Understanding the Psychosocial Needs of Parents Who Have Lost a Child to Cancer
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Purpose
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 |
- 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 ]
- 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 ]
| Estimated Enrollment: | 165 |
| Study Start Date: | August 2009 |
| Estimated Study Completion Date: | August 2013 |
| Estimated Primary Completion Date: | August 2013 (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. |
Eligibility| Ages Eligible for Study: | 18 Years and older |
| Genders Eligible for Study: | Both |
| Accepts Healthy Volunteers: | Yes |
| Sampling Method: | Non-Probability Sample |
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| Contact: Wendy Lichtenthal, PhD | 646-888-4812 | |
| Contact: William Breitbart, MD | 646-888-0020 |
| United States, Maryland | |
| NCI Clinical Center | Recruiting |
| Bethesda, Maryland, United States | |
| Contact: Lori Wiener, MD | |
| Principal Investigator: Lori Wiener, MD | |
| United States, New York | |
| Memorial Sloan Kettering Cancer Center | Recruiting |
| New York, New York, United States, 10065 | |
| Contact: Wendy Lichtenthal, PhD 646-888-4812 | |
| Principal Investigator: Wendy Lichtenthal, PhD | |
| Principal Investigator: | Wendy Lichtenthal, PhD | Memorial Sloan-Kettering Cancer Center |
More Information
Additional Information:
No publications provided
| Responsible Party: | Memorial Sloan-Kettering Cancer Center |
| ClinicalTrials.gov Identifier: | NCT00968500 History of Changes |
| Obsolete Identifiers: | NCT01324154 |
| Other Study ID Numbers: | 09-107 |
| Study First Received: | August 28, 2009 |
| Last Updated: | December 21, 2012 |
| Health Authority: | United States: Institutional Review Board |
Keywords provided by Memorial Sloan-Kettering Cancer Center:
|
Grief bereavement questionnaires 09-107 |
ClinicalTrials.gov processed this record on May 19, 2013