Sarah Foster, B.S., Tufts University, Boston, MA
Graduate Student: Eliot-Pearson Department of Child Study and Human Development
To examine how child life professionals can encourage health care autonomy among pediatric patients with developmental disabilities, first I will discuss some of my experiences working as a behavior therapist. Although the child life field and the field of applied behavior analysis are distinct professions and require different training, professionals in both fields are likely to encounter circumstances where they must determine how to best support decision-making autonomy among clients with developmental disabilities. While child life professionals may foster health care autonomy and behavior therapists may foster social autonomy, a child or adolescent’s independence in making decisions that affect these goals is critical for professionals in both fields to consider. I hope the experiences I share inspire other professionals working with children and adolescents with developmental disabilities to explore their approaches to support decision-making autonomy as well.
As a former behavior therapist, I worked 1:1 with children and young adults ages 3-22 with a range of
developmental disabilities. My role included aiding clients in building independence by promoting life skills, such as communication and social skills. The team of behavior therapists I worked alongside supported one another as well as the children. More specifically, if a therapist had to step away from a client for a moment, another behavior therapist would engage with that client while the therapist attended to another situation. In these moments, therapists often made decisions with or on behalf of the client to continue implementing programming. Sometimes decisions would be made that may not accurately reflect the child or adolescent’s wishes. For example, a therapist may decide to include a client they are looking after in a game of Candyland, unaware that the client has a strong aversion to games that include bright colors. Although the behavior therapist had the client’s best interests in mind when making the decision, the therapist may not have known the client very well and assumed the client’s preference when determining how to engage the client in an activity. Within this context, such decisions typically led to few consequences on the client’s overall wellbeing, especially compared to the consequences that come from many other decisions that are made on behalf of children and youth in other contexts in life.
Within health care settings, children, youth, and families make many health care decisions, from day-to-day decisions (i.e., timing of treatment), to major parent-led decisions (i.e., treatment choice), to medical and legal decisions (i.e., obtaining assent in a clinical trial). Although child life specialists may not be able to eliminate the negative consequences associated with all health care decisions children, youth, and families encounter, they can still play a role in improving a patient’s health care experience. Child life specialists can advocate for a pediatric patient’s well-being within some health care contexts, particularly in day-to-day health care decisions. Smaller decisions child life specialists may advocate for include providing the patient with the option to adjust their room lighting and allowing patients to utilize preferred distractions during procedures.
Yet, how can child life specialists assure that they are appropriately and accurately advocating
for pediatric patients with developmental disabilities? To address this concern, this article will explore patient interactions with child life and other health care professionals and speak to areas where misinterpretations may occur. The goal is to support child life specialists in recognizing these situations and to guide professionals in determining when their advocacy skills are needed to support pediatric
patients with developmental disabilities accurately and appropriately.
Understanding the Challenges Pediatric Patients with Developmental Disabilities Face When Making Informed Decisions
Beyond the typical challenges many families face when a child becomes more independent, such as parental anxiety, families and children with developmental disabilities face additional challenges as well (Miller, 2018). Developmental disabilities are characterized by the American Psychiatric Association (2013) as impairments of personal, social, academic, or occupational functioning. Some individuals with developmental disabilities face many cognitive, social, and emotional challenges when making informed decisions. Difficulties include difficulty self-reflecting, inaccurately weighing the potential benefits and consequences of a decision, and an inability to read external social cues (Lotan & Ells, 2010; Luman et al., 2008). For example, individuals with autism spectrum disorder (ASD) may have trouble judging when and how to know more or have difficulty telling the differences between their own or others’ preferences and emotions in social situations whereas individuals with attention deficit hyperactivity disorder (ADHD) may be sensitive to the reward associated with a decision and less aware of its consequences (Huang et al., 2017;Luman et al., 2008). Due to the many potential decision-making impairments associated with various developmental disabilities, health care professionals may have difficulty deciphering whether a patient’s decision making is impacted by their developmental disability.
Understanding Potential Biases
Biases come in many forms, yet for a child life professional, biases may include assumptions of a patient’s cognitive ability, assumptions of a patient’s emotional well-being, and assumptions of a patient’s interdependence with others (Lotan & Ells, 2010). These assumptions are often implicit biases, meaning they are often unintentional. To eliminate biases, professionals can examine the specific contextual, cultural, and social factors that may contribute to disparities. For example, historically in the U.S, children rely on many adults in their lives, specifically younger children, and children with developmental disabilities (Lotan & Ells, 2010). For this reason, child life specialists may assume that because a pediatric patient has not verbally expressed their desires, they will be relying on an adult in the room to voice their preferences on their behalf. A child’s vocalizations or lack thereof during health care visits and overall verbal ability should not be the sole determinant of a pediatric patient’s capabilities. Individuals may not be vocalizing health-related questions, treatment preferences, or accommodations for many reasons outside of cognitive impairments. Some patients are afraid of annoying health care providers by asking too many questions; some feel intimidated by the possibility of asking questions that would make them appear ignorant; and some feel that they do not know enough to know what to ask. (Lotan &
Ells, 2010). Child life professionals can ensure they are accommodating diverse communication preferences and eliminating communication biases by asking patients and families about the patient’s communication style and challenges and provide patients with privacy to communicate their needs to preferred adults.
