Including Pediatric Patients in Clinical Encounters

In 2019, stand-up comedian and actor DJ Pryor recorded an interaction with his son while they were watching the season finale of the TV show Empire . Pryor’s son was 19 months old at the time, and his contributions were limited to gibberish, facial expressions, body language, and hand motions. Pryor responded as if they were both adults and his son imitated adult conversation in every way except the use of words. The result is hilarious and heartwarming. Pryor posted a video of the verbal exchange on social media, where it quickly went viral. In addition to providing a welcome break from the often-cantankerous content on social media, the exchange highlights the challenges and opportunities of communicating with children who are unable to communicate using adult language. Very young children can mimic and even understand many aspects of adult communication despite being unable to coherently articulate their perspectives. The communication barrier is usually surmounted in medical encounters by focusing attention on parents and other caretakers. While this can be an effective approach to making medical decisions involving young children, it becomes less so as children mature or with those who have unique perspectives on their own care, but whose cognitive and developmental delays impede mutual understanding. As pediatric patients age and achieve developmental milestones, their perspectives should become a greater part of making decisions about their care. Whether age or disability limits their ability to verbally communicate, these patients can often understand important aspects of the interaction, and the way practitioners behave and communicate can make pediatric patients feel more or less included in the treatment process. Children Should Be Seen and Heard In 1990, the United Nations Convention on the Rights of the Child codified the responsibility to “assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child.” 1 Soliciting the perspectives of children is consistent with the understanding that “disability is created as a result of an interaction between a person and their environment.” 2 This social model differs from the medical model, which views disability primarily as “a deviation from physiological and neurological norms that directly result from disease or trauma.” 3 The social model recognizes that disability is also “socially constructed with ‘disabling barriers and social restrictions’ created by institutionalized practices of society.” 3 The attitudes and communication behaviors of practitioners can create barriers that increase the disabling effect of physical and cognitive deficits. These practices include “the ‘expert model’ of professional practice…where the doctor’s expertise provides legitimation of the authority for control over decision-making and patients have typically not been included in that decision-making process.” 3 Sharing decision-making control with pediatric patients, rather than solely with their caretakers, can give practitioners access to important information and improve patients’ constructive engagement by in their own care. In interviews conducted with 26 children with learning, sensory, and physical disabilities, Stalker et al. report “the strongly positive image which most children had of themselves,” which “flies in the face of much previous research, mostly based on parents’ or professionals’ accounts.” 4 The children were asked, “if they had a magic wand, what they would wish for and why.” 4 Interestingly, most of them did not mention their impairments in their first two wishes, and had to be prompted to describe a wish related to their disabilities. Failure to engage these patients in an age-appropriate manner may increase their negative self-perceptions, the impact of impairments on their day-to-day lives, and their marginalization. 3 The Problem Honoring the right of children to have a voice in their medical care is complicated by many factors, including the perceived capacity of the patients, family dynamics, the nature of the medical problems and treatment goals, and the practitioners’ communication skills. Practitioners may “perceive disabled children as unable to understand what is happening to them, may feel uncomfortable working with children with learning difficulties, want to ‘spare’ them painful information or…lack communication skills.” 4 Failure to solicit the perspectives of children is understandable, particularly when treatment is complex and nuanced, but it can result in missing important information and decrease children’s involvement in other aspects of their care. Research investigating the perceptions of “30 children and young people in residential homes and schools” in England found that “where children had very limited or no use of verbal language or were seen as having a high level of impairment, little effort had been made to find alternative methods of communication.” 