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Design for Healing and Recovery from Eating Disorders: A multidimensional design model

Authors:

Abstract

The paper presents a multidimensional, participatory, inclusive, and person-centered model that aims to produce design interventions to support the recovery process from Eating Disorders. The research is situated within the emerging field of Design for Mental Health and grounded in a relational theoretical perspective and methodology. The paper provides a transdisciplinary review of the literature on designing for health and mental health, and it provides a historical overview of mental disorders' models and treatments, highlighting exclusions of factors, narratives, and gaps. The relational framework affords defining Eating Disorders as multidimensional and mediated practices, which allows seeing healing as a process with material and spatial consistencies. The paper introduces the methodology generated to develop the model: an assemblage of methods organized through a multi-phase study that produces an inclusive and materially distributed understanding of EDs and recovery. The first model iteration emerges from the analysis of in-depth semi-structured interviews with participants who successfully recovered from Eating Disorders. The paper describes the model through its actions, elements, layers, and its main aim: to produce pragmatic, evocative, and unconventional design propositions, tackling the relationships Eating Disorders are composed of that allow for a new sense of self to emerge as a new way to negotiate one's life.
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11th Inclusive Design Conference
Helen Hamlyn Centre for Design
Royal College of Art London, UK
22-23 September, 2022
71
Design for Healing and Recovery
from Eating Disorders
A multidimensional design model
Silvia NERETTI*
The Design School, Arizona State University
The paper presents a multidimensional, participatory, inclusive, and person-
centered model that aims to produce design interventions to support the
recovery process from Eating Disorders. The research is situated within the
emerging field of Design for Mental Health and grounded in a relational
theoretical perspective and methodology. The paper provides a
transdisciplinary review of the literature on designing for health and mental
health, and it provides a historical overview of mental disorders' models and
treatments, highlighting exclusions of factors, narratives, and gaps. The
relational framework affords defining Eating Disorders as multidimensional and
mediated practices, which allows seeing healing as a process with material and
spatial consistencies. The paper introduces the methodology generated to
develop the model: an assemblage of methods organized through a multi-
phase study that produces an inclusive and materially distributed
understanding of EDs and recovery. The first model iteration emerges from the
analysis of in-depth semi-structured interviews with participants who
successfully recovered from Eating Disorders. The paper describes the model
through its actions, elements, layers, and its main aim: to produce pragmatic,
evocative, and unconventional design propositions, tackling the relationships
Eating Disorders are composed of that allow for a new sense of self to emerge
as a new way to negotiate one's life.
Keywords: design for mental health; eating disorders; relational healing;
healing by design; design model
* Contact: Silvia Neretti | e-mail: sneretti@asu.edu
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Design for health and mental health:
context and gaps
This paper is situated in the fields of Design for Behavior Change, Design for
Health, and Mental Health. It focuses on crafting a person-centered, participatory,
and transdisciplinary design model that generates interventions for recovery from
Eating Disorders. This research furthermore wants to contribute to understanding
the role of Design in the emerging field of Design for Mental Health. The following
summarizes the state of the arts of design research in health and mental health.
Design projects and empirical research have been critical components of the health
experience (Chamberlain & Craig, 2017: 3); for example, Design has been utilized
to improve the usability of healthcare-related environments.
Over the past ten years, there has been a paradigm shift toward exploring the
design role in provoking change in healthcare practices (Tsekleves & Cooper,
2017). Design has further been used to explore interventions for specific health
issues (e.g., stroke rehabilitation, diabetes) and in defining approaches and
theories to design for Behavior Change (Niedderer et al., 2017).
A design field dedicated to mental health is emerging but lacking: design
interventions and approaches that could potentially build Design for Mental Health
as a discipline exist; however, cohesive theoretical and practical approaches are
missing. Shepley and Pasha (2017) differentiate between functionally challenging
and cognitively impairing mental disorders. The latter refers to issues such as
dementia (Niedderer et al., 2020), while the former refers to issues such as
depression or Eating Disorders. Few design interventions exist as well in the sphere
of functionally challenging disorders.
