Advancing Research in Child Suicide: A Call to Action

Advancing Research in Child Suicide: A Call to Action

Journal Pre-proof Advancing Research in Child Suicide: A Call to Action Lynsay Ayer, PhD, Lisa Colpe, PhD, Jane Pearson, PhD, Mary Rooney, PhD, Eric M...

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Journal Pre-proof Advancing Research in Child Suicide: A Call to Action Lynsay Ayer, PhD, Lisa Colpe, PhD, Jane Pearson, PhD, Mary Rooney, PhD, Eric Murphy, PhD PII:

S0890-8567(20)30130-1

DOI:

https://doi.org/10.1016/j.jaac.2020.02.010

Reference:

JAAC 2927

To appear in:

Journal of the American Academy of Child & Adolescent Psychiatry

Received Date: 10 December 2019 Revised Date:

14 February 2020

Accepted Date: 25 February 2020

Please cite this article as: Ayer L, Colpe L, Pearson J, Rooney M, Murphy E, Advancing Research in Child Suicide: A Call to Action, Journal of the American Academy of Child & Adolescent Psychiatry (2020), doi: https://doi.org/10.1016/j.jaac.2020.02.010. This is a PDF file of an article that has undergone enhancements after acceptance, such as the addition of a cover page and metadata, and formatting for readability, but it is not yet the definitive version of record. This version will undergo additional copyediting, typesetting and review before it is published in its final form, but we are providing this version to give early visibility of the article. Please note that, during the production process, errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. © 2020 Published by Elsevier Inc. on behalf of the American Academy of Child and Adolescent Psychiatry.

Advancing Research in Child Suicide: A Call to Action RH=Child Suicide Research Gaps Lynsay Ayer, PhD, Lisa Colpe, PhD, Jane Pearson, PhD, Mary Rooney, PhD, Eric Murphy, PhD Accepted February 27, 2020 Dr. Ayer is with RAND Corporation, Arlington, VA. Drs. Colpe, Pearson, Rooney, and Murphy are with the National Institute of Mental Health, Rockville. The authors have reported no funding for this work. The authors would like to thank Eve Reider, PhD and Galia Siegel, PhD, of the National Institute of Mental Health, for their helpful comments on a previous version of this manuscript. The views included in this manuscript are those of the authors and do not necessarily represent the views of the National Institute of Mental Health. Disclosure: Drs. Ayer, Colpe, Pearson, Rooney, and Murphy have reported no biomedical financial interests or potential conflicts of interest. Correspondence to Lynsay Ayer, PhD, RAND Corporation, 1200 South Hayes Street, Arlington, VA 22202; e-mail: [email protected]

Abstract Objective: To highlight the problem of child suicide, summarize what is known and not known about the problem in the empirical literature, and provide recommendations with ethical considerations for future research and practice. Method: The development of this paper was informed by a meeting of national experts on the topic hosted by the National Institute of Mental Health, as well as by a review of the empirical literature. Results: We know some about demographic characteristics that are related to higher child suicide rates, but beyond that we know relatively little about risk factors, prevention and intervention for suicide risk in children younger than 12 years. It is important for child suicide researchers and practitioners to pay particular attention to ethical issues that may be likely to arise in doing this type of work. Conclusion: Much more research is needed on child suicide in the areas of measurement, prevention and intervention in order to advance the field and provide practitioners with the tools they critically need.

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The death of a child by suicide can have long-lasting effects on families, schools, medical providers, and communities.1-4 While relatively rare, the tragic loss of a child to suicide is becoming more frequent in some sectors of the population.5 Yet as a field we know very little about how to measure and mitigate child suicide risk given the limited amount of research that has focused on this topic to date. There is an urgent need for better understanding of how to identify young children at risk, treat children experiencing suicidal thoughts and behaviors, and prevent suicide in this age group. Here we present the current state of the science of child suicide risk, with an emphasis on epidemiology, risk and protective factors, and prevention. Given the notable gaps in the existing literature highlighted in this review, there is an urgent need for additional studies focused on assessing suicide-related thoughts and behaviors, identifying malleable factors underlying suicide risk, and the development and testing of interventions poised to have a near-term impact on clinical practice. Key directions for future research and practice are highlighted with an eye toward the ethical considerations that are paramount to conducting work in this field. This paper is inspired in large part by discussions held with leaders in the field at an impactful NIMH-sponsored meeting, Identifying Research Priorities in Child Suicide Risk, in May 2019.6

