Impact of receiving recorded mental health recovery narratives on quality of life in people experiencing psychosis, people experiencing other mental health problems and for informal carers: Narrative Experiences Online (NEON) study protocol for three randomised controlled trials

Stefan Rennick-Egglestone*, Rachel Elliott, Melanie Smuk, Clare Robinson, Sylvia Bailey, Roger Smith, Jeroen Keppens, Hannah Hussain, Kristian Pollock, Pim Cuijpers, Joy Llewellyn-Beardsley, Fiona Ng, Caroline Yeo, James Roe, Ada Hui, Lian Van Der Krieke, Rianna Walcott, Mike Slade

*Corresponding author for this work

Research output: Contribution to JournalArticleAcademicpeer-review

Abstract

Background: Mental health recovery narratives have been defined as first-person lived experience accounts of recovery from mental health problems which refer to events or actions over a period of time and which include elements of adversity or struggle, and also self-defined strengths, successes or survival. They are readily available in invariant recorded form, including text, audio or video. Previous studies have provided evidence that receiving recorded recovery narratives can provide benefits to recipients. This protocol describes three pragmatic trials that will be conducted by the Narrative Experiences Online (NEON) study using the NEON Intervention, a web application that delivers recorded recovery narratives to its users. The aim of the NEON Trial is to understand whether receiving online recorded recovery narratives through the NEON Intervention benefits people with experience of psychosis. The aim of the NEON-O and NEON-C trials is to evaluate the feasibility of conducting a definitive trial on the use of the NEON Intervention with people experiencing non-psychosis mental health problems and those who care for others experiencing mental health problems respectively. Methods: The NEON Trial will recruit 683 participants with experience of psychosis. The NEON-O Trial will recruit at least 100 participants with experience of non-psychosis mental health problems. The NEON-C Trial will recruit at least 100 participants with experience of caring for others who have experienced mental health problems. In all three trials, participants will be randomly allocated into one of two arms. Intervention arm participants will receive treatment as usual plus immediate access to the NEON Intervention for 1 year. Control arm participants will receive treatment as usual plus access to the NEON Intervention after 1 year. All participants will complete demographics and outcome measures at baseline, 1 week, 12 weeks and 52 weeks. For the NEON Trial, the primary outcome measure is the Manchester Short Assessment of Quality of Life at 52 weeks, and secondary outcome measures are the CORE-10, Herth Hope Index, Mental Health Confidence Scale and Meaning in Life Questionnaire. A cost-effectiveness analysis will be conducted using data collected through the EQ-5D-5 L and the Client Service Receipt Inventory. Discussion: NEON Trial analyses will establish both effectiveness and cost-effectiveness of the NEON Intervention for people with experience of psychosis, and hence inform future clinical recommendations for this population. Trial registration: All trials were prospectively registered with ISRCTN. NEON Trial: ISRCTN11152837. Registered on 13 August 2018. NEON-C Trial: ISRCTN76355273. Registered on 9 January 2020. NEON-O Trial: ISRCTN63197153. Registered on 9 January 2020.

Original languageEnglish
Article number661
Pages (from-to)1-34
Number of pages34
JournalTrials
Volume21
DOIs
Publication statusPublished - 20 Jul 2020

Keywords

  • Carers
  • MANSA
  • Mental health
  • Pragmatic trial
  • Psychosis
  • Quality of life
  • Randomised controlled trial
  • Recovery narratives
  • Recovery stories

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