Relationship Stressors in Parents of Children With Cancer or Neurofibromatosis Type 1 (NF1) (NCT01702922) | Clinical Trial Compass
CompletedNot Applicable
Relationship Stressors in Parents of Children With Cancer or Neurofibromatosis Type 1 (NF1)
United States, Canada262 participantsStarted 2012-09-13
Plain-language summary
Background:
\- Serious illnesses like cancer or Neurofibromatosis Type 1 (NF1), can cause high levels of stress in a family. When a child is diagnosed with cancer or NF1, parents face numerous stressors, each of which can strain relationships. Many parents struggle to effectively cope with the changes in parenting roles that often accompany treatment of childhood cancer or NF1. How parents cope with this stress can influence whether the relationship is strengthened or weakened. Stress levels can also affect the care of the child who has cancer or NF1. Researchers want to better understand the critical time points and events during the child s treatment when the relationship becomes most stressed and/or strengthened.
Objectives:
\- To study how stress affects the relationship between parents who have a child with cancer or Neurofibromatosis Type 1 (NF1).
Eligibility:
* Parents of a child (between 1 and 24 years of age) who has been diagnosed with cancer or NF1.
* Participants must have been in a partnership at the time the child was diagnosed with cancer or NF1. At least one of the parents must be a biological or legal parent of the child.
Design:
* Participants will fill out a questionnaire either online or by paper and pencil. It will take about 20 minutes to complete. The questions ask about the experience of dealing with a child s cancer OR NF1 diagnosis and how it affects participants relationship with their spouse/partner.
* Some participants will also have an in-depth interview. It will last about an hour. It will ask further questions about the cancer OR NF1 diagnosis and treatment and its effect on the relationship.
* Treatment will not be provided as part of this study.
Who can participate
Age range
18 Years
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
* INCLUSION CRITERIA:
* Participants must have been in a partnership at the time the child was diagnosed with cancer or NF1. At least one participant must be the biological/legal parent of the child; the partner may or may not be a biological/legal parent. Divorced parents who separated or divorced during or after the child s treatment can participate in this study.
* The participant s child must be between 1-24 years of age.
* Participants must be 18 years of age or older.
* Participants must be fluent in the English language.
* The participant s child must have been:
* diagnosed with cancer at least 3 months prior to enrollment on this study and be currently receiving treatment OR
* have completed treatment at age 21 or younger (without evidence of disease) within the previous 3 years OR
* diagnosed with NF1 at least 3 months prior to enrollment on this study
* Participants must verbalize willingness to discuss the impact of their child s cancer or NF1 diagnosis on their relationship.
* Able to understand and willing to sign the informed consent document.
EXCLUSION CRITERIA:
* Parents of a child with cancer OR NF1 without a partner/spouse during the child s treatment for cancer or NF1 are excluded from this study.
* Parents who were not living with the child during his or her treatment and involved in the child s care.
* Parents of children who are enrolled in hospice care.
* Presence of psychotic symptoms or severe psychological distress, which in the judgment of …
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.