Anwendung der therapeutischen Fotografie und ausdrucksstarkes Schreiben bei der Behandlung von Patienten mit dem Marfan -Syndrom (FOTOTEMA)
Therapeutische Fotografie und ausdrucksstarkes Schreiben: Eine explorative sequenzielle Machbarkeitsstudie mit Patienten mit Marfan-Syndrom
This study explores the efficacy of therapeutic photography and expressive writing as interventions in routine practice for patients with Marfan syndrome.
Studienübersicht
Status
Bedingungen
Intervention / Behandlung
Detaillierte Beschreibung
The objective of the study is to assess the feasibility of including structured therapeutic photography and expressive writing activities in routine practice as an adjunct to standard treatment for patients with Marfan syndrome in a national Reference Centre for Rare Diseases. This will include measuring the adherence rate to the programme and evaluating the subjective experience of the patients involved.
Studientyp
Einschreibung (Tatsächlich)
Phase
- Unzutreffend
Kontakte und Standorte
Studienorte
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-
Italy
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San Donato Milanese, Italy, Italien, 20097
- IRCCS Policlinico San Donato
-
-
Teilnahmekriterien
Zulassungskriterien
Studienberechtigtes Alter
Akzeptiert gesunde Freiwillige
Studienberechtigte Geschlechter
Beschreibung
Inclusion Criteria:
Subjects with Marfan syndrome referred to the Cardiovascular genetic center in IRCCS Policlinico San Donato;
- Signed informed consent.
Exclusion Criteria:
- Patients who are currently going through a period of severe medical or psychological instability reported in medical history.
- Subjects who are unable to provide informed consent due to cognitive, language, or other limitations that prevent full understanding of the purpose and nature of the study.
Studienplan
Wie ist die Studie aufgebaut?
Designdetails
- Hauptzweck: Unterstützende Pflege
- Zuteilung: N / A
- Interventionsmodell: Einzelgruppenzuweisung
- Maskierung: Keine (Offenes Etikett)
Waffen und Interventionen
Teilnehmergruppe / Arm |
Intervention / Behandlung |
|---|---|
|
Experimental: Intervention group
Subjects with Marfan syndrome in follow-up at Cardiovascular Genetic Center, IRCCS Policlinico San Donato |
Therapeutic photography, unlike phototherapy, consists of a set of photography-based activities that are initiated independently as part of an organised group or project, but in which no formal therapy is taking place within a psychotherapeutic setting. This approach, too, can be used as a routine practice in treatment pathways. The subject deepens his or her self-awareness to improve the sense of being: images become a way to express oneself, to communicate what one is unable to verbalize. Therapeutic photography can be done independently and individually, or in the presence of other professionals (nurses, sociologists, teachers, facilitators, psychologists) who accompany the individual to the understanding and production of the activity. Expressive writing is a technique that helps to understand and manage one's experiences and emotional tensions, contributes to mental and physical well-being, decreased stress, improved relationships, and the strengthening of the immune system. |
Was misst die Studie?
Primäre Ergebnismessungen
Ergebnis Maßnahme |
Maßnahmenbeschreibung |
Zeitfenster |
|---|---|---|
|
Efficacy of therapeutic photography in clinical practice
Zeitfenster: 18 months
|
This approach will be assessed through semi-structured interviews and thematic analysis of photographs generated by participants to deepen their personal experience of living with a rare disease |
18 months
|
|
Efficacy of expressive writing in clinical practice
Zeitfenster: 18 months
|
This approach will be assessed through semi-structured interviews and thematic analysis texts generated by participants to deepen their personal experience of living with a rare disease |
18 months
|
Sekundäre Ergebnismessungen
Ergebnis Maßnahme |
Maßnahmenbeschreibung |
Zeitfenster |
|---|---|---|
|
Impact of therapeutic photography
Zeitfenster: 18 months
|
Detect and compare the impact of therapeutic photography activities on patients and their perception of its effect in their care. This approach will be assessed through semi-structured interviews and thematic analysis of photographs generated by participants to deepen their personal experience of living with a rare disease |
18 months
|
|
Impact of expressive writing
Zeitfenster: 18 months
|
Detect and compare the impact of expressive writing activities on patients and their perception of its effect in their care. This approach will be assessed through semi-structured interviews and thematic analysis of texte written by participants to deepen their personal experience of living with a rare disease |
18 months
|
|
Pre- and post-activity effects of therapeutic photography: patients' perspective
Zeitfenster: 18 months
|
Psychological General Well-Being Index (PGWBI) questionnaire will be applied for the evaluation of this outcome |
18 months
|
|
Pre- and post-activity effects of expressive writing: patients' perspective
Zeitfenster: 18 months
|
Exploring patients' perceptions of attractiveness, efficiency, clarity, reliability, stimulation and originality of the program through standardized evaluations as a measure of proximity of feasibility. |
18 months
|
|
Qualitative analysis
Zeitfenster: 18 months
|
Exploring the experience of the patients involved with qualitative analysis of interviews, texts and photographs. |
18 months
|
Mitarbeiter und Ermittler
Sponsor
Ermittler
- Hauptermittler: Nathasha Samali UDUGAMPOLAGE, MSN, IRCCS Policlinico S. Donato
Publikationen und hilfreiche Links
Allgemeine Veröffentlichungen
- Panetta M, Bianchetti A, Udugampolage NS, Taurino J, Caruso R, Pini A, Callus E. Discussing psychological and psychotherapeutic support for patients with Marfan syndrome (MFS) and their family: an example of a structured program in Italy. Front Psychol. 2023 Jun 15;14:1176692. doi: 10.3389/fpsyg.2023.1176692. eCollection 2023. No abstract available.
- Gibson, Neil. (2017). Therapeutic photography: enhancing patient communication. Journal of Kidney Care. 2. 46-47. 10.12968/jokc.2017.2.1.46.
Studienaufzeichnungsdaten
Haupttermine studieren
Studienbeginn (Tatsächlich)
Primärer Abschluss (Tatsächlich)
Studienabschluss (Tatsächlich)
Studienanmeldedaten
Zuerst eingereicht
Zuerst eingereicht, das die QC-Kriterien erfüllt hat
Zuerst gepostet (Tatsächlich)
Studienaufzeichnungsaktualisierungen
Letztes Update gepostet (Tatsächlich)
Letztes eingereichtes Update, das die QC-Kriterien erfüllt
Zuletzt verifiziert
Mehr Informationen
Begriffe im Zusammenhang mit dieser Studie
Schlüsselwörter
Zusätzliche relevante MeSH-Bedingungen
- Knochenerkrankungen
- Erkrankungen des Bewegungsapparates
- Herz-Kreislauf-Erkrankungen
- Herzkrankheiten
- Genetische Krankheiten, angeboren
- Bindegewebserkrankungen
- Angeborene Anomalien
- Herz-Kreislauf-Anomalien
- Herzfehler, angeboren
- Anomalien, mehrere
- Knochenerkrankungen, Entwicklungs
- Angeborene, erbliche und neonatale Krankheiten und Anomalien
- Haut- und Bindegewebserkrankungen
- Marfan-Syndrom
Andere Studien-ID-Nummern
- FOTOTEMA
Plan für individuelle Teilnehmerdaten (IPD)
Planen Sie, individuelle Teilnehmerdaten (IPD) zu teilen?
Beschreibung des IPD-Plans
IPD will be shared after study closure.
Arzneimittel- und Geräteinformationen, Studienunterlagen
Studiert ein von der US-amerikanischen FDA reguliertes Arzneimittelprodukt
Studiert ein von der US-amerikanischen FDA reguliertes Geräteprodukt
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