Palliative Care and Symptom Management for the Pediatric Oncology Patient
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 13
- 试验地点
- 1
- 主要终点
- Palliative Care Service Needs of Pediatric Cancer Patients + Their Parents
研究概览
简要总结
The goal of this study is to learn about the communication, decision-making, symptom management, emotional adjustment, and spiritual needs of parents and pediatric patients treated at the Children's Cancer Hospital at M. D. Anderson (MCACC).
Primary Objectives:
- Determine the palliative care service needs of pediatric cancer patients and their parents, including communication, decision-making, symptom management, emotional and spiritual support when receiving treatment for early cancer, treatment for advanced disease, and treatment in the end-of-life period.
- Identify intra-group differences in the categories listed in Objective 1 for pediatric cancer patients receiving treatment (a) for early cancer, (b) for advanced disease, and (c) at end-of-life.
Secondary Objectives:
- Inform the development of a Pediatric Palliative Care Program at the Children's Cancer Hospital at The University of Texas M. D. Anderson Cancer Center (MCACC or MDACC) based on identified needs as determined by primary study aims 1 and 2.
详细描述
PARENT:
The Focus Group:
If you agree to take part in this study, you will attend a 1 1/2 hour group session with 3-9 other caregivers. The group will be led by a group leader and an assistant. The group leader will ask questions to the group about communication, decision-making, symptom management, emotional adjustment, and spirituality experiences and needs during your child's treatment. If you have a child who is also taking part in this study, you will meet separately from your child.
At the time of your arrival and before the beginning of the focus group session, you will be asked to complete a questionnaire. You will be asked about you and your child's age, sex, where you live, your religion (if any), your ethnicity and race, and if there are other children in the family. You will be asked about when you found out your child had cancer, the type of cancer, and when the cancer got worse or came back (if applicable). You will be asked whether others have shared parenting responsibilities, your education level, and if you work and what type of work you do. The questionnaire will take about 5 minutes to complete.
Audiotapes/Transcripts:
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Prospective
入排标准
- 年龄范围
- 10 Years 至 18 Years（Child, Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Inclusion for Children:
- •10-18 years of age
- •MD Anderson Children's Cancer Center (MCACC) cancer patient
- •receiving anti-cancer treatment for disease that is not recurrent or metastatic for cancer diagnosed in the past 3-12 mos or receiving anti-cancer treatment for recurrent or metastatic cancer diagnosed within the past 3-12 months
- •speak & understand English
- •reside in the Greater Houston area
- •provide IRB-approved pediatric assent or informed consent, as age appropriate
- •if < 18 years of age, provide Internal Review Board (IRB)-approved parental permission
- •child's eligibility is not contingent upon parent's decision to participate
- •Inclusion for parents:
- •self-identified parent(s) that has(have) a child eligible for study, per the inclusion and exclusion criteria noted above or has had a child (0-18 yrs of age at time of death) treated for cancer at MCACC who has died in the last 1 to 2 years
- •speak and understand English
- •reside in the Houston metropolitan area
- •provide IRB-approved informed consent
- •attend different focus groups if more than one eligible parent per child (max 2 parents per child)
- •parent's eligibility is not contingent upon the child's decision to participate
排除标准
- •Exclusion for Children:
- •have cognitive impairment, developmental delay, or emotional distress that would limit participation in a group discussion, as determined by the clinical judgment of the investigator
- •younger than 10 years or older than 18 years of age
- •Exclusion for Caregiver:
- •have cognitive impairment, developmental delay, or emotional distress that would limit participation in a group discussion, as determined by the clinical judgment of the investigator.
结局指标
主要结局
Palliative Care Service Needs of Pediatric Cancer Patients + Their Parents
时间窗: 3 Years
Qualitative data collection.
次要结局
未报告次要终点