What We Know Epidemiology of Child Suicide Suicide is the second leading cause of death among adolescents and young adults (ages 10-24) and the ninth leading cause of death among children (ages 5-11).7 Suicide rates for children and adolescents have been increasing over time,8 and suicidal ideation and attempts 2

account for an increasing proportion of emergency department and inpatient visits at children’s hospitals nationwide.9 While the number of suicides among children ages 5 to 11 remains relatively small (n=634 children between 2001 and 2017) and occurs less frequently than among adolescents (1.09 suicides per 1 million 5-11 year olds10 vs. 1.98 per 100,000 10-14 year olds and 9.75 per 100,000 15-19 year olds11),7 the consequences of each death for families, schools, and communities are devastating.1-3 Studies have found an increase in parent mortality following the death of a child, particularly when that death is sudden or unnatural.2 Studies have also shown that suicide survivors are at increased risk for PTSD, complicated grief and suicidal ideation or death.12 And, within a school context, risk of serious suicidal ideation/behavior following a youth suicide is elevated across a broad swath of students who have experienced concomitant negative life events.4 Furthermore, there is longitudinal evidence that suicidal thoughts in early childhood are a risk factor for continued suicidal thoughts later in childhood and for suicide ideation and attempts in adulthood.13,14 This and other research underscores that all child suicide attempts—including those involving low lethality-methods--must be taken very seriously.15 In considering the incidence and impact of child suicide, it is important for researchers and practitioners to note that suicide is underreported in general - particularly suicides involving drug overdose - and that variations in reported suicide rates can be partly attributed to the differing thresholds of evidence state medical examiners require to rule a death a suicide.16 Therefore, national estimates of child suicide are likely to underrepresent the extent of this problem. Figure 1 provides more detail on how states investigate and report on death data and how these resources may be useful to

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child suicide researchers as well as to practitioners seeking to put published research in context.

Challenges With Using and Interpreting Child Suicide Data To accurately interpret child suicide and other death data, it is important to understand the strengths and challenges associated with death determinations. In the US, state Child Death Review / Child Fatality Review (hereafter CDR) is a process in which multidisciplinary teams meet to compile and discuss case information to understand how and why children have died with the ultimate goal to identify actions that can be taken to prevent future deaths. Every state and the District of Columbia has a CDR system. While each has a designated agency and person lead for its CDR process, they vary in CDR team composition, level of support, and in other state-specific respects. A National Fatality Review Case Reporting System (NFR-CRS) has been created to house and combine state CDR data so they may be combined and analyzed. https://www.ncfrp.org/resources/national-cdr-case-reportingsystem/ The National Violent Death Reporting System (NVDRS) is another resource for retrospective data on child suicide. Sponsored by the Centers of Disease Control and Prevention (CDC), NVDRS is a statebased surveillance system that gathers in depth data on all suicides and other violent deaths to include death certificates, coroner/medical examiner reports, and law enforcement reports. Optional additional sources include hospital data, crime lab data, and combining NVDRS data with information collected through CDR programs. As of 2018, all states, the District of Columbia and Puerto Rico receive federal funding for NVDRS implementation, although some are in the early phases of implementation.7 As with CDR systems, states vary in the length of time they have had a violent death reporting system (VDRS) in place and may vary in the thresholds of evidence applied in determining that a death is a suicide, and thus in need of further investigation/entry into the state CDR/VDRS system.

