Parents Reflecting On Hope During Hospice Through Photovoice

NCT06187636 | Completed

• 1 other identifier: PHOTOHOPE
• Study Type: observational
• Target: 20
• Locations: 1 country
• Sites: 1

Brief Summary

In this study, researchers will use Photovoice to learn about how bereaved parents felt and thought about hope when their children were on hospice. 'Photovoice' is a research method that uses participants' photographs as a springboard for discussion. Primary Objective

• To explore reflections, emotions, and experiences evoked in bereaved parents when reviewing photographs from their child's time on hospice, with photos selected by parents based on a prompt related to their thoughts about hope during that time.

Conditions

Bereavement

Keywords

Photovoice; Bereaved parent; Hospice

Outcome Measures

Primary Outcomes (1)

• Qualitative assessment of reflections, emotions, and experiences evoked in bereaved parents when reviewing photographs from their child's time on hospice

  The unit of analysis will be the semi-structured interview, including the transcript and any field notes taken by the researcher during or immediately after each interview. Interviews will be recorded, transcribed, de-identified, and analyzed using qualitative inductive content analysis. Content analysis will include memo-writing, codebook development, coding, reconciliation, and synthesis to identify meaningful patterns and themes. MAXQDA, a sophisticated qualitative analysis software system, will be used to conduct and synthesize analysis.

  Approximately 1- 3 weeks after enrollment (The time frame will be flexible to allow for maximal convenience to the participant, with participants empowered to select an interview date outside of the timeframe at their discretion.)

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Those who meet the Eligibility Criteria and agree to participate.

You may qualify if:

• Participants must be the parent of a child who:
• Received any form of care from a clinician at St. Jude, as documented in the electronic medical record, AND
• Was enrolled on hospice at the time of death, AND
• Died at least 6 months prior to enrollment, but no more than 24 months prior to enrollment.
• Participants must also:
• Be ≥ 18 years of age or legally emancipated, AND
• Be English-speaking or Spanish-speaking.

You may not qualify if:

• Insufficient comfort or fluency with either English or Spanish language.

Sponsors & Collaborators

• St. Jude Children's Research Hospital: lead

Study Sites (1)

St. Jude Children's Research Hospital

Memphis, Tennessee, 38105, United States

Location

Related Links

• St. Jude Children's Research Hospital
• Clinical Trials Open at St. Jude

Study Officials

• Alexandra Superdock, MD

  St. Jude Children's Research Hospital

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: December 17, 2023
• First Posted: January 2, 2024
• Study Start: January 30, 2024
• Primary Completion: January 26, 2025
• Study Completion: October 27, 2025
• Last Updated: November 5, 2025

Record last verified: 2025-11

Locations

US (1)