Are recovery stories helpful for women with eating disorders? A pilot study and commentary on future research

Traditional treatments for those with anorexia nervosa have not been wholly effective [1] and, accordingly, new treatment approaches need to be explored. The Recovery Model, which emerged from consumer movements (emphasising the personal experience of recovery, involving hope, connection, and establishing a personally fulfilling life) [2], has emerged as an alternative means to consider treatment approaches for people with eating disorders [3]. This model privileges the sharing of consumer knowledge and experience as an important part of recovery and can include ways for peers to be involved in treatment [4]. While there are few consistent definitions of recovery in the field of eating disorders [5], historically, recovery has been defined using medical model approaches including varying composites of physical, behavioural, and, more recently, psychological domains [5, 6]. Such definitions neglect domains that may encompass more general well-being or quality of life hence the move to embrace more holistic and person-centred approaches [3]. While recovery-oriented care has been identified by the Australian Health Ministers’ Advisory Council and the NSW Mental Health Commission as a priority in order to create modern, open and inclusive mental healthcare services [7] few treatment approaches have yet been developed to provide this and there is little research exploring approaches to treatment that include the sharing of lived experience. However, these ‘interventions’ are happening in the consumer community anyway. One such example of this is the sharing of personal stories of recovery.

In the last two decades there has been a significant increase in the number of published eating disorder memoirs [8] and recovery stories are readily accessible on the internet via eating disorder organisation websites, blogs, online forums, social networking sites, and video channels with the authors detailing the experience of living with and recovering from an eating disorder. Anecdotally it is well-known that people with eating disorders often read recovery stories; however, there is a significant absence of research in this area and it remains unknown how helpful they are considered by current sufferers. While narrative therapists have used stories to encourage alternative voices to the voice of anorexia nervosa [9] and have attempted to circulate liberating stories of recovery via the ‘Archives of Resistance’, a website dedicated to sharing ‘anti-anorexia’ stories [10] the efficacy of such an approach has not been tested. A single laboratory study has been conducted on recovery stories which explored the effect of reading eating disorder memoirs on 50 undergraduate students with no eating disorder pathology [8]. This study found that eating disorder memoirs had no effect on the eating attitudes and behaviours of participants, however, the experience of reading recovery stories for people with an eating disorder remains unknown and questions remain as to their potential effects.

The aim of the current study was to explore the effect/s of reading recovery stories for women with a current eating disorder, specifically exploring how helpful they are. There are inherent complexities when opening up a new area of research and given the dearth of research in this area knowing what (and how) to explore is complex. As such, we first look to literature in the field more broadly to determine any preliminary hypotheses as to why and how recovery stories might be helpful or unhelpful for readers. Firstly, recovery stories might offer a means of increasing motivation and self-efficacy. Ambivalence about recovery is consistently identified as one of the major challenges to treatment [11, 12] and a lack of self-efficacy is associated with poorer outcome [13]. Patients with anorexia nervosa have been found to perceive the illness as having low controllability and curability, and as chronic [14]. Given that perceiving recovery as impossible has been identified as a core obstacle to change [15, 16] people with anorexia nervosa might benefit from knowing that people can and do recover [17].

A second mechanism through which such recovery stories could be helpful is the provision of information about different pathways to recovery. Patient-centred accounts that are strengths-focused (as opposed to deficits-focused) and offer examples of how individuals move from illness to wellness can impart guidance [18], potentially increasing awareness and understanding about the process of recovery [18]. Additionally, those with lived experience are in a unique position to offer hope, understanding, solidarity, and vital information. This allows for the sharing of ‘insider knowledge’ [19] which can be more influential and empowering than messages delivered by health professionals [20]. Delivering messages in narrative format may also mean that messages are less likely to be rejected by readers than other forms of motivational messages [21]. It has been proposed that narrative forms of communication reduce counter-arguing and facilitate observational learning [21]. Narratives have been used to enhance patient well-being and healthcare participation for cancer patients [22] and narrative information has positive effects on health care participation [23]. It has been suggested that patient narratives might be more effective forms of communication than didactic formats (e.g., fact sheets, brochures) because they are more engaging and provide role models [23].