Design approached emotions and moods to create an attachment to products or to
improve usability (Norman, 2004), recently expanded into Design for wellbeing and
mood regulation (Desmet and Pohlmeyer, 2013) and to improve therapeutic
communication (Diatta, 2015). Interest is growing around designing for the body
and senses (Höök, 2018; Hendren, 2020; Lipps & Lupton, 2018). Finally, design
research on Eating Disorders and recovery is missing. In this endeavor, we need to
be mindful of the risks of applying design approaches instrumentally to how the
medical paradigm approaches mental health, which would disregard the original
contribution that Design can offer.
Medical models, social theory and exclusion:
contextualizing Eating Disorders
Eating Disorders (EDs) is an umbrella term that refers to the experiences of
Anorexia Nervosa, Bulimia Nervosa, Binge Eating, and Eating Disorders Not
Otherwise Specified (EDNOS). EDs are considered non-biological and
multifactorial. For example, factors contributing to EDs insurgence comprehend
individual, familial, socio-cultural, economic, and environmental ones. These factors
can emerge differently in different individuals, so generalizing these disorders'
etiology becomes cumbersome (Polivy & Herman, 2002). The model that takes
care of EDs is the biomedical one, which compares mental disorders to bodily
diseases (Bracken et al., 2012). The Diagnostic Statistical Manual for Mental
Disorders (APA, 2013; 329), for example, defines EDs through factors focused on
the individuals' bodily boundaries, eating practices, emotions, and consequences,
excluding factors outside individuals' boundaries.
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To understand the reason for this approach, one can look into how the medical
practice and the treatment of mental illness historically emerged (Foucault, 2003).
The Cartesian dualism between mind and body, and the latter's subordination to the
former, rendered bodies available for observation and treatments and allowed the
medical practice to emerge. Patients were grouped into hospitals regardless of their
issues (physical or mental); therefore, treating mental illness as a physical condition
was considered appropriate. In that context, patients' narratives have been
silenced. The biomedical model operates through the reduction of factors to
observe: this affords higher comparability between types of treatments and allows a
better understanding of treatments efficacy (Valentine et al., 2017).
This approach, however, excludes other factors around mental disorders and
recovery: e.g., patients' narratives, ways to conceptualize the body, the influences
of culture and the socio-material environment, and the concept of recovery. Even
though the biomedical model has later evolved into the Biopsychosocial model
(George & Engel, 1980), extra-personal factors are still left behind. Eating Disorders
can be read through a social lens: according to Bordo (Ruberg, 2020), Wolf (2015),
and String (2019), the idea of the thin body, dieting, and fatphobia, are distracting
practices, socially fabricated, and grounded in white supremacy, through which
reproduce and maintain class, gender, racial oppression.
Lester (2019) considers Eating Disorders as Technologies of the Self (Foucault et
al. 1998), defined as socially and culturally produced practices that individuals
embody. When referring to EDs, Lester invites us to consider individuals "carrying
the symptom of larger systemic issues" (84). Treatments for Eating Disorders rarely
address the systems that produce them. They focus on allowing the individual to
function within them. EDs treatments are developed without including the concept
of recovery, which does not have a commonly agreed definition or process (Björk &
Ahlstrom 2008). According to the sociologist Garrett (1997), recovery stories usually
appear in narrative forms and are excluded from treatment conceptualization
because, as narratives, they "resist measurements" (263). However, patients' lived
experiences have been collected through qualitative lenses: these studies show the
importance of integrating narratives into the Design of treatments for EDs (Bardone-
Cone et al., 2018). For example, Malson et al. (2011) describes the difficulty for
EDs patients to imagine a future healed self. Eating Disorders have been defined
as a stubborn condition to treat, but models and treatments have rarely changed.
Psychiatrists Fassino & Abbate-Daga (2013:1) define EDs as "examples of both
crisis of psychiatry and its moderate effectiveness, with reductionist approaches
playing a role in this regard." They suggest the need for complex models to look
into these disorders.