Theoretical Frameworks for Child Suicide Theoretical frameworks are underutilized in suicide research according to some17 while others posit that they may have limited real world or predictive utility18. Given the relative nascency of the child suicide field, however, well-reasoned theoretical frameworks can help to

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design rigorous empirical studies. One well-known theory, the Interpersonal Theory of Suicide (ITPS)19 posits that suicidal behavior results from experiences of thwarted belongingness and perceived burdensomeness, where the presence of both can result in the active desire to die. An “Acquired Capacity for Suicide” (ACS), the third key construct in the ITPS, is thought to develop after repeated exposure to (and tolerance for) painful events, combined with a decreased fear of death which culminates in a suicide attempt. A review of adolescent studies that included proxy measures for at least one of the constructs of IPTD found some evidence for the theory, particularly with regard to ACS20. However, the evidence for the ITPS in adolescents was not as strong as that seen in adult studies of suicidal behavior, possibly due to a dearth of adolescent studies and the use of proxy measures to assess key ITPS components.20 More recently, the Three-Step Theory of suicide21 was tested and found support for the tenets that pain (usually, but not necessarily emotional pain), hopelessness, and disrupted connectedness work in concert to bring about suicidal ideation.22 Developmentally based frameworks that consider the unique social and biological processes that occur in adolescence have been used to help explain the period of vulnerability during this phase of development.23,24 While not wholly directed at understanding suicidality in childhood, frameworks that point to pain, hopelessness, lack of connectedness and the lack of maturity in some neurobiological processes (such as less developed cognitive and impulse controls, emotion dysregulation) may apply to the experience of suicidal behavior in young children. Additional work to develop frameworks more applicable to younger children could help to drive research on child suicide risk and prevention. 5

Child Suicide Risk Factors Overall, we know relatively little about risk and protective factors for child suicide, meaning that suicide risk detection and suicide prevention efforts currently are built upon a thin body of research. Most published studies on youth suicide have exclusively examined adolescents or have grouped children and adolescents together in a single sample.25,26 In the 1980s and 1990s, work by Cynthia Pfeffer and colleagues suggested that risk factors included depression, psychomotor activity, preoccupations with death and parental suicidal ideation and behavior, and that poor social adjustment and mood disorders were risk factors for those children to attempt suicide later in childhood.27-29 Since this early work, however, research on child suicide has advanced relatively slowly. Changes in suicide rates and children’s exposure to concepts of death and violence over the intervening decades may also limit the generalizability of research conducted in the 1980s to children today. More recently, researchers have observed noteworthy and concerning fluctuations in the suicide rate within subgroups of children that help to highlight potential risk factors. Reflecting on the period between 19932012, Bridge and colleagues (2015) observed that the suicide rate significantly increased—in fact, nearly doubled--in black children as it decreased in white children.10 The rate of suicide by hanging/suffocation followed similar trends, increasing significantly in black boys but remaining stable in the overall child population. Notably, this racial/ethnic difference in suicide among children is the opposite of what is observed in older age groups, where white adolescents and young adults are at higher risk for suicide compared to their black peers.7 In one of the largest studies of child suicide risk factors to date, Sheftall and colleagues (2016) conducted analyses with a sample from 17 states participating in the NVDRS, comparing 6

children (ages 5-11) with early adolescents (ages 12-14) who died by suicide.26 In addition to the aforementioned higher risk for black children, they found that child suicide decedents were more likely than early adolescent suicide decedents to be male (85.1% vs. 69.6%), die by hanging/strangulation/suffocation (80.5% vs. 64.1%), to die at home (97.7% vs. 87.7%), and to have experienced relationship problems with family and friends (60.3% vs. 46%). Early adolescent decedents were more likely to leave a suicide note (7.7% vs. 30.2%), be depressed (33.3% vs. 65.6%), and experience problems with a boyfriend or girlfriend (0% vs. 16%). About a third of decedents in each group had disclosed their suicidal intent to another person prior to their death. The prevalence of mental health problems was similar, occurring in about a third of each age group. The type of mental health problems observed differed however, with children more likely to have exhibited ADHD and adolescents more likely to have experienced depression. While overall rates of substance use did not differ between groups, a notable proportion of each population tested positive for opiates: 3.9% of child and 7.5% of adolescent decedents. The data used for this study did not include measures of other putative risk factors shown to be related to suicide in adolescents, such as child maltreatment, bullying, sexual orientation and gender identity.25 Sheftall’s (2016) findings—although not representative of the entire U.S. population— are consistent with a recent review of the sparse literature on child suicide death risk factors30 which suggests that risk and protective factors for child suicide (including individual, family and external factors) may be different from those most relevant to suicide risk in adolescents. For example, a rich body of research on adolescents has identified risk factors such as sexual/gender minority status31, peer and parent relationships and connectedness32,33, stressful 7

