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Pediatric Psycho-Oncology Professionals
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Recent Books

Recent Research Articles

Additional Resources

  • Includes:
    • Videos
    • Psychosocial Guidelines in Pediatric Oncology
    • The Psychosocial Support and Translational Research Program of the NCI
    • Advance Directives
    • CancerCare
    • Cure 4 Kids
    • Health Care Toolbox
    • Mattie Miracle Cancer Foundation
    • National Cancer Institute: Adolescents and Young Adults with Cancer
    • Seattle Children's Hospital Adolescent and Young Adult (AYA) Cancer Program
    • Striving 4 More
    • Re-Mission
    • Workbooks/Board Games

News

  • Akron Children's Hospital launches app for childhood cancer survivors
    http://mobihealthnews.com/29277/akron-childrens-hospital-launches-app-for-childhood-cancer-survivors/

  • Cultural Approaches to Pediatric Palliative Care
    This guide to cultural information for patient care below is designed as a resource for improving interpersonal relations, increasing understanding, and furthering world class service for the UMass Medical Center diverse patient population. By heightening awareness, enhancing communication and developing better cultural competence we keep patients first: http://libraryguides.umassmed.edu/diversity_guide

  • The Single Fathers Due to Cancer program is dedicated to helping the thousands of fathers who each year lose their spouses to cancer and must adjust to being sole parents. Remarkably, few resources are available for fathers and very little is known about the unique challenges they face and how to best help them through this enormously difficult time. This website offers support, information, and resources to fathers as they adjust to being sole parents and work through their grief and that of their children. The site also provides information for health care professionals in oncology and clinical settings. http://www.singlefathersduetocancer.org
    The program was featured in the NY Times: http://well.blogs.nytimes.com/2013/04/22/a-lifeline-for-widowed-fathers/?ref=health

  • Division 54- Pediatric Psychology Evidence-Based Assessment Resource Sheets
    The following evidence-based assessment resource sheets are intended to offer a summary of the evidence base for standardized measures in different outcome domains. The first set of assessment resource sheets were developed following the evidence-based assessment review series published in JPP in 2008, and represent general resources pertinent to pediatric psychology assessment.
    http://www.apadivisions.org/division-54/evidence-based/assessment-resources.aspx
  • NOW AVAILABLE: Voicing My CHOICES: A Planning Guide for Adolescents & Young Adults
    Voicing My Choices was developed by researchers at the Pediatric Oncology Branch, National Cancer Institute and the National Institutes of Mental Health at the National Institutes of Health and is designed to help young people living with a serious illness to communicate their end-of-life care preferences to friends, family and caregivers.
    TO VIEW/ORDER: www.agingwithdignity.org/vmc
    TO LEARN MORE: "Allowing Adolescents and Young Adults to Plan Their End-of-Life Care"

  • The Society of Pediatric Psychology Committee on Science and Practice has been working with the membership to develop an Evidence-Based Practice resource library to host on the Division 54 website at the following url:
    http://www.apadivisions.org/division-54/evidence-based/index.aspx
    The first part of the library is now complete, which includes about 30 fact sheets to provide accessible information on the prevalence, etiology, consequences, and evidence-based psychological assessment and treatment of common pediatric conditions. From the main EBP Resource page, you can click on "fact sheets" or go directly to:
    http://www.apadivisions.org/division-54/evidence-based/fact-sheets.aspx
    These fact sheets are the result of the outstanding collective effort of over 75 SPP members who made contributions to writing or reviewing fact sheets (see complete list of contributors on the web page). I want to extend a special thank you to all of these members!
    The second part of the library includes evidence-based assessment resource sheets that will provide summaries of standardized measures in different outcome domains. These resource sheets can be found at:
    http://www.apadivisions.org/division-54/evidence-based/assessment-resources.aspx
    We are planning to develop additional EBP resources on evidence-based interventions. Please feel free to share your comments and ideas about the new EBP resource library with me at tonya.palermo@seattlechildrens.org<mailto:tonya.palermo@seattlechildrens.org