Other contexts where child life professionals may encounter biases about a patient with developmental disabilities may include examples similar to those in the boxes below.
Parent/Caregiver Led Health Care Decisions
Health care professionals may encourage family members to incorporate more opportunities for patients to make decisions in multiple situations in their daily lives, with the goal that decision- making involvement will teach patients the factors to consider when making decisions, the consequences of different options, and the communication skills to negotiate and influence decisions. Whenever possible, involving patients in participating in any health care choice, such as timing of treatment, acknowledges the patient’s role in their own health care decisions, even if the patient cannot play a large role in more consequential health care decisions. A decision may be presented to the patient as open-ended or with limited choice options, depending on the patient’s cognitive ability, age, and the nature of a decision. As an example, a parent may provide their child with a few time choices to take their medicine. If medicine needs to be taken at the same time every day, parents may ask their child if they’d prefer taking medicine in the morning or in the evening, or at 9am versus 10am. If developmentally appropriate, parents, caregivers, and health care professionals may engage in relational exchanges where children are active participants in the exchange, meaning the child asks for advice or an opinion and an adult solicits their view or opinion (Miller, 2018). A relational exchange may include presenting a patient with the option to join a health care blog or to actively seek health care information independently; if the patient asks for advice, a parent or caregiver may provide feedback as to which option they think would be more beneficial for the patient.
Finally, providing children and adolescents with a verbal or written list of values which may or may not have influenced a decision, and asking patients to rank these values teaches the patient to recognize and prioritize their values when deciding. Follow up questions healthcare professionals and family members may ask patients include: why did you make that decision and how do you think your decision affects yourself and others? These questions allow for more self-reflection, which leads to better decision making over time, though child life specialists and family members may need to provide more guidance if individuals do not understand the reasoning behind their choices (Huang et al., 2017). Guidance may include framing the patient’s choice based on evidence in his or her environment. For example, a patient may choose to take their medicine at a certain time for many reasons but explaining what those reasons could be (if the child is unable to do so) and providing the child a chance to explain their reasoning may promote more self-reflection over time.
Medical and Legal Health Care Decisions
Although children and youth cannot make larger medical decisions (such as treatment choices) independently for legal reasons, there are special circumstances where children and adolescents can play a major role in their health care decisions. When a pediatric patient is accepted into a clinical trial, the patient is presented with the opportunity to assent to treatment if providers believe the patient can do so. Capacity is a clinical opinion made by a physician regarding a patient’s decisional abilities to assent to a clinical trial (Johns Hopkins Medicine, 2017). A patient’s capacity to make an informed decision depends on the patient’s age, experience, maturity, and condition. During the assent process, a medical team explains the trial to the patient in a language they can understand, including what is meant to take part and what they can expect. The team may use written forms, videos, graphics, and other visual aids to explain the trial, and the patient is encouraged to talk with family members and ask questions of the research team (National Cancer Institute, 2020). These steps may not be carried out by a research team with a child or adolescent regarded as incapable of assenting to medical treatments for cognitive, social, or emotional reasons. Unfortunately, this is a missed opportunity for children and adolescents with disabilities to play a major role in their health care decisions. Individuals who present for medical consultations want information, good and bad, about all aspects of their condition as well as options for interventions (Lotan & Ells, 2010).
Involving children and adolescents in decision making processes, even by summarizing information regarding the intervention the patient will be receiving, sends the message that youth perspective is important, and this sets the stage for an expectation of increased participation over time (Miller, 2018). Regardless of the role an adult may play in a pediatric patient’s life or what influence they may have over a patient’s health care decisions, pediatric patients with disabilities need voices that accurately reflect their best interests. Child life specialists, parents and caregivers, and other medical professionals are fortunate to be this voice for many pediatric patients with developmental disabilities and may improve their health care experiences and quality of life.
American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders (5th ed.).
Arlington, VA: American Psychiatric Association.
Huang, A., Hughes, T., Sutton, L., Lawrence, M., Xiaohan, C., Zhe,J., & Zeleke, W. (2017). Understanding the Self in Individuals with Autism Spectrum Disorders (ASD): A Review of Literature.
Frontiers in Psychology, 8, 1422–1422. Johns Hopkins Medicine (2017). Johns Hopkins Psychiatry Guide. https://www.hopkinsguides.com/hopkins/view/Johns_Hopkins_Psychiatry_Guide/787159/all/Capacity__Competency__and_Guardianship
Lotan, G., and Ells, C. (2010). Adults with Intellectual and Developmental Disabilities and Participation in Decision Making: Ethical Considerations for Professional-client Practice. Intellectual and Developmental Disabilities, 48(2), 112-25.
Luman, M., Oosterlaan, J., Knol, D. L., & Sergeant, J., A. Decision-making in ADHD: Sensitive to Frequency but Blind to the Magnitude of Penalty? Journal of Child Psychology and Psychiatry 49 (7), 712-22.
Miller, V. (2018). Involving Youth with a Chronic Illness in Decision-making: Highlighting the Role of Providers. Pediatrics, 142(Suppl 3), S142–S148.
National Cancer Institute (2020). Children’s Assent. https://www.cancer.gov/about-cancer/