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New Directions in Child Abuse and Neglect Research (2014)

Chapter: 7 Research Challenges and Infrastructure

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Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
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7


Research Challenges and Infrastructure

To be productive, high-quality scientific research requires a sophisticated infrastructure. This is especially true for research in which multiple fields, disciplines, methodologies, and levels of analysis are required to fully address key questions. Research on child abuse and neglect is especially complex, involving diverse independent service systems, multiple professions, ethical issues that are particularly complicated, and levels of outcome analysis ranging from the individual child to national statistics. Coordinating these multiple layers and systems requires a cohesive response from the federal government, private foundations, and academic institutions. All of these entities work together to build a research enterprise that can address the preventable problems of child abuse and neglect, making it possible to better understand, intervene in, and evaluate the pathways from causes to consequences and improve children’s lives. This chapter describes the current landscape of research on child abuse and neglect, highlights the multiple challenges encountered in conducting such research, and considers opportunities for increasing and improving this research as a coordinated field. The final section presents conclusions.

COMPONENTS OF THE CHILD ABUSE AND
NEGLECT RESEARCH INFRASTRUCTURE

Several components must be in place if a research infrastructure that is both effective in the short term and sustainable over time is to be built. Box 7-1 lists the human and physical capital components of a scientific research infrastructure. Building the research infrastructure needed to sup-

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
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BOX 7-1
Basic Infrastructure Requirements for
Research on Child Abuse and Neglect

Human Capital

•   Workforce

o   Professionals

o   Support staff

•   Training and mentoring

o   Funded researchers

o   Training funds

o   Competent mentors

•   Access to specialty consultation

•   Larger research community

o   Colleagues

o   Robust partnerships with agency-based and community collaborators

o   Representation in study sections and journal reviews

o   General consensus on methodology, priorities, and key problems

o   Results valued by policy makers and funders

Physical Capital

•   Space

o   Clinical

o   Office

o   Administrative and support staff

o   Research

•   Basic instrumentation

•   Information technology

Management and Capacity

•   Data management

•   Access to specialized instruments and services

•   Patient/participant recruitment and flow

•   Grant management and regulatory compliance

•   Capacity in service sectors working with children and families who experience child abuse and neglect to engage in and use research

 

port and sustain a field of child abuse and neglect that can inform practices, programs, and policies requires a coordinated, comprehensive approach. The infrastructure should be designed to (1) incorporate multidisciplinary and multimethod perspectives in research design; (2) initiate research focused on determining the role of cultural factors; (3) incorporate additional longitudinal data, improved surveillance mechanisms, and registries; (4) coordinate the allocation of sufficient research funding; and (5) develop a

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
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robust workforce through training and mentorship. Each of these elements is examined in turn in this section.

Multidisciplinary and Multimethod Perspectives

Child abuse and neglect research encompasses a wide range of disciplines and research problems. Figure 7-1 depicts 11 of the most salient domains identified by the committee: mental health, physical health, implementation science, child development, policy research, neurobiology, court interventions, child welfare, public health, forensic sciences, and ethical issues. Under each domain are examples of the types of problems, missions, and tasks addressed by investigators, as well as key disciplines that may be engaged in this research. Each of these domains has unique research infrastructure needs, methodologies, and agendas. This list is not comprehensive, but provides a general overview of the breadth of disciplinary involvement in child abuse and neglect research. Selected domains are discussed below.

These domains, as well as many others that relate to the study of child abuse and neglect, have specific focuses with respect to the causes and consequences of child abuse and neglect, as well as the delivery of services to prevent or treat its effects. However, the topics of interest specific to each research domain do not exist in isolation from the others. Integrating multidisciplinary perspectives into research across these domains can allow researchers to examine the many contextual factors surrounding incidents of abuse and neglect, to disentangle its consequences from the many co-occurring risk factors, to examine the many outcomes of interest from the implementation of programs and services, and to understand the interactions among services from the many providers that encounter abused and neglected children.

Physical Health

Published medical research on child abuse and neglect has addressed its epidemiology; its clinical manifestations and presentation, diagnosis, treatment, and outcomes; issues related to the medical care needs of foster children; and prevention. The clinical manifestations and nature of the histories presented have been published for many forms of child abuse according to discrete sets of conditions (e.g., abusive head trauma, physical abuse, sexual abuse). Attention has been paid to improving diagnoses and avoiding false-positive diagnoses, as well as improving assessments of both future risk and safety. Epidemiological data have been accumulating. One area of great interest is screening in medical practice, given that this is the first line of defense in many cases.

Screening in medical practice is the process of looking for occult condi-

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
×

 

image

FIGURE 7-1 Child abuse and neglect research domains.

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
×

tions before they become manifest (Fletcher et al., 2005). The principles of screening include having a screening test that is acceptable with appropriate sensitivity and specificity, seeking an important condition, having effective interventions available, and seeing a better outcome if the condition is identified early rather than late (Fletcher et al., 2005). In 2004, the U.S. Preventive Services Task Force (USPSTF) considered whether the evidence supported recommending that physicians screen for child abuse and neglect in medical practice. The task force concluded: “We identified no studies meeting eligibility criteria that directly addressed the effectiveness of screening in a health care setting in reducing harm and premature death and disability, or the adverse effects of screening and interventions” (Nelson et al., 2004, p. 29). In January 2013, the USPSTF released a new systematic review addressing the same question (Selph et al., 2013). Although this review still does not offer strong support for screening, it is somewhat more supportive based on the impact of multiple home visiting trials (Duggan et al., 2004; Kitzman et al., 1997; Olds et al., 1986, 2007) and a single study of screening in pediatric primary care (Dubowitz et al., 2009). The task force states: “In conclusion, trials of risk assessment and behavioral interventions and counseling in pediatric clinics and early childhood home visitation programs indicated reduced abuse and neglect outcomes for children, although all trials had limitations and trials of home visitation reported inconsistent results…. More research is needed in key areas to provide clinicians with effective methods of [identifying children at risk for abuse and neglect]” (Selph et al., 2013, p. 188). Thus the USPSTF has called for more research on screening for child abuse and neglect in medical practices. New work is needed to document the process of screening (including asking parents or children directly), the proportion of children that receive the intervention and the proportion of refusals to participate, the beneficial impact for children or parents, and any adverse impacts.

Research on using the medical examination to detect abuse or neglect shows mixed results. For example, complete skeletal surveys have been recommended as an adjunct for assessing young injured children for physical abuse; however, there are gaps in knowledge about when, with whom, and how often X-rays should be obtained, aside from issues of the accuracy of readings or the appropriate technology for imaging. Rib fractures and multiple fractures are known to be associated with abuse more commonly than other fractures in young children (Kemp et al., 2008), but questions remain about when a diagnosis of abuse should be considered and X-rays ordered in potentially related conditions such as acute life-threatening events, seizures, burns, and abusive head injury. Unanswered questions include: What are the clinical indications for performing a radiographic skeletal survey?, What are the yields of X-rays in different populations of children?, and What is the utility of follow-up X-rays where data suggest

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
×

improved sensitivity and specificity at the expense of increased radiation and monetary costs? Research is needed to ascertain the most sensitive, specific, and cost-effective methods for identifying skeletal injuries, with consideration of the hazards of increased radiation exposure. Comparative studies of findings across clinical centers using standardized reporting could improve understanding of fracture mechanics and identification of abusive versus accidental injuries.

With respect to sexual abuse, prior research has led the American Academy of Pediatrics (AAP) to publish interpretations of the relationship between some sexually transmitted infections and the likelihood of such abuse (Kellogg, 2005). However, many questions remain, such as: What is the specificity of ano-genital warts for a sexual abuse diagnosis in children?, How is this altered by the age and gender of the child, site of the lesions, or human papillomavirus type?, What is the natural history of this infection with vertical transmission or increasing age of the child?, What sensitivity and specificity do nucleic acid amplification tests have in detecting infection for the range of potential sexually transmitted infections?, Which diagnostic tests for sexually transmitted infections should be used for which parts of the body and at what time?, and What are the appropriate clinical indications for these tests?

Abusive head trauma was first described as shaken baby syndrome more than 40 years ago, yet intense public and legal controversy over this diagnosis persists. Several challenges are associated with the diagnosis. First, perhaps, is terminology and what is or is not included in this diagnosis category. As absolute certainty is rare with abusive head trauma cases, and a probabilistic or Bayesian approach to the diagnosis is consistent with this uncertainty. Another controversy in studies of abusive head trauma has to do with the relationship between hypoxia in isolation and subdural hemorrhage in infants. A clear characterization of the sensitivity and specificity of subdural hemorrhage, subarachnoid hemorrhage, and cervical epidural hemorrhage as markers for both neurotrauma and hypoxia/ischemia is lacking. The phenomena of scar retraction and spontaneous rebleed have been suggested as a challenge to determining the time of injury. Systematic study of subdural membranes and neuropathology related to rebleeds is needed to settle this controversy. Another area of controversy needing explication is the significance and location of beta amyloid precursor protein (APP) in the brain as a marker of trauma, hypoxia-ischemia, or infarction. Eye injuries, specifically retinal hemorrhages, have been interpreted as evidence of abusive head trauma by some and disputed by others.

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
×

Policy Research

As discussed in Chapter 8, there have been numerous changes to federal and state laws and policies designed to impact the incidence, reporting, and negative health and economic consequences of child abuse and neglect since the 1993 National Research Council (NRC) report was issued. In addition, states vary widely in policies regarding mandated reporters; definitions of abuse and neglect; inclusion of witnessing intimate partner violence; and expansions of what is included in the laws, the range of penalties, and stipulations of such things as shaken baby prevention in the nursery. However, research examining the impact of policy changes and variations across state laws on outcomes for children and families, as well the systems responsible for implementing the policies, has been scant. Despite an increased federal focus on implementing evidence-based policies, support has been lacking for research efforts to evaluate policies related to child abuse and neglect.

Child Welfare

A number of new research opportunities are emerging in the child welfare field. Large administrative datasets now available can be analyzed to inform practice, as well as case-linked to other electronic records to permit multidimensional and longitudinal evaluations of outcomes. Child welfare providers and funders increasingly are required to employ evidence-based practices and thus are active consumers of research, as described in Chapter 6. Areas of research, including in many instances testing of interventions, include addressing child neglect, parent engagement, infant mental health, community-based prevention and parenting education, addressing trauma and meeting the mental health needs of children who experience abuse and neglect, risk and safety assessment, decision making, the impact of substance abuse on child abuse and neglect, links between child abuse and neglect prevention and economic well-being, achieving permanency through guardianship, reducing long-term foster care, and accountability and performance-based contracting. The social work profession provides a large part of this research community, and successful collaborations between child welfare agencies and universities offer a range of examples of how to create productive research partnerships.

Funding for research evaluating child welfare programs is potentially available through many discretionary programs advanced through the multiple initiatives and priorities of the Children’s Bureau and its Office on Child Abuse and Neglect. Other potential funding sources are the Centers for Disease Control and Prevention (CDC); the National Institutes of Health (NIH); the Department of Justice; and several foundations, including the Doris Duke Charitable Foundation and the William T. Grant

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
×

Foundation. Since the 1993 NRC report was issued, the Children’s Bureau has strengthened the rigor of the required evaluations. In addition, federal legislation—for example, Title IV-E waivers for demonstration projects—has required rigorous evaluation, and many demonstrations have included randomized designs. As noted in Chapter 5, however, the 2011 waiver authority stipulates that the review of applications for Title IV-E waivers for fiscal years (FYs) 2012-2014 cannot consider whether the applicants will use an experimental design, reducing the impetus for the use of random assignment in Title IV-E waiver demonstrations (Testa, 2012).

