Legacy Photo-narrative Study
17. august 2026 opdateret af: Jori Bogetz, Seattle Children's Hospital
Photo-narratives as a Legacy Intervention for Children With Medical Complexity and Their Families
Children with medical complexity (CMC) live full meaningful lives that are often short.
CMC and their families experience substantial distress, poor mental health, and low emotional well-being.
Existing research and our prior studies suggest that legacy, defined as the summation of qualities and experiences that form the child's enduring presence, can be a resource for actionable appraisal of and coping with stressful life experiences.
Photo-narratives are a novel intervention that facilitate family sharing of images to tell stories about everyday experiences related to their child's quality-of-life and personhood.
In our prior studies, families reported that photo-narratives were a simple, easy way to meaningfully connect and had the potential to be an important part of their child's legacy.
What remains poorly understood, however, is how photo-narratives might impact family-centered outcomes.
This study aims to and evaluate the feasibility, acceptability, and potential impact of photo-narratives in a pilot randomized controlled trial.
Studieoversigt
Status
Ikke rekrutterer endnu
Betingelser
Intervention / Behandling
Undersøgelsestype
Interventionel
Tilmelding (Anslået)
40
Fase
- Fase 2
Deltagelseskriterier
Forskere leder efter personer, der passer til en bestemt beskrivelse, kaldet berettigelseskriterier. Nogle eksempler på disse kriterier er en persons generelle helbredstilstand eller tidligere behandlinger.
Berettigelseskriterier
Aldre berettiget til at studere
- Barn
- Voksen
- Ældre voksen
Tager imod sunde frivillige
Ingen
Beskrivelse
Inclusion Criteria:
- has a child who receives care at one of the study sites for a complex medical condition and is followed by the complex care and/or palliative care team
- has a child who is ages 3 months through 25 years old
- has a child who has previously been home/discharged
- has a child whose life expectancy of >6 months
Exclusion Criteria:
- are not the child's identified parent/legally authorized representative
- has a preferred language of care other than English or Spanish
- has an active psychiatric or chronic health concerns that preclude research participation
- has active child protective services involvement
Studieplan
Dette afsnit indeholder detaljer om studieplanen, herunder hvordan undersøgelsen er designet, og hvad undersøgelsen måler.
Hvordan er undersøgelsen tilrettelagt?
Design detaljer
- Primært formål: Støttende pleje
- Tildeling: Randomiseret
- Interventionel model: Parallel tildeling
- Maskning: Ingen (Åben etiket)
Våben og indgreb
Deltagergruppe / Arm |
Intervention / Behandling |
|---|---|
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Ingen indgriben: Styring
Sædvanlig plejekontrol
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|
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Eksperimentel: Photo-narratives
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Photo-narratives are created by patients/families and include a series of captioned photos focused on who is important in their family, information about their quality of life, and their strengths.
The narrative is accompanied by clinician prompts to facilitate patient/family-clinician discussion and engagement.
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Hvad måler undersøgelsen?
Primære resultatmål
Resultatmål |
Foranstaltningsbeskrivelse |
Tidsramme |
|---|---|---|
|
Feasibility
Tidsramme: From first enrollment to end of intervention completion at about 2 years
|
percent enrolled (enrolled parents/total approached) and percent completion (parents completing intervention/total randomized to the intervention)
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From first enrollment to end of intervention completion at about 2 years
|
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Acceptability
Tidsramme: From first enrollment to end of intervention completion at about 2 years
|
Percentage of intervention parents likely or very likely to recommend the intervention to other parents out of total randomized to the intervention
|
From first enrollment to end of intervention completion at about 2 years
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Sekundære resultatmål
Resultatmål |
Foranstaltningsbeskrivelse |
Tidsramme |
|---|---|---|
|
Meaning and purpose
Tidsramme: 1- and 3-months post-enrollment
|
NIH PROMIS Meaning and Purpose Scale
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1- and 3-months post-enrollment
|
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Hope
Tidsramme: 1- and 3-months post-enrollment
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State Hope Scale
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1- and 3-months post-enrollment
|
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Therapeutic alliance
Tidsramme: 1- and 3-months post-enrollment
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Human Connection Scale
|
1- and 3-months post-enrollment
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Samarbejdspartnere og efterforskere
Det er her, du vil finde personer og organisationer, der er involveret i denne undersøgelse.
Sponsor
Samarbejdspartnere
Datoer for undersøgelser
Disse datoer sporer fremskridtene for indsendelser af undersøgelsesrekord og resumeresultater til ClinicalTrials.gov. Studieregistreringer og rapporterede resultater gennemgås af National Library of Medicine (NLM) for at sikre, at de opfylder specifikke kvalitetskontrolstandarder, før de offentliggøres på den offentlige hjemmeside.
Studer store datoer
Studiestart (Anslået)
1. juni 2027
Primær færdiggørelse (Anslået)
1. april 2028
Studieafslutning (Anslået)
15. juni 2028
Datoer for studieregistrering
Først indsendt
12. august 2026
Først indsendt, der opfyldte QC-kriterier
17. august 2026
Først opslået (Faktiske)
19. august 2026
Opdateringer af undersøgelsesjournaler
Sidste opdatering sendt (Faktiske)
19. august 2026
Sidste opdatering indsendt, der opfyldte kvalitetskontrolkriterier
17. august 2026
Sidst verificeret
1. august 2026
Mere information
Begreber relateret til denne undersøgelse
Andre undersøgelses-id-numre
- STUDY00005985
Lægemiddel- og udstyrsoplysninger, undersøgelsesdokumenter
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