Award Title: Self-Harm in Eating Disorders: A Mixed-Methods Exploratory Study (SHINE Study)
Funder: Department of Health and Social Care

Abstract: Research Question:  What are the psychological, emotional, and social factors that motivate and maintain self-harm in young people aged 16-25 with an eating disorder?  Background:   Rates of SH in young people with EDs are exceptionally high, ranging between 25.4% and 55.2% (Claes and Muehlenkamp 2014), contrasting to 13.4% in the general population (Swannell et al. 2014). The prevalence of SH in EDs is more than double that in other psychiatric disorders (Solano et al. 2005) and is a risk-factor for suicide (Cucchi et al. 2016).  It is not known why a young person may develop both ED and SH, or how these interrelate or impact one another. There are no targeted NHS services or interventions for SH in ED.  Aims:    Investigate the psychological, emotional and social factors that underlie SH thoughts and behaviours in young people aged 16-25 diagnosed with an ED  Explore young people s perspectives of the causes and functions of SH in an ED; and, on the psychological/clinical/social support needed to address SH in ED.    Objectives:  Phase 1    Examine the frequency, intensity and duration of SH thoughts and behaviours in young people with ED, as they occur in real-time.  Examine the context, function and processes surrounding SH thoughts and behaviours in young people with ED.  Identify proximal factors predicting transition from SH thoughts to behaviours.   Phase 2  Explore young people s perspectives on:    Factors that led to the development of SH (thoughts and/or behaviours) and ED.  Social and emotional functions of SH and ED; and, their interrelationships.  Psychological/clinical/social support needed to address SH in ED.   Methods:  Sequential explanatory mixed-methods study (Creswell et al. 2003) in two specialist ED outpatient services for young people.  Phase 1: 70-100 participants aged 16-25 with an ED and SH thoughts or behaviours will take part in ecological momentary assessment, repeatedly capturing feelings, thoughts, motives, behaviours and experiences of SH in real time over 14 days.   Phase 2: 20-30 participants to Phase 1 will also take part in a qualitative interview, exploring: experiences of SH in ED; why and when the ED and SH developed; what functions each serves; support needs. Thematic analysis of data (Clarke and Braun 2013).  Timeline for Delivery:  18 months: Pre-award: Set up; recruitment of Research Fellow; HRA and REC submission & approval. 0-8: first YAG consultation; Screening; EMA data collection, analysis; second YAG consultation; 9-16: Qual Data collection, transcribing, analysis; third YAG consultation; 15-18: Data integration; write up; dissemination; fourth YAG consultation; Project close.  Anticipated Impact and Dissemination:  The study will: Establish why young people with ED also self-harm, and define their social, psychological and clinical support needs; Generate knowledge to inform future NHS interventions for the treatment of SH in ED and pathway restructure within existing CAMHS services; Inform public understandings of SH and ED in young people; Establish the feasibility of combining EMA and qualitative interviews with young people with complex MH comorbidity; Build capacity for young people with lived experience to become future leaders in MH research. Dissemination of findings to: clinical, academic and lived experience audiences.

Lay Abstract: Aim:    This study will investigate the psychological, emotional, and social factors that underlie self-harm (SH) in young people aged 16-25 with an eating disorder (ED).  Background:   Described during our stakeholder consultations with young people with lived experience as “something that s not talked about enough”, approximately 25%-55% of young people with an eating disorder (ED) self-harm. This is much higher than the estimate of 13% of young people in the general population.  Currently, however, there is a lack of knowledge of how best to treat self-harm in the context of eating disorders and there are no NHS targeted services or interventions. This means that a young person with an ED who self-harms is faced with a focus on one diagnosis rather than a holistic approach to their difficulties. This leaves some support needs unmet and risks making ED treatment less effective.  This service gap stems from the fact that we do not know enough about the psychological, emotional, and social factors that lead a young person with an ED to self-harm or how these behaviours interact or impact one another on a day-to-day basis. Until we understand this, including from the perspective of young people themselves, there will not be enough evidence to develop targeted interventions or services.  Our study will therefore establish what motivates and maintains SH in this group of vulnerable young people, exploring their experiences and defining their support needs.  Design and Methods:   Set in three specialist outpatient services for young people with eating disorders, this study will sequentially use quantitative and then qualitative methods:  Phase 1: 70-100 young people aged 16-25 with an ED and SH thoughts or behaviours will take part in ecological momentary assessment: A downloadable app will repeatedly capture participants  current feelings, thoughts, motives, behaviours and experiences of self-harm in real time over 14 days.   Phase 2: 20- 30 young people who participated in Phase 1 will be re-approached to invite them to take part in an in-depth qualitative interview. These will sensitively explore with participants: experiences of SH in ED; why and when the ED and SH developed, including the influence of life events; what functions the ED and SH are serving, and how these interrelate; participants  support needs.  Public and Patient Involvement:   The study has been designed with members of an advisory group of young people with lived experiences, who have described it as “really needed” and “ethical.” They have advised us on appropriateness of methods, ethical considerations, the feasibility of recruiting young people, and they have set research priorities. Members  involvement will be continued and invaluable. They will review emerging findings, input into the development of qualitative topic guides, be part of accessible dissemination and collaboratively set priorities for follow-on research.

Research Activity Codes: 2.3 PSYCHOLOGICAL, SOCIAL AND ECONOMIC FACTORS
Health Categories: MENTAL HEALTH