Ontological and epistemological stances in ED recovery research

The goal or purpose of ED recovery research depends largely on the ontological (the “what” of research) and the epistemological (the “how” of research) stances endorsed by the researcher [2, 3]. This is often considered to be foundational in qualitative research, but is less frequently named in quantitative approaches. We give a brief overview of these stances here, because how a researcher views the world will inevitably impact the goal of the research and the methodological approaches used. In this way, we cannot present a discussion of recovery methodologies without also considering ontology and epistemology.

Ontological stance refers to what we believe can be known [4, 5]. From a realist perspective, there is a single objective truth which exists [6]. On the other side, a relativist perspective suggests that there is no singular reality outside of human practices [7]. Researchers can therefore vary along this spectrum in terms of their assumptions about what knowledge exists.

Epistemology refers to how we can come to know this information [8]. For example, positivism argues that we can come to understand or know an objective reality through rigorous scientific practices [9, 10]. This is the foundation of the scientific approach and what has often been referred to as the “hard sciences.” Recently, there has been a shift in which individuals from this perspective acknowledge that data collection and interpretation may be imperfect and influenced by researcher characteristics; what is now known as post-positivism [11].

Many of the quantitative approaches that will be discussed in this paper come from a post-positivist framework in that they assume there is an objective recovery “truth” that can be uncovered if we are rigorous in our approach and seek to minimize bias. On the other side, there are contextualist [12] and constructionist [13] epistemologies. Contextualism situates knowledge and the people who create it (e.g., participants, researchers) in a broader context, acknowledging that no one person can know everything. Constructionism argues that meaning is multiple, socially-constructed, and connected to wider systems of power. In this way, there is no one definition or understanding of a phenomenon.

The ontological/epistemological stance and research assumptions that dictate the approaches we take in turn inform debates on recovery. Those coming from different traditions will thus have different views of what can be known about the phenomenon. For example, the frames of (post)positivism typically underlie quantitative research, and researchers coming from this perspective have long been calling for a clear, consistent, and applicable definition of recovery (e.g., [14,15,16,17]). However, no overall consensus definition has been reached to date, which has several implications from a (post)positivist perspective. This lack of conceptual clarity, and between-study differences in measurement approaches, impact our ability to compare the findings between studies, including reported recovery rates, which can vary dramatically, depending upon the definitions and clinical groups used (e.g., [14, 15, 18, 19]).

The belief that there is a need for a singular definition is one way of understanding the utility of recovery and may be useful for some groups. The intent of our paper, though, is not to provide a statement about what a consensus definition might be. Rather, we are offering a more diverse view of methodological perspectives (which stem from various ontological and epistemological stances) and ideas that might allow for forward movement in the field. In a dialectal format, this can involve both movement toward and away from consensus, including perspectives which do not seek to identify a single recovery definition. These paths are sometimes polarized, indicating that research aiming for (provisional) consensus is incompatible with research pushing into new areas. We suggest that both can be simultaneously pursued, acknowledging that one does not discount the other.

ED recovery research approaches: A brief overview

Quantitative research stemming from (post)positivist perspectives has tended to emphasize “objective” illness and recovery criteria that can be measured and compared in the lab/treatment, such as body mass index (BMI) (e.g., [20]), and behavioral/cognitive symptoms (e.g., [21, 22]). For example, scores of validated ED measures such as the Eating Attitudes Test (EAT) [23] are frequently subdivided into “threshold” (criteria met for a probable clinical diagnosis) or “subthreshold” (diagnostic criteria unlikely to be met). Changes in measurable physical, behavioral, and symptomatic criteria are characteristic of the medical model of recovery, with a growing body of research suggesting that such approaches may not fit as well with lived experience perspectives [24, 25].

In a systematic review of 126 studies looking at predictors of ED outcomes [26], symptom remission was used as a key outcome in over 80% of studies. This may differ from the “process” recovery criteria typically used in clinical settings, where the individual’s progress in therapy (e.g., how they navigate their recovery, showing improvements in not only symptoms, but also psychosocial functioning) may affect the extent to which they are deemed “recovered.”

A key element of these different definitions hinges on the extent to which symptom remission is considered an important first step in recovery. This point has often been promoted as self-evident, but is inconsistent with some orientations to recovery. For instance, a recovery model orientation, which has been noted to be potentially resonant with EDs (e.g., [27]) starts with an emphasis on a person’s goals and contexts, rather than assuming that symptom remission is a first step. This does not mean that “anything goes"; a recovery model promotes collaboration and discussion in exploring what recovery means and does for the person seeking it [28, 29].

