SibACCESS: Developing a Telehealth Intervention to Address Unmet Psychosocial Needs of Siblings of Children With Cancer
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 发起方
- 入组人数
- 6
- 试验地点
- 2
- 主要终点
- Child Posttraumatic Stress Disorder Symptom Scale for DSM-5
研究概览
简要总结
This study aims to address barriers to psychosocial care for siblings of children with cancer by piloting a group-based telehealth program for adolescent siblings of youth with cancer. The pilot trial will be preceded by a treatment development stage during which study staff will interview English- and Spanish-speaking families and psychosocial providers to assess preferences for program content, format, timing, and cultural feasibility and acceptability, while considering ideas to minimize participation barriers. Information from interviews will inform any revisions to the proposed pilot program. Then, the new SibACCESS program will be tested with a small group of families located in Massachusetts, Delaware, or Rhode Island using video-teleconferencing technology. Families will complete exit interviews to assess program acceptability and perceived benefits.
详细描述
Background:
Prolonged, complicated, and intensive pediatric cancer treatment regimens challenge and disrupt the entire family. Siblings of youth with cancer are a psychosocially at-risk and underserved group. Siblings frequently report strong negative emotions, disruptions to family life, poorer academic functioning, more school absenteeism (school-aged siblings), and riskier health behaviors and poorer health outcomes than comparisons (adult siblings). Approximately one-quarter of siblings meet diagnostic criteria for cancer-related posttraumatic stress disorders. Outcomes are worse for siblings from under-represented minority groups and those with fewer socioeconomic resources. Additionally, siblings report low social support and indicate a strong desire to connect with other siblings. The need for sibling support is well established, as outlined in the recently developed evidence- and consensus-based Standards for Psychosocial Care for Children with Cancer and Their Families. Unfortunately, the Sibling Standard is among those least likely to be met within pediatric oncology programs nationwide.
SibACCESS Program Description:
SibACCESS (Acceptance, Coping, Communication, Engagement, and Social Support) targets the proposed mechanisms of sibling difficulties. The primary goal is to increase siblings' exposure and opportunities to process cancer-related cues to decrease the onset or intensification of posttraumatic stress (PTS). Treatment targets include emotional acceptance, treatment involvement, family communication (via between-session assignments), and social support (fostered by the group format).
SibACCESS is based on acceptance-based cognitive-behavioral frameworks, drawing primarily on trauma-focused CBT (TF-CBT). TF-CBT is a structured, short-term treatment that incorporates cognitive-behavioral approaches to promote recovery from trauma. It is a logical starting point for the present study for multiple reasons: (a) TF-CBT was developed specifically for children and adolescents; parent participation is recommended but not required; (b) it has been tested in a group format and using telehealth; (c) it has demonstrated effectiveness across cultural groups; and (d) it is appropriate for youth who meet diagnostic criteria for PTSD and those with sub-clinical PTS. TF-CBT has not yet been evaluated in the context of childhood cancer and may require some adaptations. Thus, SibACCESS also includes skills from Dialectical and Behavioral Therapy (i.e., self-validation of emotions, mindfulness, radical acceptance) to better address distress tolerance and acceptance of the aspects of cancer that are beyond siblings' control.
研究设计
- 研究类型
- Interventional
- 分配方式
- Na
- 干预模型
- Single Group
- 主要目的
- Supportive Care
- 盲法
- None
入排标准
- 年龄范围
- 12 Years 至 —（Child, Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •2 or more children in the family (i.e., child with cancer and >1 sibling)
- •Sibling(s) and child with cancer each under the age of 18 at the time of cancer diagnosis
- •Sibling(s) can be biologically-related, step-siblings, foster-siblings, or adopted-siblings
- •Parent and sibling(s) fluent in English
- •Sibling(s) 12-17 years of age
- •Sibling report of at least mild posttraumatic stress (score >11 on the Child Posttraumatic Stress Scale for DSM-5)
- •Child with cancer must have received cancer diagnosis at least 3 months prior to the family's enrollment in the study
排除标准
- •A cognitive impairment that would interfere with pilot program and interview completion (as reported by parent)
- •Bereavement
- •Significant externalizing behaviors that would interfere with group participation (as reported by parent)
结局指标
主要结局
Child Posttraumatic Stress Disorder Symptom Scale for DSM-5
时间窗: Within 2 weeks post-intervention, data were collected over a period of up to 4 weeks
The Child PTSD Symptom Scale for DSM-5 (CPSS-V) \[citation\] is a 27-item measure of posttraumatic stress. Strong test-retest reliability, internal consistency, and convergent validity with other child PTSD measures have been established. This survey was administered only to sibling participants. Measure was scored by a total summation, scores may range from 0 to 80. \*Higher scores reflect higher levels of post-traumatic stress symptoms
次要结局
- Strengths & Difficulties Questionnaire (SDQ)(Within 2 weeks post-intervention, data were collected over a period of up to 4 weeks)
- Sibling Perception Questionnaire (SPQ)(Within 2 weeks post-intervention, data were collected over a period of up to 4 weeks)
- Coping Self-efficacy Scale(Within 2 weeks post-intervention, data were collected over a period of up to 4 weeks)
- Emotional Avoidance Strategy Inventory For Adolescents(Within 2 weeks post-intervention, data were collected over a period of up to 4 weeks)
- Perceived Filial Self-Efficacy Scale(Within 2 weeks post-intervention, data were collected over a period of up to 4 weeks)
- Sibling Cancer Needs Inventory (SCNI)(Within 2 weeks post-intervention, data were collected over a period of up to 4 weeks)
- Acceptability of Program(Within 2 weeks post-intervention, data were collected over a period of up to 4 weeks)