Despite these conceivable benefits, there is also the possibility that stories of recovery might be unhelpful due to potential iatrogenic effects [8] as anorexia nervosa may be associated with social learning processes of imitation, identification and competition; a so-called ‘peer contagion’ effect [24]. Patients have reported that group treatment settings can be a competitive environment [25] leading to new eating disordered habits [26]. Similarly, popular pro-eating disorder online communities [27], are believed to be potentially harmful due to the exchanging of inappropriate health messages and that people access such sites to learn ‘how to be anorexic’ [28]. However, one of the main attractions to visiting pro-eating disorder websites is in fact the seeking of support and belonging [27]. These sites offer support that is not available from regular face-to-face contact [29]. Recovery stories delivered responsibly might be able to offer a similar supportive function while limiting the potential dangers.

The aim of this pilot study was to explore the effect of recovery stories on a clinical sample by firstly exploring if they have any effect on improving motivation and self-efficacy. Recovery stories were compared to a wait-list control group and the primary outcome variable was change in motivation as measured by (i) intentions to recover and (ii) stage of change. Secondly, this study aimed to qualitatively explore the experience of reading such stories for women with eating disorders.

The current study provided the first exploration of the effect of recovery stories on a clinical sample. The quantitative results indicated that reading stories of recovery had no effect on improving motivation and self-efficacy over a two-week period. Additionally, there were no significant differences between groups post intervention on any of the secondary outcome measures. In contrast the qualitative results showed that the stories generated thoughts about the possibility of recovery and the majority of participants would recommend recovery stories to others.

Although the current study found recovery stories exhibited no quantitative effect on motivation or self-efficacy, these null results should be interpreted with caution. There are some important design features of the current pilot study that might explain these findings. First, the intervention dose was small. Five stories were chosen as it was thought this was an achievable number to ask individuals to read over a two-week period, however a more intense intervention may be needed. The stories might have had more effect if they included guided activities/reflections or were integrated into a therapy program. Equally, it is possible that the specific stories used in the current study were ineffective. Further, it is also possible that participants experienced changes in constructs not directly measured in this study, or that changes surfaced after the two-week follow-up. Additionally, the characteristics of the sample need to be considered when interpreting the results. For example, how participants were recruited might have resulted in a self-selecting sample. These individuals might already have been familiar with recovery stories, which could have resulted in a saturation effect, and this should be controlled for in future research. Participants also scored high on measures assessing eating disorder and psychological symptoms and might have been too unwell to benefit from the stories.

Another reason why the quantitative results should be cautiously interpreted is the discrepancies between the quantitative and qualitative data, with qualitative data mainly supporting benefits but quantitative data not showing any improvements. Potentially future research could explore variables in addition to motivation and self-efficacy. Participants reported that the stories resulted in increasing feelings of hope and reducing feelings of isolation; exploring the effect these variables in future research would therefore be useful. The qualitative results might also be indicative of broader changes that the current design did not capture and are not easily measureable with current research methodologies. For example, the reading of recovery stories might be akin to planting a small seed that leads to changes that emerge slowly over time, thus follow-up measures might be useful in future studies.

In addition to finding the stories helpful in terms on increasing solidarity a minority of participants also reported that they could be unhelpful. Despite efforts to remove any obviously triggering material from the stories, some participants reported being triggered by the narratives. While there is individual variation in what will be considered triggering, a challenge for developing recovery stories will be balancing the need to present stories responsibly with the need to present an authentic account that does not necessarily skirt around the challenges of illness and recovery. Stories need to be relatable to be effective [51], so it is likely that recovery stories need to include some description of thoughts and feelings associated with an eating disorder so that readers can identify with the struggle. The stories used in the current study reflect the true accounts of five women’s recovery, however, stories that are developed with the specific intention of being a therapeutic tool, for example by having less detail of illness and even more of a recovery focus, might be more helpful in the future.

