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

This study is ongoing, but not recruiting participants.
National Cancer Institute (NCI)
Dana-Farber Cancer Institute
Ohio State University
University of Memphis
Information provided by (Responsible Party):
Memorial Sloan Kettering Cancer Center Identifier:
First received: August 28, 2009
Last updated: August 15, 2016
Last verified: August 2016
The purpose of this study is to understand the experiences and needs of parents who have lost a child to cancer. This will aid us in developing an intervention that may help parents cope with their loss.

Condition Intervention
Parents Who Have Lost a Child to Cancer
Behavioral: Questionnaires/Interviews

Study Type: Observational
Study Design: Observational Model: Cohort
Time Perspective: Cross-Sectional
Official Title: Understanding the Psychosocial Needs of Parents Who Have Lost a Child to Cancer

Resource links provided by NLM:

Further study details as provided by Memorial Sloan Kettering Cancer Center:

Primary Outcome Measures:
  • Identify the unique qualitative themes related to finding meaning among parents who lost a child to cancer to inform development of a conceptually sound meaning-centered grief intervention. [ Time Frame: 2 years ] [ Designated as safety issue: No ]

Secondary Outcome Measures:
  • Determine differences in qualitative themes of meaning in parents in the high and low Prolonged Grief Disorder subgroups to help select a target population for a meaning-centered grief intervention. [ Time Frame: 2 years ] [ Designated as safety issue: No ]
  • Explore and identify factors associated with bereaved parents' psychosocial service underutilization to guide the development of an acceptable and feasible meaning-centered grief intervention format. [ Time Frame: 2 years ] [ Designated as safety issue: No ]

Enrollment: 160
Study Start Date: August 2009
Estimated Study Completion Date: August 2017
Estimated Primary Completion Date: August 2017 (Final data collection date for primary outcome measure)
Groups/Cohorts Assigned Interventions
Parents Who Have Lost a Child to Cancer
The overall goal of the proposed cross-sectional study is to obtain information necessary to the development of an effective Meaning-Centered Grief Intervention for parents who lost a child to cancer. In order to identify a subset of parents with whom we will conduct qualitative interviews with a subset of participants to address Aims 1 and 2, we will first screen participants to determine their levels of Prolonged Grief Disorder symptoms using a quantitative assessment (PG-13). The screening measure (PG-13) and the additional questionnaires included in the quantitative battery of measures will be analyzed to achieve Aim 3.
Behavioral: Questionnaires/Interviews

Prior to the interview, the measure of prolonged grief disorder symptoms, the PG-13, will be re-administered to participants as a quality assurance check. We will administer 7 self-report measures, which participants can complete in our office, at home, or via telephone, depending on their preferences. These questionnaires should take approximately 75 to 80 minutes to complete. If you are asked to take part in the in-depth interview and you choose to take part, the interview that will take approximately 60 to 90 minutes to complete, depending on the length of the responses to the questions asked.

The participant may also be asked if they would be willing to fill out an additional questionnaire about parents' thoughts on the most appropriate timing for raising the topic of a postmortem examination and factors that are important to include in discussions. Despite its importance, autopsy is often not discussed with parents whose child is dying from cancer.


Ages Eligible for Study:   18 Years and older   (Adult, Senior)
Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   Yes
Sampling Method:   Non-Probability Sample
Study Population
Bereaved parents will be identified through death records kept by the Department of Pediatrics and cross-referenced with the deceased child's MSK medical record.

Inclusion Criteria:

  • 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 over
  • In the judgment of investigators/consenting professionals able to comprehend English to complete study assessments
  • To be eligible for the qualitative interview, participants more score of 19 or less (< 19)or 34 or greater (> 34) on the PG-13 to qualify

Exclusion Criteria:

  • Significant psychiatric disturbance sufficient, in the investigator's judgment, to preclude completion of the assessment measures, interview or informed consent.
  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: NCT00968500

United States, Maryland
NCI Clinical Center
Bethesda, Maryland, United States
United States, New York
Memorial Sloan Kettering Cancer Center
New York, New York, United States, 10065
Sponsors and Collaborators
Memorial Sloan Kettering Cancer Center
National Cancer Institute (NCI)
Dana-Farber Cancer Institute
Ohio State University
University of Memphis
Principal Investigator: Wendy Lichtenthal, PhD Memorial Sloan Kettering Cancer Center
  More Information

Additional Information:
Responsible Party: Memorial Sloan Kettering Cancer Center Identifier: NCT00968500     History of Changes
Obsolete Identifiers: NCT01324154
Other Study ID Numbers: 09-107 
Study First Received: August 28, 2009
Last Updated: August 15, 2016
Health Authority: United States: Institutional Review Board

Keywords provided by Memorial Sloan Kettering Cancer Center:
09-107 processed this record on October 21, 2016