life events, and trauma (including maltreatment and bullying)34. Recent evidence has suggested that media exposure (including social media) may enhance risk for some groups of adolescents as well.35,36 In contrast, child suicide research is still in its nascency and lacks clearly identified risk factors that can contribute to risk prediction models and/or serve as intervention targets.6,30 Developmental differences are also a concern when studying and treating younger children at risk for suicide. While it may be statistically useful to group children aged 5-11 together, the developmental variability within this age span may limit the ability to observe differences critical to understanding risk for suicidal behavior in early and middle childhood. As with most other health domains, screening/assessment and intervention protocols should differ for 5-year-olds compared to 11-year-olds. Developmental factors that should be considered include (among others), the degree to which a child at a certain age is likely to understand the permanence of death or to be influenced by the specific wording of a suicide screening question.30,37,38 Contradicting older research positing that children with suicidal ideation have less mature understanding of death39, a more recent (2019) study of 3 to 6 year olds found that those with depression and suicidal ideation had a more advanced understanding of death, including understanding the permanence of death, compared to their nondepressed peers.40 Further complicating suicide screening and assessment in this age group, children under 12 with acute suicidality are less likely to have a history of prior suicidal ideation or behavior than their adolescent counterparts,41 so relying on these factors as an indication of future risk may be insufficient. One recent paper offered guidelines for assessing suicide risk in children based

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on the very limited existing theoretical and empirical work.30 Currently, however, there are few studies that can guide efforts to accurately and reliably detect suicide risk among children. Child Suicide Prevention While there are few studies examining child suicide risk factors, there is even less evidence to suggest how to intervene with suicidal children.30,42 It is possible that interventions that are efficacious for reducing suicidal thoughts and behaviors in older youth (e.g., Dialectical Behavior Therapy for Adolescents43) could be adapted for children.44 However, there are currently very few interventions that have demonstrated consistent, strong effects on reducing suicidal thoughts and behaviors among adolescents. Thus, these treatments may not yet be ready for adaptations targeting younger children. Interventions designed for other groups of high risk children (e.g., those in foster care, or who experience severe mood dysregulation or impulsivity)45-50 may hold promise in addressing child suicide risk, but studies measuring suicide-related outcomes are rare. Much more work is needed to advance research and practice on “what works” for high-risk children. As emphasized in the NIMH Strategic Plan for Research,51 the experimental therapeutics approach can be used to identify which treatments work, for whom, and through which mechanisms. Given the relative urgency in identifying methods for reducing child suicide, the experimental therapeutics approach may allow the field to expeditiously answer questions about not only whether a particular intervention works, but also why or why not. NIMH has published several funding opportunity announcements designed to support this type of research.52-54 However, this is just one of many useful and innovative approaches that can be applied to child suicide research. Other exciting methods such as natural language processing and machine learning, examination of electronic medical 9

records, wearable monitoring devices and large pragmatic trials are among the many creative approaches worthy of exploration in child suicide research. Ethical Considerations As research, policy and practice respond to the problem of child suicide, it is critical that we establish and adhere to clear ethical guidelines.55 There are many ethical considerations that arise in child suicide work. First, as in all research and practice it is important to minimize risk of harm. While we know from research on adolescents and adults that asking about suicide does NOT increase risk for actual suicidal thoughts/behaviors,56,57 the wording of child suicide screening and assessment questions deserves special attention. For example, the younger a child is, the more susceptible s/he is to confuse information suggested by an interviewer with actual events.58 Further, developmental differences in a child’s understanding of death could have a significant impact on their ability to accurately understand and respond to questions about suicidal thoughts and intent. For example, if a child who does not understand the permanence of death says, “I wish I was dead,” what does this mean in terms of his or her suicide risk? It is important to ensure that suicide screening and assessment protocols are developmentally appropriate and devoid of leading questions. Moreover, child suicide research and practice must be sensitive to concerns and fears that parents and other caregivers may have about professionals discussing suicidal thoughts and behaviors with their child. For example, some parents may worry that their child will become distressed by the suicide screening itself—an understandable concern, especially in cases where the parent and child have not previously talked about suicide or violent death. In addition to ensuring that screening measures do no harm (which includes child distress), researchers and practitioners should be 10

