All posts tagged: Family Support

Survivorship Matters Blog–Childhood Cancer and Bullying – It’s More Common, and Has Greater Impact, Than You Think

June 3, 2019
Blog Posts, Survivorship Matters Blog No comments yet
Survivorship Matters Blog By CAC2 Member Mary Beth Collins My introduction to childhood cancer and bullying was in 1999 on a neuroblastoma listserve with ACOR (American Cancer Online Resources), the way parents and specialists congregated together before the explosion of social media channels like Facebook, Twitter, or Instagram. My son had only been in treatment a few months, and a parent was sharing an incident that happened on the playground. Her son had been looking forward to getting well enough to return to school, and his fellow classmates decided at recess to taunt him by pretending to be afraid of [...] Read more

CAC2 Webinar–Bright IDEAS for Everyday Living

May 22, 2019
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Our May CAC2 All-member webinar hosted Dr. Robert B. Noll, PhD, Professor of Pediatrics, Psychiatry, and Psychology at the University of Pittsburgh Medical Center. Dr. Noll introduced and explained the Bright IDEAS problem solving technique for families facing the stress of diagnosis, treatment, and beyond. This presentation reviewed the history of efforts to ameliorate a universal psychosocial problem in pediatric oncology (caregiver distress), especially at diagnosis. Dr. Noll explained the approach spearheaded by Bright IDEAS, and shared results from three research trials involving over 1400 caregivers. He also discussed efforts supported by the National Cancer Institute, Children’s Oncology Group, Association of Pediatric Oncologists, [...] Read more

CAC2 Webinar–MyPART: My Pediatric and Adult Rare Tumors Network for Patient Engagement in Rare Solid Tumors Research

December 5, 2018
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December's All-Member Webinar was presented by Dr. Karlyne Reilly, Director of the Center for Cancer Research Rare Tumor Initiative at the National Cancer Institute. Rare tumors pose unique challenges for patients, their families, and the researchers working to develop new therapies. In this webinar Dr. Reilly reviewed these specific challenges and how increased patient engagement in rare tumor research can help to overcome them. MyPART is a patient engagement network being developed in the Center for Cancer Research at NCI focused on children, adolescents, and young adults with rare solid tumors. Dr. Reilly described the network being developed and the goals to [...] Read more

CAC2 Webinar–Functional and Social Independence in Adult Survivors of Pediatric Brain Tumors

November 1, 2018
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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. Brinkman reviewed the impact of independence on quality of life and emotional distress and discussed the implications for interventions. Read more

CAC2 Webinar–Understanding and Enhancing the Role of Children with Cancer and their Parents in Pediatric Oncology Drug Development

August 15, 2018
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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

CAC2 Webinar–Psychosocial Standards of Care for Children with Cancer and Their Families

December 19, 2015
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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

CAC2 Webinar–Advancing the Quality of Life: Strategic Agenda for Childhood Cancer Through Innovation, Ingenuity, and Advocacy

February 24, 2015
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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
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