Extrait

Background and study aims Anorexia Nervosa (AN) is a serious eating disorder in which people keep their body weight low by dieting, vomiting, using laxatives or excessively exercising. It affects men and women of all ages, but is most common in young women. AN affects the whole body, and can lead to serious mental health issues, such as depression and problems with cognitive (thinking, learning and memory), as well as damage to major organs such as the heart and kidneys. Carers of people with anorexia nervosa play an important role in recovery, but often feel ill equipped to effectively support their loved one. Especially for carers of individuals above the age of 18 there is often little support available. This lack of knowledge and skills, potentially leads to problematic carer behaviours, such as high levels of expressed emotion or accommodation to the illness, which may worsen or maintain the illness. It also takes a toll on carers’ own mental health. Therefore, there is a need for programs that support carers in their role. “We Can” is a web-based skills training programme developed for carers of people with AN that aims to target unhelpful carer behaviours and attitudes and also addresses carers’ own needs. The aim of this study is to investigate how well the “We Can” programme is able to support carers of individuals with anorexia nervosa and to look at how different levels of support with the intervention may affect the results. Who can participate? Adult carers looking after someone aged 16 years and over who has AN. What does the study involve? Carers who are interested in participating in the study are asked to visit the project website. On this website, carers can access more information about the study and study team. If they are interested in taking part, carers are asked to complete a short number of questions to determine their eligibility for the project. If carers are eligible to participate and provide consent to participate, they can then create a username and password in order to start using the We Can website. Carers then have access to eight modules related to caring for a person with anorexia, released over a 12 week period. The total duration of the study is 12 months and includes a total of four online assessments. In each assessment, carers are asked to complete a range of questionnaires assessing well-being, the impact of the eating disorder, and different aspects of their role as a carer. Participants with anorexia who choose to participate are asked to complete four online assessments which relate to well-being, eating disorder symptoms, quality of life, experience of being cared for, and the amount of support received for their eating disorder. What are the possible benefits and risks of participating? Anorexia impairs all aspects of the life of a person with this diagnosis, and the lives of their families. It is hoped that giving carers an intervention aimed at improving their mental health, their experience of caregiving and providing them with the skills to better care for their loved one, ultimately improves the health and well-being of both carers and individuals with AN. This may have far reaching consequences, including reduced health service costs due to the reduced need for health care for carers, as well as due to a potentially more rapid and long-lasting recovery of the individual with anorexia. Carers will be asked to complete several questionnaires on multiple occasions, as well as a web-based intervention to improve their carer skills and mental health. Carers may find it difficult or slightly distressing at times to complete the questionnaires or intervention modules, as they deal with the eating disorder of their loved one, aspects of caring, and mental health. To minimise this risk, carers can complete these questionnaires and interventions modules at their own pace. In addition, the questionnaire used in this study are very widely used and usually do not cause distress. Individuals with anorexia in this study will be asked to complete several questionnaires on multiple occasions. Some participants may find answering these questions difficult or slightly distressing at times. To minimise this risk, participants can complete these questionnaires at their own pace and at any time. This allows them to take breaks if required and to complete these questions at a convenient time and location. In addition, the questionnaire used in this study are very widely used and usually do not cause distress. Where is the study run from? Maudsley Hospital (UK) When is the study starting and how long is it expected to run for? September 2015 to August 2018 Who is funding the study? European Commission (Belgium) Who is the main contact? Miss Lucy Spencer [email protected]

Critère d'inclusion

• Specialty: Mental Health, Primary sub-specialty: Eating Disorders; UKCRC code/ Disease: Mental Health/ Behavioural syndromes associated with physiological disturbances and physical factors

Liens

• isrctn