prepared to provide informed consent, including a thorough review of potential harms and benefits, to parents and other caregivers. As with any child-focused research, it is also important to consider and prepare to mitigate potential harm that could stem from the consent and screening processes themselves. For example, parents with existing mental health or substance use problems may need additional resources in order to skillfully manage distress related to learning about their child’s symptoms and to effectively support child suicide prevention efforts. Finally, child suicide researchers should make every effort to include a diverse study population, consistent not only with the aforementioned evidence of racial disparities in child suicide,5 but also with the ethical principle of justice.59 These and other ethical issues must be considered in order to ensure responsible conduct of child suicide research and practice. Recommended Next Steps Measurement Studying issues with low base rates, like child suicide, poses a challenge for the field. One of the first, most efficient steps we must take to advance child suicide research and practice is to cultivate reliable, valid, and developmentally sensitive child suicide risk measurement approaches, including suicidal thoughts and behaviors. Large, comprehensive datasets with reliable and accurate data are critical.60 For instance, efforts to improve the accuracy and consistency (e.g., across states or hospital systems) of data on child suicide attempts and deaths could enhance the value and utility of these data sources. Implementation of a uniform set of decision-making criteria that medical examiners can rely on in making child death determinations could help to limit bias and inconsistencies across medical examiners and 11

states, for example. Similarly, systematic documentation of child suicide deaths and attempts within administrative (e.g., school, child welfare records) and/or medical records could help to provide the data needed for rigorous child suicide research. NIMH has invested in studies taking advantage of large, existing datasets to fill suicide research gaps,61,62 and child suicide researchers can leverage these same funding mechanisms, data sources and methodologies. In addition, we must improve our ability to measure or predict risk for suicide before an attempt or death. For instance, more reliable, valid and developmentally sensitive measurement of suicidal ideation in children will facilitate the design of suicide prevention programs for children who are at increased risk. These measures should be examined for reliability and validity within the target age range, including an examination of whether the suggestibility of younger children58 impacts their responses and whether suicide screening may have any iatrogenic effects on younger children. Researchers who do not consider themselves to be focused on suicide can also help by adding questions about suicide to studies examining symptoms associated with suicide risk in youth. Risk and Protective Factors As described above, current knowledge about risk and protective factors for child suicide is extremely limited. Theoretical frameworks the provide a conceptualization of child suicide can help to formulate hypotheses about which factors and systems contribute to this problem. Sound hypotheses about putative risk factors also can be developed based on prior research focused on adolescent suicide risk factors (e.g., race/ethnicity, child maltreatment, sexual orientation, gender identity, etc.) and research on other related problems (e.g., aggression, impulsivity, depression). These hypotheses should be rigorously tested, taking 12

advantage of existing datasets whenever possible. Such studies should not limit their focus to the aforementioned demographic and psychological risk factors but should broadly consider theoretically relevant systems and multidisciplinary perspectives including neuroscience, (epi)genetics, psychology, psychiatry, epidemiology, public health, social work, biostatistics, and pediatrics. For instance, multigenerational transmission of risk, the role of gene-environment interactions, and the influence of social determinants, policies and community level factors are all worthy areas of future study. Broadening our currently limited understanding of this public health problem and making the critical advances that the field needs will require considerable effort from a diverse range of investigators. NIMH’s Research Domain Criteria can help to provide an integrated framework for this work.63-65 Furthermore, studies should expand their focus to include questions about protective factors. Recent work, for example, has shown a dose-response association between positive experiences in childhood and mental health in adulthood, where adults recalling a greater number of “positive childhood experiences” like “felt able to talk to their family about feelings” were less likely to have mental health problems like depression, even after accounting for the oft-discussed “adverse childhood experiences” or “ACEs”.66 While this work was cross-sectional and retrospective, it demonstrates how a large (N=6188) existing dataset can be analyzed to gain insight into potentially powerful, modifiable childhood experiences that may have a lasting and positive mental health impact. Prevention and Treatment Intervention The need for child suicide prevention and treatment is so urgent that the field cannot afford to wait for perfect measurement and a comprehensive understanding of risk and protective factors before embarking on ambitious research to improve interventions. 13

