Educational and Skills Training Program for Parents of Childhood Cancer Survivors Who Have Neurobehavioral Dysfunction
Condition: Cancer Survivor; Cognitive/Functional Effects; Leukemia; Long-term Effects Secondary to Cancer Therapy in Children; Lymphoma; Psychosocial Effects of Cancer and Its Treatment
MeSH terms: Lymphoma; Leukemia
Study type: Interventional

Summary: 
      RATIONALE: An educational and skills training program for the parent of a childhood cancer
      survivor with neurobehavioral dysfunction may help improve the child's school performance,
      thinking ability, and behavior.

      PURPOSE: This randomized clinical trial is studying an educational and skills training
      program for parents of childhood cancer survivors who have neurobehavioral dysfunction.
    

Detailed description: 
      OBJECTIVES:

        -  To determine the feasibility of implementing an educational and skills training
           intervention for parents of a childhood cancer survivor with neurobehavioral dysfunction
           using face-to-face training sessions and phone assistance.

        -  To pilot test and collect preliminarily data on the indirect therapeutic impact of the
           parent training intervention on the child's academic, cognitive, and behavioral
           functioning.

        -  To pilot test and collect preliminary outcomes of the parent training intervention on
           parents of a childhood cancer survivor with neurobehavioral dysfunction.

      OUTLINE: Parent and child participants are randomized to 1 of 2 intervention arms.

        -  Arm I (parent intervention program and usual care): In addition to medical care, child
           participants and their families may access multidisciplinary psychosocial services
           (i.e., usual care). Parents also receive 8 weekly face-to-face training sessions (75-90
           minutes each) with a therapist over approximately 2-3 months. The training sessions
           include integration and didactic review of a parent's role as a behavioral and emotional
           support system for the child's school success; a parent's role as a monitor and
           motivator for school performance; a parent's role as an intervener and teacher of
           effective learning and study strategies; and a parent's role as a child advocate and
           accessor of educational and community resources. Parents are instructed to engage in ≥
           30 minutes of cognitive and academic activities with their child ≥ 4 days a week. The
           therapist will observe the parent (in the home or clinic) apply knowledge and techniques
           learned in the parent training sessions directly with the child at least once after the
           4th parent-therapist session to provide feedback to the parent and child and to assess
           which parents may require more intense training and support. The sessions may be
           videotaped by the parent and provided to the therapist for review and follow up.

      Phone support/assistance is provided by the therapist within 2-3 days following each training
      session to provide additional problem-solving assistance and teaching support to the parents
      while they are implementing the knowledge and strategies learned during the training sessions
      and to measure study adherence and behavioral implementation between the sessions. After
      completion of the training sessions, continued phone support/assistance is provided by the
      therapist every 2 weeks for up to 6 months to provide ongoing support and problem-solving and
      teaching assistance as needed and to promote ongoing maintenance of the trained parenting
      practices with a greater degree of independence. "Booster" in-person sessions may also occur
      if determined to be needed by both the therapist and parent.

        -  Arm II (wait-list/usual care control [UCC]): Child participants and their families
           undergo usual care as in arm I and are placed on a wait-list.

      Parent and child participants in both arms complete battery testing and questionnaires at
      baseline, 3 months, and 6 months. Battery testing includes the Wechsler Individual
      Achievement Test (WIAT-II) and the WISC-IV Working Memory Index and Children's Memory Scale
      (CMS) subtests. Questionnaires include parent, teacher, and child [self-report]
      questionnaires (BASC-II, BRIEF, and SMALSI); Parent Behaviors Questionnaire-Revised; Parent
      Knowledge and Efficacy Questionnaire; and Parent's Treatment Barriers and Satisfaction
      Questionnaire.
    

Intervention name(s): educational intervention; psychosocial assessment and care
Intervention type(s): Other; Procedure
Intervention description(s): Parents receive face-to-face training sessions with a therapist over approximately 2-3 months. Phone support/assistance is provided by the therapist within 2-3 days following each training session and then every 2 weeks for up to 6 months after completion of the training sessions.; Child participants and their families may access multidisciplinary psychosocial services (i.e., usual care).
Allocation: Randomized
Keywords: psychosocial effects of cancer and its treatment; long-term effects secondary to cancer therapy in children; cancer survivor; cognitive/functional effects; childhood acute lymphoblastic leukemia; childhood acute myeloid leukemia in remission; childhood anaplastic large cell lymphoma; childhood large cell lymphoma; childhood lymphoblastic lymphoma; childhood small noncleaved cell lymphoma; childhood nasal type extranodal NK/T-cell lymphoma; childhood grade III lymphomatoid granulomatosis; childhood chronic myelogenous leukemia