Recent Books

  • Pediatric Psycho-oncology: Psychosocial Aspects and Clinical Interventions, 2nd Edition
    Shulamith Kreitler (Editor), Myriam Weyl Ben-Arush (Editor), Andrés Martin (Editor)
    ISBN: 978-1-1199-9883-9
    http://www.wiley.com/WileyCDA/WileyTitle/productCd-1119998832.html

  • Manuel for Pediatric Hematology and Oncology, 5th Edition, edited by Philip Lanzkowsky (ISBN # 9780123751546) 2011

  • Monitoring Quality of Life in Pediatric Oncology Practice, by Engelen V. (Dutch Cancer Society and the Tom Voute Fund) 2011
  • Oxford Textbook of Palliative Care for Children, by Liben. (ISBN # 0199595100, in press, preorder available) 2012
  • Palliative Care for Infants, Children, and Adolescents: A Practical Handbook, edited by Carter B, Levetown M, Friebert S. (ISBN # 1421401487) 2011
  • Pediatric cancer survivors: Neurocognitive Late Effects. Hile S, Montague E, Carlson-Green B, Colte P, Embry L, Annett R. (2011, book chapter in press).
  • Pediatric Oncology: A Comprehensive Guide, edited by Imbach P, Kühne T, Arceci R. (ISBN # 3642203582) 2011
  • Pediatric Palliative Care: Global Perspectives, edited by Knapp C, Madden V, Fowler-Kerry S. (ISBN # 9400725698, in press, preorder available) 2012
  • Pediatric Psycho-Oncology: Psychosocial Aspects and Clinical Interventions, Second Edition, edited by Kreitler S, Weyl M, Arush B, Martin A. (in press, Wiley-Blackwell)
  • Textbook of Interdisciplinary Pediatric Palliative Care, edited by Wolfe J, Hinds P, Sourkes B (ISBN # 1437702627) 2011
  • Therapeutic Activities for Children and Teens Coping with Health Issues, by Hart R, Rollins J (ISBN # 0470555009) 2011

  • Tumors of the Central Nervous System, Volume 2: Gliomas: Glioblastoma (Part 2), edited by M. A. Hayat (ISBN # 9400706170) 2011

Recent Research Articles
Cancer

  • Clanton NR, Klosky JL, Li C, Mulrooney D, Jain N, Srivastava DK, Zeltzer L, Stovall M, Robison LL, & Krull KR. (in press). Fatigue, vitality, sleep and neurocognitive functioning in adult survivors of childhood cancer: A Report from the Childhood Cancer Survivor Study. Cancer. First published online April 11, 2011.

Journal of Adolescent and Young Adult Oncology

  • Knapp C, Quinn GP, & Murphy D. (2011). Assessing the reproductive concerns of children and adolescents with cancer: challenges and potential solutions. Journal of Adolescent and Young Adult Oncology, 11(10), 757-765.

Journal of Adolescent Health

  • Quinn GP, Murphy D, Knapp C, Stearsman D, Bradley-Klug K, Sawczyn K, & Clayman M. Who decides? (2011). Decision making and fertility preservation in teens with cancer: A review of the literature. Journal of Adolescent Health, 49(4), 337-346.

Journal of Clinical Oncology (JCO)

  • Mack JW, Wolfe J, Cook EF, Grier HE, Clearly PD, & Weeks JC. (2011). Parents’ roles in decision making for children with cancer in the first year of cancer treatment. Journal of Clinical Oncology, 29(15), 2085-2090.

Journal of Neuro Oncology

  • Palmer SL, Lesh S, Wallace D, Bonner BJ, Swain M, Chapieski L, Janzen L, Mabbott D, Knight S, Boyle R, Armstrong CL, & Gajjar A. (2011). How parents cope with their child’s diagnosis and treatment of an embryonal tumor: Results of a prospective and longitudinal study. Journal of Neuro-Oncology, 105(2), 253-259.

