Pediatrics has long committed to a family centered approach, recognizing caregivers as experts in their child's care, through the American Academy of Pediatrics (AAP) definition of medical homes.1 Caregivers provide histories, perspectives, and ideally develop shared treatment plans with practitioners. Practitioners, in turn, have the privilege of merging caregiver information with the child's strengths, symptoms or disease severity, and social determinants of health (SDOH) during treatment planning. These encounters are relatively familiar scenarios that can be easily managed. What happens when the child's symptoms or diagnosis is a result of family adversity, such as failure-to-thrive due to physical neglect, neonatal abstinence syndrome (NAS) due to maternal heroin use, or communication delay due to caregiver depression? In these scenarios, pediatric practitioners recognize when adversity has impaired their patients. The challenge, however, is in recognizing that adversity often simultaneously affects the child's health and the caregivers' abilities to meet their child's needs.
The challenge for pediatric practitioners is transforming routine family centered treatment plans to account for the fundamental impact of adversity on both caregivers and children. The prevalence and association between adverse childhood experiences (ACEs), chronic adult health conditions, and reduced life potential documented by Fellitti et al.2 more than 20 years ago provides a compelling case for pediatric practitioners to successfully address adversities in day-to-day practice. The ACEs included five distinct types of child maltreatment and parent incarceration, divorce, caregiver affected by substance abuse, intimate partner violence (IPV), or symptomatic mental illness. These ACEs were not only prevalent, but the associations between childhood adversities and common adult chronic disease, unhealthy behaviors, and reduced life potential were strong. These associations led to proposing a role for pediatric practitioners to intervene early in childhood adversities in hope of protecting children's future potential. The less studied question is how to identify ACEs and successfully treat the resulting child health conditions when the adversity continues to affect the primary caregiver. Caregivers affected by adversities such as mental illness, IPV, and addiction to drugs or alcohol are likely living with a level of stress and uncertainty that makes their ability to meet their child's treatment needs more challenging.
Adding to the complexity, SDOH also affect well-being3,4 (Table 1) and the overlap between SDOH and ACEs is well documented.5 Recent adult prevalence data of childhood adversities in the United States reported by the Behavioral Risk Factor Surveillance System (BRFSS) reveals that 61.6% of adults reported experiencing at least one ACE and 24.6% reporting three or more ACEs in their childhood.6 Emotional abuse was the most common ACE at 34.4%, and 27.6% reported living with an adult with substance abuse problems in their childhood. ACE and SDOH prevalence rates reported by current caregivers, although lower than adult samples, is concerning. In the 2016 Children's Health Survey, Bethell et al.7 found that 21.7% of children in the US lived with two or more adversities, including poverty, and noted racial and ethnic disparities among minority populations. The significance of these prevalence rates on caregiver and child health is demonstrated in recent findings revealing higher rates of food insecurity, caregiver depression, and developmental delay in young children who also experienced housing instability.8 Screening for social determinants of health, therefore, may also uncover ACEs. In addition, national recommendations to screen for perinatal or postpartum depression9 provide practitioners additional opportunities to identify ACEs early, which protect early childhood development and safety.
Social Determinants of Health and Adverse Childhood Experiences
The relatedness between ACEs, SDOH, and child health has relevance for pediatricians in daily practice. The AAP position on the potential pathway for how these adversities affect child health is described by Shonkoff et al.10 In the policy statement's technical report, toxic stress is not defined as the actual stressor or adversity, but rather as a prolonged physiologic stress response in the absence of a buffering, nurturing caregiver that may trigger serious and potentially long-term physical, mental, and developmental conditions.10 Emerging science has also identified epigenetic changes associated with maternal neglect in animal models11 and human studies,12,13 including studies suggesting that epigenetic changes may be passed to future generations. These dynamics have special, although still theoretical, clinical implications in the context of family centered care. Risks associated with ACEs and SDOH have potential effects on a caregiver's ability to be a protective buffer against stress, which may then negatively influence the well-being of children based on the emerging science of toxic stress and epigenetics.
