Marfan Syndrome
Conditions
Keywords
therapeutic photography, expressive writing activities, Marfan syndrome, standard practice, mixed methods study
Brief summary
This study explores the efficacy of therapeutic photography and expressive writing as interventions in routine practice for patients with Marfan syndrome.
Detailed description
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.
Interventions
BEHAVIORALTherapeutic photography and expressive writing
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.
BEHAVIORALExpressive writing
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.
Sponsors
IRCCS Policlinico S. Donato
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Intervention model description
mixed-methods sequential exploratory study
Eligibility
Sex/Gender
ALL
Age
13 Years to No maximum
Healthy volunteers
No
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.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Efficacy of therapeutic photography in clinical practice | 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 |
| Efficacy of expressive writing in clinical practice | 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 |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Pre- and post-activity effects of therapeutic photography: patients' perspective | 18 months | Psychological General Well-Being Index (PGWBI) questionnaire will be applied for the evaluation of this outcome |
| Impact of therapeutic photography | 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 |
| Qualitative analysis | 18 months | Exploring the experience of the patients involved with qualitative analysis of interviews, texts and photographs. |
| Pre- and post-activity effects of expressive writing: patients' perspective | 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. |
| Impact of expressive writing | 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 |
Countries
Italy
Outcome results
None listed