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 Post subject: Patient Perspectives
PostPosted: Sat May 04, 2013 11:18 am 
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I am posting this here because I am encouraging everyone who is capable - people who have or are struggling with eating disorders, their friends, their families, clinicians - to get involved in eating disorder advocacy. Not everyone is in a position to do this, for a host of reasons - and that's ok, but it's important to get our voices heard in the research and development of ED understanding, treatment, and services.

Why is this important? I can only reflect on my own personal experience of ED advocacy. I live in a geographically large jurisdiction with a population of just over 3 million, most in or close to urban centres but also a significant proportion spread out in large numbers of smaller, remote communities where ED diagnosis and treatment are difficult to obtain and deliver. Our government has been involved in developing a plan for the entire jurisdiction for two years, now delivering extensive direction to each health region about what services they are to deliver and where, without talking to a single person who has or is struggling with an ED or their loved ones. It is only as a result of initiating grassroots advocacy for adults that we have now been included in the process, and we are at the tail end where health regions are asking us for ideas on how they can achieve some of these objectives in an environment where the larger government is unprepared to increase funding for program development and service delivery. Funnily enough, we understand their dilemma and we actually have sound ideas for new ways of service delivery to larger and more remote populations. We are also in the position of not being bound to allegiance to the government and can speak publically and critically on issues related to increasing services in the face of decreasing funding.

We - the people affected by eating disorders - are a vital part of the diagnosis and treament regime. So, I am using this thread as a start to emphasizing patient voices and experiences - I will be adding more and hope others have contributions as well - to help empower readers get involved in their treatment communities as and when they are able to do so.

As they used to say in my long ago, misspent youth: "Power to the people!"

Patient Perspectives on Anorexia, Treatment, and Therapeutic Alliance
By Andrea
April 26, 2013

Hello SEDs readers, my name is Andrea and I’m excited to be contributing to the blog. I have an undergraduate degree in sociology and I am currently a Masters student studying family relations and human development. My research is looking at the experiences of young women in recovery from eating disorders, and uses qualitative methods including narrative interviews and digital stories to explore stories of eating disorders and recovery. I am particularly interested in stories that fall outside of the “norm,” as I feel that we sometimes hear a limited, scripted story of what it means to be someone who has had and recovered from an eating disorder.

I myself am recovered from ED-NOS, and I am happy to be making meaning from my experiences by exploring eating disorders in an academic way. I hope to be able to add my voice to the conversation–I’ll be looking mainly at the qualitative literature on eating disorders, their treatment, and recovery. You can reach me at


We often hear about treatment programs and outcomes from the perspective of the service providers and those in positions of power. Particularly where eating disorders are concerned, there has been much emphasis on exploring which forms of treatment most effectively address complex symptoms and presentations. While hearing from clinicians and researchers is undoubtedly important, and quality randomized controlled trials (which are actually few and far between, in the eating disorder realm) give us important guidelines in terms of shaping the future of eating disorder treatment, focusing solely on these perspectives may neglect to incorporate patient voices into the equation.

A previous post by Gina explored how former patients define recovery but how do individuals diagnosed with anorexia nervosa define the illness itself and the therapeutic alliance? A study by Boughtwood & Halse (2010) explores how teenage girls admitted to Australian hospitals for AN construct their illnesses, and whether these constructions align with the perspectives of their treatment programs and teams.

The authors use poststructuralist feminism as a framework for their study.


Post-structuralism is based on the writings and philosophies of several key thinkers, including Foucault, Barthes, and Derrida. These philosophers explore discourses, or how social and historical forces work to frame individuals’ thoughts and actions including language, attitudes, values and behaviours.

A major interest of post-structuralism is power, and the dynamics of power that serve to favour certain points of view or groups of individuals over others, and how this comes to impact the creation of subjectivity.

So, poststructuralist feminism is largely interested in factors that serve to position individuals at different levels of power, with a particular interest in how gender comes into the picture. These power dynamics make an exploration of clinical settings such as eating disorder units particularly interesting, as the context is layered with power differentials, for example between patients and carers, between different members of treatment teams, and between patients.

Straightforward? Not so much, but hopefully some of the intricacies of poststructuralist feminism will become more clear as I describe this study and what the authors found.

(For a more nuanced explanation of poststructuralist feminism and how it comes into play with eating disorders, I recommend reading articles by Helen Malson, including Malson, H. (1998) The thin woman: feminism, post-structuralism and the social psychology of anorexia nervosa (London, Routledge), or works by Maragaret Wetherall, including Wetherell, M. (1998). Positioning and interpretative repertoires: Conversation analysis and post-structuralism in dialogue. Discourse & Society, 9(3), 387–412.)


For their research, Boughtwood & Halse interviewed 25 teenage girls, all of whom met the DSM-IV criteria for AN. Demographically, most of these girls were Anglo-Australians, with 2 of Chinese descent and one of Italian descent. All had participated in inpatient treatment at large urban hospitals, and 20 of the girls were engaged in this treatment at the time of the study. This treatment was focused on weight restoration and the normalizing eating through timed, nurse-supervised, structured meals and snacks.

Interviews took the form of semi-structured, life history interviews conducted in a recursive (conversational) way; the girls were able to introduce ideas that were not addressed directly through the interview guide if they thought they were important to their stories. The authors focused their analysis on the descriptions the girls provided about interactions with doctors and other aspects of treatment. Within these descriptions, they located power, subjectivity, self, and relationships.

These aspects of the data were then related to notable patterns in the literature dealing with power and subjectivity in hospital settings more broadly and those constructing the “anorexic patient” more specifically. Field notes were also collected to make note of the context in which the girls were engaged in treatment.

