund-Jarquin, P., et al. (2016). Reinventing the wheel of med- ical evidence: How the boot camp translation process is making gains. Health Affairs (Millwood), 35(4), 613–618.

Zuckerman, K. E., Chavez, A. E., Regalado Murillo, C., Lindly, O. J., & Reeder, J. A. (2018). Disparities in familiarity with develop- mental disabilities among low-income parents. Academic Pediat- rics, 18(8), 944–951.

Zuckerman, K. E., Mattox, K., Donelan, K., Batbayar, O., Baghaee, A., & Bethell, C. (2013). Pediatrician identification of Latino children at risk for autism spectrum disorder. Pediatrics, 132(3), 445–453.

Zuckerman, K. E., Sinche, B., Cobian, M., Cervantes, M., Mejia, A., Becker, T., et al. (2014). Conceptualization of autism in the Latino community and its relationship with early diagnosis. The Journal of Developmental and Behavioral Pediatricsb, 35(8), 522–532.

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