THERAPEUTIC PHOTOGRAPHY AND EXPRESSIVE WRITING: AN EXPLORATORY SEQUENTIAL MIXED-METHODS FEASIBILITY STUDY OF PATIENTS WITH MARFAN SYNDROME
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 发起方
- 入组人数
- 8
- 试验地点
- 2
- 主要终点
- Efficacy of therapeutic photography in clinical practice
研究概览
简要总结
This study explores the efficacy of therapeutic photography and expressive writing as interventions in routine practice for patients with Marfan syndrome.
详细描述
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.
研究设计
- 研究类型
- Interventional
- 分配方式
- Na
- 干预模型
- Single Group
- 主要目的
- Supportive Care
- 盲法
- None
入排标准
- 年龄范围
- 13 Years 至 —（Child, Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Subjects with Marfan syndrome referred to the Cardiovascular genetic center in IRCCS Policlinico San Donato;
- •- Signed informed consent.
排除标准
- •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.
结局指标
主要结局
Efficacy of therapeutic photography in clinical practice
时间窗: 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
时间窗: 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
次要结局
- Impact of therapeutic photography(18 months)
- Impact of expressive writing(18 months)
- Pre- and post-activity effects of therapeutic photography: patients' perspective(18 months)
- Pre- and post-activity effects of expressive writing: patients' perspective(18 months)
- Qualitative analysis(18 months)
研究者
Alessandro Pini
Referent
IRCCS Policlinico S. Donato