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Background

Psychosis is a medical term to describe a mental illness which commonly includes a range of distressing symptoms such as hallucinations, delusions and paranoia. Coping with psychosis is often a challenging demand for the individual as well as everyone close to them, including family and friends. The term “carers” refers to people who provide caring support on an unpaid basis. Caring for a loved one affected by psychosis can be a daunting experience, but we know from previous research that information on the illness, coping strategies and opportunities to share experiences and support with other carers could help.

These are the impetus behind the EFFIP project. We are working toward developing and evaluating an online resource for carers, called COPe-support (Carers fOr People with Psychosis e-support resource). COPe-support is our online resource acronym and website domain name chosen by the many carers and people with lived experience of psychosis involved in the EFFIP project.

The project

EFFIP is a 5-year research project aiming to develop and evaluate an online resource for carers. The e-support resource is dedicated for carers to gain information about psychosis and glean support and advice from others in the same position. See publications on the literature review results below.

2016 – Development phase

We focused on developmental work to identify essential ingredients and considerations in designing our e-support resource. We achieved this through conducting two reviews on literature and a focus group study with service users and carers.

2017-2018 – Modelling and Piloting phase

We worked on building the e-support resource taking on board findings from the developmental phase, and with advice and input from an Expert Advisory Group (EAG) and iterative consultations with carers. Once COPe-support was built, we ran a study to establish the usability of the resource-prototype and to refine it further based on feedback.

2018-2020 – Evaluation phase

We are currently running a study to evaluate the effectiveness of the e-support resource in improving carers’ wellbeing and how well they cope with caregiving. Check the “Get involved” page for more info.

Where are we now?

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Currently, during the evaluation phase, we are running a randomised controlled trial to evaluate how well COPe-support works to improve carers’ wellbeing and their coping with caring. More information on the study is available on the “Get involved” page.

Publications

Here are two papers we have published based on the results of the literature reviews we conducted earlier:

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Sin J., Henderson C., Spain D., Cornelius V., Chen T. & Gillard S. (2018) eHealth Interventions for family carers of people with long term illness – A promising approach?Clinical Psychology Review.

Sin J., Gillard S., Spain D., Cornelius V., Chen T. & Henderson C. (2017) Effectiveness of psychoeducational interventions for family carers of people with psychosis: A systematic review and meta-analysis. Clinical Psychology Review. 56: 13-24.

Funding acknowledgement

This project is funded by the National Institute for Health Research http://www.nihr.ac.uk/ (NIHR Post Doctoral Fellowship, Dr Jacqueline Sin, PDF-2015-08-035).

The views expressed in this website and related publications are those of the author(s) and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health.

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