Eating Disorder Recovery Maintenance: A Mixed-Methods Exploration of Protective Factors and Relapse Buffers

Salazar, Emma Elizabeth (2024) Eating Disorder Recovery Maintenance: A Mixed-Methods Exploration of Protective Factors and Relapse Buffers. Doctoral thesis (PhD), Manchester Metropolitan University.

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Abstract

Background: The impact of eating disorders (EDs) on individuals, their families, healthcare services, and economies is substantial, and maintaining recovery in the long term can be challenging. Many individuals with EDs do not seek treatment due to the secrecy, shame, and stigma associated with these illnesses. Of those who do seek treatment, half of these individuals relapse, a fifth remain chronically ill, and many die prematurely, making EDs the type of mental illness associated with the highest mortality rate. EDs are impacting a rapidly increasing proportion of the global population, and the associated strain on healthcare services as well as individuals must be addressed. Digital health is a promising area to improve accessibility to treatment and reduce costs; app-based interventions have seen recent success and popularity across various mental health diagnoses and health services. Little research has been conducted to date on apps for EDs. There is a paucity of systematic reviews addressing both usability and effectiveness of app-delivered interventions for EDs. Digital interventions for EDs have increasingly proved to offer promising venues to address low rates of treatment-seeking and engagement, long wait-list times for ED treatment, and the few preventative tools and post-treatment aftercare. Moreover, their progressive development over the past two decades has shown the importance of Patient and Public Involvement (PPI), to account for the lived experiences of service users when developing digital tools to support mental health and long-term improvement of psychological wellbeing. Methods: The current work refers to multiple studies conducted with the aim of developing a novel digital tool (a mobile app called RecoveRiver) to support people in maintaining ED recovery. First, a scoping review was conducted on the topic of app-based interventions for EDs. Electronic databases were searched for any studies utilising apps for the prevention, treatment, or recovery maintenance support for people with EDs. Of the 127 screened studies, 12 studies met the inclusion criteria for synthesis and review. The PRISMA-ScR model and Arksey and O’Malley’s (2007) Methodological Framework for Scoping Reviews were utilised to systematically evaluate and select the studies included in the current review. This initial step contributed to informing the research team—who the author of this work was Principal Investigator (PI)—regarding evidence on the effectiveness of mobile apps in promoting long-term recovery from EDs. This formed the basis of the rationale and preliminary ideas for the contents of the RecoveRiver app. Next, the RecoveRiver app was developed alongside two PPI-based qualitative studies, whose results directly influenced app contents and design. The first PPI study employed an interpretive phenomenological analysis to explore individuals’ lived experiences of maintaining ED recovery. Findings shaped the development of the first prototype of the RecoveRiver app. After developing the app prototype, an acceptability and feasibility pilot trial was conducted, for a preliminary evaluation of the product created. The results of this trial have been omitted from the thesis due to lack of data, due largely to high levels of attrition as a consequence of issues related to the app. A second stage of PPI then used thematic analysis (gathering ED patients’ feedback and suggestions on the app) to refine the app, in preparation for a larger trial to test its effectiveness, feasibility, and usability. PPI was a key focus throughout the entire development and design process of RecoveRiver. Qualitative data gathered from interviews with individuals in long-term recovery and a survey asking individuals who had recently completed ED treatment to provide feedback about the app, were synthesised in an iterative multi-stage process of app development. The lived-experience and evidence-informed mobile app developed offers worksheets, journal prompts, guided meditations, activity planning, and mood monitoring. The methods described in this paper underscore the importance of utilising PPI in the development of mental health apps. Findings: A succinct overview of the key findings is presented below. • The scoping review identified 12 papers meeting the inclusion and exclusion criteria. Their findings highlighted that app-based interventions for EDs are largely CBT-based and, on the whole, are deemed acceptable and valuable by users. • The first qualitative PPI study investigating individuals’ lived experiences of maintaining ED recovery in the long-term resulted in the primary themes: ‘Recovery is a Lifelong Process’, ‘Recovery Requires Tools and Supports’ and ‘Recovery is a Journey of Self-Discovery’. • The second qualitative PPI study indicated potential app users agreed on key contents that should and should not be included in an ED recovery support app. The significance of these findings for research and practice will be presented in greater detail in the empirical paper.