More recently, researchers have suggested that in alignment with this recovery model, it may be possible to continue to exhibit some symptoms (e.g., behaviors), but have improvement in other areas (e.g., improved psychosocial functioning, QOL), and still feel that one is in ED recovery (e.g., [27, 29,30,31,32,33,34,35]). ED advocacy groups led by people with lived experience are also beginning to support approaches to harm reduction within ED recovery circles, such as those promoted by Nalgona Positivity Pride. Indeed, there are now several ED-specific, standardized measures of functioning and QOL that can provide more insight in this area, including the Eating Disorders Quality of Life (EDQOL) [36], Quality of Life for Eating Disorders (QOL ED) [37], Health-Related Quality of Life in Eating Disorders Questionnaire (HeRQoLED) [38], Eating Disorders Quality of Life Scale (EDQLS) [39], and, more recently, the Eating Disorders Recovery Questionnaire (EDRQ) [40]. In addition to assessing QOL from a quantitative perspective, QOL can also be explored qualitatively, allowing it to be contextualized against the landscape of participants’ lives.

What is considered to “matter” in ED recovery definitions thus far also differs to some extent according to who is asked. Researchers, clinicians, and people with lived experience (individuals and supportive others such as parents, family, partners, friends, mentors) may emphasize different criteria for ED recovery [41]. Further, these categories are not distinct; people may simultaneously occupy multiple positionalities at once, such as researchers and/or clinicians who also have lived experience of ED. While a consensus definition among clinicians is arguably becoming a more plausible goal [16], there may still be significant divergence of opinion between the larger clinical, research, and lived experience spaces [18]. Nevertheless, Bachner-Melman et al. [42] also found a broad area of overlap in the perspectives of people with lived experience of an ED, family members, and ED therapists, on what recovery encompasses. They proposed a questionnaire to measure four aspects of ED recovery that were agreed on by these overlapping perspectives: lack of symptoms, acceptance of self and body, social and emotional connection, and physical health [20].

Lived experience, including personally having lived with an ED, as well as being a “support” for someone with an ED (e.g., parents, family, partners, friends, mentors), necessarily informs a particular person’s ED recovery definition and provides an additional lens on the same construct. Thus, individuals who have lived through an ED may have a different view of recovery to that of their “supports” (e.g., improved psychosocial functioning, QOL, vs. medical stability, decreases in behaviors, and vice versa). However, the recovery priorities of individuals and “supports” may also align. For example, recent studies have indicated that both individuals and parents/families place high value on increased body acceptance and independence in the individual’s recovery process [43, 44]. In addition, there is a relatively new resource for partners of those with ED, which focuses on understanding, supporting, and connecting with the partner on shared recovery goals [45]. In the book “Loving Someone with an Eating Disorder,” Dana Harron includes perspective-taking exercises to help the person understand their partner’s struggle, strategies for dealing with mealtime challenges, up-to-date facts about EDs, and self-care tips to help the person maintain healthy boundaries [45].

Conceptual and methodological challenges in ED recovery research

Related to the above, researchers face a number of conceptual and methodological questions when exploring ED recovery. For example, whether or not recovery should be considered per individual ED, or trans-diagnostically, is an important question in the recovery definition literature. Bardone-Cone et al. [15] suggest that a transdiagnostic approach is most appropriate, given that diagnoses can shift, and symptoms can fluctuate over time. Indeed, longitudinal studies have indicated that participants report receiving a single ED diagnosis at one point in time, however, over their lifetime, they would have met criteria for two, three, or four “different” ED diagnoses at different times (e.g., [46]). Anecdotally, our co-authors have also noted this when recruiting participants for research. Instead of necessitating an overall cessation of ED symptoms within one diagnostic category in the traditional categorical approach, a transdiagnostic approach could rather focus on improving the status of individual symptoms (e.g., frequency of restricting, binging) as a marker of individual “recovery.”

Beyond differences in being able to compare clinical groups across research findings, we might also consider who is most commonly included in these recovery studies (and who is not). There are many significant logistical barriers to receiving an ED diagnosis and related treatment worldwide. Indeed, practical barriers include: cost, insurance coverage, rurality, transportation, work or education schedules, and lack of available childcare, which disproportionately affects people from potentially disadvantaged groups (e.g., [47,48,49,50]). The process of recovery itself invokes privilege (e.g., who is able to be diagnosed, who has access to formal treatment, and who is recovering in the “right way”). For example, EDs may be missed, or diagnoses delayed, in those who do not fit the stereotypical picture of a person with an ED, including those in larger, or non-emaciated, bodies [51, 52].

