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Characterizing Lone Parenting: A Multi-institutional Pilot Study of the Perceptions of Support and Perceived Stress of Lone Parents of Children With Cancer

2019年12月14日更新者：National Institute of Mental Health (NIMH)

Characterizing Lone Parenting: A Multi-Institutional Pilot Study of the Perceptions of Support and Perceived Stress of Lone Parents of Children With Cancer

This study will describe the perceptions of support and distress outcomes of single/lone parents of a child with cancer.

Background:

Parents and families of children with chronic illnesses have stressors, including financial stress, role strains, separations, and interruptions in daily routines and plans for the future. All of these experiences may lead directly and indirectly to parental stress.
The number of families headed by single or lone parents is increasing. Little work has been done to better understand if the needs of parents who are providing care for a child on their own differ from parents who do not classify themselves as lone. Identifying parents who may need additional support within a pediatric oncology setting is very important so that appropriate support is provided.

Objectives:

- To better understand the social, emotional, and practical effects of lone parents on children with cancer.

Eligibility:

All parents whose child has been diagnosed with cancer between 6 and 18 months before enrolling on the study.
Participants must be able to speak and read English

Design:

Parents will be asked to complete a questionnaire during one of their child s clinic or hospital visits.
The questionnaire will ask about the parenting experience since the child was diagnosed with cancer. It will ask about the support the parent has received from family and friends since the diagnosis.
The questionnaire will take approximately 20 minutes to complete.

研究概览

地位

完全的

条件

癌症

详细说明

Background:

Research examining the potential impact of childhood chronic illness on parents and families has delineated a myriad of stressors that parents may experience, including financial stress, role strains, separations, interruptions in daily routines and plans for the future, and general uncertainty regarding the child s prognosis.
All of these possible experiences may lead directly and indirectly to anxiety, depression, posttraumatic-stress, hopelessness, and feelings of loss of control in parents and families.
The number of families headed by single, or lone parents has increased significantly, with 3 in 10 children now living in single parent homes.
It is not known whether distress is greater for parents who are lone parents.
Lone-parent families earn on average only 55% of what married-parent families earn, and are four times more likely to live in poverty.
It is unclear how lone parents trying to navigate the complex needs of maintaining a home, family, and a chronically ill child adapt to these challenges.
It is also unclear how many parents who check single on a standardized forced choice questionnaire format consider themselves to be lone when it comes to the experience of caring for their child with cancer.

Objective:

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Aim 1: To define and characterize lone parents
Aim 2: To describe perceptions of social support and how they relate to lone and non-lone parenting
Aim 3: To identify distress outcomes in parents of children with cancer who identify themselves as being lone when it comes to the experience of caring for a child with cancer

Study Population:

English and Spanish speaking parents of a child (1through 17 years) with a malignancy, diagnosed 6-18 months before recruitment will be invited to participate in this study.

Design:

-This is a pilot, exploratory study designed to describe the perceptions of support and distress outcomes of single/lone parents of a child with cancer. Participants will be administered a Lone Parent Support Questionnaire designed for this study. The study will be completed in one visit (<30mins).

研究类型

观察性的

注册 (实际的)

275

联系人和位置

本节提供了进行研究的人员的详细联系信息，以及有关进行该研究的地点的信息。

学习地点

美国
- Alabama
  - Birmingham、Alabama、美国
    - University of Alabama at Birmingham
- California
  - Long Beach、California、美国
    - Miller Children's Hospital
- Maryland
  - Bethesda、Maryland、美国、20892
    - National Institutes of Health Clinical Center, 9000 Rockville Pike
- Massachusetts
  - Boston、Massachusetts、美国、02115
    - Dana Farber Cancer Institute
- Mississippi
  - Jackson、Mississippi、美国
    - University of Mississippi Medical Center
- New York
  - New York、New York、美国、10021
    - Memorial Sloan Kettering Cancer Center
- Ohio
  - Akron、Ohio、美国
    - Akron Children's Hospital
- Oklahoma
  - Stillwater、Oklahoma、美国
    - Oklahoma State University
- Tennessee
  - Memphis、Tennessee、美国、38105
    - St. Jude Children's Research Hospital
- Wisconsin
  - Milwaukee、Wisconsin、美国
    - Medical College of Wisconsin

参与标准

研究人员寻找符合特定描述的人，称为资格标准。这些标准的一些例子是一个人的一般健康状况或先前的治疗。

资格标准

适合学习的年龄

18年至 65年 (成人、年长者)

接受健康志愿者

不

有资格学习的性别

全部

描述

INCLUSION CRITERIA:
1. Parents or primary guardians of children (ages 6 months through 17 years) with any malignancy whose child is 6-18 months post-diagnosis.
2. Ability to give informed consent.
3. English or Spanish speaking

EXCLUSION CRITERIA:

Severe psychological distress which - in the judgment of the Principal or Associate Investigators at each respective collection site- would compromise the participant s ability to understand the questionnaire or is likely to interfere with the study procedures or results.
Relapse of malignancy

学习计划

本节提供研究计划的详细信息，包括研究的设计方式和研究的衡量标准。

研究是如何设计的？

设计细节

时间观点：预期

合作者和调查者

在这里您可以找到参与这项研究的人员和组织。

赞助

National Institute of Mental Health (NIMH)

出版物和有用的链接

负责输入研究信息的人员自愿提供这些出版物。这些可能与研究有关。

一般刊物

研究记录日期

这些日期跟踪向 ClinicalTrials.gov 提交研究记录和摘要结果的进度。研究记录和报告的结果由国家医学图书馆 (NLM) 审查，以确保它们在发布到公共网站之前符合特定的质量控制标准。

研究主要日期

学习开始

2009年8月6日

初级完成

2022年12月7日

研究完成

2018年3月8日

研究注册日期

首次提交

2009年8月29日

首先提交符合 QC 标准的

2009年8月29日

首次发布 (估计)

2009年9月1日

研究记录更新

最后更新发布 (实际的)

2019年12月17日

上次提交的符合 QC 标准的更新

2019年12月14日

最后验证

2018年3月8日

Characterizing Lone Parenting: A Multi-institutional Pilot Study of the Perceptions of Support and Perceived Stress of Lone Parents of Children With Cancer