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Outline from Elizabeth Klein - 2004

Originally published on November 16, 2009
Most recently updated on November 17, 2009
Psychosocial Impact and Community Reintegration
Presented by Libby Klein
  1. General concepts.
    1. There are 26,000 brain tumor survivors in the USA today (CBTRUS)
    2. According to the IOM report on childhood cancer survivorship “cognitive impairments such as learning disorders, ADHD, developmental delays, mental retardation, and autism…” can occur in childhood cancer survivorship. “Sensory impairments, including hearing loss and cataracts can occur. (President’s Cancer Panel) Other late effects of treatment for brain cancers can include “abnormal growth and maturation, hearing loss, kidney damage, Hepatitis C, infertility, vision problems, and secondary cancers.” (IOM)
    3. Adaptation, adjustment, and integration is an ongoing process
    4. Range of emotions accompany the process and are normal
    5. Factors that impact cognitive late effects include
      1. Age at time of diagnosis
      2. Treatment
      3. Tumor location
      4. Gender
      5. Family history
    6. Cognitive functioning is most often affected in the areas of IQ, slower processing speed, short term memory, sequencing ability, visual perception, organization and attention.
    7. Social skills and community reintegration:  needs a concrete plan to best support survivors
  2. School Issues
    1. “School reintegration into classroom environments may require special arrangements to accommodate temporary or permanent changes in ...(survivors)…mobility, energy level, dietary or medication needs, or learning abilities.” (IOM)
      1. All children should receive pediatric neuropsychological testing at time of diagnosis and yearly, for cognitive changes may occur throughout life.
      2. Neuropsychological testing should not focus on IQ or academic achievement. Tests must include:
        1. Processing speed
        2. Attention
        3. Visual motor integration
        4. Planning and Organization
        5. Visual and Verbal working memory
        6. Tests of math calculation and applied abilities
        7. Reading decoding and comprehension
      3. An IEP should be established using neuropsychological testing recommendations as guidelines.
      4. Thorough communication between treatment center, parent, and school throughout elementary, middle, high and post high schools.
        1. One strategy can include educational record keeping
        2. Request one member of treatment teamwork (social worker or psychologist or educational liaison) with parent and school to insure IEP implementation.
      5. Many of the deficits that are common are unobservable to teachers and so are easily misinterpreted as lack of motivation, behavioral problems or attitude issues.
      6. Deficits do not fit the standard learning disabilities that most teachers are familiar with. Be prepared to educate the educators. Information is available at the following:where to go to get information)
        1. Beyond the Cure’s website
        2. Children’s Brain Tumor Foundation
        3. Wright’s Law
        4. Nancy Keene’s book on Childhood Cancer Survivors
      7. Utilize cognitive remediation, pharmacotherapy, and counseling as recommended within neuropsychological testing results.
        1. Work with a Neuropsychologist around strengthening a mastered skill base, for instance if you have short term memory loss, the use of note taking, daily journals or logs, and calendars can be helpful in remembering necessary daily living tasks.
        2. Medications for ADHD can aide in academic and life roles
  3. Social skills and community reintegration
    1. “Surviving cancer can be a transformative life experience and one that deserves our respect and support, even awe. Each survivor will make their own individual meaning out of their experience with childhood cancer.” – Barbara Jones, APOSW newsletter, 2003
      1. Symptoms of PTSD and depression as a result of a cancer diagnosis may occur at anytime during a survivors lifetime
        1. “Survivors described anxiety, depression and an inability to plan for their future following cancer treatment” (PCP)
        2. There can be a “difficulty integrating the cancer experience as a part of the individual’s life” (IOM)
      2. Attending a social skills group where a survivor meets in a small group with peers and practices responding to common social situations may help the survivor compensate for the difficulty of reading social cues.
      3. Survivors have faced very sophisticated, life and death issues at early developmental stages, leading to a level of maturity. This can be juxtaposed to the survivor’s cognitive or academic limitations. This can cause peers who don’t share the similar interests or sophistication in relationships.’(great work)
      4. Utilizing your strengths: focus on abilities rather than disabilities and help the survivor find their own niche.
      5. Self-advocacy skills are critically needed in order to secure needed accommodations
    2. College and Beyond
      1. Work with high school guidance counselors in tandem with your IEP team to determine the best plan for your success post-high school
      2. If attending college, apply to schools with strong Office of Disabilities programs
      3. Recognize your strengths and limitations to create the best academic plan for yourself: Be your own advocate
      4. If entering the work force, meet with your neuropsychologist to help establish a vocational training plan.
      5. Your high school guidance, career counselor, or case manager from your Child Study Team are the best sources for referrals to vocational rehabilitation, which is important for employment, college or vocational training programs.
  4. Employment issues
    1. Finding appropriate and meaningful work can be very frustrating to survivors
      1. Sheltered work settings are often oriented towards developmentally disabled persons whose social and work skills can be quite different from BT survivors.
      2. Sheltered work settings that are oriented towards BT/trauma survivors are few and far between.
    2. Strategies when job hunting
      1. Get specific with the employer about the skills and tasks required by the position you are interviewing for.
      2. Be aware of your strengths and limitations.
      3. Working with a career counselor or neuropsychologist at your late effects clinic can be helpful to:
        1. Develop a resume that stresses skills rather than chronological work/experience history;
        2. Identify the survivors’ interests, as well as strengths and limitations, and what type of work might best fit with those interests and skills;
        3. Role play interview situations to practice presenting one’s skills and become more comfortable in handling likely questions;
        4. Identify what accommodations the survivor might need in the work place and distinguish between accommodations needed and what skills are needed for certain types of jobs so the survivor is pursuing realistic positions they can fulfill.
        5. Learn the right questions to ask about insurance coverage.
    3. After being hired
      1. Speak with the person at the job to discuss what accommodations you might need to do the job.
      2.  “Survivors should offer specific, creative suggestions, and not wait for employers to make the first move.”  Barbara Hoffman, personal communication, 10/04.
  5. Independent Living issues
    1. Resources for independent but supervised living, or residential fully supervised living vary from state to state
    2. Planning starts at age 14 when parents and school are required by federal law to anticipate options for post high school program/training.
    3. Accessible public transportation is important to consider if survivor is unable to operate a motor vehicle due to seizures, medication, or nature of limitations.
    4. If survivor will always need help making decisions regarding their health care, where they live and where they work, parents need to start the process of obtaining legal guardianship well before the survivor turns 18.
  6. How to cope
    1. Strategies for survivors
      1. Utilize community resources and organizations to locate services that will help support you in school and work, and to live as independently as possible.
      2. Reach out to other survivors through websites that provide a listserv where you can talk to others in a similar situation.
      3. Join a group through your treatment institution or local organization to meet with other survivors.
      4. Focus on what you enjoy and do well; look for ways to do more of those activities.
      5. If consistently discouraged and frustrated with your life, consider counseling.
    2. Strategies for parents
      1. Reach out to parent groups, locally or through the internet including the BT organizations sponsoring this call.
      2. Consider working with one of the parent advocacy organizations in the handout and/or attending Gold Ribbon Days in Wash. DC in June each year.
      3. Use your treatment institution to find out if there are parent groups you can attend there or to put you in touch with other parents who are interested in connecting/networking.
      4. If you find yourself feeling hopeless or overwhelmed, consider counseling for yourself.

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