Given the high prevalence of ACEs, the pathways between toxic stress, neurodevelopmental and immune system abnormalities, epigenetics, and resulting health conditions, addressing adversity effectively in pediatrics is imperative to prevent the onset of disability, chronic disease, or early death. Decades of focus on ACEs, toxic stress, and SDOH will need to affect pediatric practice substantially given its foundation of family centered care. A call to action to address ACEs and SDOH in pediatric practice has, therefore, emerged.14–16 At the same time, pediatric practitioners may feel ill-equipped to respond to disclosures.17
To assist practitioners in their role, several national professional organizations have provided streamlined access to tools for identifying and treating adversities. The AAP has launched the web-based Resiliency Project, along with the searchable database, Screening Time ( http://www.screeningtime.org). Collectively, these resources provide toolkits for addressing ACEs in medical homes and access to an inventory of screening instruments that screen for adversities, SDOH, or other indicators of family risk. Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents18 and the AAP's Connected Kids Clinical Guide19 provide assessment and anticipatory guidance recommendations to address adversities and SDOH during clinical encounters. For more specific treatment recommendations, The National Child Traumatic Stress Network ( https://www.nctsn.org) and the California Evidence-Based Clearinghouse for Child Welfare ( http://www.cebc4cw.org) provide access to inventories and curricula of evidence-based or promising therapeutic approaches with children and caregivers affected by trauma. The American Psychological Association's Caregivers Count Too! toolkit, framed for caregivers of older adults,20 has key principles that may translate to other clinical settings.
The challenge for pediatrics is adapting these resources to meet the dual role of caregivers who are simultaneously stressed by adversity, while charged with protecting their children from the same adversity to prevent toxic stress and potential sequelae. The effect of not adjusting pediatric practice to meet this dual challenge with caregivers is succinctly captured by The Institute of Medicine in their statement, “The health of adults is related to their health as children.”3
Limits of Diagnosis-Focused Treatment Planning in the Context of Family Adversity
Partnering with caregivers when an adversity is affecting both caregivers and children is central to the delivery of family centered care. Many common childhood conditions are linked to trauma-related neurodevelopmental disruptions, such as enuresis, encopresis, sleep difficulties, mental illness, or learning difficulties.21 Caregivers of children with these types of adversity-related diagnoses may be tasked with providing a buffering, nurturing environment to reduce toxic stress and implement other treatment while still experiencing adversity. Consider typical treatment categories for sample conditions outlined in Table 2. Traditional treatment plans often require caregiver planning and routines, caregiver behavior change, child skills development, and potential off-site referrals. Given the overlap of adversities, and the potential for children to present with more than one symptom or diagnosis, treatments plans can quickly become extensive and overwhelming. At the same time, adversities may affect a caregiver's ability to complete treatment plans, particularly for ACEs related to IPV, addiction, and mental illness. For example, a caregiver with depression whose infant has developmental delays may have difficulty adding in positive “serve and return” interactions and arranging in-home developmental services. The caregiver's depression is simultaneously a potential trigger for the infant's delay and a potential barrier to improvement, which will need to be considered for successful treatment planning.
Examples of Potential Treatment Categories for Pediatric Trauma-Related Symptoms
Among ACEs, IPV is perhaps the most challenging adversity, given the immediate safety risk to caregivers and children. Additionally, based on national data, caregivers who are victims of IPV are also 2 to 2.5 times more likely to experience sleep difficulties and suffer from chronic pain.22 Consider a caregiver who is a victim of IPV whose child presents with disruptive or aggressive behaviors. Traditional treatment planning would typically include praise, play time, positive parenting, time-out for discipline, focus on sleep, and possible referral for psychological services. Although each treatment is a sound method in general, such an approach in the context of adversity may detract from prioritizing the child's primary need—having the caregiver ensure the presence of a nurturing, buffering caregiver while they seek safety supports.
Other health effects of ACEs, such as a child with sequelae of abusive head trauma, NAS,23 or fetal alcohol syndrome, may have complex health management requirements. The potential effect of ongoing family adversities poses particular risk given the child's added vulnerability. Practitioner awareness of the status of adversities is critical to avoid further decline and can be accomplished by remaining focused on preventing additional toxic stress in addition to medical management. Monitoring for emerging or recurring adversities when children have ACE-related disabilities may protect children from further toxic stress or physical sequelae in partnership with caregivers, given the potential of child protection intervention should further declines occur.