Moreover, although there have been recent federal investments such as funding for training under Titles IV-E and IV-B, there have been no commensurate investments in child welfare research capacity. In fact, the small discretionary research program of the Children’s Bureau, which also included some funding for doctoral students, was terminated in 1996, when the funds were used to launch the National Study of Child and Adolescent Well-Being as part of the Personal Responsibility and Workforce Investment Act. Unless potential investigators seeking support for field-initiated research approach NIH or CDC, there will be no national funding source for such research or for training for child welfare researchers. Given the few child welfare researchers being supported by these latter organizations, the number of mentors or reviewers for such research is limited, and there is little experience in the field with these funding sources.

Public Health

Child abuse and neglect is now recognized as a major public health problem by the World Health Organization and CDC (CDC, 2010, 2012a; Fang et al., 2012; Putnam-Hornstein et al., 2011; WHO, 2013). Research such as the seminal Adverse Childhood Experiences studies of Felitti and colleagues demonstrates the significant associations between childhood adversities and chronic medical conditions such as heart disease, diabetes, cancer, and obesity, as well as HIV risk (Anda et al., 1999, 2007; Chapman et al., 2004; Dong et al., 2003; Dube et al., 2001, 2003a,b; Felitti et al., 1998).

The classic public health approach is often conceptualized as a four-step process (Putnam-Hornstein et al., 2011). The first step is the implementation of a good surveillance system to collect and analyze data with which to detect and describe the condition, thereby informing the planning and implementation of public health interventions. The second step is the identification of risk and protective factors. The third is the development and testing of interventions focused on the identified risk and protective factors. The fourth and final step is the implementation of effective prevention and control strategies. Steps three and four require an ongoing surveillance

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
×

infrastructure to evaluate the effectiveness of interventions and prevention strategies.

Suggestions for improving surveillance of child abuse and neglect include using data from multiple independent sources, linking cases across different databases, and enforcing the standard case definitions (Medina et al., 2012).1 Pilot efforts entailing each of these strategies have yielded improvements in surveillance (Medina et al., 2012; Putnam-Hornstein et al., 2011; Schnitzer et al., 2004). Because abused and neglected children come in contact with multiple systems (e.g., health care, social services, education, law enforcement, and child death reviews), aggregating data across multiple independent sources can improve the identification of cases not referred to child welfare agencies. Linking case-based data from two or more datasets has proven especially informative about risk factors. In California, linking birth certificate data with child protection records for more than 2 million children aged 5 and younger enabled the identification of variables associated with high rates of child abuse and neglect (Putnam-Hornstein et al., 2011). The study found, for example, that 1 of every 3 children born without established paternity were reported to child protective services for abuse and neglect; about 1 in 10 children born to teenage mothers were victims of abuse and neglect.

Case-linkage studies are proving important for the early identification of groups that are at highest risk and therefore most likely to benefit from public health interventions. Case-linkage methodology requires quality datasets and sophisticated data management expertise to merge information reliably. Open-source software (e.g., Link Plus, developed by CDC) is increasingly available, as are standards for evaluating the probability of case matching. For research purposes, there are methodological and practical advantages to linking administrative data across systems. As noted by Jonson-Reid and Drake (2008), such linkage mitigates the underreporting biases found when single-agency data sources are used to understand immediate and longer-term outcomes. Analysis of administrative data in conjunction with survey data offsets the limitations of retrospective accounts of victimization based on respondent recall (Brown et al., 1998; Widom et al., 2004) and the use of resource-intensive, prospective in-person sampling methods (Dubowitz et al., 2006). For the field of child maltreatment, such analysis allows for greater research, practice, and policy synthesis (Drake and Jonson-Reid, 1999) and the examination of risk factors, recurrence or

 

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1The term surveillance is used here in the public health sense to refer to a systematic assessment of the extent and nature of the child abuse and neglect problem by counting children or cases in a way that makes it possible to know the rates of occurrence; assess trends in types of abuse or neglect; and understand relationships to other important variables, such as single parenthood, special populations, and child gender and age.

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
×

recidivism, and prevention and intervention outcomes (Jonson-Reid and Drake, 2008; Medina et al., 2012). Children and families presenting with comorbid problems are involved with multiple systems, including the medical, child welfare, early childhood, juvenile justice, legal and judicial, and public health systems, as well as community-based services. While emphasis has increased on coordination across child protection and local service delivery environments (e.g., one-stop approaches, systems of care, interoperability2) and on the use of data-driven decision making, the case record of a child’s or family’s contact, referral, and service receipt over time is often distributed across administrative datasets housed in different institutional settings (Jonson-Reid and Drake, 2008).

Although most child abuse and neglect agencies lack the in-house expertise to benefit from using multiple data sources or case linking across datasets, efforts are being made to build this capacity. In response to this need, for example, Chapin Hall at the University of Chicago instituted Administrative Data Institutes for child welfare managers in the early 1990s. To foster the integration of research with policy and practice, Chapin Hall has since 2007 offered annual sessions in Advanced Analytics for Child Welfare Administration, which focus on using longitudinal administrative data in child welfare decision making, program planning, and outcome monitoring (Chapin Hall, 2012). A timely, sensitive, and reliable surveillance system also is necessary to determine the effectiveness of child abuse and neglect prevention programs. A coordinated national public health approach to child abuse and neglect will not be possible without a modern, general population-based, epidemiological surveillance system. The enormous costs and lifelong consequences of child abuse and neglect call for investment in a surveillance infrastructure commensurate with the magnitude of the problem.

Ethical Issues

Abused and neglected children and adolescents are a vulnerable population (MacMillan et al., 2007). As a result, ethical issues raised by proposed research in the field receive intensive scrutiny from study sections and institutional review boards. Questions often raised include: (1) Who is authorized to provide informed consent when children are wards of child protection?; (2) Under what circumstances can adolescents provide

 

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2Findings from the pilot Information Portability Project indicate that the use of mobile technologies and the sharing of information across child- and family-serving systems facilitates access to information in real time, making it possible to monitor safety and well-being, coordinate service delivery, promote data-informed decision making, and reduce service duplication (Schilling-Wolfe, 2010).

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
×

informed consent?; (3) Is it harmful to ask subjects about possible abuse and neglect experiences, and at what age is this permissible?; (4) How does mandated reporting affect research confidentiality?; (5) Are researchers required to provide treatment or services when they uncover abuse and neglect?; (6) What inducements to participate in research are appropriate and not coercive for children or families involved in child protection investigations?; and (7) What are ethical approaches to tracking subjects involved in longitudinal studies? (MacMillan et al., 2007). Box 7-2 presents an example of difficulties faced by child abuse and neglect researchers as a result of ethical concerns of institutional review boards.

The Role of Cultural Factors

There is a continuing need to understand the complex role of culture and context in the causes, consequences, prevention, and treatment of child abuse and neglect (Feiring and Zielinski, 2011), particularly in light of the increasing heterogeneity of U.S. families (IOM and NRC, 2011). Viewing culture as shared and dynamic (Korbin, 2002), focused on the learning and transmission of behavior and activity and the expression of internalized norms and models (Rogoff, 2003; Weisner, 2002), provides a lens for the examination of risk and protective factors for child abuse and neglect within families, neighborhoods, and communities. Examples of cultural factors relevant to child abuse and neglect and child well-being that have been examined across research disciplines include child-rearing practices (Earle and Cross, 2001; Ferrari, 2002; Waters and Sykes, 2009), fathers’ parenting behaviors (Ferrari, 2002), adultification of young children (Burton, 2007), child care burdens (Roditti, 2005), perceptions of neglect (Evans-Campbell, 2008), sibling caretaking and self-care among children of immigrants (Greene et al., 2011; Hafford, 2010), expressions of familism3 and the role of extended families in systems of parental authority and disciplinary practices (Fontes, 2002; Fuhua and Qin, 2009), and family cohesion and mutual aid (Fuhua and Qin, 2009). Context, place, and structural factors, including poverty and historical trauma, also interact with culture and family dynamics (Coulton et al., 2007; DeBruyn et al., 2001).

Understanding cultural factors related to risk and protective factors for child abuse and neglect or the effectiveness of interventions requires the complementary use of qualitative and quantitative research methodologies (Korbin and Spilsbury, 1999). Understanding the interplay of micro- and macro-level processes and establishing the evidence base also entails the use of methods and approaches that are culturally sensitive and responsive to

 

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3Attitudes, behaviors, and family structures operating within an extended family system (Germán et al., 2009).

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
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BOX 7-2
Challenges of Institutional Review Board Review
for Research on Child Abuse and Neglect

The Yale Department of Psychiatry’s Child and Adolescent Research and Education (CARE) program had a long-standing research collaboration with the State of Connecticut’s Department of Child and Families (DCF), which included evaluating the DCF SAFE Homes intervention for children temporarily placed in state-run facilities (DeSena et al., 2005) and examining genetic and environmental factors associated with risk and resiliency (e.g., Kaufman et al., 2004, 2006). The CARE program also has been at the forefront of research on the epigenetic effects of child abuse and neglect (Yang et al., 2013). Both the Yale University Human Investigations Committee and the DCF Institutional Review Board (IRB) approved all research involving DCF children. The children’s legal guardians provided written consent for participation in the study, and all children provided written assent; when available (96 percent of the time), birth parents also provided written assent. Children were assessed and saliva was collected for DNA extraction during the week the children participated in a free day camp. Demographically matched comparison subjects were recruited through targeted mailings and newspaper advertisements.

In 2006, Yale received a National Institute of Mental Health (NIMH) grant (R01 MH077087) to study genetic and environmental modifiers of child depression. In August 2006, leadership of the DCF IRB changed, and further recruitment of DCF youth for the pending R01-funded study was denied. In addition, previously collected DNA could no longer be analyzed. Multiple efforts were made to resolve the DCF IRB’s concerns, which focused on the possibility that because of the high percentage of minority children in DCF custody, any genetic findings could be interpreted as stigmatizing.

 

diverse populations that are vulnerable, hidden, and underresearched and whose experience of maltreatment is not well understood or adequately addressed. Examples of these populations include American Indian and Alaska Native children and families (Cross, 2012); Latino children and families; children with disabilities; children of immigrants; lesbian, gay, bisexual, and transgender (LGBT) youth (D’Augelli, 2012); and military families (Heyman and Slep, 2012). Such methods and approaches are illustrated by the use of ethnography in studies seeking to understand social capital and neighbors’ supports for parenting (Korbin et al., 1998); how parental undocumented status affects the developmental contexts and early learning of children of immigrants (Yoshikawa, 2011); and the dynamics of complex, minority families (Burton, 2007). Illustrative as well are the use of participatory, inclusive research to study sensitive issues related to at-risk

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
×

Despite letters from the director of NIMH and others, the DCF IRB continued to deny permission to recruit new subjects or to allow previously collected DNA to be analyzed. An effort to relocate the study to New York State failed after passing the first four of five levels of review. As was the case in Connecticut, the New York State Office of Children and Family Services ultimately denied approval of the study, citing, in part, “the lack of racial diversity in the sample of foster children … as it appears to single out a group of children who will in all probability be made up almost exclusively of children of color.”

