All posts tagged: Family Support

Functional and Social Independence in Adult Survivors of Pediatric Brain Tumors

October's All-Member webinar was presented by Tara Brinkman, PhD, Assistant Member in the Departments of Epidemiology and Cancer Control and Psychology, St. Jude Children’s Research Hospital. Dr. Brinkman's recent, first-of-its- kind study sheds light on the degree of achievement of independence by survivors of pediatric brain tumors. Her talk highlighted the prevalence of independence and risk factors associated with non-independence in adult survivors. As part of the presentation, Dr. Brink reviewed the impact of independence on quality of life and emotional distress and discussed the implications for interventions. Read more

Understanding and Enhancing the Role of Children with Cancer and their Parents in Pediatric Oncology Drug Development

This month's webinar was presented by Stacy Crane, Predoctoral Fellow at Indiana University School of Nursing.  She described the experience of participating in a Phase I clinical trial from the perspective of the parents of children battling cancer. While overall, parents do not regret their child participating in a phase I clinical trial and would recommend participation to other parents of children with cancer, there are implications for clinicians and researchers who work with children with cancer and their families. One way to improve experiences in early phase clinical trial participation is to ensure that the side effects that impact the patients during these [...] Read more

Psychosocial Standards of Care for Children with Cancer and Their Families

In this All-Member webinar for December 2015, CAC2 welcomed presenters: Dr. Lori Wiener--Co-director of the Behavioral Science Core and Head of the Psychosocial Support and Research Program at the pediatric oncology branch of the National Cancer Institute Dr. Mary Jo Kupst--Pediatric psychologist and Emerita Professor of Pediatrics at the Medical College of Wisconsin Dr. Anne E. Kazak--Co-director of the Center for Healthcare Delivery Science at Nemours Children’s Health System, A. I. du Pont Hospital for Children Psychosocial Standards of Care for Children with Cancer and Their Families will be published in December 2015 in a special supplement of Pediatric Blood & Cancer. [...] Read more

Advancing the Quality of Life: Strategic Agenda for Childhood Cancer Through Innovation, Ingenuity, and Advocacy

During our February All-Member webinar our guest, Rebecca Kirch, Director of Quality of Life and Survivorship for the American Cancer Society, discussed and answered questions about the quality of life strategic agenda and its specific relevance for childhood cancer, including information about the upcoming Institute of Medicine March workshop on comprehensive childhood cancer care. Research has improved treatments and boosted survival in some types of pediatric cancer, but treatment toxicities still cause a majority of children to experience distressing side effects and late effects — conditions that often cause significant suffering that continues into adulthood and can last a lifetime. [...] Read more