With the national focus on trauma-informed care, treatment modalities have expanded to include not only evidence-based therapies, such as trauma-focused cognitive-behavioral therapy and child-parent psychotherapy, but also strategies such as mindfulness training, yoga, meditation, nutrition, and exercise. In the context of toxic stress, offering these strategies may help caregivers. At the same time, focusing treatment that conflicts with a caregiver's current capacity, priorities, or resources may affect caregiver engagement and further delay a child's recovery. Motivational interviewing may assist priority setting, particularly if practitioners can recommend modalities most likely to meet shared goals of reducing toxic stress. Ultimately, caregivers will only implement modalities they can manage, so appropriate guidance for effective, realistic treatment options is critical. Family centered care in the context of adversity requires pinpointing strategies most likely to improve the presence of a buffering caregiver while prioritizing access to the most necessary treatments for the child's needs.
Adversity-Informed Treatment Planning to Support Stressed Caregivers
Practitioners who are aware of a caregiver's adversities while treating his or her child's adversity-related health conditions have a unique opportunity to focus on effective interventions. The concept of toxic stress provides a central framework for treatment planning: supporting caregivers in their most important role—ensuring the presence of a buffering, nurturing caregiver. A framework based on adversity and toxic stress allows practitioners to account for caregiver stress or ACE-related struggles as a central aspect of treatment planning.
Table 3 provides a sample framework for adversity-informed treatment planning that incorporates consideration of adversities in diagnosis, monitoring, and treatment planning. For purposes of this discussion, adversity is defined as those ACEs (current or past) that are more closely linked with toxic stress: divorce, incarceration, caregiver substance abuse, IPV, caregiver mental illness, and all forms of child maltreatment. SDOH also effect current and future health risks and are included. The framework provides an opportunity to consider all potential adversities, the presence of a nurturing caregiver, current potentially ACE-related health issues, and future potential ACE-related health issues. Adversity-informed treatment planning incorporates a visual of how adversities may be affecting caregivers and children to prioritize treatment recommendations focused on ensuring the presence of a nurturing caregiver despite a stressed household. The framework also provides a potential planning tool by tracking key data as family situations improve or worsen.
Adversity-Informed Treatment Planning: Family Centered Care Framework
A Framework of Three Questions that Guide Adversity-Informed Treatment Planning
Question 1: Are There Diagnoses or Symptoms That Suggest Family Based Adversities Exist?
Initial steps for an adversity-informed treatment plan begins with recognizing and triaging which health conditions are associated or caused by ACEs or influenced by SDOH. The list is extensive and for discussion, selected conditions commonly identified are listed in Table 3. Pediatric diagnoses routinely require broad differentials for presenting symptoms that are quickly narrowed. Given the prevalence of adversities, pediatric practitioners will need to expand their diagnostic algorithms to include adversities. Not only might such an approach lead to better diagnoses and treatment planning, if adversities are also affecting caregivers, the approach is more family centered. In reviewing diagnoses, practitioners will need to consider whether the conditions were precipitated by a past adversity, an on-going adversity, or an adversity that could recur.
Question 2: Have I Identified Social Determinants of Health or Adverse Childhood Experiences That May Be Associated With the Child's Symptoms or Diagnosis?
Resources through the Institute of Medicine3 and AAP Resiliency Project mentioned earlier provide processes to implement safe and effective screening and assessment strategies for ACEs and SDOH. Pediatric health care settings will want to consider strategies that support caregiver and child disclosures of adversities and SDOH. The Adversity-Informed Treatment Planning Framework offers prompts and easy documentation of adversities in the context of diagnoses. Taking these steps may lead to a more accurate portrayal of family strengths and risks for purposes of safe triaging and treatment planning.
Question 3: How Will I Adjust Treatment Planning in Partnership With the Caregiver to Preserve Safety, Treat the Most Important Symptoms, and Prioritize the Child Having a Nurturing, Buffering Caregiver?
Once complete, the framework provides a snapshot of risks, the caregiver's role in buffering a child from toxic stress, current and future symptoms, and diagnoses for the purposes of prioritizing treatment planning. The number of diagnoses can be significant. Practitioners may find they can best support caregivers by pacing and prioritizing treatment recommendations in the context of caregiver stress for the most disruptive or high-risk conditions such as sleep difficulties, emotional dysregulation, toileting difficulties, or mental illness. As practitioners begin outlining treatment plans for conditions, the framework provides visual cues to emphasize treatments that will reduce the likelihood of toxic stress. Enhanced care delivery models that include care coordination, integrated care, or home visiting are essential elements to consider developing based on practice size, community resources, and financial models.
