Aplicación de fotografía terapéutica y escritura expresiva en el manejo de pacientes con síndrome de Marfan (FOTOTEMA)
Fotografía terapéutica y escritura expresiva: un estudio exploratorio de factibilidad de métodos mixtos secuenciales de pacientes con síndrome de Marfan
This study explores the efficacy of therapeutic photography and expressive writing as interventions in routine practice for patients with Marfan syndrome.
Descripción general del estudio
Estado
Condiciones
Intervención / Tratamiento
Descripción detallada
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.
Tipo de estudio
Inscripción (Actual)
Fase
- No aplica
Contactos y Ubicaciones
Ubicaciones de estudio
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-
Italy
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San Donato Milanese, Italy, Italia, 20097
- IRCCS Policlinico San Donato
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Criterios de participación
Criterio de elegibilidad
Edades elegibles para estudiar
Acepta Voluntarios Saludables
Géneros elegibles para el estudio
Descripción
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.
Plan de estudios
¿Cómo está diseñado el estudio?
Detalles de diseño
- Propósito principal: Cuidados de apoyo
- Asignación: N / A
- Modelo Intervencionista: Asignación de un solo grupo
- Enmascaramiento: Ninguno (etiqueta abierta)
Armas e Intervenciones
Grupo de participantes/brazo |
Intervención / Tratamiento |
|---|---|
|
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. |
¿Qué mide el estudio?
Medidas de resultado primarias
Medida de resultado |
Medida Descripción |
Periodo de tiempo |
|---|---|---|
|
Efficacy of therapeutic photography in clinical practice
Periodo de tiempo: 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
Periodo de tiempo: 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
|
Medidas de resultado secundarias
Medida de resultado |
Medida Descripción |
Periodo de tiempo |
|---|---|---|
|
Impact of therapeutic photography
Periodo de tiempo: 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
Periodo de tiempo: 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
Periodo de tiempo: 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
Periodo de tiempo: 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
Periodo de tiempo: 18 months
|
Exploring the experience of the patients involved with qualitative analysis of interviews, texts and photographs. |
18 months
|
Colaboradores e Investigadores
Patrocinador
Investigadores
- Investigador principal: Nathasha Samali UDUGAMPOLAGE, MSN, IRCCS Policlinico S. Donato
Publicaciones y enlaces útiles
Publicaciones Generales
- 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.
Fechas de registro del estudio
Fechas importantes del estudio
Inicio del estudio (Actual)
Finalización primaria (Actual)
Finalización del estudio (Actual)
Fechas de registro del estudio
Enviado por primera vez
Primero enviado que cumplió con los criterios de control de calidad
Publicado por primera vez (Actual)
Actualizaciones de registros de estudio
Última actualización publicada (Actual)
Última actualización enviada que cumplió con los criterios de control de calidad
Última verificación
Más información
Términos relacionados con este estudio
Palabras clave
Términos MeSH relevantes adicionales
- Enfermedades óseas
- Enfermedades musculoesqueléticas
- Enfermedades cardiovasculares
- Enfermedades cardíacas
- Enfermedades Genéticas Congénitas
- Enfermedades del tejido conectivo
- Anomalías congénitas
- Anomalías cardiovasculares
- Defectos Cardíacos Congénitos
- Anomalías Múltiples
- Enfermedades óseas del desarrollo
- Enfermedades y anomalías congénitas, hereditarias y neonatales
- Enfermedades de la piel y del tejido conectivo
- Síndrome de Marfan
Otros números de identificación del estudio
- FOTOTEMA
Plan de datos de participantes individuales (IPD)
¿Planea compartir datos de participantes individuales (IPD)?
Descripción del plan IPD
IPD will be shared after study closure.
Información sobre medicamentos y dispositivos, documentos del estudio
Estudia un producto farmacéutico regulado por la FDA de EE. UU.
Estudia un producto de dispositivo regulado por la FDA de EE. UU.
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