The qualitative data suggested that recovery stories might help to increase hope and solidarity, which is line with approaches which aim to integrate the voices of lived experience into treatment, thus the findings of this study add to a growing body of research supporting recovery-oriented approaches to mental health. Historically, treatment approaches in the eating disorders have focused more on symptom reduction with less importance placed on solidarity, feeling understood, hopefulness, and the reduction of isolation [3], however, such factors have been continually highlighted as important by those with lived experience of eating disorders [16]. Over the last few decades there has been a move to recovery-oriented care with reforms in mental health reflecting this. The growing recognition and interest in integrating lived experience into treatment has resulted in the uptake of peer roles in consumer advocacy, consumer operated services, and traditional statutory mental health services [52, 53] It has been argued that employing peers with lived experience improves mental health care and service provision [53]. Peer work has been identified as having multiple benefits including the opportunity to connect with a person with lived experience of mental illness and stigma, the sharing of a common language, and facilitating recovery [52]. Additionally, peer work has been associated with the normalising and acceptance of emotional responses associated with mental ill-health [52]. Challenges remain however around training, supervision, and management and many questions about peer work remains [52].

While approaches to treatment which include lived experience have grown in recent years in mental health approaches more broadly, for example the introduction of Peer Supported work in Open Dialogue [54], such approaches have yet to be fully developed in the field of eating disorders. Some approaches currently available in the field include Multi-Family Therapy for young people with an eating disorder and their family [55, 56]; a treatment in which the sharing of support and solidarity amongst families is explicitly prioritised and parent-to-parent consultations in Family-Based Treatment where parents who have ‘graduated’ from therapy consult with parents earlier in the process. Peer-mentoring is also the subject of emerging research in the field, where a person who has experienced recovery mentors a person with a current eating disorder. Early research in this area suggests, in line with the findings from the current study, that peer-mentoring can increase hope for current sufferers [57, 58]. A recent study has examined the effect of therapists working in the field of eating disorders with lived experience of an eating disorder themselves and found that using experiential knowledge can have advantages such as providing insights into the recovery process and enhancing hope for recovery but that this knowledge must be shared thoughtfully and without specific details about symptomatology [59]. The current study adds to the emerging research in the field of eating disorders regarding recovery-oriented approaches and lived-experience integration however, much more research is needed. Determining ways to effectively integrate these approaches into current treatments and broadening treatment targets to include this is needed. The results of this study suggest that the voices of those who have recovered can provide support and understanding and reduce isolation, however, a small minority also reported finding the experience triggering therefore, further research is needed is consider how to best develop and integrate these voices into treatment.

While the current pilot study has contributed to furthering knowledge about the use of recovery stories, there are some limitations. Participants were recruited over the internet and clinical information was self-reported. The two-week time period used in the current study is a very short time frame in which to assess change in symptoms or clinical features. The recovery stories may have had a longer-term effect medicated by an increase in hope. An additional limitation is the lack of an apriori power analysis. Given this is a novel study, clinical effect size could not be determined and, therefore, a power analysis could not be completed. Lastly, given the design, a blinded outcome was not possible. We went to the literature to consider why and how recovery stories might be helpful, however, asking consumers is an important first step, and qualitative research methods might best achieve this aim. Narrative methods might be an appropriate means to explore how recovery stories might effect change and their relationship to the reader. Later research could focus on 1) identifying for whom and at which stage of illness recovery stories might be helpful; 2) the mechanism via which they might operate; and 3) the most helpful way of presenting such stories. There are also likely to be age, cultural, and gender differences in outcomes, which the current study did not explore, which needs to be a focus of future research.

The findings from the current study suggest that the experience of reading recovery stories is complex. Much remains unknown about how such stories might function for the reader. Given the likelihood that those with eating disorders will be exposed to such stories it is important to more clearly understand the impact of recovery stories. As research and treatment approaches expand to include and prioritise increasing hope, reducing isolation and increasing feelings of solidarity, this study adds to the body of growing research into how to integrate the voices of lived experiences into treatment. This study raises many questions that are needed for future research and may provide an important starting off point as lessons learnt for researching this complex and novel area.