In February 2011, NIMH requested that Yale return the R01 funds as the proposed study could not be conducted. In June 2011, just days before the grant was to be revoked, the DCF IRB, under new leadership, gave permission for the stored DNA samples to be analyzed. Among the results was a finding of significant differences between abused and neglected and comparison children in methylation of CpG sites (p <5.0 × 10–7) in genes that have been implicated in neuropsychiatric diseases, cardiovascular disease, obesity, and cancer (Yang et al., 2013). Although further replication is required, these findings suggest that the increased risk for lung, colorectal, prostatic, breast, colon, and ovarian neoplasms in individuals with a child abuse and neglect history may reflect preventable or reversible epigenetic effects in addition to the known contributions of the high rates of health risk behaviors, such as smoking and drug and alcohol abuse, highly associated with childhood abuse and adversity.

Investigators working with children who are in state custody generally must satisfy multiple levels of human subjects and policy review beyond that of their IRB. In some instances, even when the risk of harm is minimal, political and social concerns may block scientific investigations, denying these high-risk children the benefits that routinely accrue for children with other conditions and disorders as a result of their participation in state-of-the-art medical and psychiatric research.

American Indian and Alaska Native populations (The National Congress of American Indians, 2009; Sahota, 2010); the use of community-based participatory research to develop intervention strategies (Baum et al., 2013) and examine the effectiveness of culturally validated practices (Cross et al., 2011); and the translation of research findings into culturally competent strategies for prevention, intervention, and service delivery (Sahota, 2010).

The importance of a focus on culture goes beyond understanding the causes and consequences of child abuse and neglect and involvement with child protective services or other social service systems. Culture matters in developing and testing the effectiveness of prevention and intervention strategies and replicating and adapting evidence-based practices for distinct populations or groups to ensure cultural fit, reach, efficacy, and adoption (Barrera et al., 2011), as well as the social validity and practical application

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
×

of an intervention (Lau, 2006). Examples of areas in which more work is needed on the development of interventions for vulnerable populations include the following topics, which were raised at a public workshop held by this committee in December 2012: suicide prevention among LGBT youth, stress and adaptation among families with LGBT youth (D’Augelli, 2005), and stressors within military families due to multiple deployments (IOM and NRC, 2012).

Illustrative of a cultural focus in the development of interventions are recent adaptations of evidence-based psychosocial treatments targeting Latino children and adolescents (Silverman et al., 2008). Culturally modified trauma-focused treatment, for example, is a cultural adaptation of trauma-focused cognitive-behavioral therapy (see Chapter 6) (Rivera and Arellano, 2008), used with Latino children aged 4-18 who have experienced sexual or physical abuse. Incorporated throughout are treatment modules that integrate cultural concepts such as familismo, personalismo, respeto, sympatia, and fatalismo, as well as spirituality and folk beliefs.

One understudied population is children with disabilities (see Chapter 3). Knowledge is lacking about the prevalence of these children in the child welfare system, as well as the prevalence of children who have parents with disabilities, including how they are served and what prevention strategies are effective for their families (Lightfoot and LaLiberte, 2006; National Council on Disability, 2012). There are barriers to research on this population. As identified by AAP, they include the lack of a universal definition of what constitutes a disability; the lack of correspondence between legal definitions and clinical data; and inconsistent identification, assessment, and documentation of children who enter the child protection system (Bonner et al., 1997; Hibbard et al., 2007).

More research has been conducted on the victimization and abuse and neglect of the heterogenous LGBT population (IOM, 2011), including American Indian youth who may self-identify as LGBT or two-spirit (Anguksuar et al., 1997; Balsam et al., 2004; Saewyc et al., 2006; Walters et al., 2001). Greater demographic diversity of study samples, including youth who are under age 18 and sampling in urban and rural settings, is needed to detect subgroup differences (Elze, 2009). LGBT youth need to be recruited to participate in small-scale, qualitative research studies so that more can be learned about their abuse and neglect experiences, the consequences of their victimization, and their service needs and outcomes (Elze, 2009).4 Incorporating questions about sexual identity and same-

 

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4Topics to address include (1) demographic characteristics (race/ethnicity, sexual orientation, gender identity, socioeconomic status, education, geographic location); (2) family and interpersonal relations (including acceptance or rejection); (3) social supports (family, friends, peers); (4) needs and unmet needs; (5) the coming-out process; (6) experiences of stigma and

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
×

gender attraction and sexual behaviors in population-based surveys would increase the representation of LGBT youth (Elze, 2009; IOM, 2011) and limit reliance on convenience samples. Information on transgender youth (Grossman and D’Augelli, 2006, 2007) is particularly limited. Further guidance is needed on the incorporation of at-risk protocols into research studies and human subject protections (e.g., waivers of parental consent for minors who may be subject to exposure or risk of harm) (Grossman and D’Augelli, 2007).

Longitudinal Studies, Surveillance, and Registries

In addition to a compilation of state child abuse and neglect reports issued annually by the federal government (the Child Welfare Information Gateway), four National Incidence Studies (NISs) (Sedlak, 1988; Sedlak et al., 1997, 2010) have been conducted at about 10-year intervals, as well as surveys of parents or children (e.g., Straus et al., 1998), studies of trends in admission of children to hospitals and to intensive care units (e.g., Leventhal et al., 1997), and a population-based comparison of clinical and outcome characteristics of young children with serious inflicted and noninflicted traumatic brain injury. As a result of this work, the demographics and trends of child abuse and neglect have become clearer. Nonetheless, as highlighted in the preceding chapters, more comprehensive and accurate data are needed to enable a better understanding of the incidence of and circumstances surrounding child abuse and neglect. The following sections examine longitudinal studies, more comprehensive surveillance systems, and registries as possible means to fill this data gap.

Longitudinal Studies

Longitudinal studies are essential for identifying causal pathways between abuse- and neglect-related biological changes and later adult outcomes (Trickett et al., 2011). Such studies are complicated and expensive in terms of both time and money, and require the dedication of stable research teams over long periods. Subjects must be tracked between measurement time points—often years apart—and periodically reengaged or reconsented to enhance sample retention. Longitudinal studies of developmental psychopathology also must grapple with validly issues in the

 

 

discrimination (including economic discrimination); (7) violence (sexual abuse, child abuse, intimate partner violence) and anti-LGBT victimization; (8) risk behaviors; (9) help-seeking behaviors and professional support; (10) barriers to access to human services; (11) interactions with service providers (cultural competency); (12) identification of services needed; and (13) ways to be better served.

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
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measurement of central constructs such as depression, anxiety, and posttraumatic stress disorder across multiple developmental epochs associated with enormous cognitive and behavioral change. The few longitudinal studies that have been conducted—Longitudinal Studies of Child Abuse and Neglect (LONGSCAN) (Runyan et al., 1998), the Christchurch Health and Development Study (Trickett et al., 2011; Widom et al., 2004), and the Dunedin Multidisciplinary Health and Development Study—have yielded an extraordinarily rich perspective on the developmental progression of negative long-term outcomes associated with childhood abuse and neglect (MacMillan et al., 2007). Much of the accumulating knowledge base on the psychosocial consequences of child abuse and neglect (discussed in Chapter 4) derives from such longitudinal studies, along with continued hypothesis testing and secondary analyses of an increasing number of archived research studies in child abuse and case-level National Child Abuse and Neglect Data System (NCANDS) data.

The National Study of Child and Adolescent Well-Being (NSCAW) was conducted under a provision of the Personal Responsibility and Work Opportunity Act of 1996 that directed the Secretary of the Department of Health and Human Services (HHS) to conduct a national study of children at risk of abuse or neglect or in the child welfare system. The study was to include a longitudinal component that followed cases over the course of several years, and gather data on the types of abuse or neglect involved and the contacts and services provided by the child welfare agency, including out-of-home placement. The intent was to provide reliable state-level data for as many states as feasible regarding the characteristics of children and families served by the child welfare system, as well as system-level factors. The two rounds of the study over the past 15 years have yielded data whose analysis is making important contributions to enhancement of the delivery of child welfare services and their outcomes (see, for example, Casanueva, 2012a,b). It should be noted that the second round of the NSCAW has been truncated to 3 years without additional funding to follow this cohort further.

Surveillance Systems

Numerous limitations characterize the current child abuse and neglect surveillance system, which relies primarily on NCANDS data, supplemented sporadically by the NIS. Critics note that NCANDS captures only children reported to child welfare agencies (Medina et al., 2012), who are believed to represent a minority of total abuse and neglect cases. Moreover, states submit data voluntarily to NCANDS, and their standards and case definitions vary greatly, preventing meaningful comparison across jurisdictions (GAO, 2008). The lack of definitional uniformity, compounded by

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
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local changes in case coding, makes it difficult to investigate geographic and chronological trends. NCANDS reports also have traditionally lagged about 2 years behind real time, preventing their use in public health responses to acute changes in rates. Furthermore, NCANDS does not collect data on many relevant risk factors, a primary function of a modern public health surveillance system. A recent study by the General Accounting Office estimates that about 50 percent of child abuse and neglect fatalities are missed by NCANDS (GAO, 2011).

Registries

Evidence-based classification schemes have brought conceptual and practical coherence to the maturing and interdisciplinary field of prevention research and the implementation of sound prevention strategies (Puddy and Wilkins, 2011). In the past decade, federal agencies have established a number of registries and clearinghouses with a focus on prevention of child abuse and neglect. Examples include the National Crime Victims Research and Treatment Center (Saunders et al., 2004) and the National Registry of Evidence-Based Programs and Practices (SAMHSA, 2013). University-based and other institutional efforts include the Chadwick Center for Children and Families; the California Evidence-Based Clearinghouse; and the Promising Practices Network for Children, Families, and Communities.

These registries serve to generate knowledge and advance the field; they are an important development in the infrastructure for prevention research and a valuable resource for the implementation of evidence-based models and strategies. Yet their varied institutional homes underscore the fragmentation of prevention research across federal agencies and the lack of a unified federal policy and research agenda. Universities and social science research organizations have attempted to unify the evidence base in child abuse and neglect and prevention research.

Research Funding

A wide array of federal agencies have provided funding for child abuse and neglect research through various legislative initiatives. Major funding sources include but are not limited to the Child Abuse Prevention and Treatment Act (CAPTA); CDC; NIH; the Administration on Children, Youth and Families (ACYF) within HHS; the Agency for Healthcare Research and Quality (AHRQ); and the Title IV-E waiver demonstration program. As noted earlier, several private foundations also provide support for child abuse and neglect research.

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
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Child Abuse Prevention and Treatment Act

CAPTA was originally enacted in 1974 and was most recently amended and authorized on December 20, 2010 (P.L. 111-320). The act provides funding to states to support prevention, assessment, investigation, prosecution, and treatment for child abuse. It also supports grants for demonstration programs and projects to public agencies, tribal organizations, and nonprofits.