Journal of Pediatric Hematological Oncology

  • Harila MJ, Niinivirta TI, Winqvist S, & Harila-Saari AH. (2011). Low depressive symptom and mental distress scores in adult long-term survivors of childhood acute lymphoblastic leukemia. Journal of Pediatric Hematological Oncology. 33(3), 194-198.

Journal of Pediatric Oncology Nursing

  • Patterson P, Millar B, & Visser A. (2011). The development of an instrument to assess the unmet needs of young people who have a sibling with cancer: piloting the sibling cancer needs instrument (SNCI). Journal of Pediatric Oncology Nursing. 28, 16-26.

Journal of Pediatric Psychology (JPP)

  • Mullins LL, Fedele DA, Chaffin M, Hullman SE, Kenner C, Eddington AR, Phipps S, & McNall-Knapp RY. (2012). A  clinic based interdisciplinar intervention for mothers of children newly diagnosed with cancer: a pilot study. Journal of Pediatric Psychology; 37(10); 1104-1115.

  • Noll RB & Bukowski WB. (2012). Commentary: social competence in children with chronic illness: the devil is in the details. Journal of Pediatric Psychology, 37(9), 959-966. DOI: 10.1093/jpepsy/jss058.

  • See jpepsy.oxfordjournals.org/content/early/recent for the latest advance access articles from JPP.

  • Barakat LP & Alderfer MA. (2011). Introduction to special issue on family assessment: advancing the science of family assessment in pediatric psychology. Journal of Pediatric Psychology, 36(5), 489-493.

  • Cernvall M, Alaie I, & von Essen L. (2013). The factor structure of traumatic stress in parents of children with cancer: A longitudinal analysis. Journal of Pediatric Psychology, 38(2), 237-240. DOI: ;10.1093/jpepsy/jss125.

  • Dunn MJ, Rodriguez EM, Miller KS, Gerhardt CA, Vannatta K, Saylor M, Scheule CM, & Compas BE. (2011). Direct observation of mother–child communication in pediatric cancer: assessment of verbal and nonverbal behavior and emotion. Journal of Pediatric Psychology, 36(5), 655-575.

  • Gerhardt CA, Fairclough DL, Grossenbacher JC, Barrera M, Jo Gilmer M, Foster TL, Compas BE, Davies B, Hogan NS, & Vannatta K. (2012). Peer relationships of bereaved siblings and comparison classmates after a child's death from cancer. Journal of Pediatric Psychology, 37(2), 209-219.

  • Gilliam MB, Madan-Swain A, Whelan K, Tucker DC, Demark-Wahnefried W, & Schwebel DC. (2012). Social, demographic, and medical influences on physical activity in child and adolescent cancer survivors. Journal of Pediatric Psychology, 37(2), 198-208.

  • Lewandowski A, Toliver-Soko, M, & Palermo, TM. (2011). Evidence-based review of subjective pediatric sleep measures. Journal of Pediatric Psychology, 36(7), 780-793.

  • Mullins LL, Wolfe-Christensen C, Chaney JM, Elkin TD, Wiener L, Hullmann SE, Fedele DA, & Junghans A. (2011). The relationship between single-parent status and parenting capacities in mothers of youth with chronic health conditions: the mediating role of income. Journal of Pediatric Psychoogy. 36(3), 249-257.

  • Rodriguez EM, Dunn MJ, Zuckerman T, Vannatta K, Gerhardt CA, & Compas BE. (2012). Cancer-related sources of stress for children with cancer and their parents. Journal of Pediatric Psychology, 37(2), 185-197.

