Marfan症候群の患者の管理における治療写真と表現力豊かな執筆の適用 (FOTOTEMA)
治療的写真と表現力豊かな文章：Marfan症候群の患者の探索的連続混合混合対応の実現可能性研究
This study explores the efficacy of therapeutic photography and expressive writing as interventions in routine practice for patients with Marfan syndrome.
調査の概要
詳細な説明
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.
研究の種類
入学 (実際)
段階
- 適用できない
連絡先と場所
研究場所
-
-
Italy
-
San Donato Milanese、Italy、イタリア、20097
- IRCCS Policlinico San Donato
-
-
参加基準
適格基準
就学可能な年齢
健康ボランティアの受け入れ
受講資格のある性別
説明
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.
研究計画
研究はどのように設計されていますか？
デザインの詳細
- 主な目的：支持療法
- 割り当て：なし
- 介入モデル：単一グループの割り当て
- マスキング：なし（オープンラベル）
武器と介入
参加者グループ / アーム |
介入・治療 |
|---|---|
|
実験的：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. |
この研究は何を測定していますか？
主要な結果の測定
結果測定 |
メジャーの説明 |
時間枠 |
|---|---|---|
|
Efficacy of therapeutic photography in clinical practice
時間枠：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
時間枠：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
|
二次結果の測定
結果測定 |
メジャーの説明 |
時間枠 |
|---|---|---|
|
Impact of therapeutic photography
時間枠：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
時間枠：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
時間枠：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
時間枠：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
時間枠：18 months
|
Exploring the experience of the patients involved with qualitative analysis of interviews, texts and photographs. |
18 months
|
協力者と研究者
捜査官
- 主任研究者：Nathasha Samali UDUGAMPOLAGE, MSN、IRCCS Policlinico S. Donato
出版物と役立つリンク
一般刊行物
- 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.
研究記録日
主要日程の研究
研究開始 (実際)
一次修了 (実際)
研究の完了 (実際)
試験登録日
最初に提出
QC基準を満たした最初の提出物
最初の投稿 (実際)
学習記録の更新
投稿された最後の更新 (実際)
QC基準を満たした最後の更新が送信されました
最終確認日
詳しくは
本研究に関する用語
追加の関連 MeSH 用語
その他の研究ID番号
- FOTOTEMA
個々の参加者データ (IPD) の計画
個々の参加者データ (IPD) を共有する予定はありますか?
IPD プランの説明
IPD will be shared after study closure.
医薬品およびデバイス情報、研究文書
米国FDA規制医薬品の研究
米国FDA規制機器製品の研究
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