CAPTA requires that every 2 years, the Children’s Bureau within ACYF issue for public comment a set of priorities for research topics to be covered in grants and contracts. On February 3, 2006, the Children’s Bureau published in the Federal Register “Children’s Bureau Proposed Research Priorities for Fiscal Year 2006-2008.”5 Despite this extensive published research agenda, limited funding—no more than $27 million for the entire CAPTA discretionary grant program in 2008—has precluded a full examination of most of these topics through CAPTA or other Children’s Bureau research funding streams (IASWR, 2008). Some field-initiated research is funded through CAPTA; however, the funding announcements are often prescriptive as to the use of these funds. In 2003, for example, the Children’s Bureau requested applications for replication of an evidence-based program, Family Connections (developed by DePanfilis and colleagues at the University of Maryland); the funding was used to support dissertation and other research through quality improvement centers and implementation grants.

Centers for Disease Control and Prevention

CDC established the National Center for Injury Prevention and Control (NCIPC) 20 years ago. This center is the nation’s authority for prevention of violence and injury. It provides funding and technical assistance to 20 state health departments to strengthen capacity in injury prevention. Child abuse and neglect is one of NCIPC’s priority areas, although funding for child abuse and neglect activities has been limited—a total of 25 grant awards or cooperative agreements for research projects in child abuse prevention since 2002. In FY 2011, the latest year shown on the NCIPC website, no new awards were made in the area of child abuse. In addition, several CDC-funded injury prevention centers, such as the Center for Violence and Injury Prevention at Washington University’s Brown School of Social Work, target child abuse and neglect.

In 2001, CDC convened 15 abuse and neglect experts to establish

 

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571 FR 11427 Children’s Bureau Proposed Research Priorities for Fiscal Years 2006-2008 (http://www.gpo.gov/fdsys/granule/FR-2006-03-07/06-2154/content-detail.html [accessed January 27, 2014]).

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
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priorities related to surveillance (data collection, uniform definitions), etiological and risk factors, intervention and evaluation, and implementation and dissemination. The NCIPC research agenda was updated in 2009, with a plan to extend it through 2018. According to the updated agenda: “The mission of CDC’s child maltreatment prevention program is to prevent maltreatment and its consequences through surveillance, research and development, capacity building, communication, and leadership. In pursuit of this mission, CDC’s public health approach complements such other approaches as those of the criminal justice and mental health systems. In particular, CDC’s approach emphasizes primary prevention of perpetration of child maltreatment or efforts that focus on preventing maltreatment before it occurs” (CDC, 2009, p. 75).

The foundation of CDC’s child abuse and neglect prevention work is the promotion of safe, stable nurturing relationships (CDC, 2010). The agenda highlights the synergistic effects such relationships can have on health problems across the life span. These relationships also contribute to the development of skills that enhance the acquisition of healthy habits and lifestyles. CDC recognizes that to promote such relationships and reduce abuse and neglect, additional research is needed across the different social contexts in which children develop and interact, including the individual, the family, peers, the community, and society. The agenda draws on the Institute of Medicine (IOM) report Reducing the Burden of Injury, noting that “rigorous research is needed to assess the effectiveness of prevention programs and to determine which among them merit widespread use. To ensure the feasibility of widespread use of child abuse and neglect prevention programs, research is also needed to assess program cost-effectiveness and the cost of initiating or expanding effective programs” (CDC, 2009, p. 76).

CDC also has examined the economic costs of child abuse and neglect, finding that the costs for both victims and society are substantial (CDC, 2012a). According to Fang and colleagues (2012), the total lifetime estimated financial costs associated with just 1 year of confirmed cases of child physical abuse, sexual abuse, psychological abuse, and neglect is approximately $124 billion (see also the discussion of costs in Chapter 4).

National Institutes of Health

NIH pursues fundamental knowledge about the nature and behavior of living systems and the application of knowledge to enhance health, lengthen life, and reduce the burdens of illness and disability. It invests more than $30 billion annually in medical research; research in the area of child abuse and neglect generally accounts for about $30 million per year. Yet of the funding for child abuse and neglect research in FY 2011, just over one-

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
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half, or about $16 million, was awarded for grants whose abstract or title indicated that child abuse and neglect was either the major independent or dependent variable; the remainder of the grants were on a variety of other topics, such as treatment of suicide, delinquency, or drug treatment of mental disorders. Of the total NIH expenditures in the area of child abuse and neglect research in FY 2011, just over $4 million was spent on new, first-time R01 grants.

In 1997, the House of Representatives’ Committee on Appropriations (House Report 104-659) directed that NIH “convene a working group of its component organizations currently supporting research on child abuse and neglect.” The NIH Child Abuse and Neglect Working Group was established in response to this mandate. Special funding announcements related to child abuse and neglect also were issued, encouraging new investigators across multiple disciplines to apply for funding. Special topics were targeted. In 2001, for example, a program announcement targeted research on child neglect.6 That announcement expanded support from several NIH institutes, the National Institute of Justice and Office of Juvenile Justice and Delinquency Prevention in the Office of Justice Programs at the Department of Justice, the Children’s Bureau, and the Office of Special Education Programs in the Department of Education.

In 2007, a program announcement, “Research on Interventions for Child Abuse and Neglect,”7 was developed in response to the 2005 Surgeon General’s workshop on this topic. The grant was supported by the National Institute of Mental Health (NIMH), National Institute on Alcohol Abuse and Alcoholism (NIAAA), National Institute of Child Health and Human Development (NICHD), National Institute on Drug Abuse (NIDA), and National Institute of Neurological Disorders and Stroke (NINDS); the NIH Office of Behavioral and Social Services Research; the NIH Fogarty International Center; CDC’s NCIPC; and the Children’s Bureau. After 2010, however, NIMH withdrew from participation.8

NICHD detailed to its council its commitment to research on child abuse and neglect and violence in general in January 2009, stating that within the Social and Affective Development/Child Maltreatment and Violence Program of NICHD’s Child Development Behavior Branch, attention to child abuse and neglect includes active involvement in trans-NIH and transagency efforts to advance the science in the field of child abuse and neglect research; this involvement includes co-chairing the NIH Child Abuse and Neglect Working Group. The Child Development Behavior Branch also

 

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6See http://grants.nih.gov/grants/guide/pa-files/PA-01-060.html (accessed January 27, 2014).

7See http://grants.nih.gov/grants/guide/pa-files/PA-07-437.html (accessed January 27, 2014).

8See http://grants.nih.gov/grants/guide/notice-files/NOT-MH-10-006.html (accessed January 27, 2014).

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
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worked with the Children’s Bureau, supporting supplemental studies, based on the NIS-4, aimed at understanding the various definitions of child abuse and neglect used by reporting agencies and their standards for reporting suspected abuse and neglect to child protective services or to the NIS-4.9

Administration on Children, Youth and Families, Children’s Bureau

Created in 1912, the Children’s Bureau within ACYF is focused on improving the lives of children and families. With an annual budget of about $8 billion, the agency funds services in all of the states and has a research program. The Children’s Bureau funds an extensive training and technical assistance network; provides a series of child abuse prevention grants; and over the years has funded some field-initiated research grants and dissertation awards, as well as the NIS and annual reports on child abuse and neglect. The Children’s Bureau also funds national quality improvement centers in several areas of child welfare that conduct evaluations. Currently there are three national quality improvement centers in the research domains of differential response in child protective services, early child experiences, and representation of children in the child welfare system (Children’s Bureau, 2013). The goal for these centers is to assist child welfare professionals and agencies with service delivery by generating and disseminating research and lessons learned from the field. The Children’s Bureau also funds the Child Welfare Information Gateway, an online clearinghouse for relevant information and statistics that archives data from federally supported and other research projects. In addition, the Office on Child Abuse and Neglect is now a unit within the Children’s Bureau. The Children’s Bureau does not currently provide support for investigator-initiated research and research grants responding to requests for applications.

Agency for Healthcare Research and Quality

AHRQ is the federal agency with responsibility for improving the quality, safety, efficiency, and effectiveness of health care, and it has a grant award program in these areas. The agency’s total annual budget is about $400 million. Since 1993, AHRQ has awarded seven grants in the area of child abuse or neglect, including one career development award, two R01 awards, one conference grant, and three R03 awards.10

 

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9See http://www.nichd.nih.gov/publications/pubs/upload/CDBB_Council_Report_2009_rev.pdf#page=39 (accessed January 27, 2014).

10See http://projectreporter.nih.gov (accessed March 28, 2013).

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
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Title IV-E Waiver Demonstration Program

Title IV-E waivers, discussed in detail in Chapter 5, were first authorized in 1994 under P.L. 103-432 and were reauthorized under the Adoption and Safe Families Act. The creation of waivers is important for several reasons. First, they give successful state applicants the opportunity to use Title IV-B and IV-E funds more flexibly—for example, to focus more on prevention, in-home supportive services, or kinship care. Second, waivers require extensive evaluation, and several of the waiver demonstrations have used rigorous randomized designs. The authorizations for the waivers expired in 2006. However, a new round was supported under the Child and Family Services Innovation and Implementation Act of 2011 (P.L. 112-34), in part as a result of their success in states and localities as revealed by evaluation results.

Private Foundations

A number of national, local, and regional foundations provide support for child abuse and neglect research initiatives. The following sections highlight the notable contributions of the Doris Duke Charitable Foundation, the Annie E. Casey Foundation, Casey Family Programs, the William T. Grant Foundation, and the Stuart Foundation, but generous support to this field of research has been provided by many others.

Doris Duke Charitable Foundation The Doris Duke Charitable Foundation has as part of its mission supporting work that advances the prevention of child abuse and neglect. The foundation supports research fellowships for doctoral students in child abuse prevention and a variety of specific prevention projects, including prevention of abusive head injury (formerly termed shaken baby syndrome).

Annie E. Casey Foundation Work supported by grants from the Annie E. Casey Foundation (AECF) aims to improve the futures of disadvantaged children in the United States through public policy, human-service reform, and community support. The AECF Child Welfare Strategy Group (CWSG) focuses on responsive systems and supportive communities to create lifelong family connections. With its use of an intensive, embedded consulting model, the CWSG collaborates with clients to strengthen agency management, operations, policy, and front-line practice in support of their efforts to improve outcomes for children and families. The AECF KIDS COUNT project is a national and state-by-state effort to track the well-being of children in the United States. The project develops and distributes reports on key areas of well-being, including the annual KIDS COUNT Data Book.

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
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Under the category Safety and Risky Behaviors, data are collected on the numbers of child abuse and neglect cases (both reported and substantiated).

Casey Family Programs Casey Family Programs (CFP) aims to improve foster care and the child welfare system in the United States. CFP research grants support studies that meet the needs of public child welfare jurisdictions and increase their capacity for data-driven decision making, evaluation, and performance monitoring. Specific areas of interest for research funding include preventing child abuse and neglect; accelerating permanency for children in foster care; improving the well-being of the children and families who encounter the child welfare system, including long-term outcomes such as employment, education, and mental health; and understanding the experiences of older youth who exit the child welfare system. From 2000 to 2011, CFP researchers published 60 peer-reviewed articles.