A relational approach to Eating Disorders: theoretical
framework and methodology
To develop a comprehensive model to design for recovery from EDs, we need a
theoretical tool that allows us to describe EDs and recovery as multidimensional
and distributed phenomena. This research uses a relational perspective, which
describes phenomena through their relationships, considering the elements they
produce and are composed of, including human and non-human ones. For
example, a social media post, a mother, a fridge, and the practice of bullying should
all be considered in terms of their relationships and which role they play in one's
EDs. This perspective prevents us from investigating phenomena from one singular
point of view (individual or structural) (Latour, 2005) and from understanding the
body, the self, and healing as relational and woven in socio-material environments.
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The self can be seen as an "unfolding network of relations between biological,
psychological, social and environmental structures" (Heersmink 2020: 7; Wallace
2019). Healing can be considered as the capacity of one's body to create new
relationships (Deleuze in Ruberg, 2020). Conradson (2005) describes how healing
relationships and experiences are composed of spatial and material consistencies,
which allow new dimensions of selfhood to emerge. Recovery approaches by
Design should focus on tackling relations that benefit from one's disconnection with
oneself, body, and emotions while crafting new relationships to allow a safely
embodied sense of self to emerge. The researcher, therefore, developed a
methodological assemblage (Law, 2004): various methods, organized in a
multiphase study, that allow describing EDs and recovery experiences from
different points of view. The methods range from:
1. Collecting lived experiences of EDs survivors, their support networks, and
professionals;
2. Investigating the role of the material environment during recovery via
ethnographies;
3. Experimenting with imagination to design for healing;
4. Testing the model via ethnographies and probes.
What follows elaborates on the findings of in-depth, semi-structured interviews with
participants who have experienced Eating Disorders in the past but identify as
recovered for not less than one year (Bachner-Melman et al., 2018). The interview
questions addressed people's changing relationships with themselves, their bodies,
food, and environments during the healing process.
The method followed ethical guidelines for research in sensitive settings to protect
participants' safety and privacy (Liamputtong, 2007). The researcher, for example,
chose to work with memories rather than active EDs' experiences and developed a
distress protocol to use during interviews to minimize emotional distress.
Participants were able to choose pseudonyms when requested. Furthermore, the
method followed the concept of saturation: once recurrent themes emerged from
interviews, the researcher stopped the recruitment process to minimize harm
(Mason, 2010). The researcher collected 14 interviews. Participation was voluntary
and compensated with a gift card of participants' choice. The interviews were
implemented through Zoom, following guidelines for COVID-19. Interviews have
been recorded, transcribed, and analyzed following a thematic analysis approach,
which produced the model's first iteration.
Eating Disorders and Recovery: analysis toward a
model
EDs have been described as displacement and coping mechanisms (Bruch, 1973):
participants' disconnection from their emotional selves and bodies serves the
purpose of detaching from EDs' underlying issues and their unsafe or misattuned
socio-material environment. EDs allow absenting (Lester, 2019) from memories of
trauma, neglect, and abuse experienced during childhood, as mentioned by
participants. Contributing factors to EDs start somewhere else, resonate with
participants, and are re-directed toward one's body, which is made up as a problem
and solution, becoming a project in need of constant maintenance, toward the
Design for Healing and Recovery from Eating Disorders: A multidimensional design model
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pursuit of unreachable thinness. Self-objectification, body dysmorphia, eating, non-
eating and exercising afford numbing and detachment, and a precarious sense of
being in control of one's environment. Almost all participants mentioned being
subjects of body and eating shaming.
If we zoom closer, participants mentioned being part of environments (schools,
sports, and familial ones) in which competitiveness, expectations, and perfectionism
are at the center of interactions, perceived as transactional goals to self-worth and
love. These environments often do not offer spaces to explore one's authenticity
and agency, negotiated through withhold and release of control. The material
environment enables EDs practices: social media posts, magazines, books, mirrors,
clothes, scales, apps, and foodstuff are the most commonly mentioned.