Journal of Psychosocial Oncology

  • Kent EE, Parry C, Sender LS, Montoya MJ, Morris RA, Anton-Culver H. (2012). “I’m too young for this”: adolescent and young adults’ perspectives on cancer survivorship. Journal of Psychosocial Oncology, 30(2), 260-279. DOI: 10.1080/07347332.2011.644396.

  • Quinn GP, Huang I, Murphy D, & Zidonik Eddleton K. (in press). Young adult survivors of pediatric cancer perceptions of partnering: The impact of survivorship on romantic relationships. Journal of Psychosocial Oncology.

Minerva Pediatrica

  • Massimo LM, & Caprino D. (2011). Adolescents and cancer: discrepancy between untroubled appearance and insight disturbance. Minerva Pediatrica. 63(2). 89-92.

Pediatric Blood and Cancer

  • Brice L, Weiss R, Wei Y, Satwani P, Bhatia M, George D, Garvin J, Morris E, Harrison L, Cairo MS, & Sands SA. (2011). Health-related quality of life (HRQoL): The impact of medical and demographic variables upon pediatric recipients of hematopoietic stem cell transplantation. Pediatric Blood and Cancer, 57(7), 1179-1185.

  • Dieluweit U, Debatin KM, Grabow D, Kaatsch P, Peter R, Seitz DCM, & Goldbeck L. (2011). Educational and vocational achievement among long-term survivors of adolescent cancer in Germany. Pediatric Blood and Cancer, 56(3), 432-438.

  • Engelen V, Detmar S, Koopman H, Maurice-Stam H, Caron H, Hoogerbrugge P,Egeler RM, Kaspers G, & Grootenhuis M. (2012). Reporting health-related quality of life scores to physicians during routine follow-up visits of pediatric oncology patients: Is it effective? Pediatric Blood and Cancer, 58(5), 766-774. DOI: 10.1002/pbc.23158.

  • Patenaude AF, Grootenhuis M, &Noll R. (2011). Pediatric psycho-oncology comes of age: SIOP 2010. Pediatric Blood and Cancer, 56(7), 1154.

  • Phipps S, Buckholdt KE, Fernandez L, Wiener L, Kupst MJ, Madan-Swain A, Mullins L, Robert R, Sahler OJ, Vincent N, & Noll RB. (2011). Pediatric oncologists' practices of prescribing selective serotonin reuptake inhibitors (SSRIs) for children and adolescents with cancer: A multi-site study. Pediatric Blood and Cancer, 58(2), 210-215.

  • Rothenberger LG, Henschel AD, Schrey D, Becker A,& Boos J. (2011). Methodological and ethical aspects of randomized controlled clinical trials in minors with malignant diseases. Pediatric Blood and Cancer, 57(4), 599-605.

  • Roth M, Morrone K, Moody K, Kim M, Wang D, Moadel A,& Levy A. (2011). Career burnout among pediatric oncologists. Pediatric Blood and Cancer, 57(7), 1168-1173.

  • For additional new releases, please visit: http://onlinelibrary.wiley.com/journal/10.1002/(ISSN)1545-5017/earlyview

Pediatrics

  • Wiener L, Zadeh S, Battles H, Baird K, Ballard E, Osherow J, Pao M. (2012). Allowing adolescents and young adults to plan their end-of-life care. Pediatrics, DOI: 10.1542/peds.2012-0663.

  • Feudtner C, Kang TI, Hexern KR Friedrichsdorf SJ, Osenga K, Siden H, Friebert SE, Hays RM, Dussel V, & Wolfe J. (2011). Pediatric palliative care patients: A prospective multicenter cohort study. Pediatrics, 127(6), 1094-1101.

Psycho-Oncology

  • Michel G, Greenfield D, Absolom K, & Eiser C. (in press). Follow-up care after childhood and young adult cancer: Satisfaction and associations with coping style. Psycho-Oncology, 45(9), 1616-1623. DOI: 10.1016-j.ejca.2009.02.026.