William T. Grant Foundation The William T. Grant Foundation funds research that enhances the lives of youth aged 8-25 through research grants and fellowship programs. Currently, the foundation funds research examining the formal and informal settings that youth inhabit and the use of research evidence about youth in policy and practice. Roughly 33 percent of the recent and ongoing research grants awarded before 2012 have entailed examining family life, and at least five studies have addressed issues related to youth experiences of violence, trauma, and neglect. The foundation also funds two fellowship programs: the William T. Grant Scholars Program supports scholars early in their careers; the William T. Grant Distinguished Scholars Program supports mid-career researchers seeking to work in policy or practice settings and mid-career policy makers and practitioners seeking to conduct research related to the well-being of youth.

Stuart Foundation The Stuart Foundation aims to support the ability of all children to realize their potential by improving the public education and child welfare systems in the states of California and Washington. While the aim is to improve the lives of all children and youth, the foundation strategically funds efforts to reach children in vulnerable environments, whose lives may be most impacted by improved programs and policies. The Stuart Foundation funds three main activities: the development and dissemination of effective, cutting-edge strategies for meeting the needs of children and youth; contributions to effective public policies related to children and youth; and direct delivery of support services for young people. Within the context of promoting data-informed policies and programs, the Stuart Foundation invests in projects that include efforts to gather, analyze, and use data to reveal how most effectively to serve children and youth, including children who have experienced abuse and neglect.

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
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Funding Difficulties

Despite the research support described above, funding for research on child abuse and neglect overall has been inconsistent and inadequate to support the type and extent of research necessary to sufficiently advance the field. In her keynote address for the IOM/NRC workshop “Child Abuse and Neglect Research, Policy, and Practice for the Next Decade: Reflections on the 1993 NRC Report,” Cathy Spatz Widom noted the large increase in medical and psychological articles on child abuse and neglect over the intervening period (IOM and NRC, 2012). She also observed that dedicated funding for child abuse and neglect research had remained constant since 1997, when it totaled $33.7 million; in 2012, it was projected to be $32 million. In an editorial in Pediatrics, “The Evolution of the Child Maltreatment Literature,” Christopher Greeley makes a similar observation about the enormous growth of knowledge “despite the absence of a coordinating national research body and being under resourced” (Greeley, 2012, p. 347). By this measure, child abuse and neglect researchers have been productive. Yet given the enormous social and monetary costs of child abuse and neglect, one might ask why so little funding is designated for research in the field.

Researchers in the field frequently point out that no major federal funder considers child abuse and neglect research central to its primary mission. Child abuse and neglect researchers have the impression that they are not as competitive in the NIH grant review process as researchers investigating childhood disorders with much lower prevalence. This impression is difficult to test, but methodological limitations inherent in child abuse and neglect research could in fact affect the competiveness of grant proposals in the field as compared with many childhood conditions. As discussed earlier, front-line child abuse and neglect research involving alleged or substantiated cases must be conducted in a crisis-driven atmosphere with unique legal, ethical, and organizational complexities. The high level of family dysfunction, frequent family moves or changes in the out-of-home placement of children, and quality problems with child welfare administrative data increase attrition among subjects and the amount of missing data compared with clinic-based research on middle-class families.

Child abuse and neglect research is methodologically messy (Socolar et al., 1995). Much of the investigation and child welfare process is beyond a researcher’s control, and data helpful for statistical corrections generally are not readily available. Grant and journal reviewers steeped in laboratory or clinic-based research designs and methodologies that favor optimizing internal validity often fail to appreciate the severe limitations faced by the front-line child abuse and neglect researcher. The researcher’s inability to control potentially critical variables and the heterogeneity of cases, together

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
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with the complexities of past histories and comorbidities, confound efforts to reduce threats to internal validity. This is especially true for multisite research that must deal with enormous variability in populations, processes, policies, and resources across agencies. External validity and its closely related construct ecological validity, however, can be enhanced under these conditions. Interventions that succeed across diverse sites are more likely to be generalizable to the field as a whole.

Yet another reason suggested for the relative paucity of designated funding for research on child abuse and neglect is that, in contrast with many serious childhood conditions, parental advocacy for such funding is sparse. A recent study looking at 53 diseases found that for every $1,000 spent on lobbying for a given disorder there was a $25,000 increase in NIH funding the following year (Best, 2012). The study also found that less research funding was allocated to disorders associated with social stigma, such as drug and alcohol abuse or smoking, than to nonstigmatized conditions on a per-death basis. Discomfort with the topic may contribute to the sparse designated funds available for child abuse and neglect research.

The considerable costs of child abuse and neglect are distributed across many sectors, including mental health, medicine, drug and alcohol programs, education, social services, unemployment, law enforcement, and the prison system. Because these costs are largely indirect, it is difficult to estimate the potential savings attributable to reducing the problem. Thus, service providers and institutions across many sectors may not fully appreciate the benefit that would accrue to them from reductions in child abuse and neglect, and therefore do not lobby separately or collectively for more effective prevention. On the other hand, a number of professional and social policy organizations and coalitions do actively lobby for child abuse and neglect prevention and changes in child welfare policy.

Training and Mentorship

To fulfill the training mission, a field must have a supply of funded investigators conducting ongoing studies in which trainees can participate and must have access to research training funds to support trainees and new investigators while they learn. Mentors must be competent, involved, and supportive, helping trainees develop new areas of investigation and novel approaches to persistent problems.

National Institutes of Health Career Development Awards

NIH’s Child Abuse and Neglect Research announcement in 1999 encouraged researchers to seek K awards. Participating institutes included NIMH, NINDS, NICHD, NIDA, and NIAAA.

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
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Centers for Disease Control and Prevention

In 1987, CDC funded five interdisciplinary Injury Control Research Centers at leading universities, providing core support and funding for specific projects. The program grew, and currently there are 11 funded centers. Another 8 universities have hosted an Injury Control or Prevention Center since the program began 25 years ago (CDC, 2012b). At least four current or past CDC-supported centers (North Carolina, Pittsburgh, University of Washington, and Washington University of St. Louis) have supported child abuse research as part of their work.

Child Welfare Researchers

Although several policy efforts have focused on enhancing the child abuse and neglect research enterprise, there still are no structured career development opportunities for child maltreatment/child welfare researchers (IASWR, 2008); the field lacks policy supporting a clear researcher development strategy or career trajectory within or across disciplines. Many university-based research centers undertaking child abuse and neglect research are populated by nontenured researchers with little job security. One important component of research capacity is a strong cadre of researchers committed to the field over the long term. To this end, certain key elements should be in place. First, career support at every level and across disciplines should target opportunities to create a sustainable child abuse and neglect research career and capitalize on early interest (in the field of social work, for example, there are doctoral students who have worked in child welfare and seek a doctoral education to build knowledge that will enhance practice and policy). Second, onsite and virtual mentorship and opportunities for networking and socialization are necessary to ensure quality professional development. Third, university/agency partnerships are needed to keep the research grounded in the complex environment of services and enable the research results to inform practice (see IASWR, 2008, regarding the development of partnerships and strategies for maintaining them11). Fourth, community-based participatory research is needed to ensure that the research is meaningful and useful. Finally, a multidisciplinary annual or biannual conference that brings child abuse and neglect researchers together is a good vehicle for sharing research findings (IASWR, 2008).

The Administration on Children, Youth and Families does regularly support both a Head Start research conference and a welfare research and evaluation conference,12 and the Children’s Bureau supports a biannual

 

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11See http://www.socialworkpolicy.org/wp-content/uploads/2007/06/9-IASWR-CW-Research-Partners.pdf (accessed January 27, 2014).

12See http://www.acf.hhs.gov/programs/opre/conferences.html (accessed January 27, 2014).

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
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child abuse and neglect conference and conferences for states and grantees. Although these conferences are not solely focused on dissemination of research, many of the sessions are opportunities for sharing findings from recent child maltreatment research.

Since 2009, the Children’s Bureau has sponsored two National Child Welfare Evaluation Summits, providing funds for state and tribal staff to attend. These meetings have provided an opportunity to present and discuss research on child welfare/child abuse and neglect, but they have not been specific to child abuse and neglect research, nor have they focused especially on career development.

The 1993 NRC report notes that specialized research training in child abuse and neglect did not exist until the mid-1980s, when one such program became available (NRC, 1993). In the late 1980s, a number of efforts were made to develop interdisciplinary graduate programs in child abuse and neglect. Gallmeier and Bonner (1992) reviewed the 10 universities funded by NC Children and Nature Coalition (NCCAN) in 1987 for 3 years to establish interdisciplinary training programs in child abuse and neglect, finding that they trained more than 400 students, 61 percent of whom were involved in some area of child abuse and neglect. Despite recommendations that these pilot programs be continued and replicated at other institutions, no such follow-up was conducted.

Child abuse and neglect research overall lacks the educational infrastructure to create and capitalize on student interest in the field. The relatively few courses devoted exclusively to child abuse and neglect across multiple disciplines signal that it is not a mainstream subject in many areas of research (Champion et al., 2003). In the field of social work, there are large numbers of courses and concentrations geared toward practice, and although many students are interested in pursuing child welfare research, there are no funding streams to support this line of research. The extremely limited federal funding dedicated to child abuse and neglect research can be viewed as further evidence of this gap. The resulting shortage of well-funded mentors and sustainable research programs limits the availability of training for the next generation of child abuse and neglect researchers. While progress has been made since the 1993 report was issued, there remains a strong need to increase support for interdisciplinary research training in child abuse and neglect.

Finding: Child abuse and neglect research encompasses a wide range of disciplines and research problems. Each of these domains has unique research infrastructure needs, methodologies, and agendas.

Finding: Child abuse and neglect is increasingly recognized as a major public health problem. A public health approach to child abuse

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
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and neglect offers a cohesive strategy for this multifaceted problem. A high-quality national surveillance system is needed to collect and analyze data with which to detect and describe aspects of child abuse and neglect, along with attendant risk and protective factors, so as to systematically inform the planning and implementation of public health interventions.

Finding: Among the medical aspects of child abuse and neglect, adequate support is needed for rigorous research to further explore the process and outcomes of both screening and medical evaluation, to examine the validity of abusive head trauma diagnoses, to support the development of more uniform approaches to practice, and to arrive at a medical consensus regarding thresholds for reporting neglect.

Finding: Despite recent federal investments, such as Title IV-E and IV-B training funds, there has been no commensurate investment in child welfare research capacity. With few child welfare researchers being supported by major federal institutional funders, there are few mentors and reviewers in the field.

Finding: While a wide array of public and private funders have made notable contributions to child abuse and neglect research, high-level, national coordination for research in this field is lacking. Funding opportunities have been fragmented and generally insufficient to develop and sustain the capacity for a national child abuse and neglect research enterprise.

Finding: Given the increasing heterogeneity of families in the United States, there is an ongoing need to increase understanding of the role of race and ethnicity in the causes and consequences of child abuse and neglect. Culturally adapted prevention and intervention programs can be evaluated to determine cultural fit, reach, and efficacy.

Finding: Several vulnerable populations, including racial and ethnic minority children (e.g., African Americans, American Indians, Alaska Natives, Latinos), children with disabilities, children of immigrant families, and LGBT youth, are underrepresented in child abuse and neglect research. Information sharing among data systems, targeted research on vulnerable populations, and changes to population-based youth surveys (e.g., adding questions on sexual identity and behavior) could improve understanding and knowledge of the causes and consequences of child abuse and neglect among these populations.

