Exploring the onset, maintenance, treatment and recovery of eating disorders from the perspective of New Zealand women with lived experience : a mixed methods approach. (2020)
Type of ContentTheses / Dissertations
Degree NameDoctor of Philosophy
PublisherUniversity of Canterbury
Eating disorders (EDs) are a group of mental health illnesses (anorexia nervosa, bulimia nervosa and binge eating disorder) that can have serious and sometimes fatal health consequences. Existing research indicates a wide range of etiological factors. Key psychological and social causal factors established in the literature include: low self-esteem, emotion regulation difficulties, an external locus of control, high perfectionism, high body dissatisfaction, trauma (particularly sexual abuse), relationship struggles with parents and/or peers (including bullying) and peer pressure. Interestingly, a number of these psychological and social factors also reoccur in the literature examining the maintenance of EDs. It is accepted that multiple, rather than a single factor, contribute to both onset and maintenance, and these factors vary not only among ED diagnostic groups but also between individuals.
Despite the body of existing literature, the complexity of EDs means that etiology and maintenance is still not fully understood. Further, treatment dropout and recovery rates show there is still significant room for improvement. Despite the unique insights participants with lived experience of an ED can provide, few studies have focused upon their perspective. Research from the perspective of women with binge eating disorder is particularly limited. No studies were identified that explored patient views of causes, maintenance factors, treatment and recovery within the same sample. This lack of research looking holistically at experiences of an ED has restricted the ability to explore how perceptions of causal and maintenance factors may be connected to treatment experiences and, thus, recovery. Furthermore, research comparing the perceptions of people with different ED diagnoses, is extremely scarce; very few qualitative studies and no quantitative studies were found, despite quantitative methods enabling statistical comparisons between groups. Yet, establishing diagnostic differences may have important implications for tailoring treatment based on ED diagnosis to improve efficacy. Finally, no research was identified that used mixed methods within the same sample, yet for a complex topic such as eating disorders, triangulation through mixed methods can strengthen any conclusions or implications.
The present PhD sought to address the research gap by exploring the perspectives of women with a history of anorexia nervosa (AN), bulimia nervosa (BN) and binge eating disorder (BED), through a mixed methods approach. The specific purpose was to investigate the key psychosocial factors that influenced the onset and maintenance of an ED, and factors that participants perceived were linked to effective treatment and recovery.
Study one utilised an online survey to collect quantitative data to examine the extent to which psychological and social causal and recovery factors, identified through the literature review, were perceived to be important by women with lived experience of an ED (N = 358). Results indicated that all of the causal factors explored were endorsed by at least 43% of participants, demonstrating the broad range of factors perceived to be involved in the onset of an ED. Low self-esteem, difficulties coping with negative emotions and feeling pressure to succeed and be perfect were the most highly endorsed causal factors across all ED diagnostic groups. Perceptions of feeling a sense of control from the ED differed significantly between each diagnostic group; participants with AN were significantly more likely to endorse this causal factor and participants with BED were significantly less likely.
Participants with BED also differed from those with AN and BN in their views of several key recovery factors; they were more likely to endorse the use of support groups and tackling issues around food and body image. Self-motivation was found to be the most important recovery factor across all diagnostic groups.
In study two, a qualitative study, a subset of women from study one (n = 18) were interviewed to explore their views on the onset, maintenance, treatment and recovery of their ED. Through thematic analysis, seven themes were identified: perceptions of being in or out of control, “people always compliment you for losing weight”, difficulties in being one’s true self, judging oneself negatively in comparison to others, emotion regulation, misconceptions of what a ‘legitimate’ eating disorder looks like, and a change in perspective. Participant narratives highlighted a variety of psychological and social factors that were relevant throughout the different stages of an ED, from onset to recovery. A number of barriers to help-seeking were also described, which, in addition to viewing the ED as serving a positive function, were perceived as central maintenance factors.
The weaving method of narrative integration was used to provide a comprehensive discussion incorporating both sets of findings. A high level of convergence between the quantitative and qualitative findings was evident. Several psychosocial factors reoccurred as important to onset, maintenance, treatment and recovery. Some diagnostic differences were also established. In summary, low self-esteem and high perfectionism appeared to influence a tendency to make self-comparisons and the way in which compliments were internalised (such as pressure to maintain a high standard). Low self-esteem also appeared to foster a fear of abandonment, which resulted in participants supressing needs or concerns in favour of pleasing others. This lack of self-expression appeared to decrease the use of social support as a coping strategy and had implications for engaging in a therapeutic relationship. In addition, a need to feel in control and difficulties regulating emotions made coping with trauma and distress problematic, resulting in using an ED as a coping strategy. These integrated thesis findings were developed into a psychosocial model to illustrate the links between the psychological and social causal factors, and how these psychosocial processes impacted upon the maintenance of an ED, the treatment and recovery.
Implications of the findings for the prevention of EDs include greater focus on changing media portrayals of appearance and weight loss, and the delivery of media literacy programmes. Greater education around EDs is needed, for the public and professionals, to remove stigma and to break down barriers to accessing treatment. The results also have wide ranging implications for treatment, which include ensuring a sense of autonomy, enhancing self-motivation, addressing the perceived positive function of an ED, careful consideration of using compliments and criticism, teaching healthy coping strategies, and the importance of incorporating diagnostic and individual differences into treatment plans.
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