4 When coupled with poor practitioner communication skills, low expectations regarding a patient’s communication ability can be self-fulfilling. Stalker and Conners caution that “if adults expect to get little or nothing from communicating with children, that is probably exactly what they will get.” 4 Practitioners’ lack of confidence in their own communication skills or an underestimation of the importance of communicating with pediatric patients may lead to “a failure to make the most eﬀective use of the opportunities that do exist.” 2 Even very young or cognitively impaired patients have perspectives that differ from those of their caretakers, and those perspectives can affect treatment outcomes. Many “children with disabilities are able to identify ‘good practice’” and may perceive that they are not a priority if effort is not made to hear their perspectives. 3 Engaging effectively with pediatric patients allows practitioners to access important information and develop the trust vital to good clinical decision-making. Caretakers and Communication Practitioner reliance on the input of caretakers is documented in medical communication literature. Caretaker input is essential, not only because of their legal responsibility for the care of their children, but because of the significant role they play in how communication occurs. 2 One study reported “that the pediatrician ‘joked around’ more with the child and was ‘more serious’ with the parents,” but involving children in medical encounters requires more than simply building rapport with them and discussing details with their caretakers. 3 Good rapport and communication with caretakers “helps with trust and a child’s conﬁdence, in turn facilitating good communication” with the patient as well. 2 Caretakers are an essential source of information about how children communicate, and soliciting their advice allows practitioners to benefit from their knowledge and experience. This parent’s appeal to practitioners is worth remembering: “Just sit with us ﬁrst, just sit and talk to us and explain…. How does she show pain? Is this normal? How does she communicate? …Just sit down with us….” 2 Time Pressure Practitioners may feel that they lack the time required to elicit the children’s perspectives, particularly those with significant communication challenges. Time pressures may cause practitioners to focus on the procedural aspects of an encounter, rather than on more personal interactions with children, since those aspects of care are considered more important. “It is possible that this perception may itself be a barrier to eﬀective communication.” 2 While time pressures are universal in healthcare, “literature suggests that just giving professionals more time would not, on its own, improve communication and that other elements are needed in order for communication to be eﬀective.” 2 Practitioners who invest the time in developing better communication skills in general, and getting to know individual patients specifically, will improve their clinical effectiveness. In some cases, engaging pediatric patients may not be possible. Stalker and Connors encountered time constraints during a study of “disabled children’s accounts of their everyday lives” and were unable to directly interview two of the children. 4 Their observation rings true for many situations in clinical practice: “Some children have a level of intellectual impairment such that meaningful communication cannot be established in a short space of time. Indeed it would be disrespectful of them, their parents, and those working with them to suggest otherwise.” 4 Improving communication skills and practices can help to keep these instances to a minimum, and help practitioners engage more effectively with as many pediatric patients as possible. What Do Children Want? Garth et al. studied “the experiences and perceptions of Australian children with cerebral palsy (CP) and their parents about communication in the medical consultation.” 3 All the children in the study (ages eight to 12) chose to be interviewed in the presence of their mothers, demonstrating the importance of parental involvement in communication. The researchers reported two themes in the interviews: “the desire to be included in medical consultations and the desire to be informed.” 3 Importantly, the children wanted to be included, “even if they did not understand what was being said.” 3 To these children, “direct communication with the doctor, the doctor asking them questions, and the opportunity to ask questions of the doctor…” indicated inclusion in the encounter. 3 “Importance was placed on being listened to and included in conversation, for the pediatrician to explain things clearly, to have concerns cleared up, and to receive feedback on ways to optimize their physical abilities.” 3 The amount and content of direct communication with children will vary. In Garth’s study, even small age differences resulted in different expectations: “Younger children (eight to nine years of age) were less interested in the partnership, whereas older children (ten to 12 years of age) were more vocal in perceiving a partnership, and their place in it, to be important.” 