There are few things worse than seeing your child in pain. It may be that she suffers from a chronic life-limiting or life-threatening illness resulting in prolonged periods of physical pain. He may be required to undergo painful procedures and treatments with painful side effects. The lack of control over how a child feels physically can arouse a sense of fear and helplessness in the whole family. When poorly controlled, symptoms of pain can disrupt sleep and appetite, further limiting the ability to cope with the pain. Pain becomes its own beast, further exacerbating and perpetuating suffering, and making a return to any form of normalcy and quality of life feel as if it’s an unattainable goal for everyone affected. Evidence-Based Strategies for Working with the Pain Acute pain is short lived because the underlying injury heals. We are not as fortunate when pain stems from an underlying condition that lasts longer than a few days or weeks. But, even when pain is more persistent, there are many potential ways to ease a child’s suffering. Each child and her caregivers (parents and professionals) can develop a plan for working with the pain that facilitates communication, connection and comfort. Some options that we find helpful for many kids and families include:
- Ask about the pain. Having a good understanding of how often the pain occurs, how long the pain is lasting, and the intensity of the pain will not only help providers select the most appropriate treatment, but also evaluate whether it is helping.
- Prevent pain when possible by providing preemptive treatment before a procedure (including the elements of pre-procedure education/expectation setting, positioning for comfort, distraction, use of a numbing agent for blood draws or IV placement, sucrose for babies).
- Advocate for adequate pain medication. Children with chronic medical conditions often require larger doses than usual. Misconceptions about drug addiction often lead both parents and physicians to place unnecessary limits on the medication used causing unnecessary suffering in the child. It’s also helpful to understand what options you have for using multiple medications and pain management strategies together, since this often works better than a single therapy.
- Develop a plan to support sleep. This might include medication, but children also respond well to sleep schedules (encouraging activity during the day and sleep at night), reducing noise and distraction, and creating a calming routine before bed (e.g., relaxation exercises, massage, or story time).
- Utilize non-medication pain management strategies. When we experience pain, our muscles instinctively tighten, our breathing becomes shallow, and our attention focuses on our sense of physical distress…all of which serve to worsen the experience of pain. Simple tools such as deep breathing, visualization (e.g., guided imagery, self-hypnosis), and meditation help calm our bodies, ease the mind, and restore a sense of control over the body.
- Encourage activity. Although children in pain may prefer to remain in bed, sometimes the best thing to do is to move. This could include (for example) a short walk in the sunshine, a craft activity, or board game. Each can provide useful distraction, and prevent secondary pain that can develop from immobility.
- Reshape worried thoughts. Anxiety is often high in children with chronic pain due to the unpredictable nature of what the future holds – if the pain will worsen or subside, or how long it will last. Prolonged periods of discomfort can contribute to a style of thinking that can reinforce or perpetuate distress. A child might think, “I can’t bear this,” “The pain will never end.” Parents can help to shift their child’s self-talk to more positive coping statements to help them feel a sense of control. For example, the following statements validate feelings of pain and also provide reassurance of relief: “I know your leg is hurting now AND the medication with help your body to feel more comfortable soon,” “Your deep breathing is working so well to give your body a needed break.”
- Encourage emotional expression. Often children with chronic illness have questions or fears that they feel uncomfortable or afraid sharing with others. They may wish to protect their loved ones from worry or may have sensed that discussion about their thoughts and fears would not be welcomed. Providing children with an opportunity to express their feelings around their illness and its impact on their life can relieve a significant burden. Journaling is one such activity that enables children and teens to express their inner thoughts, questions and concerns in a safe and private place. It can also be a great first step for those who initially may feel less comfortable sharing with others but can open the door for later discussion.
- A word about self-care. Caring for a child in pain is hard work! Families who are doing the very best that they can to weather the storm and persevere on behalf of their loved ones commonly experience exhaustion. This fatigue can lower one’s mood and heighten anxiety, in turn influencing a child’s sense of pain as they read cues from those nearby. Setting time aside for oneself, or to schedule fun experiences together with your child can provide much needed respite, teach a child (by example) about the importance of self-care, and can restore our ability to access our own coping strategies.
Julie Good, M.D. is Clinical Associate Professor of Pediatric Pain and Symptom Management at Stanford University, Department of Anesthesiology, Perioperative and Pain Medicine with a courtesy appointment in the Department of Pediatrics. She is Packard Children’s first board certified physician in Hospice and Palliative Medicine, and is Director of Palliative Care Education and of Inpatient Pain Management at Stanford Children’s Hospital. As a pediatrician, poet and mother of four, Julie supports compassionate care and reflective practice in those who care for children living with life-threatening illness. Michelle Brown, PhD is Clinical Associate Professor of Psychiatry in the Division of Child and Adolescent Psychiatry at Stanford University. She is a pediatric psychologist and serves as an attending on the Pediatric Psychiatry Consultation-Liaison Service and Pediatric Palliative Care Service at Lucile Packard Children’s Hospital Stanford. She also serves as Co-Director of the LPCH/CHC Psychology Internship Training Program.