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Pediatric Psycho-Oncology Professionals
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News

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

Recent Research Articles
Cancer

Journal of Adolescent and Young Adult Oncology

  • Barakat LP, Schwartz LA, Reilly A, Deatrick JA, Balis F. (2014) A Qualitative Study of Phase III Cancer Clinical Trial Enrollment Decision-Making: Perspectives from Adolescents, Young Adults, Caregivers and Providers. Journal of Adolescent and Young Adult Oncology. 3(1): 3-11.

    Quinn GP, Murphy D, Knapp CA, Christie J, Phares V, Wells KJ. (2013). Coping Styles of Female Adolescent Cancer Patients with Potential Fertility Loss. 2(2): 66-71.

Journal of Adolescent Health

  • Quinn GP, Murphy D, Wang H, Sawczyn KK, Knapp C. (2013). Having Cancer does not Change Wanting a Baby: Healthy Adolescent Girls’ Perceptions of Cancer- Related Fertility. Journal of Adolescent Health. 52(2) 164-169.

Journal of Clinical Oncology (JCO)

  • Wolfe J, Orellana L, Cook EF, Ullrich C, Kang T, Geyer JR, Feudtner C, Weeks JC, Dussel V. (2014). Improving the Care of Children With Advanced Cancer by Using an Electronic Patient-Reported Feedback Intervention: Results From the PediQUEST Randomized Controlled Trial. Journal of Clinical Oncology. 32(11): 1119-1126.

    Phipps S, Klosky JL, Long A, Hudson MM, Huang Q, Zhang H, Noll RB. (2014). Posttraumatic Stress and Psychological Growth in Children With Cancer: Has the Traumatic Impact of Cancer Been Overestimated? Journal of Clinical Oncology. 32 (7): 641-646.

    Mueller EL, Park ER, Davis MM. (2014). What the Affordable Care Act Means for Survivors of Pediatric Cancer. Journal of Clinical Oncology. 32 (7): 615-617.

Journal of Neuro Oncology

  • Khan F, Amatya B. (2013). Factors associated with long-term functional outcomes, psychological sequelae and quality of life in persons after primary brain tumours. Journal of Neuro-oncology. 111: 355-366.

Journal of Pediatric Hematological Oncology

Journal of Pediatric Oncology Nursing

  • Altay N, Kilicarslan E, San C, Kisecik Z. (2014). Determination of Social Support Needs and Expectations of Mothers of Children with Cancer. Journal of Pediatric Oncology Nursing. 31(3):147-153.

    Beckwitt. (2014). Childhood Cancer Camps: Their Role in Adults Surviving Childhood Cancer Lives. Journal of Pediatric Oncology Nursing. 31(1): 34-40.

    Lewis P, Jordens CFC, Mooney-Somers J, Smith K, Kerridge I. Growing up with Cancer: Accommodating the Effects of Cancer into Young People’s Social Lives. Journal of Pediatric Oncology Nursing. 30(6): 311-319.

Journal of Pediatric Psychology (JPP)

  • Harper FWK, Goodlett BD, Trentacosta CJ, Albrecht TL, Taub JW, Phipps S, Penner LA. (2014). Temperament, Personality and Quality of Life in Pediatrics Cancer Patients. Journal of Pediatric Psychology. 39(4): 459-468.

    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

  • Foster RH, Russell CC, Dillon R, Bitsko MK, Godder K, Stern M. (2014). Relations Among Optimism, Perceived Health Vulnerability, and Academic, Self-Regulatory, and Social Self-Efficacy in Adolescent Survivors of Childhood Cancer. Journal of Psychosocial Oncology. 32(2): 207-223.

    Robinson L, Miedema B, Easley K. (2014). Young Adult Cancer Survivors and the Challenges of Intimacy. Journal of Psychosocial Oncology. [online first]

Minerva Pediatrica

  • Clerici CA, Giacon B, Veneroni L, Ferrari A, Luksch R, Meazza C, Polastri D, Simonetti F, Massimino M. (2013). Psycho-organic diseases in children and adolescents affected by pediatric neoplasms. Minerva Pediatrica. 65(6): 651-667.

