成年癫痫患者照料者的信息需求。

The information needs of carers of adults diagnosed with epilepsy.

作者信息

Kendall Sally, Thompson Diane, Couldridge Lynette

机构信息

Centre for Research in Primary and Community Care, Faculty of Health and Human Sciences, University of Hertfordshire, College Lane, Hatfield, Herts AL10 9AB, UK.

出版信息

Seizure. 2004 Oct;13(7):499-508. doi: 10.1016/j.seizure.2003.12.003.

DOI:10.1016/j.seizure.2003.12.003

PMID:15324830

Abstract

AIM

The aim of the study was to explore the information needs of informal carers, and how information from health professionals can become more effective for families caring for people with epilepsy.

METHODS

A combined methodology was used, comprising an interview study and a survey. Twelve in-depth interviews with carers were carried out. The questionnaire was developed using the interview data, to which 70 carers responded.

RESULTS

Four main themes have been drawn from the study. Carers' of people with epilepsy have a need for improved and more appropriate levels of information giving by health professionals in both primary and secondary care. Carers' perceived self-efficacy expectations in seeking information are positive but they do not always feel listened to. Carers' prefer to receive information in a one-to-one setting but also need information from formats other than leaflets. Carers' perceive barriers to having their information needs met, such as their needs being unrecognised in relation to the person with epilepsy.

摘要

目的

本研究旨在探讨非正式照料者的信息需求，以及来自医疗专业人员的信息如何能对照顾癫痫患者的家庭更有效。

方法

采用了一种综合方法，包括访谈研究和调查。对12名照料者进行了深入访谈。根据访谈数据编制了问卷，70名照料者进行了回复。

结果

本研究得出了四个主要主题。癫痫患者的照料者需要初级和二级医疗保健中的医疗专业人员提供更高质量、更合适的信息。照料者在寻求信息时对自我效能的期望是积极的，但他们并不总是觉得自己被倾听。照料者更喜欢在一对一的环境中接收信息，但也需要传单以外形式的信息。照料者认为满足其信息需求存在障碍，例如他们相对于癫痫患者的需求未得到认可。