How Can Child Life Specialists Help Hospitalized Kids?
A Parent Asks:
My daughter has been hospitalized with a serious illness that will require many invasive procedures. It was suggested that child life services be involved in her care. What can a child life specialist do for my daughter?
The Parent Coach Advises:
Certified child life specialists (CCLSs) have many roles in caring for pediatric patients in the health care environment (Table 1). Certified by the Child Life Council, CCLSs are trained professionals who help children cope with the stress and uncertainty of illness, injury, a new diagnosis of disease, and frightening medical experiences.
With their background in child development, CCLSs are focused on the children’s perspective and their understanding and perceptions of what is happening to them and in the environment around them. CCLSs also provide support to the other members of the health care team. Effective, empathetic communication is an essential skill for physicians who care for pediatric patients and their families. It can lead to improved outcomes for children, their families, and even the physicians themselves.1 CCLSs are trained communicators who can help health care professionals develop these skills, especially in situations that warrant delivering bad news, such as in intensive care settings or when children face a terminal illness.
CCLSs work in outpatient clinics, emergency departments, surgical areas, intensive care settings, private medical and dental offices, and any other setting in which children and families cope with challenging and potentially overwhelming situations. CCLS also work in legal arenas, bereavement programs, special-needs camps, community outreach programs, funeral homes, home care, hospice, schools, trauma or crisis teams, and child advocacy centers.
Play and the CCLS
During hospitalization, school-aged children are isolated from their home and school environments. Children’s response to hospital stays varies across developmental levels. In younger children, stress might manifest as physical symptoms such as feeding difficulties, weight loss, and stomachaches. As children age, stress can manifest as anxiety, irritability, and attention difficulties; older children often show physical symptoms, too.2
Play is an integral part of healthy child development. In addition to providing necessary physical activity, play allows children the opportunity to explore and learn about their environment. Play with adults allows for the development of healthy attachments and relationships with caregivers and opportunities to imitate and practice adult roles. Independent play or play with other children with less adult guidance allows children to learn about their own likes and dislikes and practice turn taking, sharing, and leadership skills.3
While some health care providers might believe that CCLSs engage in “play” in a generic sense, they actually provide therapeutic play—specialized activities that are developmentally supportive and that facilitate the emotional well-being of a pediatric patient. Therapeutic play consists of at least one of the following: encouraging emotional expression (eg, reenactment through doll play); instructional play (eg, educating about medical experiences), and physiologically enhancing play (eg, blowing bubbles as a relaxation technique).4 Research has shown the positive effects of therapeutic play among hospitalized children, such as lowering anxiety before surgery. It also has been associated with higher levels of family satisfaction.5
CCLSs use a variety of therapeutic play tools and activities such as coloring books created to prepare children for visits to the operating room, iPad apps to educate children about a disease and its treatment, and programs to acknowledge the completion of a course of treatment (eg, the Beads of Courage program). Around-the-clock access to playrooms filled with age-appropriate and developmentally appropriate toys, regularly scheduled activities, and bedside activities for children in isolation are the usual practice in child life departments.
CCLSs create games to facilitate coping and relaxation using childhood favorites such as bubble blowing for deep breathing. Activities encouraging self-expression include the use of frequently used medical supplies (eg, syringe painting), “feelings faces” expressions of emotions that day, and open-ended questions (eg, “The worst thing about the hospital is … ”). Hospital bingo, a child life favorite, often is offered via closed-circuit television. Most frequently, medical play includes dolls with central lines, catheters, monitor stickers, or other medical devices. For children in pain, progressive relaxation exercises include familiar and enjoyable activities. The work of a child life specialist requires creativity, flexibility, and a strong knowledge of child development.
The American Academy of Pediatrics considers child life services to be an essential component of quality pediatric health care and to be integral to family-centered care.6 Children and parents who received care from a CCLS appear to have better outcomes related to emotional distress, coping during procedures, adjustment during and after hospitalization, and recovery from surgery.7
Additionally, CCLSs provide support services such as taking notes for parents and caregivers during family meetings with the medical team and coordinating family education days for specific conditions. Education for siblings about diagnoses, treatment, and involvement in hospital visits, along with summer camping programs, are other services provided to patients by child life departments.
Research once had pointed to a disconnect in the perception of the role of the CCLS in the care of child patients, with health care professionals perceiving child life services as diversion or entertainment for the child, versus the CCLSs’ perception of being a member of health care team.8 Research suggests that children and parents who receive care from CCLSs appear to have better outcomes related to emotional distress, coping during procedures, adjustment during and after hospitalization, and recovery from surgery.7,9
The care provided by CCLSs typically is not an insurance-reimbursable service. Child life departments are funded through a combination of hospital budgets (mainly for positions, benefits, and continuing education), grants from foundations, community service groups, the Children’s Miracle Network and other not-for-profit organizations, endowments, and planned giving. Researchers are investigating CCLSs’ cost-effectiveness in radiology, surgery, emergency departments, and procedural areas, in relation to specific interventions such as therapeutic play, procedural support, and support groups.
The implementation of the Patient Protection and Affordable Care Act brings a greater emphasis on measuring the patient experience in the health care setting—for example, using the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey. Medicare reimbursement for inpatient hospitals is linked to HCAHPS participation, and although pediatric hospitals are not now required to participate, work under way to develop a pediatric HCAHPS survey. More information is available at the resources listed in Table 2.
Cora M. Taylor, PhD, is a pediatric psychologist at the Geisinger-Bucknell Autism and Developmental Medicine Institute in Lewisburg, Pennsylvania.
Neelkamal Soares, MD, is a developmental-behavioral pediatrician at the Geisinger-Bucknell Autism and Developmental Medicine Institute.
Rebecca Drumheller, CCLS, is the child life team leader at Janet Weis Children’s Hospital at Geisinger in Danville, Pennsylvania.
Linda S. Nield, MD—Series Editor, is a professor of pediatrics at the West Virginia University School of Medicine in Morgantown.
1. Levetown M; American Academy of Pediatrics Committee on Bioethics. Communicating with children and families: from everyday interactions to skill in conveying distressing information. Pediatrics. 2008;121(5):e1441-e1460.
2. Hägglöf B. Psychological reaction by children of various ages to hospital care and invasive procedures. Acta Paediatr Suppl. 1999;88(431):72-78.
3. Ginsburg KR; American Academy of Pediatrics Committee on Communications; American Academy of Pediatrics Committee on Psychosocial Aspects of Child and Family Health. The importance of play in promoting healthy child development and maintaining strong parent-child bonds. Pediatrics. 2007;119(1):182-191.
4. Fisher EP. The impact of play on development: a meta-analysis. Play Cult. 1992;5(2):159-181.
5. Li HCW, Lopez V. Effectiveness and appropriateness of therapeutic play intervention in preparing children for surgery: a randomized controlled trial study. J Spec Pediatr Nurs. 2008;13(2):63-73.
6. American Academy of Pediatrics Committee on Hospital Care and Child Life Council. Child life services. Pediatrics. 2014;133(5):e1471-e1478.
7. American Academy of Pediatrics Committee on Hospital Care and Institute for Patient- and Family-Centered Care. Family-centered care and the pediatrician’s role. Pediatrics. 2012;129(2):394-404.
8. Cole W, Diener M, Wright C, Gaynard L. Health care professionals’ perceptions of child life specialists. Child Health Care. 2001;30(1):1-15.
9. Brewer S, Gleditsch SL, Syblik D, Tietjens ME, Vacik HW. Pediatric anxiety: child life intervention in day surgery. J Pediatr Nurs. 2006;21(1):13-22.