Defining recovery: What do patients define as recovery?
Yesterday, I posted about how researchers define recovery in a variety of clinical situations. I think we have made a lot of progress in our understanding of what recovery is from a scientific perspective. Researchers are now embracing the idea that recovery involves much more than just regaining/maintaining weight and stopping ED behaviors. Certainly that’s a large part of recovery, but it’s far from the whole picture. A lot of what science has learned about what recovery is comes not just from hard data about quality of life, psychosocial functioning, and data on relapse, but also from talking to people with eating disorders about how they view recovery.
Many of these studies were qualitative and based on extensive patient interviews. I have to confess that I’m a data girl. I like concrete numbers. But like so many things in recovery, it’s difficult to assign a hard number to factors in recovery. So perhaps its fitting that I’m using many of these types of data for a post on recovery from a patient’s perspective.
Getting to Recovery
A 2004 paper in Qualitative Health Research looked not only at what recovery was but what seemed to shift in people’s thinking as they embraced recovery (D’Abundo & Chally, 2004). For many, accepting that they had an eating disorder (and that they really should do something about it) was a significant turning point. Said the authors:
For many, acceptance of the disease was triggered by a turning point or critical event that resulted in the recognition of the severity of their eating disorder. When faced with hospitalization, a focus group member said, “I work in a hospital. I was not about to be admitted to one.” She felt she would rather change her behaviors than have her colleagues know that she was suffering from an eating disorder…Acceptance of the disease also involved recognizing negative consequences of the eating disorder. Participants realized effects of the eating disorder included looking bad, being cold, being embarrassed about eating behaviors, bingeing, purging, fertility problems, not thinking clearly, feeling tired all the time, and having no social life. Participants similarly described “getting fed up” with the consequences of the eating disorder.
Many of the interviewees spoke of rejoining society as the began to recover and participating in life again. They rebuilt relationships. Yet many said they weren’t completely over their disorder. It was still in the back of their mind, and they still had low-level struggles with food, weight, and body image.
Another study of a group of women, all of whom reported recovery from anorexia, seemed to center around a theme of “Becoming the Real Me” as they recovered (Lamoureaux & Bottorff, 2005). The process was neither smooth nor steady. One woman said that
That’s what characterized the struggle for me … the forward and the back…. It felt … as I moved forward, I was moving into territory that was unknown … an identity … that was unknown … into behaviours that felt unfamiliar…. So it wasn’t a comfortable place. It was more comfortable even though it was torturous, there was some kind of comfort in knowing how to restrict my diet. Trying to let go of that, I felt so vulnerable. And that’s where the scariness came from, that vulnerability.
Understanding the process of reaching recovery is good, but it doesn’t really tell us what recovery is. Nor does it give us a hint of how patient’s perceptions of recovery are similar to or different from the more concrete data seen in clinical research. Luckily for us, researchers are looking into that. The primary researcher studying these criteria is Greta Noordenbos at Leiden University in the Netherlands.
One of her first studies was to ask former (recovered) patients and ED therapists a set of four questions (Noordenbos & Seubring, 2006):
- Which criteria for recovery are important according to ex-patients and therapists?
- Do ex-patients and therapists agree in their opinions on recovery?
- Which recovery criteria were realized by ex-patients at the end of their most recent therapy or treatment?
- Did ex-patients improve in the period after their most recent therapy or treatment?
Using the existing literature on ED recovery, Noordenbos asked the patients and therapists about the importance of 52 recovery criteria, which included eating behaviors, attitudes about body image, physical recovery, psychosocial functioning, and emotional aspects of recovery. As seen in the table below (adapted from the study), there was a fairly high agreement between patients and therapists about which aspects of recovery were most important.
The most important recovery criteria are in the table below:
A separate study, also by Noordenbos, asked former ED patients a set of open-ended questions about what they thought were important factors in recovery (Noordenbos, 2011). Their answers fell into several main categories and were far broader than those seen in clinical research:
- Eating and drinking behaviors
- Exercise and physical activity
- Attitudes towards food
- Body evaluations
- Physical recovery
- Psychological recovery
- Emotion regulation
- Social relations
- Co-morbidity (depression, anxiety, etc.)
There was a significant amount of agreement seen with the therapist’s opinions. Interestingly, many (though not all) of these criteria are covered in Bardone-Cone’s criteria for recovery, which is another reason I’m particularly fond of this conceptualization. It’s relatively easy to measure and it encompasses many of the different aspects of recovery that patients and therapists say are important.