The majority of the studies thus far on ED recovery definitions are therefore composed predominantly of non-diverse participant samples who have the means to overcome the barriers to treatment access (i.e., predominantly White, thin, socioeconomically privileged, cisgender women, drawn primarily from clinical settings). Indeed, there has been comparatively little research on other populations with EDs (e.g., cis men, trans and nonbinary people, children, elders, higher weight individuals, individuals with binge eating disorder [BED], comorbidities, or late onset), as these groups often do not have access to the diagnoses and treatments that are the gateway to research study participation. These limitations determine whose recoveries we can learn about, and excludes other experiences [18, 53, 54].

Traditionally, those with lived experience have not been invited to co-design recovery research, limiting study participation and the diversity of representation. Even when recovery research includes non-clinical samples, methodology choices impact who is selected for participation. For example, studies that exclude potential participants with BMIs above certain levels (e.g., BMIs that are considered “overweight” or “obese”) exclude many ED recovery experiences automatically, limiting the view of what “recovery” looks like.

Additionally, the specific terminology of “recovery” may not resonate with all people experiencing life beyond an ED [55], causing some potential participants to self-select out of such studies. Some people with lived experience note that the term “recovery” is prescribed and carries preconceptions [56, 57]. Indeed, there are nuances and connotations involved with the use of the word “recovery.” Some individuals may consider themselves “in recovery” (on a continuous journey), while others may consider themselves “recovered” (having moved past the ED completely). In this way, the meaning of “recovery” can indicate both a process and a state [58]. Stringent criteria for including people in studies as “recovered” may pre-define the group with whom recovery is being explored. Other terminology, such as severe and enduring anorexia nervosa (SEAN), and severe and enduring eating disorders (SEED), emphasize more chronic conditions. However, these terms are not always helpful for people experiencing longer-lasting ED, as they may insinuate that healthcare providers (or the patient) have given up hope for recovery [59,60,61,62].

Given that “recovery” as a term does not resonate with all [55, 63,64,65], using other terms, including non-clinical ones (e.g., “getting better”, “healing”) to refer to these experiences may increase the diversity of experiences in the literature. As we will explain, these methodological features matter in recovery research because they significantly impact what we can know about ED recovery, and for whom.

Positioning ourselves

We come into this work from various vantage points; we name our positionalities here, since researchers’ subjectivity inevitably shapes their research and interpretations [66]. Engaging with the subjective, rather than presuming objectivity is the most ethical and effective stance in research, and can invite opportunities to uncover new and different knowledge [67]. The authors bring research and clinical lenses to bear on this work; some of us are primarily or exclusively researchers in the ED field, whereas others also practice clinically. We come from Global North countries, and all of us are White. We were thus trained in scientific traditions that privilege certain ways of knowing and doing that reflect the English and White dominant landscape of academia. While most of us benefit from thin privilege, able-bodied privilege, and cis-hetero privilege, our authorship team also includes those with non-binary, queer, fat, and chronically ill identities. Some of us have lived experience with ED, and have used this to inform our research and clinical practice. Some of us are newer to the ED field, whereas others have been working in the field for over 30 years. While we are different in some ways, our sameness centers around the academic privilege we have to access, interpret and navigate these literatures and their methodologies.

Overview and analysis of ED research methods

Below we provide an overview of the commonly used quantitative and qualitative research methods, along with tables that illustrate examples of the different types of analyses that fit within these broader methodological categories. We also analyze the benefits and limitations of each method, focusing on what we can learn from them and identifying relevant gaps in the literature.

Quantitative methods

As noted above, quantitative methods typically stem from a (post)positivist ontological/epistemological stance, which inherently affects how data are interpreted and understood. This is a core consideration of how we in turn can view the findings. This approach aims to provide “objective” results [68]; in this case, it is “recovery by the numbers.” It allows for the measurement of results through data, relying on a systematic approach of empirical investigation, and based on the assumption that there is a singular recovery definition which can be known. Researchers use statistical models, computational techniques, and mathematics to develop and test specific hypotheses. The types of quantitative analyses range from relatively simple descriptive/comparative measures to more complex multivariate measures and multi-level designs (which are all influenced by their study samples, assessments, and testable hypotheses). Data can be collected from the traditional in-person research study (or through video conferencing), or alternatively, from participant surveys (e.g., online, phone, mail, text).

