Anticipating these stressors and implementing specific strategies can help ease the distress and vulnerability felt by children and adolescents.
Receiving a cancer diagnosis is likely to cause some level of fear or anxiety in children and adolescents old enough to understand the situation.
“One of the things that can cause fear is just being in a new place with a lot of new people and faces,” explained Amy R. Newman, PhD, RN, CPNP-PC, assistant professor at Marquette University College of Nursing in Milwaukee, Wisconsin. “A lot of children’s hospitals have come a long way in making the physical environment more child friendly, but it can still be overwhelming.”
Pediatric patients with cancer are dealing with all these new things in addition to the vulnerability that comes with not feeling well.
Fear and anxiety can present differently depending on the age of the child, Newman noted. Nurses also must consider the patient’s developmental stage and whether there is developmental delay or other sensory processing disorders.
Younger school-age children may cry or refuse to comply with different things asked of them, and they may be clingier to their parents, Newman said. Older children may refuse to engage or interact with members of the health care team.
Anxiety may also present as difficulty thinking or concentrating, irritability, increased heart rate or fast breathing, increased need for reassurance, headaches, loss of appetite, or upset stomach, constipation, or diarrhea.1
Fear and anxiety may increase as pediatric patients are presented with more new information, people, and environments, Newman explained, noting that having too much information given at once may also increase fear and anxiety. In addition, loud, agitated, or anxious health care staff could increase those feelings in a patient.
Strategies to Reduce Fear
Oncology nurses can play an important role in anticipating these stressors and reducing fear and anxiety for their patients.
Newman said that one of the most important things a nurse can do is maintain a calm and friendly demeanor, regardless of how the patient is acting.
“Maintain a calm presence and don’t allow yourself to get rattled when things are not going as smoothly as you would like,” Newman advised. “I encourage nurses to really engage their patients. Ask them questions about what grade they are in or what they like to do.”
Aurélie Weinstein, PhD, MA, APC, a development psychologist and child and family therapist at Atlanta Center for Wellness and an assistant professor in the Department of Psychological Science at Kennesaw State University in Georgia, echoed this advice, adding that nurses can also directly ask patients what their fears and concerns are.
“When we deny our emotions, they often become bigger,” Weinstein said. “The more we feel like someone understands, the more that fear starts to decrease.”
Weinstein and colleagues conducted a study exploring which psychological interventions nurses felt were most effective for addressing fear during medical treatment. They found 3 strategies to be effective2: educating children by explaining the procedure; providing emotional support to children by listening, answering their worries, or holding their hands; and distracting children through passive and active forms.
For young children, Newman said that nurses can help explain certain procedures involving medical equipment like a stethoscope or blood pressure cuff by showing it to patients and inviting them to touch it or try it out.
“These little gestures can help prepare them as best you can,” Newman said.
Distraction can also be an effective approach. One study looked at the use of patient-selected distractors on pain, fear, and distress during port access or venipuncture. Patients could select from several items such as bubbles, virtual-reality glasses, or handheld video games. Patients who participated in the distraction had significantly less fear and distress as reported by the nurse and a trend toward less fear as rated by the patient.3
In addition, Verna L. Hendricks-Ferguson, PhD, RN, FPCN, FAAN, the Irene Riddle Endowed Chair at Trudy Busch Valentine School of Nursing at Saint Louis University in Missouri, and colleagues have used art as an outlet for pediatric patients to express fear and anxiety or as a method of distraction. In one case study, she employed an art-making project that converted a patient’s meaningful family picture into a paint-by-number canvas to provide a fun activity for the child to focus on.4
“It is important to provide patients with tools to express themselves, especially patients that are school-aged or older,” Hendricks-Ferguson said. “For younger children, play therapy or music therapy may be helpful tools.”
Newman also stressed the importance of engaging the child or adolescent directly.
“Oftentimes we get caught up talking to the parents, and the children are still in the room, hearing things,” Newman said. “We should be intentional about talking to the child and explaining what is happening and what is going to happen. This allows them to be prepared and not surprised.”
Having End-of-Life Discussions
Coping with fear and anxiety might be particularly difficult when pediatric patients are faced with end-of-life discussions.
Nurses play an important role in these discussions, Hendricks-Ferguson said, but may have different comfort levels with addressing these sensitive topics.
