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为科特迪瓦的血友病患者、血友病携带者及其家属开发和评估合适的、文化适应性强的教育工具。

Development and evaluation of appropriate, culturally adapted educational tools for Ivoirian patients with haemophilia, haemophilia carriers and their families.

机构信息

Haemostasis and Thrombosis Unit, Division of Hematology, Cliniques Universitaires Saint-Luc, Brussels, Belgium.

Division of Clinical Hematology, Centre Hospitalier Universitaire de Yopougon, Abidjan, Côte d'Ivoire.

出版信息

Haemophilia. 2019 Sep;25(5):838-844. doi: 10.1111/hae.13818. Epub 2019 Jul 29.

Abstract

INTRODUCTION

Patient education is the cornerstone of the management of chronic diseases like haemophilia. The education of patients with haemophilia (PWH), haemophilia carriers and their families requires educational materials adapted to their socio-cultural situations for maximum effectiveness. These tools are currently lacking in developing countries like Côte d'Ivoire.

AIMS

We sought to develop educational materials adapted to the Ivoirian context, assess their short- and long-term impacts on knowledge about haemophilia and evaluate the participants' motivation and their satisfaction with the tools.

METHODS

Following their elaboration, the materials were administered to 71 participants (37 PWH, 29 carriers and 5 fathers), whose level of knowledge was assessed before (T0), just after (T1), and 1 year following the intervention (T2). We evaluated, analysed and compared the scores at T0, T1 and T2 and evaluated motivation at T0 and satisfaction at T1.

RESULTS

All participants significantly improved their skills at T1 (P < 0.001), maintaining a sustained and significant improvement at T2 in comparison with T0 (P < 0.001). In all participants, we observed a high degree of motivation towards improving their knowledge and a high degree of satisfaction with the materials.

CONCLUSIONS

Appropriate, culturally adapted educational tools focused on haemophilia are now available in Côte d'Ivoire. These materials will likely contribute to improving haemophilia awareness, to implementing screening, prevention and self-management of the disease and to positively impacting the outcomes of Ivoirian PWH in the long term.

摘要

简介

患者教育是血友病等慢性病管理的基石。为了达到最佳效果,需要针对血友病患者(PWH)、血友病携带者及其家属的社会文化背景,提供专门设计的教育材料。目前,在像科特迪瓦这样的发展中国家,此类工具还十分缺乏。

目的

我们旨在开发适应科特迪瓦国情的教育材料,评估其对血友病相关知识的短期和长期影响,并评估参与者的积极性及其对工具的满意度。

方法

在完成材料的编写后,我们对 71 名参与者(37 名 PWH、29 名携带者和 5 名父亲)进行了干预,在干预前(T0)、干预后即刻(T1)和干预 1 年后(T2)评估他们的知识水平。我们评估、分析和比较了 T0、T1 和 T2 时的分数,并在 T0 时评估了积极性,在 T1 时评估了满意度。

结果

所有参与者在 T1 时的技能都显著提高(P<0.001),与 T0 相比,在 T2 时仍保持着持续和显著的提高(P<0.001)。在所有参与者中,我们观察到他们对提高知识的高度积极性和对材料的高度满意度。

结论

科特迪瓦现在有了适合的、文化适应性强的血友病教育工具。这些材料可能有助于提高血友病的认知度,实施筛查、预防和疾病自我管理,并从长远来看积极影响科特迪瓦 PWH 的结局。

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