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
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Finding: Data from longitudinal studies are essential for identifying causal pathways between abuse- and neglect-related biological changes and later adult outcomes. Longitudinal analyses also are critical to track outcomes related to the implementation of programs and delivery of services so the planning of interventions can be improved.

Finding: Current national child abuse and neglect surveillance efforts rely heavily on data reported to child welfare agencies. The children encompassed by these reports may represent a minority of total abuse and neglect incidents and can vary based on jurisdictional reporting standards.

Finding: The infrastructure needed to support a high-quality national public health surveillance system for child abuse and neglect is currently lacking. The capacity to develop such a surveillance system will require the linking of data across multiple sources, improved standardization of definitions of child abuse and neglect, and the collection of additional information on risk and protective factors.

Finding: An opportunity to obtain more accurate information on circumstances surrounding child abuse and neglect lies in the recent growth in web technologies and applications, which has expanded the potential for linkage and analysis of survey and administrative data across multiple service sectors. Given the variety of sectors that come into contact with abused and neglected children, linkage of data across multiple sources is important for greater research, practice, and policy synthesis and for examination of risk factors, recurrence or recidivism, and prevention and intervention outcomes.

Finding: Evidence-based classification schemes have brought conceptual and practical coherence to the maturing and interdisciplinary field of prevention research and the implementation of sound prevention strategies. In the past decade, federal agencies have established a number of registries and clearinghouses with a focus on prevention of child abuse and neglect. Yet their varied institutional homes underscore the fragmentation of prevention research across federal agencies and the lack of a unified federal policy and research agenda. Universities and social science research organizations have attempted to unify the evidence base in child abuse and neglect and prevention research.

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
×

CHALLENGES IN CHILD ABUSE AND NEGLECT RESEARCH

A number of factors complicate and confound research on child abuse and neglect and the most effective ways to prevent it and treat its consequences. Many of these factors relate to the complex nature of child abuse and neglect, along with the wide array of research and service domains that have a role in the field. The differing purposes for which information on child abuse and neglect is gathered have resulted in a lack of consistency in definitions and measurement of the problem across studies. Researchers must account for a myriad of co-occurring risk and protective factors in drawing conclusions about the causes or consequences of child abuse and neglect. Research on services must take into account the effects of the various services received by abused and neglected children, which may take place across a number of venues. Occurrences of child abuse and neglect are both serious and sensitive to the parties involved, resulting in difficulties in recruitment of study participants and often necessitating the gathering of data in complex and crisis-prone situations. Finally, difficulties are encountered in coordinating research and service efforts in the field. There is no federal home to monitor and coordinate research across the many relevant domains, and the actions of various providers seldom are sufficiently coordinated. Some of the key research challenges are discussed in detail below.

Lack of Consensus on Definitions and Measurement

The 1993 NRC report (Recommendation 2-1) calls for an expert panel to develop a consensus on research definitions for each form of abuse and neglect (NRC, 1993). Two recent reviews of child abuse and neglect research strategies and priorities highlight the multiple problems created for researchers and policy makers by the failure to implement this recommendation (MacMillan et al., 2007; Whitaker et al., 2005). Both reviews note that without agreement on definitions and measures, the national epidemiologic surveillance studies necessary for the implementation of a public health approach to the prevention of child abuse and neglect are impossible.

The field’s persistent inability to develop a consensus on definitions and measures likely reflects the diversity of research disciplines and domains involved. In addition, authorities note an increase in the number of types of child abuse and neglect being reported as a result of growing awareness of the pernicious effects of more “subtle” forms, such as emotional abuse and emotional neglect (Gilbert et al., 2012). Others point to data indicating that the majority of children seen in the child abuse and neglect system are victims of multiple forms of abuse and neglect (Finkelhor et al., 2009). These explanations for the persistent lack of consensus on definitions indicate that a rigid set of standard definitions would be prohibitively difficult to create

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
×

and likely counterproductive for research purposes. While the child abuse and neglect research field is currently hampered by a lack of agreement on definitions and measures, consensus definitions must be flexible to be useful and relevant.

Coexisting and Confounding Risk and Protective Factors

Child abuse and neglect does not occur in a vacuum. It is associated with familial factors such as domestic violence, parental substance abuse, poverty, and parental mental illness, as well as community violence and adversity. A number of studies have found a roughly stepwise dose response of increased morbidity as a function of the number of different types of abuse and neglect and family dysfunction experienced by an individual (Appleyard et al., 2005; Flaherty et al., 2009). This cumulative increase occurs for a variety of serious physical and mental health outcomes, as well as for health risk behaviors and phenomena such as smoking, drug use, and obesity. Critiques of child abuse and neglect research frequently point to the failure to measure confounding risks factors as a major flaw in many studies (MacMillan et al., 2007; Putnam-Hornstein et al., 2013; Whitaker et al., 2005). Researchers investigating causal pathways or the effectiveness of interventions face the task of measuring and controlling for these coexisting risk factors and their cumulative and potentially synergistic impact on the outcomes of interest (Putnam et al., 2013). Expertise in the measurement of these confounding variables cuts across research disciplines, necessitating the multidisciplinary, multimodal approach to abuse and neglect research discussed earlier in this report.

Differential Receipt of Additional Services Within Study Samples

Families served by the child welfare system frequently receive other services, including drug and alcohol counseling and treatment; family support services such as home visiting; and parenting, mental health, medical, special education, and financial support. In some instances, these services are legally mandated or are required as a condition of eligibility for other benefits. In a representative sample, it is impossible for an investigator to control for the diversity of configurations of such additional services (not to mention their timing and intensity). Thus, investigators seeking to isolate the effects of their intervention have difficulty modeling these other influences.

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
×

Participant Recruitment

The 1993 NRC report expresses concern about sample selection bias in child abuse and neglect research, including overrepresentation of groups of lower socioeconomic status and reliance on clinical samples of convenience (NRC, 1993). The issue of the extent to which child abuse and neglect study samples are representative of the larger population of families affected by the problem has received little attention in the literature. However, this issue has the potential to invalidate or severely bias data derived from these studies. In a prospective, case-control study of Australian children and their families, for example, 25 percent of the 103 nonparticipating families that met criteria for child sexual abuse declined to participate in the research (Lynch et al., 1993); however, the other 75 percent were never referred to the study by their social workers, who cited family dysfunction as their primary reason for nonreferral. Based on a comparison of participants and nonparticipants, the investigators concluded that the most dysfunctional families were the least likely to participate in the research. Feehan and colleagues (1995) later challenged the conclusion that dysfunctional families are less likely to participate in research, arguing that their nonparticipation most often is the result of a social worker’s decision, not the family’s (Feehan et al., 1995).

The other side of this question is whether research explicitly identified as focused on trauma or abuse and neglect may selectively attract subjects who have experienced abuse and neglect (Amsel et al., 2012). A randomized trial of psychotherapies for posttraumatic stress disorder found that 17 percent of the 223 consecutive subjects applying to the study were rejected because of psychotic symptoms. These subjects were likely to be males who suffered child abuse or neglect. An earlier survey of the child abuse and neglect literature found that male subjects were included in fewer than half (47.7 percent) of the 77 articles reviewed, and only 3 studies focused on males exclusively, compared with 40, including only females (Haskett et al., 1996). Thus at least two factors—family dysfunction and male gender—have been identified as potential confounders of the representativeness of abuse and neglect research samples. It is likely that the legal jeopardy inherent in this research, with its mandated reporting of future abuse, also discourages participation by some families (Melton, 2005), although reporting of abuse experienced by children already involved in a longitudinal study has been observed to have little impact on retention (Knight et al., 2006).

Complex and Crisis-Prone Front-Line Research Settings

Allegations of child abuse and neglect require rapid responses from the child protection system. In addition to the child at the center of the al-

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
×

legation, there are frequently siblings or other children potentially at risk who must be evaluated and provided safety as needed. When warranted by preliminary findings, law and policy typically require that a child safety plan, possibly including out-of-home placement, be implemented within 24-48 hours of receipt of the allegation. At this early stage and under these time pressures, critical decisions often must be made on the basis of imperfect information. These decisions can affect the life trajectories of whole families—for better or for worse. Remarkably little research has been conducted on risk assessment and decision making in front-line settings.

Children and their families frequently are interviewed in busy hospital emergency rooms, intimidating police stations, schools, and other settings not conducive to research. Research needs are trumped by the tension, confusion, distress, fear, and anger experienced by parents; the pressures on child welfare and medical professionals to make the right call based on sometimes ambiguous information; and the need to document the investigative process thoroughly for possible criminal proceedings.

Nonetheless, the process and content of child protection investigations and decision making is a critical area for research. Child protection is the primary pathway into the child welfare system. Very little is known about day-to-day risk assessment and decision making in child protection agencies. Most research on factors that influence risk assessment and decision making relies on simulation studies and surveys of child protection workers responding to case vignettes (Jent et al., 2011; Proctor and Azar, 2013; Stokes and Schmidt, 2012). It is known, however, that these workers experience their jobs as stressful and show high rates of secondary posttraumatic stress disorder and job burnout (Jayaratne et al., 2004; LeBlanc et al., 2012). Research in front-line settings offers opportunities to improve the assessment of risk and reduce stress on children, families, and child protection workers.

Lack of a Federal Home for Child Abuse and Neglect Research

The 15 most published U.S. investigators in the fields of child abuse and neglect have generated a total of 790 published papers, as recorded in Web of Science.13 Funding support is reported in just 47 of these papers. The leading supporters were five different NIH institutes; CDC; the Administration on Children, Youth and Families; and the Doris Duke Charitable Foundation. The leading funder, NIMH, supported just 1.8 percent of the 790 papers. CDC supports prevention of child abuse as part of the mission of the NCICP but has only one grant cycle per year, and in 2011 funded no new grants in child abuse. New investigators in the field have no cadre

 

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13Accessed November 25, 2012.

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
×

of established investigators or centers to turn to for support and guidance such as exists in many laboratory sciences. Review committees have little or no expertise in child abuse among their members as there are so few experienced investigators supported by NIH who are invited to sit on study sections. The paucity of knowledgeable reviewers leads to inexpert reviews and a lack of champions for research in the field; thus, perpetuating the absence of a home for child abuse and neglect research. With little success in securing funding, the field continues to be an orphan research area. A review panel on injury and violence is needed with appropriate experience and expertise to apply the strict standards for extramural support that have become standard at NIH, and with knowledge of the field and an appreciation of the need for innovation and new information.

Difficulties of Translating Research Findings into Policy and Practice

As discussed earlier, child welfare policies often are drafted in response to a tragic case that receives widespread media coverage (Gainsborough, 2010). Although theory-driven child abuse and neglect prevention policies have been articulated (e.g., social learning theories of intergenerational violence, psychoanalytic theories of parental psychopathology, environmental theories of poverty and adversity), none of these theories has proven sufficiently successful in practice to become a dominant approach to child abuse and neglect policy (Putnam-Hornstein et al., 2013). An analysis of the impact of changes in child welfare policy on abuse and neglect trends from 1979 to 2009 in six developed nations (Australia, Canada [Manitoba], England, New Zealand, Sweden, and the United States) found little evidence that new prevention initiatives had any detectable effects (Gilbert et al., 2012).

