Mixed Methods Study on Navigating Pregnancy and Parenthood With Lyme Disease
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 发起方
- 入组人数
- 30
- 试验地点
- 2
- 主要终点
- Understand the lived experiences of pregnancy and parenting among gestational parents with LD, PTLDS, and/or CL
研究概览
简要总结
This is a mixed methods study exploring the experiences of pregnancy and parenting among participants with Lyme disease. Eligible participants will have been diagnosed with Lyme disease (LD), post-treatment Lyme disease syndrome (PTLDS), and/or chronic Lyme (CL) either during or before a prior pregnancy. Participants will complete quantitative surveys on topics such as their medical history, their child(ren)'s development, and demographic information. They will then participate in a qualitative interview where they will be asked about their experiences with pregnancy and with parenting their child(ren) in the context of their condition.
详细描述
Patients with chronic conditions may experience the perinatal period and the experience of parenting differently than their healthy peers. The purpose of this study is to understand the lived experiences of pregnancy and parenting among gestational parents with Lyme disease.
Participants may be included in this study if they report having received a diagnosis of Lyme disease (LD), post-treatment Lyme disease syndrome (PTLDS), or chronic Lyme (CL) and they have given birth to at least one liveborn child. The investigators hypothesize that patients with LD/PTLDS/CL will experience unique challenges related to pregnancy, experiences in medical care settings, and their child's development.
Enrolled participants will complete a brief set of online quantitative questionnaires on topics such as their demographic characteristics, family information, Lyme disease histories, and mental health. The investigators will report on these data to illustrate similarities and differences between participants in the study for potentially relevant factors (e.g., timing of Lyme diagnosis relative to pregnancy, symptoms, mental health concerns). The questionnaires will be followed by an in-depth qualitative interview in English with each participant to learn about their experiences related to pregnancy and parenting with LD/PTLDS/CL, including specific questions about navigating the health care system, information seeking behaviors, and their child's development.
研究设计
- 研究类型
- Observational
- 观察模型
- Other
- 时间视角
- Other
入排标准
- 年龄范围
- 18 Years 至 —(Adult, Older Adult)
- 性别
- Female
- 接受健康志愿者
- 否
入选标准
- •Over 18 years of age and reside in the United States or Canada
- •Diagnosed with acute Lyme disease, PTLDS, and/or Chronic Lyme by a health care provider while they were pregnant OR PTLDS/CL prior to becoming pregnant with ongoing symptoms during pregnancy
排除标准
- •Under 18 years of age
- •Live outside of the United States or Canada
- •Never been diagnosed with Lyme disease by a medical provider
- •Never been pregnant
- •Never given birth to a liveborn infant
- •Previously participated in a qualitative study about their experience with Lyme disease
- •Do not want to agree to having their interviews audio recorded
结局指标
主要结局
Understand the lived experiences of pregnancy and parenting among gestational parents with LD, PTLDS, and/or CL
时间窗: 3/20/2024 - 3/1/2025
Semi-structured qualitative interviews will be conducted with parents with LD, PTLDS, and/or CL to understand their lived experience. The interviewer will follow a structured interview guide about participants' Lyme disease history, pregnancy, parenting experience, relationships, and their priorities. The interviewer will ask open-ended questions to understand participants' context and allow participants to share what they feel is important to them.
次要结局
- 36-Item Short Form Survey (SF-36)(3/20/2024 - 3/1/2025)
- Posttraumatic Diagnostic Scale (PDS-5)(3/20/2024 - 3/1/2025)
- Positive Affect and Well-Being Scale(3/20/2024 - 3/1/2025)
- General Anxiety Disorder-7 (GAD-7)(3/20/2024 - 3/1/2025)
- Edinburgh Postnatal Depression Scale (EPDS)(3/20/2024 - 3/1/2025)
- Parenting Stress Index 4th Edition, Short Form (PSI-4 SF)(3/20/2024 - 3/1/2025)
- World Health Organization Disability Assessment Schedule (WHODAS 2.0)(3/20/2024 - 3/1/2025)
