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Exploring Communication Differences: Complications Children with Development Disabilities Face in Medical Settings

ACLP Bulletin | Spring 2018 | VOL. 36 NO.2

Angeles Nunez, MS, CCLS, CPMT
Wolfson Children's Hospital, Jacksonville, FL

Children with developmental disabilities often face challenges in medical settings where their families and health care providers may be left unsure of how to best interpret the child’s behaviors and nonverbal communication. This is a fundamental topic for many child life specialists and it has become more relevant in recent years as the diagnosis rate for several disabilities has increased, underscoring the importance of refreshing our knowledge in order to continually help our patients to the best of our abilities. In order to best support the children in this population and create a more welcoming and inclusive environment, health care providers will need to have a basic understanding of developmental disabilities and know how to properly assess the child and family while utilizing the appropriate communication strategies.

According to the American Psychiatric Association (2013), neurodevelopmental disorders, also known as developmental disabilities, are characterized by impairments of personal, social, academic, or occupational functioning. In medical settings, children with developmental disabilities may not be able to interpret or express pain the way typically developing children do. The child’s inability to communicate pain and emotion may result in increased frustration, anxiety, and/or challenging behaviors. An important factor to consider is that the lack of verbal language does not mean the child cannot communicate. While verbal language may be lacking, the child is constantly communicating through their body language and behaviors.

A child’s difficulty with verbal communication can cause a strain between the patient and healthcare provider, due to either the subtleness of the stress response or the overwhelmingly overt response. This leaves the child frightened, without support and without a way to communicate (Andrews, 2015). This can lead to not only a stressful experience, but a traumatic one for the child and family. The needs of children with disabilities are very similar to the needs of typically developing children but can be more difficult to interpret. As child life specialists, we need to support this population by reminding health care providers about how medical experiences can affect children with disabilities differently and how their distress or discomfort may be expressed.

The Effect of Medical Care Experiences on Children with Developmental Disabilities

Children with developmental disabilities often have co-existing disorders such as epilepsy, language disorders, attention deficit-hyperactivity disorders (ADHD), and intellectual or sensory integration disorders (American Psychiatric Association, 2013). These children encounter medical settings more frequently than typically developing children, experiencing an overall greater number of physician visits, non-emergency care visits, hospital care, and hospital emergency care visits per year (Muskat et al., 2015). They are at a higher risk for having an accident or injury and are more likely than typically developing children to be taking long term medications (Muskat et al., 2015). Children with developmental disabilities are more likely to have higher levels of anxiety as well as behavioral problems (e.g., noncompliance, self-stimulatory and self injurious behaviors) than typically developing children (Johnson & Rodriguez, 2013). This population often feels pain and discomfort in response to stimuli that typically developing children would not find uncomfortable (e.g., a hug, the texture of the bed sheet, or the smell of the nurse’s perfume; Andrews, 2015). Factors in the hospital setting that can affect children in this population and contribute to increased levels of distress are the child’s hypersensitivity to auditory, visual, or other sensory stimuli and the child’s overall sensory defensiveness, which is the child’s aversion to certain environmental elements (Johnson & Rodriguez, 2013). Other contributing factors include unfamiliar settings and unfamiliar people. While the basic needs of children with developmental disabilities are very similar to those of typically developing children, meeting their needs may be more difficult in an environment that these children cannot control (e.g., sensory stimuli such as loud noises and smells that can occur unexpectedly and lead to a sensory overload).

An important factor to consider is that the lack of verbal language does not mean the child cannot communicate. While verbal language may be lacking, the child is constantly communicating through their body language and behaviors.

Ways that Distress is Expressed in This Population

Children with developmental disabilities may have hyporesponsive (delayed or absent response to stimuli) or hyperresponsive (exaggerated, often negative response to stimuli) reactions during what we would believe to be simple medical procedures, such as having a stethoscope placed on the chest or having a bandage placed on the injured site (Johnson & Rodriguez, 2013). Cognitive impairments may affect the child’s understanding of procedures and their use of coping mechanisms. These children may display socially unacceptable behaviors, or have heightened anxiety and uncommon coping styles that can add further complexity to their process of preparation and coping in a variety of settings including medical settings (Johnson & Rodriguez, 2013). A sensation such as pain can sometimes be communicated through nonspecific and maladaptive behaviors, leaving room for others to misinterpret the emotions being expressed. If healthcare providers do not have adequate knowledge of developmental disabilities and are unaware of the different strategies that can be used with this population, the child is left to be misunderstood and their family is left without support.

