Relationship Stressors in Parents of Children With Cancer or Neurofibromatosis Type 1 (NF1)

Completed

Conditions studied: Parents of Children With Cancer, Parents of Children With NF1, Parents of Children With Neurofibromatosis Type I

In brief

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.

Key facts

Study ID

NCT01702922

Run by

National Cancer Institute (NCI)

People needed

262

Starts

2012-09-13

Expected to finish

2020-12-07

Last updated by the study team

2024-07-31

Who can join

Age: 18 and older. Sex: any. Healthy volunteers: not accepted.

You may not qualify if…

• 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 the Principal or Associate Investigator would compromise the participants ability to engage in the study procedures or results.

Where it is running

• National Institutes of Health Clinical Center — Bethesda, Maryland, United States
• Dana Farber Cancer Institute — Boston, Massachusetts, United States
• Alberta's Children's Hospital Hematology/Oncology/Transplant Program — Alberta, Canada

Full record on ClinicalTrials.gov

Trial information comes from ClinicalTrials.gov and is refreshed daily. TrialsForMe does not provide medical care and does not run the studies it lists.