Hendricks-Ferguson and colleagues conducted a qualitative-descriptive study exploring the palliative care/end-of-life communication perspectives of a small group of novice pediatric oncology nurses. The study established several themes from its group discussions, including that the nurses felt they lacked effective communication skills and experience to openly discuss some end-of-life issues, how initiating these conversations was difficult, and the importance of being mentored in these situations.5
“The more experienced nurse oftentimes feels more comfortable exploring where a child is at in these situations, whereas a nurse that has less than 1 year of experience is more likely to rely on mentors,” Hendricks-Ferguson said.
She noted that studies are lacking on effective tools for decreasing fear and anxiety in pediatric patients with cancer facing end of life. One recent randomized clinical trial study examined the effect of a legacy making intervention—an action aimed at being remembered—on quality of life among children with advanced cancer. The intervention directed children to create digital storyboards about themselves and upload photos, video, and music. Although the results were not statistically significant, children who participated in the legacy-making intervention experienced small effects in child procedural anxiety and perceived physical appearance compared with a wait-list control group.6
“This is a pioneering area of research, and we need to do more work like this,” Hendricks-Ferguson said.
She recently published results of a pilot study examining the effects of COMPLETE, a communication plan designed to improve end-of-life outcomes via earlier hospice enrollment and reduced pain and suffering among children with cancer at the end of life.7 COMPLETE involves a series of conversations including a pediatric oncologist and registered nurse dyad working collaboratively to guide discussions about goals of care, using conversation guides and visual aids that begin at diagnosis.
Hendricks-Ferguson noted that it is difficult to conduct studies with pediatric patients during end-of-life care because parents are often very protective of their children, even adolescents. For that reason, a lot of strategies employed in the day-to-day practice of medicine are those that nurses have heard about anecdotally or established themselves after years of experience.
Meditation Techniques to Reduce Fear, Anxiety
Guided imagery, deep-breathing exercises, and mindfulness activities are other strategies to consider.
For example, Newman has seen procedural anxiety in pediatric patients, like those diagnosed with acute lymphoblastic leukemia, who require a lot of procedures, specifically lumbar punctures.
“Even just anticipating those procedures, kids can get anxious,” Newman said, noting that she has observed nurses “use guided imagery to calm patients down and get through procedures.”
Hendricks-Ferguson has witnessed nurses effectively use deep-breathing techniques or mindfulness activities to help patients get through painful procedures. “These are 2 techniques that most nurses, even if they did not have much experience, will probably get mentored on by senior nurses,” she said.
Weinstein also mentioned witnessing
effective use of deep-breathing exercises.
“These can include things like blowing bubbles or blowing out a candle,” Weinstein said. “When our body is experiencing fear, it tenses. Deep breathing helps to relax the body. If our body is relaxed, our mind will also relax.”
Weinstein emphasized that although nurses play a vital role in easing the fear and anxiety of pediatric patients, they also function as part of a greater team. Integrating child life specialists and psychologists can be helpful, and including the child’s parents or guardians is equally important.
“Nurses are not facing this alone,”
1. Anxiety in children and teens with cancer. St. Jude Children’s Research Hospital. Updated January 2019. Accessed September 2, 2021. https://together.stjude.org/en-us/care-support/psychology/anxiety.html
2. Weinstein AG, Henrich CC. Psychological interventions helping pediatric oncology patients cope with medical procedures: a nurse-centered approach. Eur J Oncol Nurs. 2013;17(6):726-731. doi:10.1016/j.ejon.2013.04.003
3. Windich-Biermeier A, Sjoberg I, Dale JC, Eshelman D, Guzzetta CE. Effects of distraction on pain, fear, and distress during venous port access and venipuncture in children and adolescents with cancer. J Pediatr Oncol Nurs. 2007;24(1):8-19. doi:10.1177/1043454206296018
4. Bultas MW, Saini S, Marty J, Hendricks-Ferguson VL. Art making from the HEART: a pediatric case study about coping and distraction during oncology treatments. J Hosp Palliat Nurs. 2017;19(6):565-570. doi:10.1097/NJH.0000000000000389
5. Hendricks-Ferguson VL, Sawin KJ, Montgomery K, et al. Novice nurses’ experiences with palliative and end-of-life communication. J Pediatr Oncol Nurs.2015;32(4):240-252. doi:10.1177/1043454214555196
6. Akard TF, Dietrich MS, Friedman DL, et al. Randomized clinical trial of a legacy intervention for quality of life in children with advanced cancer. J Palliat Med. 2021;24(5):680-688. doi:10.1089/jpm.2020.0139
7. Hendricks-Ferguson V, Newman A, Brock KE, et al. COMPLETE (Communication Plan Early Through End of Life): development of a research program to diminish suffering for children at end of life. J Pediatr Nurs. 2021; doi:10.1016/j.pedn.2021.08.010