Putnam-Hornstein and colleagues (2013) argue that the failure to develop theory-driven prevention policies for child abuse and neglect stems from the lack of empirical population-based data on family and environmental risk factors and long-term abuse and neglect outcomes. They note that current child abuse and neglect trend studies depend largely on retrospective and time-limited data derived from child protection cases and lack the broader focus and key variables, including important confounders, necessary to inform prevention policies. As a possible solution, the authors point to international efforts to enhance current child protection data by case linking the data to existing health, education, and family welfare administrative datasets. These additional data generate a larger context in which to examine family factors, demographics, socioeconomic status, and community variables as contributers to the risk for abuse and neglect and as targets for prevention policies.

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
×

Traditional Silo Nature of Child Abuse and Neglect Services

The previously presented overview of child abuse and neglect research domains reflects the many systems that interact, largely independently, with abused and neglected children and their families. In many jurisdictions, abused and neglected children and their families pass through multiple agencies as their cases are processed and they receive services. Each system has its own mission, expertise, agenda, and obligations to fulfill. The systems are staffed by different disciplines, collect different types of information, and are focused on different outcomes. Often workers in one system are only vaguely aware of what other systems and services do or how they work. Misconceptions about roles and capacities are not uncommon.

Although some coordination may exist across state or county agencies at the top leadership levels, out-of-system transfers and follow-up at the basic services level often encounter difficulties. Referrals frequently contain minimal information, requiring the receiving agency to collect duplicate information and reassess the case. In part, this duplication occurs because of concerns about protecting confidentiality or, in some instances, because a legal action may be pending. Children and families become resentful of having to tell their story multiple times and to fill out forms requesting information they have previously provided.

Conducting research that requires integrating data across multiple child- and family-serving systems is extremely difficult. In addition to the inevitable hardware and software incompatibilities, separate systems collect different types of data and code and process the data in different ways, greatly complicating case linkage. Legal restrictions, often confounded by confusion about what constitutes confidential information, inhibit data sharing. Most agencies lack the expertise in data management and statistical analysis to conduct research with their own or combined datasets. In response to this need, Chapin Hall at the University of Chicago established administrative data institutes for child welfare managers in the early 1990s. To foster the integration of research with policy and practice, Chapin Hall has since 2007 offered annual sessions in advanced analytics for child welfare administration, which focuses on the use of longitudinal administrative data in child welfare decision making, program planning, and outcome monitoring.14 Agencies also view the value of research and its relevance to their practice differently. Thus in many jurisdictions, the integrated, cross-system research necessary to understand the causes, consequences, and prevention of child abuse and neglect cannot be conducted.

 

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14See http://www.chapinhall.org/events/advanced-analytics-child-welfare-administration-june-2012 (accessed January 27, 2014).

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
×

Finding: The complex nature of child abuse and neglect as a topic for both services and empirical research leads to the involvement of many different systems and research domains. This multiplicity presents a number of challenges for conducting research in the field. The establishment of uniform definitions and measures for all types of child abuse and neglect has proven difficult, mainly because of the diversity of research disciplines involved and the varying sources from which data are drawn. Children and families receiving services related to child abuse and neglect often are eligible to receive services from other systems, which can pose problems for researchers as diversity in the type, timing, and intensity of such additional services can be difficult to account for in studying the effects of child abuse and neglect interventions. Further, a number of potentially important cross-disciplinary outcomes may be impacted by intervention research. However, only specific outcomes of interest often are accounted for in study designs, neglecting the influences on other, relevant outcomes.

EXISTING OPPORTUNITIES TO CREATE AN INTEGRATED
CHILD ABUSE AND NEGLECT RESEARCH INFRASTRUCTURE

Fortunately, major developments have occurred since the 1993 NRC report was issued that offer opportunities to create an integrated child abuse and neglect research infrastructure that can bridge the separate systems and services discussed above. The following sections highlight several notable efforts to bring interdisciplinary collaboration to child abuse and neglect research and service delivery.

Child Advocacy Centers

The child advocacy center (CAC) model originated in the 1980s to address problems of investigational redundancy, lack of interagency coordination, and stress on children and families engendered by the confusing multiagency child protection process, in most instances for children who have experienced sexual abuse. CACs are designed to be child-friendly settings in which multidisciplinary investigational teams represent the core disciplines and services involved in child welfare. The usual CAC team consists of trained forensic interviewers and representatives of law enforcement and prosecution, social work, pediatrics, and mental health. Efforts are made to interview the child as few times as possible (usually only once) and to limit system contacts for the family to one or two key staff. The CAC team reviews cases of alleged abuse and neglect, integrating medical, social, and forensic findings with other pertinent information, as well as recommending courses of action and possible services. The decision to substantiate a find-

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
×

ing of abuse and neglect usually is made, however, by the legally designated child protection agency, utilizing input from the CAC team.

In the past 20 years, the number of CACs has grown significantly, such that there are now more than 750 CACs in the United States.15 A number of states are further encouraging adoption of the CAC model with legislated funding. A national membership organization, the National Children’s Alliance (NCA), provides training, support, technical assistance, and leadership for local CACs and accredits programs meeting its criteria.

In general, CACs currently are not conceived of as sites for collecting data and conducting high-quality, multidisciplinary research, but they represent an opportunity to enhance the child abuse and neglect research infrastructure. In fact, in the past decade, the number of CAC-type programs affiliated with university medical centers has increased significantly. University-affiliated CACs in particular have access to the human and physical capital required for a high-quality child abuse and neglect research infrastructure. In addition, they can offer researchers from outside the child abuse and neglect field access to an infrastructure within which to conduct longitudinal, case-based, cross-system, multidisciplinary research.

The Subspecialty of Child Abuse Pediatrics

The proposal to develop a new pediatric subspecialty grew out of the Ray E. Helfer Society and a conviction of some of its members that research and research support in child abuse and neglect were limited by the paucity of investigators with both research and clinical knowledge in the field. The first application to the American Board of Pediatrics was not accepted, but after two revisions and a change in name from Forensic Pediatrics to Child Abuse Pediatrics, the new subspecialty was approved by both the American Board of Pediatrics and the American Board of Medical Specialties. The training encompasses 3 years, including a year of research training. The first board examination was offered in 2009 (Block and Palusci, 2006). Currently there are 264 board-certified child abuse pediatricians.16 Subspecialty certification is not open to physicians in other specialties, but other certified specialists in family medicine, child psychiatry, pathology, radiology, and surgery are major investigators in the field.

 

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15See http://www.nationalchildrensalliance.org/index.php?s=6 (accessed January 27, 2014).

16See http://www.abp.org (accessed November 15, 2012).

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
×

Collaboration of Child Welfare, Courts, and
Social Services and Emphasis on Evaluation

The past two decades have seen a growing emphasis on fostering coordination and collaboration across the legal and social service systems that serve abused and neglected children and vulnerable families. A related development has been the increasing federal emphasis on the implementation of evidence-based practices (Haskins and Baron, 2011). A by-product of these developments is an increasing emphasis on evaluation, which is often multidisciplinary.

The State Court Improvement Program (CIP), discussed in detail in Chapter 5, is one example of a mechanism for encouraging coordination and collaboration (Children’s Bureau, 2007). As noted in Chapter 5, efforts toward system improvement under the State CIP include coordination activities between child welfare agencies and the courts that encompass joint agency-court training, linked agency-court data systems, one judge/one family models, time-specific docketing, and formalized relationships with the child welfare agencies.17 Similar coordination takes place under the Tribal CIP, created in 2011.

Interagency collaboration and rigorous evaluation are central to several other programs discussed in Chapter 5. The first is a grant program, funded under the Child and Family Services Improvement Act of 2006, aimed at improving permanency outcomes for children affected by methamphetamine and/or substance abuse. As described in Chapter 5, this program awarded more than 50 regional partnership grants in FY 2007 to strengthen cross-system collaboration and service integration through a number of strategies, including family treatment drug courts, increased staffing to address shortages in both child welfare services and substance abuse treatment systems, reconciliation of conflicting time frames across legal and treatment systems to achieve desired outcomes, and use of evidence-based practice approaches and delivery of trauma-informed services. This emphasis on collaboration has continued under the Child and Family Services Improvement and Innovation Act (P.L. 112-34), which includes a targeted grants program for regional partnership grants to improve the well-being of children affected by substance abuse. And in FY 2012, the Children’s Bureau awarded 17 grants to grantees with demonstrated collaborative infrastructure in place across child welfare, substance abuse treatment and mental health agencies, and the courts. Grantees must track performance indicators that form the

 

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17See http://www.acf.hhs.gov/programs/cb/resource/court-improvement-program (accessed January 27, 2014).

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
×

basis of an annual Report to Congress and conduct rigorous impact evaluations of child and family outcomes.18

The National Child Traumatic Stress Network

The National Child Traumatic Stress Network (NCTSN), also described in detail in Chapter 5, is a multidisciplinary trauma treatment services-based network that could potentially serve as a national child abuse and neglect/family trauma research infrastructure. As discussed in Chapter 5, the NCTSN has a long track record of high-quality program evaluation and a core data system with detailed trauma histories on more than 14,000 children and adolescents. This dataset and the connections established by the NCTSN among communities, systems, and academic institutions could be leveraged to enable high-quality, multidisciplinary child abuse and neglect research.

Ad Hoc Child Abuse and Neglect Research Networks

As discussed in Chapter 2, more than 3 million children are reported to child protection authorities each year, but many of these children are reported multiple times, and only one-third of reported cases are founded or confirmed. Given the wide variety of forms of abuse and neglect and the overrepresentation of some children in the data, specific forms of abuse and neglect, such as abusive head trauma, Munchausen syndrome by proxy, or inflicted burns, may be sufficiently uncommon that careful research on them may be difficult in any one setting. Important work in other areas, such as neonatal intensive care, pediatric cancer, or pediatric intensive care, for which similar issues of statistical power at a single institution exist has been supported by research networks. These networks are invaluable in advancing the science for serious but less common conditions. There are few examples of research networks in child abuse and neglect, but several are noteworthy.

Organized originally out of the University of Virginia and now at Dartmouth Medical School, the Pediatric Brain Injury Research Network, or PediBIRN, is a consortium of investigators whose aim is to develop an effective clinical prediction rule for pediatric abusive head trauma.19 This group has published a multicenter study examining outcomes for inflicted

 

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18The National Center on Substance Abuse and Child Welfare provides assistance to local, state, and tribal agencies to support systems and practice change for families with substance use disorders that are involved in the child welfare and family judicial systems. This resource is funded jointly by the Substance Abuse and Mental Health Services Administration’s Center for Substance Abuse Treatment and the Children’s Bureau.

19See www.pedibirn.com (accessed January 24, 2014).

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
×

and noninflicted traumatic brain injuries in infants (Hymel et al., 2007). This network remains active and continues working toward the goal of a prediction rule.

The Examining Siblings to Recognize Abuse (ExSTRA) research network is a multicenter, observational, cross-sectional network of 20 child abuse teams that have adopted a common screening protocol for the siblings and household contacts of children younger than 10 evaluated for potential physical abuse. This network has produced three studies to date.