Intervention research on this population is desperately needed, and there are existing low-cost, efficient methods available to facilitate rapid scientific advancements. One such approach is to leverage existing data from intervention studies and to add suicide measures to ongoing ones. Wilcox and colleagues (2016) recently described several existing datasets that can be linked to data from prevention studies to advance youth suicide prevention research.60 Illustrating the value of leveraging existing data, a variety of family-based interventions originally designed to address other childhood emotional and behavioral problems (i.e., not suicide specifically) have been shown to prevent suicidal thoughts and behaviors later in childhood and adolescence.67-69 These findings are powerful, demonstrating that by addressing precursors to suicidal behavior, like other emotional and behavioral problems and their underpinnings (e.g., emotion regulation, coping, problem solving strategies), we can reduce risk for suicidal thoughts and behaviors. However, this prevention approach will not address imminent suicide risk for children already experiencing suicidal thoughts and behaviors. Higher risk populations will require more intensive, focused interventions. Studies specifically focused on these highest-risk children are urgently needed. Given the dearth of evidence for child suicide interventions and the aforementioned ethical considerations, such studies may be ideally situated within settings where child participants are already connected with and being monitored by formal mental health supports (e.g., inpatient or outpatient mental health care). What can we do now to prevent child suicide based on what we already know? As we await research findings families, schools, child welfare workers, medical professionals, and others will be confronted with the question of how to identify, screen for, prevent and treat child suicide risk. For one, we already know that there are certain subgroups 14

of children who appear to be at comparatively high risk for suicide. For example, black children are at higher risk than their white peers,5 so research focused on this population can be prioritized immediately. American Indian/Alaska Native (AI/AN) adolescents are also at higher risk for suicide compared to white youth,70 and while data are lacking on risk among younger AI/AN children, the adolescent data makes this a group worthy of special attention as well. Unfortunately, there is insufficient empirical evidence to guide the development of suicide screening and assessment protocols for young children. Currently, clinicians must use their judgment and reference protocols developed for older children.71,72 In doing so, they should be careful to consider the developmental and ethical issues noted above. Turning to prevention, there is strong, convincing evidence to suggest that programs focused on enhancing children’s emotion regulation, inhibitory control, coping, and interpersonal skills can be implemented in early and middle childhood to prevent later suicidal thoughts and behaviors.67-69,73 These programs can be implemented in a variety of settings. Some examples include the Good Behavior Game (for elementary schools) and the Early Family Check-Up (implemented in Women, Infants and Children [WIC]).67,73 Another advantage of these programs—particularly for overburdened systems like schools and child welfare—is that they also have a positive impact on a variety of behavioral health problems that can lead to early death such as substance use, mental health conditions, and risky behaviors.74 Further, as indicated above, there is converging evidence from epidemiological and intervention studies that strengthening family relationships –particularly those between parents and children—can help to protect against suicide risk.26,32,33,67-69 Fortunately, decades of research have yielded a multitude of evidence-based family and parenting interventions, including ones tailored for 15

differing levels of risk, age groups, racial/ethnic and cultural groups, and other special populations.75-77 This is an area of strength in the mental health services field that can be leveraged by medical providers and communities to prevent child suicide right now. Conclusion Child suicide is a growing problem, particularly among certain segments of the population. Research on all aspects of child suicide (e.g., measurement, risk and protective factors, prevention and treatment intervention) is urgently needed. Future research should strive to have a theoretical basis, be developmentally sensitive, take advantage of existing data sources, and pay careful attention to potential ethical issues. As we await new findings to help better detect risk and prevent death from child suicide, we must continue to take action using strategies showing strong preventative effects, particularly among vulnerable populations.

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Acknowledgements: The authors would like to thank Eve Reider, Ph.D. and Galia Siegel, Ph.D. of the National Institute of Mental Health for their helpful comments on a previous version of this manuscript. The views included in this manuscript are those of the authors, and do not necessarily represent the views of the National Institute of Mental Health.

Financial disclosures: Drs. Ayer, Colpe, Pearson, Rooney and Murphy report no biomedical financial interests or potential conflicts of interest.