Participants describe their recovery as an assemblage of decisions, actions,
coincidences, people, places, matter, and metaphors, bottom-up and top-down
approaches, sharing a similar effect: participants grow around their EDs (Tonkin,
1996). Recovery feels foreign and imposed at first, but the effort of pulling away
from one's EDs carves a space to explore authenticity. One participant, for
example, describes the sense of discomfort while learning new coping mechanisms
substituting her EDs, as a way to negotiate everyday life. Participants' various
recovery processes have been visually organized to highlight similarities and
connections: recovery involves practical actions, learning, reflecting, and imagining.
Participants remember their recovery starting point as either a moment in time or as
an evolving process, which entails emotional maturity and readiness. Recovery is
something that happens or is sought: from an unexpected event (e.g., a physical
illness that jeopardizes the practice of disordered eating) to participants seeking
help over losing control over exhausting dieting practices.
Practical actions often follow the beginning of recovery. They are linked to one's
survival, require immediacy, are context-related, and focus on setting boundaries
with oneself and others. Participants mention giving up the practice of body
checking by removing scales and mirrors. One participant set boundaries with her
family, asking them to stop commenting on physical appearances. These actions
are implemented alone or with the help of therapists, friends, and loved ones.
Learning refers to adopting, e.g., new behaviors, coping mechanisms, and
perspectives to help anchor oneself out of an ED. Learning happens slowly,
imperfectly, and requires practice. Learning is mediated but independent of a
context. Concepts can be learned top-down or bottom-up; for example, participants
describe their need to re-learn how to eat by listening to their body's hunger and
satiety cues, or they mention the concept of mindful eating, learned in therapeutic
settings.
Once one steps into a recovery mindset, the entire socio-material environment that
once maintained EDs transforms into a living metaphor that supports one's
recovery journey. One participant, for example, explains how picking up gardening
taught him to see his body as an organism to cultivate rather than control. Exploring
new activities or looking for metaphors in one's everyday life are actions
instrumentally used for self-exploration. This phase becomes a life-long pursuit,
actively sought and self-initiated until it becomes a new lens through which one
sees oneself. Reflection and incorporation can happen at any moment: they require
effort, a specific dedicated time, and purposeful cultivation (e.g., journaling).
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A Design model for relational and material healing
from Eating Disorders
The model developed from the interviews' analysis is composed of:
1. Actions: five non-linear phases toward crafting a new sense of self.
Seciding; 2. Doing and Undoing; 3. Learning; 4. Imagining; 5. Reflecting and
Incorporating, toward becoming.
2. Elements: human and non-human actors involved in the recovery process,
such as 1. People (e.g., professionals, support networks, strangers'
influences, and pets) 2. Tools and environments (removing, changing,
adding); 3. Practices (material or conceptual that provide structure or
distraction).
3. Layers: design interventions are focused on relationships between
intrapersonal, interpersonal socio-cultural levels.
4. Concepts: the model should generate new reframing of one's experience
with EDs and suggest propositions toward recovery; here are a few
examples: how does food teach us to inhabit our bodies safely? How does
one develop tools to learn interoceptive and proprioceptive awareness?
How does one materialize fictional provisional selves?
The remaining part of the paper describes "1. Actions" to explain the model's
functioning.
Actions
Figure 1. Actions Scheme; The five phases are displayed within a quadrant
The five phases described should serve as a guide to conceptualizing recovery
design interventions that match one's current state of the disorder. Existing
approaches in Design for Behavior Change, inform the interventions (Niedderer et
al., 2017).
The model, for example, shares similarities with the Practice-Oriented Design
approach described by Kujer (Niedderer et al., 2017): practices should be analyzed
considering the elements that compose them, and interventions should focus on
their reconfiguration. The model is also informed by the concept of Script and its
translation into material form, as described by Latour (2005).
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Designing recovery interventions should consider spontaneous bottom-up and top-
down approaches informed by theoretical underpinning, as collected from the
research methods. Each of these recovery approaches should be analyzed in a
distributed manner to extrapolate aims, elements (humans and non-humans), and
levels involved. The findings of this analysis should be translated into a script and
into matter: tools, props, and contextual changes or disruptions should promote
behavior change, mediate interactions and connections, and inspire new ways of
being outside one's EDs.