  • Michel G, Kuehni CE, Rebholz CE, Zimmermann K, Eiser C, Rueegg CS, & von der Weid NX. (2011). Can health beliefs help explaining attendance to follow-up care? The Swiss Childhood Cancer Survivor Study. Psycho-Oncology, 20(10), 1034-1043.

Supportive Care in Cancer

  • Carey, M. L., Clinton-McHarg, T., Sanson-Fisher, R. W., & Shakeshaft, A. ( 2012). Development of cancer needs questionnaire for parents and carers of adolescents and young adults with cancer. Supportive Care in Cancer, 20(5), 991-1010. DOI: 10.1007/s00520-011-1172-2.

  • Wiener, L., Battles, H., Mamalian, C., & Zadeh, S. (2011). ShopTalk: A pilot study of the feasibility and utility of a therapeutic board game for youth living with cancer. Supportive Care in Cancer, 19(7), 1049-1054.

The Lancet Oncology

  • Kondryn HK, Edmonson CL, Hill JW, & Eden TOB. (2011). Treatment non-adherence in teenage and young adult cancer patients: A review. The Lancet Oncology. 12(1), 100-108.

Additional Resources


  • Videos

  • Psychosocial Guidelines in Pediatric Oncology

  • The Psychosocial Support and Translational Research Program of the NCI has developed several resources for providers to use with their patients and families. These include games, a therapeutic workbook, and educational materials. These materials are available at no cost. To view these materials please visit: Psychosocial Support Resources

  • Advance Directives
    • Child and Family Wishes Document (see Web Only Data)
      Source:
      Fraser J, Harris N, Berringer AJ, Prescott H, & Finlay F. (2010). Advanced care planning in children with life-limiting conditions - the Wishes Document. Archives of disease in childhood, 95(2), 79-82.

    • Five Wishes ® (Aging with Dignity)
      Five Wishes® lets your family and doctors know:
      • Who you want to make health care decisions for you when you can't make them.
      • The kind of medical treatment you want or don't want.
      • How comfortable you want to be.
      • How you want people to treat you.
      • What you want your loved ones to know.

      Five Wishes® has become America’s most popular living will because it is written in everyday language and helps start and structure important conversations about care in times of serious illness.

      Five Wishes® Online was introduced in 2011, allowing people to complete Five Wishes®

       on screen and print out a personalized document immediately. Five Wishes® meets the legal requirements in 42 states and is useful in all 50. It is now available in 26 languages.

  • CancerCare
    http://www.cancercare.org/
    Visit CancerCare’s website for frequent updates and information about new events and cancer news. CancerCare is a national nonprofit organization that provides free, professional support services for anyone affected by cancer.

  • CancerFIGHTClub
    To connect people, resources, and support services in the Canadian community to help “Fight the Fright” of young adult (AYA) cancer.
    www.cancerfightclub.com

  • The Cellie Cancer Coping Kit
    To help address children and caregivers’ need for emotional support during pediatric cancer treatment, The Children’s Hospital of Philadelphia (led by Dr. Meghan Marsac) developed the Cellie Cancer Coping Kit(Cellie Kit). The Cellie Kit is a developmentally-targeted (ages 6-12 years old), research-informed tool designed to help children and parents cope with cancer treatment. It provides evidence-based, cognitive-behavioral coping techniques for a range of stressors. The Cellie Kit can be used across settings (at home, at clinic, during procedures) and providers (nurses, doctors, child life specialists, therapists). The Cellie Kit includes a stuffed toy (Cellie), coping cards, and a caregiver book. Cellie is used for engagement and integrated into the coping tips. The Cancer Coping Cards are a set of 30 cards which provide kids with over 100 tips for dealing with cancer-related stressors such as medical procedures, hospital visits, and feelings of fear and uncertainty. The Caregiver Book offers tips for parents to help children with cancer cope, as well as advice for dealing with parents’ own cancer-related challenges (e.g., caring for siblings, working with the medical team).  For more information about the Cellie Cancer Coping Kit, visit www.celliecopingkit.org or e-mail cellie@email.chop.edu.

