A trauma-informed approach supports health and development in children and youth with spina bifida

1. Introduction

Many children experience traumatic life events, characterized by a threat of injury or death to oneself or others, causing substantial distress or helplessness at the time. Traumatic events include natural disasters, community or school violence, domestic violence, medical trauma, traumatic grief, physical abuse, sexual abuse, and neglect. In the United States, approximately 26% of children experience a traumatic event prior to age 4 [1]. For children with spina bifida, medical trauma has particular relevance given frequent and often invasive medical procedures, and maltreatment also has importance given the vulnerability that may stem from developmental differences. Literature specific to spina bifida is scarce; however, anxiety associated with the need for clean intermittent self-catheterization and its treatment with behavioral interventions has been documented [2]. Additionally, the range of surgeries and hospitalizations that children with chronic conditions encounter may provoke pain and fear, thereby increasing the risk for trauma [3, 4, 5].

With respect to the prevalence of maltreatment in children with spina bifida, a study of children under age 2 suggested a 58% increased odds of maltreatment in these children compared to children without a birth defect [6]. For children with a developmental disability in general, the literature on risk of maltreatment remains equivocal, given variable study samples, definitions, and methodologies [7]. Still, several studies have documented an increased risk, including population-based studies in children with multiple disabilities, such as behavioral disorders and intellectual, learning, orthopedic/physical, and speech/language disabilities [8, 9, 10], which may have implications for children with spina bifida. Notably, instances of abuse are often under-reported or unsubstantiated [11].

Approaching youth with spina bifida from a perspective that acknowledges a potentially increased risk for trauma likely has value. Moreover, the young age when children are most susceptible to trauma has significance for children with spina bifida. Early childhood is precisely the time when it is hoped that children with spina bifida will be in a nurturing and therapeutic environment that promotes developmental gains.

2. Risk factors

Children with spina bifida face unique risk factors related to trauma given the influence of their condition on multiple body systems and significant relationships [12]. The correlation between disability status and abuse evokes a broad range of factors and an ecological model helps elucidate risks [7]. An increased probability for experiencing maltreatment and medical trauma in children with disabilities likely relates to their differences in cognition, communication, mobility [13] and health status, and how these bear on interactions at the individual, family, community and societal levels [7].

At an individual level, youth with spina bifida often have unique cognitive and neurological features, including executive functioning deficits, attention problems, and learning difficulties [13, 14, 15]. Secondary to their neurodevelopmental condition, youth with spina bifida may also encounter depression, anxiety, and low self-esteem, leaving them especially vulnerable to experiencing a traumatic event and its sequelae [16]. Children with spina bifida may be accustomed to adhering to routines and relying on others for their intimate needs, making them more likely to conform to abuse and maltreatment. At a family level, the increased stress and conflict shouldered by caregivers may compromise their parenting skills and understanding of their children’s unique needs and developmental level, which may be inconsistent with their chronological age. Some studies have also found that parents of youth with chronic illness are more prone to develop symptoms of traumatic stress [17, 18]. At a community level, Holmbeck et al. [19] found that low socioeconomic status and the presence of a physical disability may be additive risk factors for psychosocial adjustment difficulties. The achievement of typical developmental goals may be interrupted by functional challenges and/or social isolation in individuals with disabilities [20].

Societal risks relate to myths about youth with spina bifida, including beliefs, that no one would abuse children with spina bifida and that they are safer because they are always with trusted individuals [12]. However, statistics, albeit limited, indicate that youth with spina bifida are actually at an increased risk for maltreatment. Moreover, the perpetrator of abuse is often well-known and trusted by the child and family [21]. Another common myth is that children with spina bifida may not remember the trauma. However, young children with cognitive and communication challenges demonstrate recollection through changes in their behaviors or re-enactment of the trauma through their play, drawings, etc. [22]. Furthermore, children with disabilities are often misperceived as asexual or as not perceiving pain [12]. For children who may be insensate in the genital region, this may lead to the belief that a child who is sexually abused is not bothered by it, and simply needs to be removed from that situation without psychological intervention and/or sexuality education. Conversely, youth with spina bifida who experience traumatic events, potentially including urologic procedures, may experience significant distress and benefit from specialized psychological treatment.

3. Sequelae of trauma

Among youth with spina bifida exposed to trauma, some may experience traumatic stress involving the development of reactions that affect daily living even after the traumatic event has ended. Severe and persistent symptoms of traumatic stress constitute an American Psychiatric Association (APA) diagnosis of Post-Traumatic Stress Disorder (PTSD), with various symptoms continuing for over a month following the traumatic event [23]. PTSD symptoms include:

Re-experiencing of the trauma though nightmares, flashbacks, and re-enactment;

Epidemiologic and neurosciences research intersect in describing the profound impact of trauma from childhood adversity on brain development and health and behavioral status across the life span [24]. Consequences include increased psychological problems, such as depression and learning difficulties, along with physical health problems, such as obesity and diabetes [24]. Yet, as noted above, children with spina bifida may face challenges in some of these areas even in the absence of trauma. Unfortunately, a history of trauma may remain un-identified in children with spina bifida as the medical assessments may receive precedence over psychosocial evaluations [20]. A trauma-informed approach provides a biopsychosocial and developmentally-oriented model of care that prioritizes detection of a history of trauma and associated symptoms.

