A Mixed Methods Exploration of Eating Disorder Self Help Groups in Relation to Social Value and Recovery

There has been a steady rise in the numbers of individuals with an eating disorder (ED) in the UK with estimated numbers ranging from 725,000 to 3.4 million in England. This has led to a demand on specialist services resulting in long waits for treatment and delays in accessing appropriate support in a timely fashion. Moreover, research has found a correlation between longer waits for treatment and relapse. It is within this context that the thesis addressed the following overarching research question: ‘Who or what contributes to an individual’s recovery from an ED’. This was set within the context of ED self help groups (SHGs). To explore this, five studies were conducted using a mixed methods approach. The first two studies involved researching participants’ experiences of attending an ED SHG and what matters in recovery for them. Study one involved semi structured interviews (n=9). The results were analysed using Interpretative Phenomenological Analysis (IPA). Three superordinate themes emerged (The journey leading to attendance at an ED SHG; The proximity of relationships; and Recovery as a dynamic experience and process) supported by eight subordinate themes (I looked it up and found the group; Fears and hopes; I’ve never been in a place like this before; Uplifting being in the group: like I jumped out of a plane; Self-exploration as a way/means to discover; Helpful and unhelpful aspects of relationships with others; Recovery reflections; ED Voice as saboteur; and Moments of Freedom). The findings highlighted that the ED SHG provided a unique support with recovery, that it helped some attendees engage with treatment and offered support post treatment. In addition, it showed that the attendees’ recovery involved phases, and that the ED voice saboteur partially explained the ebb and flow of the attendees’ recovery. Study two was an online prevalence survey (n=106). The study found that 49% of participants attended the next group on finding out about it whilst 51% delayed their entry between one week to more than a year. A Principal Component Analysis identified seven factors related to recovery and four factors related to the experience of attending ED SHGs. A forward conditional binary logistic regression was used to see if any of the eleven factors were predictors of wellbeing (the WEMWBS instrument was used). It found that one of the factors, ‘personal difficulties inside the group’ (the internal personal frustration in not feeling able to use group in the hoped-for way) was potentially a six-fold high risk factor to wellbeing and that another factor ‘impact on self’ (experiencing the benefit of recovery on own life and seeing a reason to recover) was a potential protective factor. Study three complemented study two, identifying why individuals with an ED had not attended an ED SHG. This was an online survey (n= 31). The key findings noted that the reasons for non-attendance was uncertainty about ED SHGs (such as not having heard about them), followed by being worried about matters such as being the biggest one there or not being sick enough). Almost 50% of the participants would consider attending an ED SHG if they had sufficient information about the group. In comparison with participants in study two, they rated statements around recovery more positively. Study four focussed on the experiences of facilitators, and like study one used IPA and semi structured interviews (n=8). Three superordinate themes (Motivations for becoming a facilitator; The positive and challenging aspects of being a facilitator; and The importance of facilitator knowledge and skills). This was supported by nine subordinate themes (Lived experience: knowing and understanding the impact on self or family; Giving back: providing a nurturing role; Helping others: An enriching and rewarding experience; When things resonate: how it makes me feel; Making a commitment: balancing and juggling demands; Training and group process: Knowing what to do and when; Boundaries: creating a safe and/or confidential space; Being a container of distress; and The importance of self-care). The findings revealed the value of the lived experience that each facilitator brought which influenced how they carried out their role. Most recognised the importance of self-care (e.g., protecting personal time). Additionally, some used emotional distancing to manage issues arising in the group that resonated for them due to their lived experience. Study five was an exploratory evaluative Social Return on Investment (SROI) project using an online survey (n=13) of stakeholders of an existing ED SHG. The results showed the positive value and impact that the group afforded the stakeholders on wellbeing and recovery. A SROI calculator, using the concept of a Wellbeing-Year (known as a WELLBY) as the valuation tool, was used to calculate the economic value impact of the group. The SROI ratio showed that for every £1 invested in the group there was between £9 and £14 of value. Key implications arising from the five studies: i) the value of the lived experience of facilitators; ii) the importance of facilitators being offered training and supervision to enable them to carry out their role safely and competently; iii) the raising of the visibility of ED SHGs; and iv) a consideration of the place of ED SHGs within NHS support packages.