1. Deciding
Figure 2. "Deciding" scheme
The scheme depicts four recovery starting points: one circle on the left,
representing the Eating Disordered self, connects with different configurations of
circles on the right. Recovery starting points are negotiated between agency and
environment (Clarke, 2009), where someone's agency takes over one's
environment, where agency and environment support each other, or where the
environment takes over one's agency and forces the recovery process. One
participant described her recovery starting point as a combination of events: a fight
with a friend, loneliness, frustrations towards her life choices, and Oreos as the only
form of comfort, carefully afforded the participant to lose control over her rigid
dieting plan, allowed her to question the efficacy of her EDs, and to take distance
from family's influences around dieting. This recovery process, for example, is a
negotiation between environment and agency and touches on three different layers
(one's relationship with food and the self, with family and friends, and with fatphobic
cultural influences). A design intervention could provoke a careful loss of trust in
one's EDs efficacy, mediated by food, relationships, and the environment, by
tweaking contextual affordances and reconfiguring actions.
2. Doing and undoing
This phase follows the beginning of one's recovery process, enabling or
constraining specific actions, and setting physical and emotional boundaries to
allow a different engagement with one's environment. Actions are tight to one
context and have immediacy qualities. Participants, for example, mention stepping
away from the environment and interactions centered on the thin or athletic body
and removing tools (mirrors, scales, clothes, fitness apps) that maintain one's EDs
practices. Design intervention can focus on a collaborative effort in reconfiguring
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environment engagement or disrupting the objects' function that supports EDs
practices.
3. Learning
This phase focuses on acquiring skills around eating, listening, and re-inhabiting
one's body, getting to know one's emotions and equivalent coping skills. These
skills can come from medical, therapeutic, and non-therapeutic relationships.
Design interventions could focus on extrapolating the program of action of
theoretical or practical skills (e.g., feeling one's emotions) and inscribing them into
props for practicing. These props should be designed considering the necessity of
creating proper spaces, times, and easiness for repetition. These props can be
developed in collaboration with the participants' therapists or support networks.
4. Imagining
This phase refers to an exercise in imagination via Speculative and Fictional Design
approaches: visualizing, inspiring, enacting, experiencing, and exploring activities to
deepen one's understanding until one steps into future, preferred, and healed
selves. Zimmerman (2009), referring to Ibarra's (1999) concept of provisional
selves, explains Design's intrinsic capacities to bring new dimensions of selfhood
through objects. Speculative Design approaches can have healing properties if we
compare them to narrative therapy approaches: narrative therapy operates through
telling and retelling one's story to escape the dominant narrative that influences the
perception of one's life, encouraging the untypical (Payne 2006). Fictional and
Speculative Design materialize propositions that bridge preferred realities (e.g., a
healed one) while allowing a new inquiry of the present (Wakkary et al., 2015).
5. Reflecting and Incorporating
Reflecting and incorporating are less than individual phases described above but
should be included between or at the end of each phase. It refers to the capacity to
recognize one's progress, safely welcome the new, reflect on changes, meaning-
making, and develop new goals.
Conclusions
This exploration is in the process of being completed. The final methods will test the
model's capacity to produce creative, pragmatic, fictional, and evocative design
propositions, allowing a new and healed sense of self to emerge. Design reframing
focuses on "providing alternatives to deeply ingrained ways of thinking" (Koskinen
et al. 2011: 47): in this case, Design can be seen as possessing intrinsic healing
qualities. Healing by Design is a collective effort and focuses on questioning the
various relations that produce mental disorders in the first place. Recovery by
Design has no single focal point but is made of a combination of interventions.