Throughout their analysis, the authors engaged in group analysis to check for trustworthiness. This kind of check to quality of analysis is particularly important in qualitative studies such as this, as unlike quantitative research, there are few established parameters for easily determining “validity” or “reliability”- researchers must instead rely on solid theoretical backing, strong grounding of analysis in the data, and other checks for quality, including soliciting the perspectives of experienced peers and “experts” (sometimes, though not in this case, including the participants themselves).


The “Perfect Patient”

Perhaps unsurprisingly for those of us who have participated in hospital-based treatment, one of the key themes that emerged was the idea of being or performing as the “perfect patient.” Treatment systems, according to the authors’, present guidelines for how patients should behave. These expectations are transmitted through policies and procedures, including the provision of incentives for “good behaviour” (e.g. gaining weight) and sanctions for “bad behaviour” (e.g. refusing to finish a meal). These guidelines are not always accepted without resistance, and the authors found that they may lead to adversarial relationships between patients and treatment teams.

Nonetheless, their findings suggest that girls may be willing to comply for a number of reasons; for example, they may recognize that the doctor occupies a position of power and therefore must necessarily “know what is good for them” or as “means to an end,” with the end being the ability to leave treatment having completed the program.

Despite recognizing the power and knowledge held by doctors, girls may still feel ambivalent about whether they are really sick or not, and thus feel unsure about how much power to surrender in order to “get better.” Doctors may interpret patient compliance (i.e. through gaining weight, etc.) as a demonstration of their commitment to treatment. However, the girls in this study described their compliance as a way to escape the hospital environment, which many described as a stressful. The “perfect patient” identity is one of uncertainty, the authors note, as it may conflict quite markedly with the individual’s own perception of “perfection.”

Therapeutic Alliance

Boughtwood & Halse note several key findings in terms of the therapeutic alliance, or the relationship between carers and patients.

Girls engaged in inpatient treatment may possess a great deal of knowledge about their disorders and about the different roles played by members of the treatment team. This may lead to the patients making evaluations about clinician competency: new doctors or members of the treatment team deemed less knowledgeable than others (or than the patients themselves) may hold relatively less power, and patients may not see them as credible “experts.”

Similarly, young women engaged in treatment may not buy into common biomedical understandings of “health,” describing differences between physical sensations and medical measures (e.g., “feeling normal” while having extremely low blood pressure). This may lead to biomedical descriptions of the physical dangers associated with anorexia holding little sway over behaviour; the study revealed that in this group, even the diagnosis of AN may itself be rejected.

Subversive Behaviours & Therapeutic Alliance

The authors also describe girls’ accounts of engaging in practices that subvert the doctors’ authority. (I will not include here as they may be potentially instructive for current sufferers.) These behaviours may be learned from other patients engaged in treatment, and in performing them the girls are described as constructing doctors as a malicious enemy.

These subversive behaviours may hurt the therapeutic alliance in a number of ways: the patients are mistrustful of their doctors, who in turn perceive the patients as dishonest, exacerbating damaging stereotypes of individuals with eating disorders as deceitful and in need of strict, unbending treatment. What is particularly interesting about this study’s description of this process is a recognition the interactions between patients and treatment teams. Rather than seeing patients solely as passive recipients of care, the dynamics of doctor-patient interaction are explored in a way that recognizes that many patients are themselves very aware of the power dynamics at play, as well as the “ins and outs” of treatment.

Societal Gender Dynamics

The study also attends to the ways in which the dynamics of treatment map onto societal gender dynamics.

Girls are described as “colonizing” the hospital setting by bringing in items from home, which the authors suggest re-shapes the context of treatment. Further, girls on the unit may cry or give doctors the silent treatment, behaviours which are often socially coded as “feminine.” Interestingly, what the authors describe as exercises of femininity may serve to impact the therapeutic alliance by humanizing and individualizing the patients in the eyes of their treatment teams.


Overall, this study presents an interesting take on the therapeutic alliance, adding the patient perspective to the picture.

I do feel that the conclusions related to feminization of the hospital space may be overstated–I am not sure that boys and men would not also bring items from home to make their spaces feel more comfortable, and I think this would be worth exploring.

Also, as is true of most qualitative research, these findings relate specifically to the eating disorder units at which the study was conducted, and to the group of girls interviewed. The findings are interesting, but they are also context-specific; while these constructions of anorexia and the therapeutic alliance might be true in other settings, more research would need to be conducted to check the findings against other, similar studies. Finally, it would be interesting to bring back the findings to the girls themselves.

Though the authors have stayed true (as is demonstrated through their use of excerpts throughout the paper) to the descriptions offered by the participants, they have also interpreted the data in light of their own knowledge and those of others in the field. It would be interesting to see how well the analysis fits with the participants’ understandings of their acts of resistance and compliance in treatment.


Despite some limitations, this study has opens up a number of important implications and possibilities.

Primarily, recognizing that individuals with eating disorders are not simply passive recipients of care is extremely important. While this might seem like an obvious conclusion, the patient perspective is notably missing from many studies looking at therapeutic alliances and the establishment of treatment systems.

The authors did a good job of pointing out the reality that individuals with eating disorders may in fact be extremely knowledgeable about their disorders, about treatment systems, and have strong views about particular programs and doctors. To discount their knowledge and presence in treatment interactions will likely result in ineffective or, at best, temporarily effective treatment.

By recognizing the roles played by all involved in treatment, including the patients themselves, it might be possible to move toward more solid therapeutic alliances. Specific ways of integrating patient perspectives warrants further investigation and is obviously not unproblematic; again, we come up against the balancing act of “who knows best” when it comes to treating eating disorders. While I don’t think that this study answers the question entirely, I am hopeful that it will help to open a dialogue that includes patient voices.

Science of Eating Disorders

Whispered words of wisdom,
Let it be.

~~ John Lennon

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