Pediatric Blood and Cancer

  • Teall T, Barrera M, Barr R, Silva M, Grennberg M. (2013). Psychological resilience in adolescent and young adult survivors of lower extremity bone tumors. Pediatric Blood and Cancer. 60(7):1223-1230.

  • Schepers SA, ENgleen VA, Haverman L, Caron HN, Hoogerbrugge PM, Kaspers GJL, Egeler RM, Grootenhuis MA. (2014). Patient reportedoutcomes in pediatric oncology practice: suggestions for future usage by parents and pediatric oncologists. Pediatric Blood and Cancer. [online first]

  • Amylon M, Barr R. (2014). Camp programs for children with cancer and their families: review of research progress over the past decade. Pediatric Blood and Cancer. 61(5): 778-787.

  • Wengenroth L, Rueegg CS, Michel G, Essig S, Ammann RA, Bergstraesser E, Kuehni CE. (2014). Life partnerships in childhood cancer survivors, their siblings, and the general population. Pediatric Blood and Cancer. 61(3): 538-545.

  • Connor C, DeLuca H. (2013). Innovative approaches to engage and empower the adolescent and young adult childhood cancer survivor. Pediatric Blood and Cancer. 60(12): 1919-1921.

Pediatrics

  • Buchanan ND, Block R, Smith AW, Tai E. (2014). Psychosocial Barriers and Facilitators to Clinical Trial Enrollment and Adherence for Adolescents with Cancer. Pediatrics. 133:Supplement 3 S123-S130.

Psycho-Oncology

  • Wiener L, Viola A, Koretski J, Perper ED, Patenaude AF. (2014). Pediatric psycho-oncology care: standards, guidelines and consensus reports. Psycho-Oncology. [online first]

  • Harper FWK, Peterson AM, Uphold H, Albrecht TL, Taub JW, Orom H, Phipps S, Penner LA. (2013). Longitudinal study of parent caregiving self-efficacy and parent stress reactions with pediatric cancer treatment procedures. Psycho-oncology. 22(7):1658-1664.

  • Wenninger K, Helmes A, Bengel J, Lauten M, Volkel S, Niemeyer C. Coping in long-term survivors of childhood cancer: relations to psychological distress. Psycho-oncology. 22(4): 854-861.

  • Sveen J, Ellegard A, Steineck G, Kreicbergs U. (2014). They still grieve- a nationwide follow-up 2-9 years after losing a sibling to cancer. Psycho-oncology. 23(6): 658-664.

  • Zebrack B, Kwak M, Salsman J, Cousino M, Meeske K, Aguillar C, Embry L, Block R, Hayes-Lattin B, Cole S. (2014). The relationship between post-traumatic stress and post-traumatic growth among adolescent and young adult (AYA) cancer patients. Psycho-oncology [online first].

Supportive Care in Cancer

  • Hocking MC, Kazak AE, Schneider S, Barkman D, Barakat LP, Deatrick JA. (2014). Parent perspectives on family-based psychosocial interventions in pediatric cancer: a mixed-methods approach. Supportive Care in Cancer. 22(5): 1287-1294.

  • McLoone JK, Wakefield CE, Yoong SL, Cohn. (2013). Parental sleep experiences on the pediatric oncology ward. Supportive Care in Cancer. 21(2):557-564.

The Lancet Oncology

  • Essig S, Li Q, Chen Y, Hitzler J, Leisenring W, Greenberg M. Risk of late effects of treatment in children newly diagnosed with standard-risk acute lymphoblastic leukaemia: a report from the Childhood Cancer Survivor Study cohort. Lancet Oncology. 15(8): 841-851.

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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This Page Last Reviewed on July 14, 2014

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