4. Trauma-informed practices

The periodic, longitudinal and interdisciplinary follow-up that has become the standard of care for children with spina bifida stands to benefit from a trauma-informed approach. Such an approach begins with the awareness that trauma constitutes an insult to normal brain development, resulting in atrophy and/or dysfunction in brain structures involved in cognition, memory and emotion, including the frontal cortex, corpus callosum, hippocampus, and amygdala. Trauma also disrupts the hypothalamic-pituitary-adrenal axis, producing an atypical stress response with altered glucocorticoid levels that are sustained through epigenetic changes [25, 26]. Thus, children who experience trauma may have hyperarousal, anxiety, aggression, and disrupted sleep. These consequences may deter attachment to caregivers and development of positive social interactions, especially with early experience of adversity (ages 0–5), when synapses are forming [26]. The treatment for the sequelae of adversity aims to cultivate security and emotional self-regulation by creating supportive relationships within the family and community. Although psychopharmacologic medications, in particular the alpha-adrenergic agonists, may be indicated in some cases to mitigate the stress response, the first line of treatment is relational and socio-emotional [27].

According to the Substance Abuse Mental Health Services Administration (2014), a trauma-informed approach (1) realizes the widespread impact of trauma and understands potential paths for recovery; (2) recognizes the signs and symptoms of trauma in clients, families, staff, and others involved with the system; (3) responds by fully integrating knowledge about trauma into policies, procedures, and practices; and (4) seeks to actively resist re-traumatization [28]. All healthcare providers are encouraged to incorporate an understanding of traumatic stress during their encounters with children with spina bifida, in order to minimize the potential of additional trauma.

Numerous evidence-based practices in psychology (EBPPs) address the trauma needs of children. The APA (2005) identifies EBPPs as interventions that integrate “ … the best available research within clinical expertise in the context of patient characteristics, culture, and preferences” [29, p. 5]. Trauma-focused cognitive behavioral therapy (TF-CBT), one of the most effective interventions for children who have significant psychological symptoms following a traumatic event, may be used with children ages 3 through 18 [30]. This dyadic, components-based intervention addresses the significant emotional and behavioral difficulties related to traumatic life events. Evidence-based approaches can ameliorate the negative effects on development, behavior, and psychological and general health status [29].

EBPPs may require modifications when used with children with spina bifida to accommodate their developmental age, cognitive ability, and other unique needs. Suggestions include slowing down one’s speech, being specific and concrete, and considering that information may require repetition. Using visuals to reinforce verbal messages and requesting feedback helps ensure comprehension [13]. Additionally, effective treatment often involves a variety of supports and education for caregivers, advocacy at children’s schools, and interaction with other systems (i.e. Child Protective Services).

All healthcare providers should routinely provide screening, prevention, and anticipatory guidance to identify children and families exposed to a traumatic event. Identifying a child as being at risk for developing traumatic stress warrants a proper referral to a mental health provider as discussed in the following case example.

5. Case example

The case of Sally, a 4-year-old girl with a history of lumbar level myelomeningocele, Chiari II malformation, ventriculoperitoneal shunt, language delay and neurogenic bowel and bladder, illustrates the principles described above. Sally required a posterior fossa decompression three months ago, due to radiographic changes in her hind brain anomaly that were associated with dysphagia, poor weight gain, and stridor. Sally’s mother brings her to the pediatrician and states, “The neurosurgeon says everything is fine, but she just hasn’t been herself since the surgery.” She reports that Sally is “clingy,” no longer wants to sleep in her room at night, and resists her usual clean intermittent catheterization routine. She complains of headaches and stomachaches and no longer seems interested in playing with peers at her pre-school. Sally’s teacher says she is withdrawn and has forgotten the colors and shapes she used to know. Mother says that she had been “hysterical” at her neurosurgery follow-up visit and needed Child Life support to tolerate the brain imaging and physical examination.

In a purely medical model, the pediatrician’s differential likely would include postoperative problems or shunt malfunction (headaches, stomachaches, behavioral changes, deterioration in learning); exacerbation of neurogenic bowel (headaches, stomachaches); and urinary tract infection (headaches, stomachaches, refusal to catheterize because of pain). Clearly, the potential medical issues cannot be ignored and must be included. However, a biopsychosocial, development-ally-oriented trauma-informed approach provides a broader view of what may be ailing Sally.

In the psychosocial assessment, the pediatrician uses simple and direct questions to learn about what has been happening in Sally’s life. He/she learns that when her mother picks Sally up from school she screams, “no doctor.” At home, Sally pretends to operate on her dolls and exclaims, “She hurt, she die!” Once diagnostic tests rule out medical and surgical problems, the pediatrician and social worker reassure Sally and her mother that she is physically healthy and recommend mental health support to help Sally cope with her distress and future medical treatments.

After a comprehensive psychological evaluation, it was determined that Sally experienced symptoms consistent with medical traumatic stress. Treatment included weekly individual and family therapy sessions using a modified version of TF-CBT and participation in a risk-reduction support group for children with developmental disabilities. The mother participated in collateral sessions to reduce her own feelings of distress related to Sally’s symptoms and to learn positive parenting skills to support Sally. Sally’s therapist worked closely with her school to make trauma-related modifications to her Individual Education Plan, such as allowing time with her counselor, increasing structure, easing transitions, and offering a “safe space” when needed. After one year of mental health treatment, Sally no longer presented with her original trauma-related symptoms, demonstrated increased adherence with her medical team, and functioned well at home and at school.