Sharing many of the same investigators, a group of 19 collaborators with a subspecialty in child abuse formed a network of investigators to develop data prospectively regarding evaluation for abdominal trauma. The Using Liver Transaminases to Recognize Abuse (ULTRA) network enrolled 1,676 children between 2007 and 2008 who were younger than age 5 and had undergone subspecialty evaluation for suspected abuse. This network has developed important data on occult abdominal trauma related to physical abuse.

Another example of network development is the Multistate Foster Care Data Archive, maintained through Chapin Hall. This network is used by multiple states and has been encouraged by CFP because of the importance, mentioned above, of using administrative data to guide practice improvements.

Finally, the National Data Archive on Child Abuse and Neglect (NDACAN), which is hosted by Cornell University and funded by the Children’s Bureau, maintains Child-Maltreatment-Research-L (CMRL).20 CMRL is a listserv whose goal is to create space for scholarly discussion among the hundreds of subscribing child abuse and neglect researchers. This online network is used primarily for sharing information about professional events relevant to the field, new resources for research that may become available, employment opportunities for child abuse and neglect research experts, and requests for information and assistance. Direct conversation about issues and opinion sharing are explicitly discouraged.

Child Abuse and Neglect Research Centers

The 1993 NRC report recommends the development of child abuse centers to address research needs in the field (NRC, 1993). Likewise, the 2001 IOM report Confronting Chronic Neglect, examining training in family violence in health professions schools, calls for the development of specialized research centers in violence (IOM, 2001). In reviewing NIH’s disease-focused research centers at academic institutions in 2004, the IOM

 

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20See http://www.ndacan.cornell.edu/NDACAN/CMRLListserv.html (accessed January 27, 2014).

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
×

stated that these centers are important when “the scientific opportunities and/or public health needs that the program would address have high priority” (IOM, 2004, p. 95). The IOM argued that the centers provide a platform supportive of interdisciplinary collaborations by facilitating multi-investigator teams that can develop activities often not possible under other funding mechanisms. A similar program of extramural centers addressing injury broadly has been developed by the NCIPC. These centers have been quite successful in expanding research focused on injury and increasing the number of trainees interested in the field (Runyan et al., 2010).

The Kempe Center for the Prevention and Treatment of Child Abuse was established in 1972 with support from the Robert Wood Johnson Foundation and was an early leader in child abuse research (Krugman et al., 2013). Three years later, Dr. David Chadwick founded a clinical and research center at Rady Children’s Hospital in San Diego, California.21 Several other centers that combine clinical care for and research on child abuse have been developed around the country over the years in response to local supporters and advocates; a number of these centers have had periods of funding by the NCTSN.22 Perhaps the most recent is a new center combining clinical care and research at Pennsylvania State University.23 These centers have struggled to meet the potential outlined by the IOM (2004) but have suffered from a lack of support by agencies that fund research in the field of child abuse (IOM, 2004).

The Child Welfare Research Center in the School of Social Welfare at the University of California, Berkeley, conducts groundbreaking research on a variety of child welfare issues, including adoption, case management, foster care, and welfare reform, and has been a leader in the state and nationally in the use of administrative data. Its main support comes from the state and a California-based foundation, although it was originally launched when the Children’s Bureau funded three interdisciplinary research centers—at Berkeley, at the Center for the Study of Social Policy, and at Chapin Hall—in the early 1990s. The work of Putnam-Hornstein cited in this report is an outgrowth of the center’s important contributions.

As seen in the long-standing research collaboration between the Illinois Department of Child and Family Services and the Child and Family Research Center at the University of Illinois School of Social Work, ongoing data monitoring and analysis have facilitated system-level reform. The result has been a better understanding of risk factors for child maltreatment; monitoring of safety risk, permanency trajectories, and well-being

 

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21See www.Chadwickcenter.org (accessed March 7, 2014).

22See www.nctsn.org (accessed March 7, 2014).

23See http://www.pennstatehershey.org/web/protection-of-children/home/about (accessed March 7, 2014).

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
×

BOX 7-3
Pediatric Acquired Brain Injury Centers

A proposal currently being considered in Congress would establish 50 state Pediatric Acquired Brain Injury Centers. These centers would support clinical care, rehabilitation services, prevention activities, and research for brain injuries in children, including those related to both child abuse and sports, as well as unintentional injuries from other sources. It is too early to know whether this proposal will succeed. It follows in the footsteps of an earlier proposal in the early 2000s, supported by the American Academy of Pediatrics, to develop a number of child abuse centers in academic medical centers. That proposal, to form Health Child Abuse Research and Evaluation Centers, never received support from any federal agency or Congress and did not move forward.

BOX 7-4
The Early Experience, Stress, and Neurodevelopment Center

The Early Experience, Stress, and Neurodevelopment Center is an example of an effective multidisciplinary infrastructure for translational research on child abuse and neglect and for training for a new generation of translational researchers. The center had its origins in a 1998 call for proposals from the National Institute of Mental Health. The center was initially directed by Megan Gunnar, who studies stress and human development, and Paul Plotsky, who studies early-life stress in rodent models. The project period for the mature center, with Director Megan Gunnar and Associate Director Philip Fisher, runs from March 2009 through February 2014.

The center has 14 faculty members representing nine universities and research centers and brings to bear a range of expertise critical to understanding the impact of early-life stress on neurobehavioral development. The center’s staff includes researchers who work predominantly with animal models, both rodent and nonhuman primate, as well as researchers studying human development. Their areas of expertise range from basic neuroscience to developmental psychopathology and prevention science. The center integrates basic developmental behavioral neuroscience research using nonhuman primate and human models to increase understanding of the behavioral and neurobiological impacts of early-life stress and to identify care experiences that support recovery. Preventive intervention researchers guide the center’s research so that future interventions can benefit from this more comprehensive knowledge base.

Over 14 years, this center has been influential in advancing the field toward a more integrated understanding of the developmental sequalae of neglect and

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
×

outcomes; identification of disparities in system contact; mapping of client access to services and treatment; and planning initiatives in response to risk factors and needs (McEwen et al., 2011).

Box 7-3 describes a current proposal for state Pediatric Acquired Brain Injury Centers. Box 7-4 describes the Early Experience, Stress, and Neurodevelopment Center.

Finding: Various interdisciplinary collaborations focused on the delivery of child abuse and neglect services, such as those found in CACs, the state CIP, and national traumatic stress networks, have improved coordination of services and can serve as venues for interdisciplinary research. Research collaboratives, such as ad hoc child abuse and neglect research networks and various privately supported child abuse and neglect research centers, serve as a model for support of the multidisciplinary research necessary to advance the field of child abuse and neglect research.

abuse. It has faciliated communication between scientists conducting basic research and those focused on the application of that work to preventive interventions for young children and their families.

The structure of the center is depicted below. Methods used by the center include behavioral observations, electrophysiology (e.g., electroencephalogram), observation of neuroendocrine activity (hypothalamic-pituitary-adrenal axis) under basal conditions and in response to psychological and pharmacological challenges, in vivo neuroimaging (magnetic resonance imaging, diffusion tensor imaging, magnetic resonance spectroscopy), and neurobehavioral tasks of amygdala and prefrontal functioning.

image

NOTE: Administrative Core not shown.

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
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CONCLUSIONS

Child abuse and neglect research is fraught with complexities. Research in the field involves diverse independent service systems, a number of related research domains, multiple professions, ethical issues that are particularly complicated, and levels of outcome analysis ranging from the individual child to national statistics. It has been difficult to establish uniform definitions and measures for all types of child abuse and neglect, mainly because of the diversity of research disciplines involved and the varying sources from which data are drawn. Researchers also must account for a myriad of co-occurring risk and protective factors in drawing conclusions about the causes or consequences of child abuse and neglect. In addition, children and families receiving services related to child abuse and neglect often are eligible to receive services from other service systems. This can pose problems for researchers as diversity in the type, timing, and intensity of such additional services can be difficult to account for in studying the effects of child abuse and neglect interventions. Further, a number of potentially important cross-disciplinary outcomes may be impacted by intervention research.

These challenges highlight the need for a sophisticated, multidisciplinary research infrastructure. Despite notable efforts to support child abuse and neglect research by a number of public and private sources, significant components of the field’s infrastructure remain inadequately developed. Future efforts need to focus on recruiting and training a dedicated and capable cadre of researchers, securing stable sources of research funding, and developing sufficient physical capital to conduct research based on sophisticated designs. Also needed are interdisciplinary collaboration and the integration of cross-disciplinary methodologies and measures to yield more robust study designs. There remains a need as well for a nationally coordinated investment in the types of research necessary to advance the field. No one federal agency provides oversight of child abuse and neglect research investments. A high-level federal mechanism to coordinate and track all federally funded research on child abuse and neglect is needed.

A high-quality population-based epidemiological surveillance system that draws on multiple data sources is critically necessary for the development of a national strategic approach to child abuse and neglect. The capacity to support more universal application of data linkage efforts among the many sources of child abuse and neglect information needs to be developed. Continued federal investment in nationally representative longitudinal studies, quality improvements in administrative data, and the timely dissemination of public-use data files are essential for understanding how the type, timing, extent, and chronicity of abuse and neglect affect children’s and adolescents’ psychosocial and behavioral development and for

Suggested Citation:"7 Research Challenges and Infrastructure." Institute of Medicine and National Research Council. 2014. New Directions in Child Abuse and Neglect Research. Washington, DC: The National Academies Press. doi: 10.17226/18331.
×

developing population- and community-level practice and policy responses to prevent and ameliorate abuse and neglect. Further, research needs to be conducted with the appropriate methodological sensitivity to adequately analyze the impact of culture and other social factors that may inform the causal pathways of child abuse and neglect, particularly for marginalized and/or underresearched populations.

Finally, the formation of child abuse and neglect research centers presents an important opportunity not only to develop and sustain a volume of high-quality interdisciplinary research related to child abuse and neglect but also to train and support a new generation of child abuse and neglect researchers to ensure the growth of the field.

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Each year, child protective services receive reports of child abuse and neglect involving six million children, and many more go unreported. The long-term human and fiscal consequences of child abuse and neglect are not relegated to the victims themselves—they also impact their families, future relationships, and society. In 1993, the National Research Council (NRC) issued the report, Under-standing Child Abuse and Neglect, which provided an overview of the research on child abuse and neglect. New Directions in Child Abuse and Neglect Research updates the 1993 report and provides new recommendations to respond to this public health challenge. According to this report, while there has been great progress in child abuse and neglect research, a coordinated, national research infrastructure with high-level federal support needs to be established and implemented immediately.

New Directions in Child Abuse and Neglect Research recommends an actionable framework to guide and support future child abuse and neglect research. This report calls for a comprehensive, multidisciplinary approach to child abuse and neglect research that examines factors related to both children and adults across physical, mental, and behavioral health domains—including those in child welfare, economic support, criminal justice, education, and health care systems—and assesses the needs of a variety of subpopulations. It should also clarify the causal pathways related to child abuse and neglect and, more importantly, assess efforts to interrupt these pathways. New Directions in Child Abuse and Neglect Research identifies four areas to look to in developing a coordinated research enterprise: a national strategic plan, a national surveillance system, a new generation of researchers, and changes in the federal and state programmatic and policy response.

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