Extrait

Background and study aims Most people prefer to be cared for and to die in the familiar surroundings of their own home. Being able to make this choice very much depends on the efforts of family carers. While taking on a caring role is normally done willingly, it can result in considerable burden and negative effects on carers’ health. Therefore it is important to ensure that carers are well supported to enable them to look after patients at home while also maintaining their own health and wellbeing. So far health professionals have had no clear guidelines to help them ensure that they assess and address carer support needs regularly and in detail. So we developed a simple assessment form, the Carer Support Needs Assessment Tool (CSNAT), based on what carers told us their main support needs were in end of life home care. The procedures for CSNAT assessment, prioritisation and follow-up together form the CSNAT intervention. The aim of the study is to find out whether the using the CSNAT intervention with carers during care giving makes a difference to carer outcomes in bereavement. Who can participate? All adult carers of patients looked after by the hospice home care (HHC) services can take part in the study. What does the study involve? We will ask six HHC services to use the CSNAT intervention with carers of patients under their care. We will then compare bereavement outcomes for carers who had usual care with those who had the intervention. The HHC services will start using the CSNAT at three month intervals so we can make a comparison between services who have started the intervention with those who have not, and also make a comparison before and after the start of the intervention within each service. We will measure outcomes using a postal survey of carers 4-5 months after bereavement. To reduce any potential risks, HHC will exclude carers that are believed to suffer particularly complicated grief in bereavement, and contact details to HHC bereavement support will be provided. The study will also ask the views of the HHC nurses and some of the carers who had the intervention on what made the intervention successful or not so successful. Finally, we will look at HHC CSNAT records to see whether some factors, such as how often assessments were done, seem to make a difference. What are the possible benefits and risks of participating? Participants in the CSNAT intervention group may receive better support during care giving and experience better health, well being and lower levels of grief in bereavement. Where is the study run from? University of Manchester (UK). When is the study starting and how long is it expected to run for? The study started in May 2012 and will run for 2 years. Who is funding the study? National Institute for Health Research (NIHR) (UK). Who is the main contact? Gunn Grande [email protected]

Critère d'inclusion

• Topic: Primary Care Research Network for England, Generic Health Relevance and Cross Cutting Themes; Subtopic: Not Assigned, Generic Health Relevance (all Subtopics); Disease: All Diseases, Health Services Research

Liens

• isrctn
• ictrp