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

This study is currently recruiting participants. (see Contacts and Locations)
Verified February 24, 2017 by National Institutes of Health Clinical Center (CC)
Information provided by (Responsible Party):
National Institutes of Health Clinical Center (CC) ( National Cancer Institute (NCI) ) Identifier:
First received: October 6, 2012
Last updated: April 21, 2017
Last verified: February 24, 2017


- 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.


- To study how stress affects the relationship between parents who have a child with cancer or Neurofibromatosis Type 1 (NF1).


  • 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.


  • 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.

Parents of Children With Cancer
Parents of Children With NF1
Parents of Children With Neurofibromatosis Type I

Study Type: Observational
Study Design: Observational Model: Case-Only
Time Perspective: Cross-Sectional
Official Title: Understanding the Perceived Influence of Childhood Cancer and NF1 on the Parents' Marital/Partner Relationship: A Descriptive Study

Resource links provided by NLM:

Further study details as provided by National Institutes of Health Clinical Center (CC):

Primary Outcome Measures:
  • Stress impact communication [ Time Frame: 3 months ]

Secondary Outcome Measures:
  • Positive dyadic coping and strengthening marital relationship [ Time Frame: 3 months ]
  • Stressful timepoints [ Time Frame: 3 months ]
  • Compare the perceptions of various subgroups in the sample [ Time Frame: 3 months ]

Estimated Enrollment: 360
Study Start Date: September 7, 2012
  Show Detailed Description


Ages Eligible for Study:   18 Years to 99 Years   (Adult, Senior)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
  • 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.


  • 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.
  Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its identifier: NCT01702922

Contact: Lori Wiener, Ph.D. (301) 451-9148

United States, Maryland
National Institutes of Health Clinical Center, 9000 Rockville Pike Recruiting
Bethesda, Maryland, United States, 20892
Contact: For more information at the NIH Clinical Center contact National Cancer Institute Referral Office    888-624-1937      
United States, Massachusetts
Dana Farber Cancer Institute Recruiting
Boston, Massachusetts, United States, 02115
Alberta's Children's Hospital Hematology/Oncology/Transplant Program Recruiting
Alberta, Canada, T2L 2A6
Sponsors and Collaborators
National Cancer Institute (NCI)
Principal Investigator: Lori Wiener, Ph.D. National Cancer Institute (NCI)
  More Information

Additional Information:
Responsible Party: National Cancer Institute (NCI) Identifier: NCT01702922     History of Changes
Other Study ID Numbers: 120206
Study First Received: October 6, 2012
Last Updated: April 21, 2017

Keywords provided by National Institutes of Health Clinical Center (CC):
Dyadic Coping

Additional relevant MeSH terms:
Neurofibromatosis 1
Nerve Sheath Neoplasms
Neoplasms, Nerve Tissue
Neoplasms by Histologic Type
Neoplastic Syndromes, Hereditary
Neurocutaneous Syndromes
Nervous System Diseases
Heredodegenerative Disorders, Nervous System
Neurodegenerative Diseases
Genetic Diseases, Inborn
Peripheral Nervous System Neoplasms
Nervous System Neoplasms
Peripheral Nervous System Diseases
Neuromuscular Diseases processed this record on May 22, 2017