Pediatric Annals

Special Issue Article 

New Approach to Pediatric Treatment Planning to Support Caregivers Living with Adversities

Anu Partap, MD, MPH

Abstract

Pediatric practitioners are called upon to identify adverse childhood experiences and social determinants of health, given the growing evidence of the prevalence, lifelong risk, and potentially preventable impact of adversities. Caregivers serve as a strong mediator of how adversities affect children, with toxic stress resulting from the lack of a buffering caregiver in the context of prolonged stress activation. In the context of family centered care, pediatric practitioners who identify adversities or diagnose related health conditions, will need to be adept at modifying treatment plans to respect the caregiver's circumstances. Pediatric practitioners will need to consider how adversities affect the caregiver's well-being and capacity to provide protective, buffering relationships to prevent toxic stress, and access to recommended treatments. This article proposes a reconsideration of traditional treatment planning to be adversity-informed to provide family centered care. [Pediatr Ann. 2019;48(7):e262–e268.]

Abstract

Pediatric practitioners are called upon to identify adverse childhood experiences and social determinants of health, given the growing evidence of the prevalence, lifelong risk, and potentially preventable impact of adversities. Caregivers serve as a strong mediator of how adversities affect children, with toxic stress resulting from the lack of a buffering caregiver in the context of prolonged stress activation. In the context of family centered care, pediatric practitioners who identify adversities or diagnose related health conditions, will need to be adept at modifying treatment plans to respect the caregiver's circumstances. Pediatric practitioners will need to consider how adversities affect the caregiver's well-being and capacity to provide protective, buffering relationships to prevent toxic stress, and access to recommended treatments. This article proposes a reconsideration of traditional treatment planning to be adversity-informed to provide family centered care. [Pediatr Ann. 2019;48(7):e262–e268.]

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

Table 1:

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

Table 2:

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

Table 3:

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.

Conclusion

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.

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Social Determinants of Health and Adverse Childhood Experiences

Housing instability3,4
Food insecurity3,4
Transportation3,4
Utility needs3,4
Interpersonal safety3,4
Stress4
Health literacy/education4
Sexual orientation4
Race and ethnicity4
Country of origin/US born or non-US born4
Employment4
Negative mood and affect: depression and anxiety4
Psychological assets: conscientiousness, patient engagement/activation, optimism, and self-efficacy4
Dietary patterns4
Physical activity4
Tobacco use and exposure4
Alcohol use4
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
Divorce2
Discrimination15
War15
Natural disasters15
Immigration/deportation15
Foster care15
Neighborhood violence15
Bullying15

Examples of Potential Treatment Categories for Pediatric Trauma-Related Symptoms

Symptom/DiagnosisChanges in Daily RoutineCaregiver or Child Behavior Change/Skills DevelopmentPotential Referrals
Sleep difficultiesYesYesSleep specialist
EnuresisYesYesUrologist
EncopresisYesYesGastroenterology
TantrumsYesYesBehavior management
Restless/hyperactivityYesYesTherapist and/or medication management
AggressionYesYesTherapist
DepressionYesYesTherapist and medication management
Excessive cryingYesYesTherapist
Developmental delayYesYesPart C of IDEA
Learning delaysYesYesSchool-based learning evaluation or psychological assessment

Adversity-Informed Treatment Planning: Family Centered Care Framework

Social Determinant of Health in Patient's Home/Childhood3ACEs in Patient's Childhood2–4Protective Factors10Child Symptoms/Diagnosis2, 5, 6, 8, 10, 14, 21, 23–27Subsequent Adult Health Risks or Conditions2,6
SES   Housing instability   Food insecurity   Transportation   Utility needs   Sexual orientation   Race and ethnicity   Country of origin/US born or non-US born   Employment Psychological domains   Health literacy/education   Stress   Negative mood and affect: Depression and anxiety   Psychological assets; conscientiousness, patient engagement/activation, optimism, and self-efficacy Behavior domains   Dietary patterns   Physical activity   Tobacco use and exposure   Alcohol use Individual-level social relationships and living conditions   Interpersonal safety   Social connections and social isolation   Neighborhood and community compositional characteristicsACEs originally reported   Psychological abuse   Physical abuse   Sexual abuse   Emotional neglect   Physical neglect   Household member with substance use disorder   Household member with symptomatic mental illness Caregiver treated violently   Household member imprisoned   Parent separation, divorce   Parent death Additional family adversities   Discrimination   Foster care Additional framework   ACEs in caregiver's childhoodNurturing, protective caregiver to buffer from potentially toxic stress OthersHealth   Physical or emotional abuse   Sexual abuse   Physical or emotional neglect   In-utero drug or alcohol exposures   Prematurity-related disabilities   Asthma   Obesity   Poor oral health   Eczema   Congenital deformities   Abnormal eating/poor growth   Developmental delays/disabilities   Poor academic achievement   Sequelae from abusive head trauma   Sequelae from physical or sexual abuse   Injury   Enuresis, encopresis   Emotional distress   Sleep difficulties   Depression   Attention-deficit/hyperactivity disorder   Anxiety   Suicidal ideation/attempt   Unintended pregnancy High-risk behaviors   Peer difficulties   Tobacco use   Alcohol or drug misuse/abuse   Early and/or high-risk sexual activity   Truancy   Illegal activityHealth   Depression   COPD/emphysema   STI   Stroke   Ischemic heart disease   BMI >35 kg/m2  Any cancer   Ever attempted suicide   Skeletal fracture   Hepatitis   Drug/alcohol abuse High-risk behaviors   >50 sexual partners   Smoker   No physical activity   Risk of intimate partner violence Life potential   Poor work performance   Financial stress
Authors

Anu Partap, MD, MPH, is a Physician Director, Center for Prevention of Child Abuse, Cook Children's Health Care System.

Disclosure: The author has no relevant financial relationships to disclose.

Address correspondence to Anu Partap, MD, MPH, Center for Prevention of Child Abuse and Neglect, Cook Children's Health Care System, 801 7th Avenue, Fort Worth, TX 76104; email: Anu.partap@cookchildrens.org.

10.3928/19382359-20190612-01

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