Different types of quantitative methods have been employed in ED recovery research (see Table 1). Descriptive studies focus on the “how/what/when/where,” rather than the “why” (e.g., examining aspects of recovery definitions [69]), and comparative studies have a procedure to conclude that one variable is better than another (e.g., comparing different recovery definitions for agreement [70]). Univariate analyses examine the statistical characteristics of a single variable (e.g., dichotomous yes/no variable differences between recovery groups on a single measure [33], continuous range variable differences between recovery groups on multiple measures [71]), while bivariate analyses determine the empirical relationship between two variables (X and Y) (e.g., relationships between recovery attitudes and related variables [72]). Multivariate analyses aim to determine the best combination of all possible variables to test the study hypothesis (e.g., comparing recovery and healthy control groups across different recovery scores [73]).

According to (post)positivist stances, these quantitative methods have the anticipated or theoretical benefits of enabling researchers to reach higher sample sizes (increases generalizability), randomize participants (reduces bias), and replicate results (validates data). In practice, though, generalizability extends only to the sample that is recruited (as noted above, in most cases, thin, White women), and randomization within that sample thus does not increase the diversity of results. The relative focus on “novel” research means that replication studies are not conducted to the degree we would hope or expect.

In addition, quantitative methods limit what can be known about any particular individual. For example, numbers can tell us a person’s standardized assessment scores, but they do not include the detailed descriptions of the individual’s experiences. They also reduce recovery to a single experience which may overlook the tremendous diversity in lived experiences. Similarly, while statistical analyses can account for contextual confounding variables, they cannot tell us the broader factors which influence the delivery and the function of interventions.

Table 1  Quantitative methods of research Qualitative methods

Overall, qualitative methods offer the potential to engage deeply with phenomenon of interest, often stemming from non-positivist epistemological stances (e.g., constructionist, feminist). While qualitative methods are commonly critiqued for small sample sizes, in a qualitative paradigm, small samples allow researchers to dig into the nuances illustrated in participants’ stories, strengthening study findings. The aim of qualitative research is in-depth, contextualized analysis, rather than generalizations. Qualitative methods often, but not always, involve interacting directly with participants in the form of interviews or focus groups. However, qualitative research can also involve analyses of existing textual or image data, such as blog or social media posts, or news articles. A core feature of qualitative research is the researchers’ focus on exploring meaning in voiced or textual data, vs. using only quantitative measures.

Despite shared features, qualitative methods vary enormously in terms of data collection and analysis types. This is due in part to the differences in theoretical basis, epistemologies, ontologies, and paradigms that inform what meaning researchers perceive as possible to achieve. Some (e.g., [74]) draw on the concepts of “big Q” and “small q” to differentiate in broad terms between the qualitative methods [75]. Briefly, “big Q” methods invite and acknowledge researcher subjectivity, whereas “small q” approaches attempt to aim at more “objective interpretation,” [76], which is more similar to (post)positivist approaches. Further, “big Q” approaches tend to delve into the connections between knowledge production, analysis, and sociocultural contexts in which research takes place, whereas “small q” approaches tend to focus more on descriptive, groundwork-laying analysis for quantitative methods to provide generalizability [76]. Neither approach is inherently “better;” they are designed to achieve distinct findings.

Some of the qualitative methods that have been commonly used to explore ED recovery experiences are summarized in Table 2. Note that these are not the only methods used. Some (particularly earlier) studies, describe their methods as “qualitative,” without specifying the exact type(s) of analysis. The differences between these various types of methods are at times subtle.

Discourse Analysis (DA) focuses on language not as just a route to content, but as powerful in and of itself (e.g., analysis of talk about recovery) [77, 78]. Within DA, Linguistic Analysis adds a focus on language present in the text, with more of an emphasis on terms used, and their connotations (e.g., explorations of Internet message board communications about recovery) [79]. Also within DA, Narrative-Discursive Analysis adds a focus on social power (e.g., analysis of recovery interviews with a gender lens [80]), alongside an emphasis on stories (individual and broader, social stories). Narrative Approaches emphasize the story (e.g., analyses of participant writing, life-history), and situates recovery within the broader culture [31, 81,82,83,