Anvendelse af terapeutisk fotografering og udtryksfuld skrivning i håndteringen af patienter med Marfan -syndrom (FOTOTEMA)
Terapeutisk fotografering og ekspressiv skrivning: En efterforskende sekventiel blandede metoder gennemførlighedsundersøgelse af patienter med Marfan-syndrom
This study explores the efficacy of therapeutic photography and expressive writing as interventions in routine practice for patients with Marfan syndrome.
Studieoversigt
Status
Betingelser
Intervention / Behandling
Detaljeret beskrivelse
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.
Undersøgelsestype
Tilmelding (Faktiske)
Fase
- Ikke anvendelig
Kontakter og lokationer
Studiesteder
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Italy
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San Donato Milanese, Italy, Italien, 20097
- IRCCS Policlinico San Donato
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Deltagelseskriterier
Berettigelseskriterier
Aldre berettiget til at studere
Tager imod sunde frivillige
Køn, der er berettiget til at studere
Beskrivelse
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.
Studieplan
Hvordan er undersøgelsen tilrettelagt?
Design detaljer
- Primært formål: Støttende pleje
- Tildeling: N/A
- Interventionel model: Enkelt gruppeopgave
- Maskning: Ingen (Åben etiket)
Våben og indgreb
Deltagergruppe / Arm |
Intervention / Behandling |
|---|---|
|
Eksperimentel: 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. |
Hvad måler undersøgelsen?
Primære resultatmål
Resultatmål |
Foranstaltningsbeskrivelse |
Tidsramme |
|---|---|---|
|
Efficacy of therapeutic photography in clinical practice
Tidsramme: 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
Tidsramme: 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
|
Sekundære resultatmål
Resultatmål |
Foranstaltningsbeskrivelse |
Tidsramme |
|---|---|---|
|
Impact of therapeutic photography
Tidsramme: 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
Tidsramme: 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
Tidsramme: 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
Tidsramme: 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
Tidsramme: 18 months
|
Exploring the experience of the patients involved with qualitative analysis of interviews, texts and photographs. |
18 months
|
Samarbejdspartnere og efterforskere
Sponsor
Efterforskere
- Ledende efterforsker: Nathasha Samali UDUGAMPOLAGE, MSN, IRCCS Policlinico S. Donato
Publikationer og nyttige links
Generelle publikationer
- 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.
Datoer for undersøgelser
Studer store datoer
Studiestart (Faktiske)
Primær færdiggørelse (Faktiske)
Studieafslutning (Faktiske)
Datoer for studieregistrering
Først indsendt
Først indsendt, der opfyldte QC-kriterier
Først opslået (Faktiske)
Opdateringer af undersøgelsesjournaler
Sidste opdatering sendt (Faktiske)
Sidste opdatering indsendt, der opfyldte kvalitetskontrolkriterier
Sidst verificeret
Mere information
Begreber relateret til denne undersøgelse
Nøgleord
Yderligere relevante MeSH-vilkår
- Knoglesygdomme
- Muskuloskeletale sygdomme
- Hjerte-kar-sygdomme
- Hjertesygdomme
- Genetiske sygdomme, medfødte
- Bindevævssygdomme
- Medfødte abnormiteter
- Kardiovaskulære abnormiteter
- Hjertefejl, medfødt
- Abnormiteter, multiple
- Knoglesygdomme, udviklingsmæssige
- Medfødte, arvelige og neonatale sygdomme og abnormiteter
- Hud- og bindevævssygdomme
- Marfan syndrom
Andre undersøgelses-id-numre
- FOTOTEMA
Plan for individuelle deltagerdata (IPD)
Planlægger du at dele individuelle deltagerdata (IPD)?
IPD-planbeskrivelse
IPD will be shared after study closure.
Lægemiddel- og udstyrsoplysninger, undersøgelsesdokumenter
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