3 One child (age 12) reported that he wanted to be included in the discussion, but “preferred not to be told the details as they worried him.” 3 He also wanted “to be informed by the doctor of any tests or procedures immediately prior to their occurrence, and it ‘annoyed’ him if he wasn’t told.” 3 The mothers and most of the other children in the study consider this important, as well. Clinicians should determine “(from both children and parents) the degree to which their child patients wish to be included in the consultation” and modify their communication accordingly. 3 Communication Strategies A variety of strategies can be employed to facilitate the involvement of children in medical encounters. According to Stalker and Connors, “Communicating with disabled children is often little different from communicating with any child: It needs to be done in an age-appropriate manner, combining fun with a more serious aspect, as appropriate, so as to engage but not patronize the child.” 4 Establishing a quiet and calm environment reduces anxiety and allows appropriate attention to be placed on communication and procedural tasks. A few minutes of casual conversation about what is important to children, rather than moving quickly to the business at hand, can indicate that they, and not only the procedure, are a priority. Addressing children directly and using their method of communicating facilitates engagement. When appropriate, distractions such as games, books, or videos can improve children’s comfort level. Presenting information below or above children’s level of understanding can both impede communication. An understanding of normal development and the child’s specific impairments can help the practitioner tailor communication to each child’s needs. Attending to a child’s verbal and non-verbal feedback can help practitioners determine a child’s level of understanding and modify the communication approach. Keeping explanations simple, focusing on how procedures will affect children, and encouraging them to express their opinions and feelings can prevent emotional escalation that often accompanies uncertainty. Being honest about any discomfort or pain the procedure is likely to cause, giving frequent reassurances, and using distracting conversation can reduce anticipatory fear. Giving children as much control as possible by allowing them to make choices about procedures can help them feel more like partners in their treatment. Conclusion DJ Pryor’s son could not articulate how he felt about the exchange described earlier, but it is likely that he understood at some level that he was important to his father. Watching him reciprocate attention can encourage us to find ways to engage with our pediatric patients. Communication patterns change as independence and autonomy develop, resulting in greater variety, and requiring more complex practitioner skills. Since “there is no single correct approach when communicating with a child,” practitioners should “actively reflect upon their practice to identify their shortcomings and develop the necessary skills.” 5 We should keep the following admonition from Stalker and Connor in mind: “Researchers and practitioners may be put off attempting to communicate with disabled children because they think it will be too time-consuming and too difficult, because they think some children will not understand what is happening to them nor have a particular view about it, or because they see themselves as lacking the necessary skills or confidence. On most of these counts, they will probably be wrong.” 4 O&P EDGE Note: To access a free resource about communicating with children, visit cdn.bcm.edu/sites/default/files/2015/13/pcg-v21.pdf . 6 John T. Brinkmann, MA, CPO/L, FAAOP(D), is an assistant professor at Northwestern University Prosthetics-Orthotics Center (NUPOC). He has over 30 years of experience in patient care and education. References https://www.ohchr.org/en/professionalinterest/pages/crc.aspx Sharkey, S., C. Lloyd, and R. Tomlinson, et al. 2016. Communicating with disabled children when inpatients: barriers and facilitators identified by parents and professionals in a qualitative study. Health Expectations 19(3):738-50. Garth, B., and R. Aroni. 2003. ‘I Value What You have to Say,’ Seeking the perspective of children with a disability, not just their parents. Disability & Society 18(5):561-76. (See also: Garth, B., G. C. Murphy, and D. S. Reddihough. 2009. Perceptions of participation: Child patients with a disability in the doctor–parent–child partnership. Patient Education and Counseling 74(1):45-52.) Stalker, K., and C. Connors. 2003. Communicating with disabled children. Adoption & Fostering 27(1):26-35. Wood, I. 1997. Communicating with children in A & E: What skills does the nurse need? Accident and Emergency Nursing 5(3):137-41. Palazzi, D. L., M. I. Lorin, and T. L. Turner, et al. 2015. Communicating with pediatric patients and their families: The Texas Children’s Hospital guide for physicians, nurses and other healthcare professionals. Communicating With Pediatric Patients and Their Families: The Texas Children’s Hospital Guide for Physicians, Nurses and other Healthcare Professionals. Houston, TX: Texas Children’s Hospital . Photographs: Lightfield Studios/stock.adobe.com, Africa Studio/stock.adobe.com, panyajampatong/stock.adobe.com.

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