“One step forward, one step backwards” An Exploration of the Perception of Life of Adult People, as influenced by the Diagnosis of Severe and Enduring Anorexia Nervosa

Abstract

Title: “One step forward, one step backwards’. An exploration of the perception of life of adult people, as influenced by the diagnosis of severe and enduring anorexia nervosa.
Aim: The aim of this study is to generate an in-depth understanding of the phenomenon regarding the ‘the experiences of life’ as influenced by the symptoms of severe and enduring anorexia nervosa.
Background: In the Netherlands, current treatment programmes for eating disorders mainly focus on the physical and psychological recovery of patients with acute anorexia nervosa. However, treatment interventions focussing on those with shorter illness trajectories may not be appropriate for those with severe and enduring anorexia nervosa (SE-AN) (Touyz et al.,2013), since short-term treatment seems to have a minimal effect on persistent issues pertaining to weight, food and body shape (Touyz et al., 2013).It is precisely these beliefs that are inextricably linked to SE-AN. Hence,health care professionals identify the need for non-specific medical palliative care for patients with SE-AN. It seems reasonable, therefore, to suggest that the complexity of the condition as a severe and chronic disorder requires a different treatment paradigm (Tierney &
Fox, 2009; Touyz et al., 2013; Touyz & Hay, 2015). Thus, full recovery from every manifestation of SE-AN should perhaps
not be the primary goal of treatment for individuals with SEAN. Instead, the focus should be on improving the quality of
life and avoiding failure experiences in treatment that further discourage patients (Touyz & Hay, 2015).
Method & Methodology: The Constructivist Grounded Theory approach focuses on the experienced quality of life for people diagnosed with SE-AN (Charmaz, 2006, 2008, 2010). In this study, eight women were interviewed, adhering to the guidelines of Charmaz’s approach. The data was then analysed employing the Constant Comparative Method, with the support of the software program, MAXQDA.
Findings: Twelve key aspects were revealed within four theoretical categories, which were: ‘Suffering, but not in silence’;‘One step forward, one step backwards’; ‘Connective tissue’; and ‘Best friend, best enemy’.
Contribution to the current knowledge: Four key messages are described concerning the current findings and which contribute to a deeper understanding of the social processes of people with SE-AN, which are seen as responsible for the experienced quality of life. The findings are considered as being a logical result of the research process. Firstly, Key Message One: ‘Recognising suffering as a continual additional effect in the approach of people with SE-AN’ is presented, which suggests active changes in the behaviour of professionals. Key Message Two proposes the ‘Validation of the cyclical process of ‘adaptation versus rejection’ of the anorexia nervosa status’. This message suggests offering psycho-education which refers to the Developmental Model of Chronicity with the aim of improving of the quality of life experiences. Furthermore, it also encourages patients in the establishment of daily routines with regards to contacts and hobbies, perhaps even with the assistance of an assistance dog. To help achieve this, professionals should plan regular meetings with the SE-AN sufferer’s family and other important people in their lives in terms of the education of the chronicity and to support them in the acceptance of SEAN in their loved ones. Key Message Three presents the following stance: ‘Recognising the impact of, and respecting the communication through the SE-AN condition’. This refers to recognising the need for customised psycho-education, accommodating the SE-AN approach for all people involved, including the healthcare professionals, such as nurses, psychiatrists, general practitioners and others. Moreover, it meets the individual criteria of being specific and respects the shared decision-making approach. Finally, Key Message Four presents the ‘Respectful approach of the request for attendance and help, in the attention of an adjusted paradigm’. The data which emerged explicitly identifies the need for unconditional access to professionals for people with SE-AN, without imposing an impossible regime on them regarding their SE-AN condition, which refers to the demand for an adjusted treatment paradigm.