  • Cure 4 Kids
    www.Cure4Kids.org
    St. Jude Cure4Kids is a Web site dedicated to improving health care for children with cancer and other catastrophic diseases in countries around the globe. Cure 4 Kids provides continuing medical education focusing on cancer, pediatrics, oncology, and global communication tools to health care professionals and scientists worldwide. Explore this free resource and start collaborating worldwide!

  • Health Care Toolbox
    www.healthcaretoolbox.org
    A health care provider's guide to helping children adn families cope with illness and injury. Includes patient handouts which may be downloaded, informaiton on assessment tools and quick interventions, and information on understanding patient perceptions.

  • Mattie Miracle Cancer Foundation
    https://www.mattiemiracle.com/
    Mattie Miracle is dedicated to finding better treatments for and building awareness of pediatric cancer. The Foundation is committed to addressing the psychosocial needs of children and families living with pediatric cancer as well as educating health care providers on the impact of such a diagnosis on children and their families.

  • National Cancer Institute: Adolescents and Young Adults with Cancer
    http://www.cancer.gov/cancertopics/aya
    http://www.cancer.gov/ncicancerbulletin/072611
    Continually updated portal on adolescents and young adults with cancer.

  • Seattle Children's Hospital Adolescent and Young Adult (AYA) Cancer Program
    http://www.seattlechildrens.org/clinics-programs/cancer/services/adolescent-young-adult-program/
    Dr. Becky Johnson
    Seattle Children’s AYA program gives expert medical care and support to teens and young adults into their late 20s with all forms of cancer.
  • Striving 4 More
    http://www.striving4more.org/page/medical-play-dolls
    Provides information for the creation of medical play dolls.

  • Re-Mission
    www.re-mission.net
    A computer game developed by HopeLab, a non-profit organization, for adolescents with cancer.

  • ShopTalk
    ShopTalk is a therapeutic game designed for children living with cancer or another serious illness.
    It was created by Drs. Cindy Mamalian (an artist and psychologist) and Lori Wiener to help therapists lead conversations with pediatric patients about difficult emotional issues related to the illness that has affected their lives (ages 7 to 16 years). ShopTalk players visit 10 different “shops” around the board, choosing one of 6 “gifts” from each store to place in their individual shopping bag when they choose to answer the question. The shops are named according to different themes: The Ball’s in Your Court sports store, for example, allows players to explore how they would respond to various social scenarios during treatment.
    ShopTalk is available in three versions, one for pediatric cancer patients, one for their siblings, and one for children whose parent have cancer. All questions in both versions of the game are written in Spanish as well as in English. Therapists who are interested in obtaining a copy of the game should contact Dr. Wiener directly at wienerl@mail.nih.gov.
  • This is My World
    This workbook was designed as a psychotherapeutic tool for therapists to use when working with children and adolescents who have been diagnosed with a chronic or potentially life threatening illness. The pages within the workbook contain writing, drawing, crossword puzzles, and other fun activities that address items such as family, friends, favorite activities, coping, and loss. Children and their families enjoy going back years later to read what they had written about their journey of living with their illness. Those interested in obtaining copies of the workbook should contact Sima Zadeh at zadehsl@mail.nih.gov.

  • Katie Finds Her Courage
    This book was written for families who have a child with neurofibromatosis type 1 (NF1). It tells the story of a child who is learning about having NF1 in words that children can understand and then finds the courage to share the information with her class. The book has activities for the child to engage in, a glossary of terms, and tips for teachers. PDF available for download at: http://pediatrics.cancer.gov/scientific_programs/psychosocial/educational.asp

Disclaimer:
While we tried to include potentially useful resources, this website is not exhaustive. New and additional resources may be available. Please let us know if there is a journal article, book, or resource you would like to be included.

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