The information needs of carers of adults diagnosed with epilepsy

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.