Suspicions of Child Abuse or Neglect
Given the reliance of treatment success on a caregiver's ability to implement treatment plans, practitioners will need to carefully consider safety first when suspicions of abuse or neglect arise. Of the 10 original ACEs studied by Felitti et al.,2 5 are types of reportable child maltreatment. In the context of adversity and SDOH, the caregiver may also be the reason the child's health is in jeopardy. This tension is perhaps the single most important challenge and opportunity in addressing toxic stress and is also the aspect least addressed in the literature. Recognizing early signs of physical, sexual, or psychological abuse, or medical, emotional, or physical neglect is imperative for safe triage and treatment of ACE-affected families. Triage and treatment procedures are straightforward and is a familiar practice; practitioners are mandatory reporters for inflicted injuries, failure-to-thrive due to food deprivation, or hospitalization due to medical neglect. In these clear scenarios, child safety comes first, and reporting can be lifesaving.
Delaying child abuse reports that otherwise meet legal reporting standards will only further jeopardize children's future and potential for family rehabilitation as opposed to supporting a family. Caregivers with serious, untreated addiction or untreated serious mental illness, such as psychosis or suicidality, are unlikely to improve with medical home support. Once reporting is complete, practitioners will need to continue to address the effect of toxic stress, child safety, and caregiver support based on child protection investigation, intervention, and the quality of the relationship between the practitioner and the family. Proper reporting and follow-up may be lifesaving in well-supported communities.
There is substantial evidence for pediatric practitioners to embrace a deliberate approach to preventing toxic stress by recognizing risk factors and then better supporting caregivers in their protective role with their children. When caregivers are stressed by the same adversity causing their child's symptoms or health conditions, traditional treatment planning may miss roots of the condition such as adversity. Practitioners will need to balance the risk and benefit of treatment recommendations based on whether treatment increases a caregiver's capacity to be buffering and nurturing or further detracts or creates more stress. An adversity-informed treatment planning approach may serve to synthesize information across adversities, diagnoses, and future risks in a framework that emphasizes the critical role of caregivers. Practitioners can remind families that adversity is common and help and support are available. Families living with adversity have an ally in medical homes, where commitment to providing compassionate, family centered care creates a safe, welcoming place for support, healing, and recovery.
- American Academy of Pediatrics. The medical home. Medical home initiatives for children with special needs. Pediatrics. 2002;110(2):184–186. doi:10.1542/peds.110.1.184 [CrossRef].
- Felitti VJ, Anda RF, Nordenberg D, et al. Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults. The Adverse Childhood Experiences (ACE) Study. Am J Prev Med. 1998;14(4):245–258. doi:10.1016/S0749-3797(98)00017-8 [CrossRef]
- Institute of Medicine. Capturing social and behavioral domains and measures in electronic health records. Phase 2. https://doi.org/10.17226/18951. Accessed June 12, 2019.
- Billioux A, Verlander K, Anthony S, Alley D. Standardized screening for health-related social needs in clinical settings. The accountable heath communities screening tool. https://nam.edu/wp-content/uploads/2017/05/Standardized-Screening-for-Health-Related-Social-Needs-in-Clinical-Settings.pdf. Accessed June 12, 2019.
- Hughes K, Bellis MA, Hardcastle KA, et al. The effect of multiple adverse childhood experiences on health: a systematic review and meta-analysis. Lancet Public Health. 2017;2(8):e356–e366. doi:. doi:10.1016/S2468-2667(17)30118-4 [CrossRef]
- Merrick MT, Ford DC, Ports KA, Guinn AS. Prevalence of Adverse Childhood Experiences From the 2011–2014 Behavioral Risk Factor Surveillance System in 23 States. JAMA Pediatr. 2018;172(11):1038–1044. doi:. doi:10.1001/jamapediatrics.2018.2537 [CrossRef]
- Bethell CD, Davis MB, Gombojav N, Stumbo S, Powers K. Issue brief: a national and across state profile on adverse childhood experiences among children and possibilities to heal and thrive. http://www.cahmi.org/wp-content/uploads/2018/05/aces_brief_final.pdf. Accessed June 12, 2019.
