Sarah R. Brand

Communication Skills Training in Pediatric Oncology: Moving Beyond Role Modeling.

Communication is central to pediatric oncology care. Pediatric oncologists disclose life‐threatening diagnoses, explain complicated treatment options, and endeavor to give honest prognoses, to maintain hope, to describe treatment complications, and to support families in difficult circumstances ranging from loss of function and fertility to treatment‐related or disease‐related death. However, parents, patients, and providers report substantial communication deficits. Poor communication outcomes may stem, in part, from insufficient communication skills training, overreliance on role modeling, and failure to utilize best practices. This review summarizes evidence for existing methods to enhance communication skills and calls for revitalizing communication skills training within pediatric oncology.

Assessment of family psychosocial functioning in survivors of pediatric cancer using the PAT2.0

This study aimed to examine clinical validity and utility of a screening measure for familial psychosocial risk, the Psychosocial Assessment Tool 2.0 (PAT2.0), among pediatric cancer survivors participating in long‐term survivorship care.

A social program for adolescent and young adult survivors of pediatric brain tumors: The power of a shared medical experience

ABSTRACT Survivors of pediatric brain tumors experience several medical and psychosocial late effects including deficits in social competence. This mixed methods study investigated the experience of 19 adolescent and young adult survivors of pediatric brain tumors and 17 parents who participated in a social support program. Qualitative results demonstrated a significant social isolation that was compounded by medical late effects. Survivors perceived social support and acceptance from interactions with peers who have similar medical backgrounds as a key aspect of the group experience. Parents reported increased social confidence among survivors, although they did not report that social gains generalized beyond the group setting. Interventions to promote the transfer of specific social skills are needed.

Preparing youth with cancer for amputation: A systematic review

ABSTRACT Children and adolescents who require limb amputation as part of cancer treatment face many physical and emotional challenges. Preparatory interventions may serve to facilitate positive coping and improve long-term adjustment during pediatric cancer treatment, including decreasing anxiety and postoperative distress. This review aimed to examine and identify the type and degree of psychosocial preparation provided to the child with cancer and family prior to amputation. Electronic databases including Embase, PubMed, and PsycINFO were searched for relevant research articles. Five studies were identified that satisfied inclusion criteria and revealed common themes for preparatory interventions, but results were limited by a lack of empirical approaches and revealed little consensus on pre-operative support prior to amputation. These findings demonstrate that there is a lack of studies to date that have adequately addressed psychosocial preparation prior to amputation for pediatric oncology patients. Future research on preparatory interventions is needed using prospective and quantitative research to establish evidence-based recommendations for interventions to support this vulnerable population.

Development of the “Day 100 Talk”: Addressing existing communication gaps during the early cancer treatment period in childhood cancer

Families’ communication needs during the early cancer treatment period (ECTP) may not be optimally met by current practices. We sought to identify potential communication gaps and to ameliorate these by developing a novel in‐depth conversation between families and their pediatric oncologists, the “Day 100 Talk” (D100), during the ECTP.

What Adult Cancer Care Can Learn From Pediatrics

Focus on Families, Not Just Patients No one doubts the importance of patientcentered care, but pediatric cancer centers know that true patient centerednessmeans having clinicians work in dynamic partnership with sick children’s families. As a child’s primary source of strength and support, the family is a vital part of the health care team. When the family is fully integrated into the care process, the child is more likely to thrive. Indeed, more than a decade ago, pediatric hospitals started using familycentered rounds toactively involvepatients and their families in decision making. By helping the family understand both the inpatient care plan and the discharge plan, family-centered rounds improve efficiency and staff satisfaction. Overall, families are more likely to be considered members of the care team in pediatric than in adult cancer care—a missed opportunity in the adult setting. Pediatric cancer teams recognize that thechild’swell-being and the family’swellbeing aremutually reinforcing. Indeed, the “Standards for the Psychosocial Care of Children With Cancer and Their Families” call for routine assessment of the psychosocial needs of pediatric oncology patients, parents and caregivers, and siblings. Evidence also shows that cognitive behavioral interventions reduce distress in parents and other family members. It is critical to identify which members of the adult patient’s personal network can best inform care planning and provide support during the diagnosis, treatment, and follow-up phases of care. In pediatric and adult cancers alike, support must extend beyond the walls of the medical facility. This support often includes nursing-like duties, such as ongoing medication management, injections, and wound care. An important early service is to train key members of the patient’s support system in how to provide safe, effective in-home care. Pediatric cancer centers are more likely than adult centers to prepare a patient’s family and friends for these roles. One adult care organization that actively pursues family centeredness is Maggie’s, a 17-center network in the United Kingdom that offers adults with cancer and their families a range of free financial, informational, emotional, and social support services. For example, Maggie’s organizes so-called kitchen table venues where patients and families meet and talk with one another and with other families, as well as stress-management sessions for the entire family. At Maggie’s Kids’ Days and Teen Days events, children whose parents have cancer participate in support, informational, and play activities.

How a Child With Cancer Moved From Vulnerability to Resilience

“It is our first round of chemotherapy. We have been in the hospital for 14 days. Anxious and stressed, we are struggling to rearrange our lives. Ben is febrile and neutropenic, his body covered with an angry rash, and he has severe mucositis. The oncology team make their daily rounds. I now see they do not have all the answers. Specialist teams come and go— infectious diseases, dermatology, and surgery. Our oncologist modifies the narcotics and antibiotics, adds an antifungal. No improvement.

The Impact of Cancer and its Treatment on the Growth and Development of the Pediatric Patient

BACKGROUND Cancer treatment can have profound effects on the growth and development of pediatric patients. Different models of psychosocial development and behavioral treatment approaches aid children receiving medical treatment. Providing education, anticipatory guidance, and individualized support to child and their families is a psychosocial standard. OBJECTIVE Clarify the different models of psychosocial development and applicable psychosocial interventions to better prepare and tailor cancer treatment to pediatric patients. METHODS Authors reviewed existing evidenced-based literature in oncology, psychology, developmental, and psychiatric while drawing on case examples and expert knowledge to illustrate the impact of cancer treatment on pediatric patients, analyze developmentally individualized needs, and describe facilitative interventions. RESULT Pediatric patients of all ages cope and adjust better to all phases of treatment when their care is delivered in a developmentally-informed and psychosocially thoughtful way. CONCLUSION Providers can comprehensively prepare their patients and families for treatment better by utilizing a psychosocially- and developmentally-informed framework while meeting individualized unique needs of patients. An integrated multidisciplinary psychosocial support team is facilitative in anticipating and meeting the needs of pediatric cancer patients and has recently become a psychosocial standard of care.

Communication in the Pediatric Oncology Setting

Communication is the most common “procedure” in pediatric oncology and, when done well, can have a lasting positive impact on pediatric patients and their families. This chapter reviews the general purposes and strategies for communication in pediatric oncology with a specific focus on the unique role psychosocial clinicians play in facilitating effective communication between patients, caregivers, and providers. Unique issues and topics in pediatric oncology are discussed including multidisciplinary collaboration, triadic communication and decision-making, developmental considerations, discussing bad news, and communication with caregivers in distress.