Relationship Stressors in Parents of Children With Cancer or Neurofibromatosis Type 1 (NF1)
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|ClinicalTrials.gov Identifier: NCT01702922|
Recruitment Status : Recruiting
First Posted : October 10, 2012
Last Update Posted : January 30, 2020
- 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.
|Condition or disease|
|Parents of Children With Cancer Parents of Children With NF1 Parents of Children With Neurofibromatosis Type I|
|Study Type :||Observational|
|Estimated Enrollment :||360 participants|
|Official Title:||Understanding the Perceived Influence of Childhood Cancer and NF1 on the Parents' Marital/Partner Relationship: A Descriptive Study|
|Actual Study Start Date :||September 13, 2012|
1/Active Cancer Parents
Must have been in a partnership at the time child was diagnosed with cancer & must have been diagnosed at least 3 months prior to enrollment on this study & be currently receiving treatment
2/Complete Cancer Parents
Must have been in a partnership at the time the child was diagnosed with cancer and the child has completed treatment at age 21 or younger (without evidence of disease) within the previous 3 years
Must have been in a partnership at the time the child was diagnosed with NF1 and the child must have been diagnosed with NF1 at least 3 months prior to enrollment on this study.
- Stress impact communication [ Time Frame: 3 months ]To explore whether the stress associated with having a child with cancer or NF1 is perceived to impact the communication between partners.
- Dyadic coping [ Time Frame: 3 months ]To explore whether positive dyadic coping (joint decision making, joint problem solving, sharing responsibilities) is perceived to have strengthened the marital relationship/partnership since the child s diagnosis with cancer or NF1.
- Stressful timepoints [ Time Frame: 3 months ]To describe the time points and events during the child s illness trajectory when the relationship becomes most stressed and/or strengthened.
- Perception comparison [ Time Frame: 3 months ]To compare the perceptions of various subgroups in the sample, (e.g. parents who score either high or low on a marital stress scale, mothers versus fathers) statistically or qualitatively as the distribution of the characteristics of the sample allow.
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT01702922
|Contact: Lori Wiener, Ph.D.||(240) firstname.lastname@example.org|
|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|
|Principal Investigator:||Lori Wiener, Ph.D.||National Cancer Institute (NCI)|