- Sandel M, Sheward R, Ettinger de Cuba S, et al. Unstable housing and caregiver and child health in renter families. Pediatrics. 2018;141(2):e20172199. doi:. doi:10.1542/peds.2017-2199 [CrossRef]
- Siu AL, Bibbins-Domingo K, US Preventive Services Task Force (USPSTF) et al. screening for depression in adults: US Preventive Services Task Force Recommendation Statement. JAMA. 2016;315(4):380–387. doi:. doi:10.1001/jama.2015.18392 [CrossRef]
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- McGowan PO, Sasaki A, D'Alessio AC, et al. Epigenetic regulation of the glucocorticoid receptor in human brain associates with childhood abuse. Nat Neurosci. 2009;12(3):342–348. doi:. doi:10.1038/nn.2270 [CrossRef]
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- American Academy of Pediatrics. Addressing Adverse Childhood Experiences and Other Types of Trauma in the Primary Care Setting. Elk Grove Village, IL: American Academy of Pediatrics; 2014.
- Bethell CD, Solloway MR, Guinosso S, et al. Prioritizing possibilities for child and family health: an agenda to address adverse childhood experiences and foster the social and emotional roots of well-being in pediatrics. Acad Pediatr. 2017;17(7S):S36–S50. doi:. doi:10.1016/j.acap.2017.06.002 [CrossRef]
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- Family Caregiver Alliance. Caregivers count too! A toolkit to help practitioners assess the needs of family caregivers. https://www.caregiver.org/sites/caregiver.org/files/pdfs/Assessment_Toolkit_20060802.pdf. Accessed June 12, 2019.
- American Academy of Pediatrics. Helping foster and adoptive families cope with trauma. https://www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/healthy-foster-care-america/Documents/Guide.pdf. Accessed June 12, 2019.
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Social Determinants of Health and Adverse Childhood Experiences
|Race and ethnicity4|
|Country of origin/US born or non-US born4|
|Negative mood and affect: depression and anxiety4|
|Psychological assets: conscientiousness, patient engagement/activation, optimism, and self-efficacy4|
|Tobacco use and exposure4|
|Social connections and social isolation4|
|Neighborhood and community compositional characteristics4|
|Child physical abuse2|
|Child sexual abuse2|
|Child emotional abuse2|
|Child emotional neglect2|
|Child physical neglect2|
|Caregiver victimized by intimate partner violence2|
|Incarcerated household member2|
|Household member with substance use disorder|
|Household member with symptomatic mental illness2|
Examples of Potential Treatment Categories for Pediatric Trauma-Related Symptoms
|Symptom/Diagnosis||Changes in Daily Routine||Caregiver or Child Behavior Change/Skills Development||Potential Referrals|
|Sleep difficulties||Yes||Yes||Sleep specialist|
|Restless/hyperactivity||Yes||Yes||Therapist and/or medication management|
|Depression||Yes||Yes||Therapist and medication management|
|Developmental delay||Yes||Yes||Part C of IDEA|
|Learning delays||Yes||Yes||School-based learning evaluation or psychological assessment|
Adversity-Informed Treatment Planning: Family Centered Care Framework
|Social Determinant of Health in Patient's Home/Childhood3||ACEs in Patient's Childhood2–4||Protective Factors10||Child Symptoms/Diagnosis2, 5, 6, 8, 10, 14, 21, 23–27||Subsequent Adult Health Risks or Conditions2,6|
Race and ethnicity
Country of origin/US born or non-US born
Negative mood and affect: Depression and anxiety
Psychological assets; conscientiousness, patient engagement/activation, optimism, and self-efficacy
Tobacco use and exposure
Individual-level social relationships and living conditions
Social connections and social isolation
Neighborhood and community compositional characteristics||ACEs originally reported
Household member with substance use disorder
Household member with symptomatic mental illness
Caregiver treated violently
Household member imprisoned
Parent separation, divorce
Additional family adversities
ACEs in caregiver's childhood||Nurturing, protective caregiver to buffer from potentially toxic stress
Physical or emotional abuse
Physical or emotional neglect
In-utero drug or alcohol exposures
Poor oral health
Abnormal eating/poor growth
Poor academic achievement
Sequelae from abusive head trauma
Sequelae from physical or sexual abuse
Alcohol or drug misuse/abuse
Early and/or high-risk sexual activity
Ischemic heart disease
BMI >35 kg/m2 Any cancer
Ever attempted suicide
>50 sexual partners
No physical activity
Risk of intimate partner violence
Poor work performance