I. Care of Infants, Children, Youth, and Families

E. The ability to support infants, children, youth, and families in coping with stressful events.

Selected Knowledge Areas/Skillsets

Knowledge

Identify factors that may impact vulnerability to stress.
Understand the role of communication, particularly active listening and empathic responding, in building relationships with families undergoing stress.

Skill

Demonstrate an ability to use verbal and non-verbal empathic responses with children and caregivers during stressful events.
Implement a team plan for coping support during medical procedures, including parental presence with guidance, comfort positions, role responsibilities, and distraction techniques to help children refocus their attention.

Stress is often an inherent aspect of the medical environment and experience for many. Impacted by variables in and out of the hospital, such as family dynamics, past medical encounters, child's coping style, developmental age, etc., the role of the child life specialist involves the complex task of attuning to such vulnerabilities and responses, to best support the child and family. In my own experiences, stress was a constant for many children and families as they reported stress about upcoming procedures, stress from being unable to sleep well, stress about what the next test would show, or just general stress being in a hospital setting. As a child life intern, I observed how my supervisors validated these stressors, always reflecting to the families and children that it is okay and normal to feel stressed, but also provided tools and education for coping with this stress.

One mother in the Medical ICU reported that a large point of stress for her was hearing the code bell ring, as it reminded her of her daughter's medical traumas/experiences. Listening empathetically and actively to this, we planned with the mother that should the code alarm go off, when she was present at the bedside, we would have a member of the team go check-in with her and let her know when it was safe to roam the halls again. Other means of supporting children and families included creating opportunities for medical play, procedural support, caregiver and patient education, providing materials to promote comfort, and allowing for moments of respite when needed. While child life cannot remove all stress from the medical environment, my experience helped illuminate how we can clear up misconceptions or improve conditions to eliminate some stress and promote positive coping.

Evidence

BCH Journal Entry Week 5… … we checked in with a father whose child is on end-of-life care in the unit. Lauren asked a few brief questions to see how he was doing and the conversation that ensued spanned topics far greater than anything within the hospital. The father shared stories of his family lineage, hobbies, and hopes for daughter. I was amazed to see how touched this father was that someone took the time to sit and listen to him and this highlighted an aspect of family-centered care which I think is often overlooked by other clinicians, being that sometimes company can be one of the most valuable tools we can offer in the hospital.

BCH Journal Entry Week 8… To begin the exam, myself and the patient’s mother were positioned at the head of the exam table, with the interpreter on hand for questions or concerns that may arise during the VCUG. The patient’s cousin was too young to stay in the room due to the risk of radiation, so I had her sit within view in the waiting area with the iPad as she was engaged in playing with it. The patient, a 13-month-old, was distractible using insights of the sensorimotor stage of development and enjoyed listening to songs– despite the language barrier– looking at lights on toys as they changed colors and crumpling the texture of both the towel and changing pad in his hands. As the exam began, he remained distractible, however, once the radiologists began to prepare for catheterization he started to cry and become fussier on the table. Not only did this make it harder for the technologists, but I also noted that mom became teary eyed watching them. She offered him a pacifier and I suggested ways of positioning such as across his arms “like a hug” to both limit her gaze of the catheter and promote her role in the comfort process. Once the catheterization portion was completed, the patient remained somewhat fussy, but was distracted at varying points and I pointed these out to his mother as signs of typical behavior as opposed to pain response. After the VCUG was complete, he quickly returned to baseline and was able to soothe both in his mother’s arms and in the stroller.

BCH Journal Entry Week 9… On Tuesday in the MICU, I joined CCLS Kristen Hildreth for her interventions of medical play and distraction with a patient having her port accessed. I had previously interacted with this patient, a 4-year-old, dependent on a tracheostomy, who had presented to the hospital following respiratory distress and needing transfer from an out of state hospital. Due to her trach, this patient is difficult to understand at times, but is developmentally appropriate for the preschool stage and loves engaging in play through singing, reading books, and coloring. Based on her prior hospitalizations and the preschool conceptualization of medical care, such as fears of bodily harm and lack of physical autonomy, Kristen suggested we utilize a port teddy bear to act out the procedure and help prepare for the accessing. When beginning the intervention, the patient was playful and open to our dialogue about the upcoming port accessing. Since we had received advanced notice about the care from her bedside nurse, I made a point to engage her in play a few minutes prior and utilize concrete language saying, “first books, then bear, then your turn.” While she did try to delay at a few points, once we offered the medical supplies, the patient began cleaning her bear’s port just as she had seen in her previous procedures. She very gently cleaned the access “button,” applied numbing lotion, and placed a sticker on top. Although these were not the exact same steps as her procedure, having control of the materials helped diminish misconceptions about their use. During the patient’s accessing, we utilized the bear as a comfort item, along with the iPad as a distraction technique. For points at which she needed to be still, I engaged with the iPad to “play” for her. Despite a brief period of upset in response to the poke, the patient quickly returned to her playful/social baseline and continued playing with the iPad just as she had been prior. Following the procedure, the patient's bedside nurse reflected that this port accessing went smoother than any had before child life intervention. It was so exciting to see how the process of preparation and distraction benefited both the child’s coping and comfort and helped to support the clinical staff in performing the procedure.

BCH Patient Chart Note... This Child Life Intern [CLI] met patient and parents to provide an introduction of Child Life Services. Upon entry, this patient was observed awake and alert, in bed, watching TV. Per parents, this patient experiences medical anxiety at times and report patient minimizes symptoms in order to avoid hospitalization. This CLI supported patient’s coping during labs using positive touch, non- threatening language, and deep-breathing prompts. Patient was appropriately tearful and verbalized, “no,” for the duration of the exam. This CLI assisted with transition back to social baseline and provided developmentally appropriate medical play and art materials for patient needs of distraction, comfort, and normalization of the hospital environment. Patient was added to MT referral list per parent’s request. In the future, this patient may benefit from opportunities for medical play, procedural preparation, and distraction. Child Life services will continue to follow this patient for the remainder of their time on 11S. This note has been reviewed and approved by Internship Supervisor, Lauren Dulude, MS, CCLS, ext. 52530. Isabel Rodriguez Child Life Intern Boston Children's Hospital 11S/Radiology

Good Shepherd Pedi Pal Journal Entry Week 1… During one case introduction, I learned about a 19 year old patient continuing her care with Good Shepherd Pedi Pal, as they recently extended their age range to include patients up until age 22. She recently began her freshman year at Simmons College and has been checking in with her social worker and child life specialist about the difficulties she faced around campus with lacking accessibility. While the college has agreed to offer her additional time on tests and private spaces for academic services, based on this patient’s diagnosis, physical accommodations are far more appropriate and necessary. Despite attempts by the patient and Good Shepherd to advocate for these needs, the college has been unhelpful and provided unrealistic expectations. This experience resonated with me as I reflected on the normal stress which college freshmen are placed under to acclimate and find comfort in this new academic and peer environment. Having this amplified by daily physical needs being left unmet only adds to that stress. Yet I’m thrilled to know that I have the opportunity to work with an organization like Good Shepherd which supports children and their families through times of difficulty such as this.