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Background: There is a clear need for a standardized definition of recovery from eating disorders (EDs) and for self-report instruments to assess where individuals with an ED are situated at a given point of time along their process of illness and recovery. It has been acknowledged that psychological and cognitive symptoms are important to recovery in addition to physical and behavioral indices. This study proposes a 28-item multidimensional questionnaire encompassing the main features of recovery from ED, derived from the endorsement of different criteria by people with a lifetime ED diagnosis, family members and ED clinicians. Methods: Participants were 213 volunteers over the age of 18 (118 people with a lifetime ED diagnosis, 58 healthy family members of people with EDs and 37 ED clinicians), who completed the ED-15 and indicated online how important they thought each of 56 criteria were for recovery from an ED. Results: Four factors were identified in an exploratory factor analysis: Lack of Symptomatic Behavior (LSB), Acceptance of Self and Body (ASB), Social and Emotional Connection (SEC), and Physical Health (PH). Confirmatory factor analysis using the seven highest loading items from each subscale confirmed the structure validity of a shortened version of this questionnaire, the Eating Disorders Recovery Endorsement Questionnaire (EDREQ), which had excellent goodness-of-fit indices. Despite a few between-group differences, there was general agreement that LSB was most salient to recovery, followed by ASB, SEC, and PH in that order. Conclusion: Despite the absence of a standardized definition of recovery from ED, there is a general consensus about its components. The EDREQ is a psychometrically sound questionnaire containing items that people with an ED history, their family members and therapists all define as important components of recovery. The inclusion of emotional and psychosocial aspects of recovery in addition to symptomatic and medical aspects is important to expand treatment goals and the concept of recovery from EDs beyond symptom relief and the absence of disease markers. As a clinical tool, the EDREQ stands to assist in setting and refining therapeutic goals throughout therapy, and in establishing standardized, comparable norms for recovery levels in research.
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Purpose of review: This review delineates issues in the conceptualization and operationalization of eating disorder recovery, highlights recent findings about recovery (since 2016), and proposes future directions. Recent findings: A longstanding problem in the field is that there are almost as many different definitions of recovery in eating disorders as there are studies on the topic. Yet, there has been a general shift to accepting that psychological/cognitive symptoms are important to recovery in addition to physical and behavioral indices. Further, several operationalizations of recovery have been proposed over the past two decades, and some efforts to validate operationalizations exist. However, this work has had limited impact and uptake, such that the field is suffering from "broken record syndrome," where calls are made for universal definitions time and time again. It is critical that proposed operationalizations be compared empirically to help arrive at a consensus definition and that institutional/organizational support help facilitate this. Themes in recent recovery research include identifying predictors, examining biological/neuropsychological factors, and considering severe and enduring anorexia nervosa. From qualitative research, those who have experienced eating disorders highlight recovery as a journey, as well as factors such as hope, self-acceptance, and benefiting from support from others as integral to the process of recovery. The field urgently needs to implement a universal definition of recovery that is backed by evidence, that can parsimoniously be implemented in clinical practice, and that will lead to greater harmonization of scientific findings.
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How organizations can use practices developed by expert designers to solve today's open, complex, dynamic, and networked problems. When organizations apply old methods of problem-solving to new kinds of problems, they may accomplish only temporary fixes or some ineffectual tinkering around the edges. Today's problems are a new breed—open, complex, dynamic, and networked—and require a radically different response. In this book, Kees Dorst describes a new, innovation-centered approach to problem-solving in organizations: frame creation. It applies “design thinking,” but it goes beyond the borrowed tricks and techniques that usually characterize that term. Frame creation focuses not on the generation of solutions but on the ability to create new approaches to the problem situation itself. The strategies Dorst presents are drawn from the unique, sophisticated, multilayered practices of top designers, and from insights that have emerged from fifty years of design research. Dorst describes the nine steps of the frame creation process and illustrates their application to real-world problems with a series of varied case studies. He maps innovative solutions that include rethinking a store layout so retail spaces encourage purchasing rather than stealing, applying the frame of a music festival to understand late-night problems of crime and congestion in a club district, and creative ways to attract young employees to a temporary staffing agency. Dorst provides tools and methods for implementing frame creation, offering not so much a how-to manual as a do-it-yourself handbook—a guide that will help practitioners develop their own approaches to problem-solving and creating innovation.