Parents Reflecting On Hope During Hospice Through Photovoice

November 3, 2025 updated by: St. Jude Children's Research Hospital

Pictures Of Hope: Parents Reflecting On Hope During Hospice Through Photovoice

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.

Study Overview

Status

Completed

Conditions

Bereavement

Detailed Description

Using a prospective qualitative design, we will enroll parents of children who died on hospice 6-24 months prior. Parents who opt to participate in the study will be asked to review photographs they have from when their child was on hospice and to select 1-5 photographs that communicate what hope meant to them at that time. Their photograph selection will be guided by a brief conversation with the researcher and a written guide that encourages the participant to think about hope broadly and invites an open interpretation of what it means for a photograph to represent hope.

Parents will bring their selected photograph(s) to a one-on-one semi-structured interview. The interview will take place either in person or over a virtual meeting platform. During the interview, the participant will share the photographs with the researcher, discuss why they were chosen, and share any other reflections they have about their experience. It is anticipated that the interview will last about 60 minutes. The audio for the meeting will be recorded. Video will not be recorded.

Study Type

Observational

Enrollment (Actual)

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Locations

United States
- Tennessee
  - Memphis, Tennessee, United States, 38105
    - St. Jude Children's Research Hospital

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

Adult
Older Adult

Accepts Healthy Volunteers

N/A

Sampling Method

Non-Probability Sample

Study Population

Those who meet the Eligibility Criteria and agree to participate.

Description

Inclusion Criteria:

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.

Exclusion Criteria:

Insufficient comfort or fluency with either English or Spanish language.

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Qualitative assessment of reflections, emotions, and experiences evoked in bereaved parents when reviewing photographs from their child's time on hospice Time Frame: 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.)	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.)

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

St. Jude Children's Research Hospital

Investigators

Principal Investigator: Alexandra Superdock, MD, St. Jude Children's Research Hospital

Publications and helpful links

The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.

Helpful Links

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

January 30, 2024

Primary Completion (Actual)

January 26, 2025

Study Completion (Actual)

October 27, 2025

Study Registration Dates

First Submitted

December 17, 2023

First Submitted That Met QC Criteria