Seriously ill children may be at increased risk of experiencing abuse and neglect, an issue challenging palliative care providers’ ability to deliver trauma-informed care among pediatric populations.
Children with chronic conditions and disabilities experience neglect and abuse at a higher rate than others, according to research published in the pediatric journal Child: Care, Health and Development. The main risk factors include a lack of social and emotional support, as well as limited community and professional resources, the research found.
Navigating care delivery approaches in instances of child abuse comes with challenges related to health care decisions and outcomes, according to Dr. Ross Cleveland, pediatric palliative care physician at Boston Children’s Hospital.
“The pediatric palliative care approach is very family-focused and having communication and a relationship with them is important,” Cleveland told Palliative Care News. “Assessing goals of care and developing a plan of care can be really difficult when there is an abuse history or even when the abuser is no longer in the picture. It’s this specter of influence in how decisions are made and who is involved in caregiving for the child. It’s more difficult for us to really establish a therapeutic alliance with a child and their family if there is abuse history.”
Cases of physical, mental or sexual abuse are frequently handled in concern with child protection agencies and local law enforcement services, whereas instances of neglect and medical abuse can be more difficult to identify and address, according to Cleveland.
A fragmented health care system and lagging support for these patients represent additional areas of risk, Cleveland indicated.
Children receiving pediatric palliative care often have complex and lifelong medical conditions that are difficult enough for health care professionals to navigate, let alone families, Cleveland stated. Greater caregiving education and support structures are needed to help minimize the risks of abuse and neglect, he said.
“We ask parents and families with oftentimes no medical training or background to be the primary caregiver for these kids,” Cleveland said. “It’s unfortunately not surprising that things fall through the cracks in a system that doesn’t support these parents well. The possibility of neglect and medical abuse becomes a concern if a child’s illness isn’t being treated appropriately by caregivers providing too much or too little care.”
Increased awareness around trauma and abuse is an important part of improving quality outcomes according to Beth Tyson, psychotherapist, childhood trauma consultant and owner of Childhood Trauma Consulting LLC.
Training interdisciplinary staff to recognize the signs of abuse and neglect is a key part of trauma informed care delivery, Tyson said.
“Pediatric palliative care professionals need to be aware of childhood trauma so that they know what symptoms to look for in children, as well as how to prevent re-traumatization,” Tyson told Palliative Care News in an email. “A trauma-informed approach for pediatric care professionals should focus on building trust and safety with the children they care for. This should be their approach whether they know the child experienced abuse or not. The child does not need to disclose their trauma to be treated with trauma-sensitive care.”
Symptoms of trauma in children vary greatly, according to Tyson. Some common signs include patients showing signs of hypervigilance, irritability, emotional outbursts, defiance, impaired memory, difficulty sleeping or eating, regression in development, bedwetting, traumatic play, bodily pain/stomach aches, gastrointestinal distress, and difficulty trusting others, among other things, she stated.
Trust building is a crucial component of reaching children and their families in need, Tyson said. The emotional and spiritual support involved in pediatric palliative care can help address some of the common challenges and symptoms that abused seriously ill children face, she added.
A main part of quality is striking a balance between developmentally appropriate and trauma-informed care, according to Tyson.
“When children experience abuse at the hands of people they trust it is called developmental trauma,” Tyson said. “The child’s foundation of trust in adults, themselves and the world around them, which is necessary for well-being, is significantly damaged. Pediatric palliative care professionals can build trust through consistency in care, transparency before and during medical procedures, keeping their word, providing emotional, mental and physical preparation for care, and [also] telling the truth in age-appropriate terms.”