Assessing This Population

As child life specialists, part of our role is to educate families and healthcare providers on how children communicate and interpret their surroundings. During initial assessment, it is important to include questions for the family regarding the child’s environmental triggers, which can be any stimuli in the environment that can cause behavioral and/or emotional outbursts.

How does the child react to new people or new environments?
Is the child sensitive to noise or touch?
How does the child communicate?
What techniques do you use to calm the child? Is the child able to self-calm?
Does the child have any preferences (i.e., items, colors, textures, words)?
Is there anything the child considers intolerable (i.e., items, colors, textures, words)?
Has your child had a previous negative experience in a medical setting?

It is essential to work closely with families to learn how the child interacts and communicates (e.g., visual supports such as social stories, visual schedules, first-then boards) and about inflexibility or adherence to routine and transitions. Using techniques that have been successful in the past can improve the child’s understanding of the experience, reducing anxiety and the possibility of behavior outbursts (Autism Speaks, n.d.). Social stories are often used to prepare children for unfamiliar people and places; this can easily be adapted for medical preparation by breaking down the procedure into visual and auditory steps. When creating a social story, it is essential to remember to customize each story for the individual child, making sure that it is developmentally appropriate and every step of the process is included. Typically, social stories will have pictures and words, and the specificity of the steps will vary depending on the developmental level of the child (i.e., while some children may have a very detailed 10-page social story, another child may only need a 3-page social story with just the basics). First-then boards can also be created in order to encourage the child by clarifying a

preferable item/activity after the non-preferable activity (i.e., first use inhaler, then play with toy cars). Visual supports can include printed pictures, drawings, or actual photos of the child and healthcare providers they will be working with. An important means for understanding a child with developmental disabilities is to pay attention to their body language and reactions to different situations; learning to understand how the child may be feeling can help to avoid outbursts (Buchholz et al., 2016). Triggers can be environmental, such as excessive stimuli, or internally driven, such as fear, pain, or separation from parents (Johnson et al., 2012).

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Child Life Interventions

As child life specialists, we work closely with families to learn how each child communicates and how to best help the child cope in medical settings. We need to ensure that healthcare providers are approaching the children in this population with awareness and that they are being assessed continually in order to provide the best care. Often children with developmental disabilities are triggered when their routine changes; even small changes in routine can determine whether the child will continue to cooperate and cope. During preparation, it is important to provide children with simple steps that they can follow, along with visual supports in order to allow for a sense of control in the environment. It may also be helpful during advanced preparation to send visual supports home with the family in order for the child to become familiarized with the events that will occur (Buchholz et al., 2016). As child life specialists, we must remind healthcare providers and the interdisciplinary team about the strategies that can be used with this population. Advocacy is the key to supporting these patients and families. Each child, despite their diagnosis, has a different temperament and may react differently to different situations. Care needs to be individualized and it cannot be assumed that each child with a developmental disability is the same.

REFERENCES

American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Association.

Andrews, V. (2015) Interpreting silent cries: Providing child life services to children with severe cognitive impairment and altered states of consciousness. Child Life Council Bulletin, 33(4), 8-9,

Autism Speaks (n.d.) Taking the work out of blood work: Helping your patient with autism. Retrieved from https://www.autismspeaks.org/ science/resources-programs/autism-treatmentnetwork/ tools-you-can-use/blood-draw-toolkits

Buchholz, M., Nilsson, S., & Thunberg, G. (2016). Strategies that assist children with communicative disability during hospital stay: Parents’ perceptions and ideas. Journal of Child Health Care. 20(2), 224-233.

Johnson, N.L., Lashley, J., Stonek, A.V., & Bonjour, A., (2012). Children with developmental disabilities at a pediatric hospital: Staff education to prevent and manage challenging behaviors. Journal of Pediatric Nursing. 27(6), 742-749.

Johnson, N. L., & Rodriguez, D. (2013). Children with autism spectrum disorder at a pediatric hospital: A systematic review of the literature. Pediatric Nursing, 39(3).

Muskat, B., Burnham Riosa, P., Nicholas, D. B., Roberts, W., Stoddart, K. P., & Zwaigenbaum, L. (2015). Autism comes to the hospital: The experiences of patients with autism spectrum disorder, their parents and health-care providers at two Canadian paediatric hospitals. Autism, 19(4), 482-490.

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