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Protocol Details

Understanding the Psychosocial Needs of Parents Who Have Lost a Child to Cancer

This study is NOT currently recruiting participants.

Summary | Eligibility | Citations | Contacts




Sponsoring Institute

National Cancer Institute (NCI)

Recruitment Detail

Type: Completed Study; data analyses ongoing
Gender: Male & Female
Min Age: 18
Max Age: 99

Referral Letter Required


Population Exclusion(s)



Natural History

Recruitment Keyword(s)

Parents Who Have Lost a Child To Cancer


Parents Who Have Lost A Child To Cancer

Investigational Drug(s)


Investigational Device(s)




Supporting Site

National Cancer Institute


- Researchers are interested in developing better methods of helping parents cope with the loss of a child to cancer. By asking questions of parents who have recently experienced such a loss, researchers hope to better understand their needs and determine the best way and most appropriate timing to ask certain questions, including discussions about autopsies. The information will be used to compile recommendations for other health care providers to provide future assistance for parents who are coping with the loss of a child.


- To understand the experiences and needs of parents who have lost a child to cancer.


- Biological or adoptive parent or stepparent (18 years of age or older) who has lost a child (between the ages of 6 months and 25 years) within the past 6 months to 6 years.


- Researchers will collect basic information about the deceased child s medical background, including diagnosis, treatments, and cause of death, from the child's medical records.

- Participants will be asked to fill out a packet of questionnaires that will take approximately 75 to 80 minutes to complete. Questions will be asked about grief and emotional and social well-being, as well as the type of support services that the respondents have and/or would like to have received. An additional questionnaire will ask about the best way and time to discuss autopsy with parents.

- Participants may complete the questionnaires with the help of someone from the National Cancer Institute research staff in person or over the telephone, or may complete the questionnaires separately and then mail or fax them in.

A trained research team member will contact participants within 2 weeks of the mailing to answer any questions and provide a reminder about returning the questionnaires.

- Based on responses to the questionnaire about grief symptoms, some parents may be invited to participate in a more in-depth interview. Participants are not obligated to participate in this portion of the study. Those who choose to take part will have an in-depth interview that will take approximately 60 to 90 minutes. Questions will be asked about experiences with the child, about challenges experienced since the loss, and about participants' sense of meaning following the loss.

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-Loss of a child to cancer between 6 months and 6 years ago

-Loss of a child between the ages of 6 months and 25 years

-Biological or adoptive parent or stepparent

-Parent must be age 18 or older

-In the judgement of investigators/consenting professional able to comprehend English to complete study assessments


-Significant psychiatric disturbance sufficient, in the investigator's judgement, to preclude completion of the assessment measures, interview or informed consent.

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Snowdon C, Elbourne DR, Garcia J. Perinatal pathology in the context of a clinical trial: attitudes of bereaved parents. Arch Dis Child Fetal Neonatal Ed. 2004 May;89(3):F208-11.

Meyer EC, Ritholz MD, Burns JP, Truog RD. Improving the quality of end-of-life care in the pediatric intensive care unit: parents' priorities and recommendations. Pediatrics. 2006 Mar;117(3):649-57.

Meyer EC, Burns JP, Griffith JL, Truog RD. Parental perspectives on end-of-life care in the pediatric intensive care unit. Crit Care Med. 2002 Jan;30(1):226-31.

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Principal Investigator

Referral Contact

For more information:

Lori Wiener, Ph.D.
National Cancer Institute (NCI)
National Institutes of Health
Building 10
Room 1-6466
10 Center Drive
Bethesda, Maryland 20892
(240) 760-6419

Lori Wiener, Ph.D.
National Cancer Institute (NCI)
National Institutes of Health
Building 10
Room 1-6466
10 Center Drive
Bethesda, Maryland 20892
(240) 760-6419

NCI Referral Office
National Institute of Health Clinical Center (CC), 9000 Rockville Pike, Bethesda, Maryland 20892, United States: NCI Clinical Trials Referral Office

Clinical Trials Number:


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