Living and leaving a life of coercion: a qualitative interview study of patients with anorexia nervosa and multiple involuntary treatment events

Participants

Seven adult female participants in their 20s and 30s were included. Four currently had AN or atypical AN. Six had been diagnosed with comorbid psychiatric diagnoses (personality disorders, depression, autism spectrum disorders, obsessive compulsive disorder, attention-deficit hyperactivity disorder, and schizotypal disorder). They each had from five to above 100 IT events. None of the participants experienced only involuntary admission or detention. Examples of IT events were involuntary admission, detention, mechanical restraint, physical restraint, nasogastric tube feeding, and constant observation, i.e., the constant presence of a professional.

Themes

The data portrayed a process of living and leaving a life of coercion with a timeline covering three broad themes; living with internal coercion, coercive treatment, and leaving coercion; and five subthemes; helping an internal battle, augmenting suffering, feeling trapped, a lasting imprint, and changing perspectives (see Fig. 1).

Fig. 1figure 1

Patients' understandings of reasons for IT may be relevant to understand the source of their perspectives. They included low weight and a need for nutrition, resistance or lack of cooperation, compulsive exercise, a risk of absconding, and crying. Most participants described reasons for IT being influenced by organizational concerns such as lack of time to talk with patients, following a ”routine” practice, or a specialized residence pushing for IT. Similar concerns were also among reasons why IT continued, for instance a municipality not following the psychiatric hospital's recommendations about a specialized residence or staff's expectations based on previous admissions. IT could also continue because it was the only way for the participant to legitimize eating.

Overall, the participants' opinions about IT included a general consensus that IT is occasionally necessary. They elaborated on this, stating that sometimes it can be difficult to reach and reason with a patient with AN, although it is not necessarily too late at the time of IT. It was described that staff should not be too hesitant using IT in order to avoid further escalation or death. At the same time, participants described ambivalence about the use of IT and that it is ideal not to use it. They described that IT could, at least sometimes, have been avoided, and that it was occasionally used inappropriately in their own cases. Some participants found it difficult to establish a dialogue with staff. Some participants stressed the importance of being careful not to use IT routinely, or stated that IT could make everything worse. The participants' opinions on when IT was justified included to save lives and in case of danger to oneself or others. The data also yielded coercion as a very familiar phenomenon to patients not only imposed upon them by the health care system, but also prior to that, internally by AN itself. As IT also affected some of the participants after hospitalization, we suggested that patients' perspectives on IT should be outlined on a timeline including their lives before and after IT.

Living with internal coercion

The theme "living with internal coercion" reflected that the patients' AN dictated what they should or should not do. Participant quotes are shown in Table 1.

Table 1 Participant quotes related to the first theme "Living with internal coercion"

Almost all participants described how AN itself created a state of internal coercion, forcing them to follow a regime of strict dieting, starvation, self-harm, and/or engaging in compulsive exercise. However, at the time of the IT, the fusion between the patients and AN was great with most of them experiencing AN as ego-syntonic or at least partially ego-syntonic.

Coercive treatment

The second theme reflected perspectives on being coerced in treatment and included the subthemes "helping an internal battle", "augmenting suffering", and "feeling trapped". Participant quotes are shown in Table 2.

Table 2 Participant quotes related to the second theme "Coercive treatment"Helping an internal battle

All participants expressed that they generally did not consider IT helpful at the time of IT. However, they sometimes saw the benefit at the time of IT and described the helpfulness of knowing that involuntary nasogastric tube feeding would be used if they did not comply with refeeding treatment. Some participants described that IT involving nasogastric tube feeding supported them in a battle in their minds against AN. That is, IT helped against an ongoing internal battle they had with their AN—it helped avoid the responsibility for getting nutrition, by placing the responsibility outside themselves, and some even described development of a reliance on nasogastric tube feeding and accompanying IT to receive nutrition.

Augmenting suffering

We found that the participants generally experienced IT as negative and that it added to their suffering. They used many negative words to describe IT, for instance abuse or assault, punishment, transgressive, unpleasant, fierce, and shameful. They described feeling powerless and not listened to or understood. IT was described as a loss of control with the elaboration that control was an important part of AN. IT also entailed a loss of meaning of life provided by using AN as a coping strategy, and the lack of any substitution could contribute to suicidality. Most participants experienced that IT created panic or anxiety, typically related to fear of nutrition or gaining weight.

Some of the participants also emphasized specific IT measures as negative. Constant observation was described as being transgressive; there was a description of constant observation being unbearable, although it was not considered to be IT at the time. Similarly, physical restraint was described as distressing and inhumane, while mechanical restraint was described as transgressive, degrading, worst, or difficult. Moreover, some participants experienced nasogastric tube feeding as unpleasant or scary.

Feeling trapped

Participants' descriptions of IT give a picture of feeling trapped or hunted, which resulted in resistance and attempts to escape. They also used other strategies such as yelling, crying, shutting the world out, kicking, spitting, self-harming, begging for help, and dissociating.

Some participants resisted IT in any way possible and resistance could lead to an escalation of IT, such as restraint after nasogastric tube feeding to prevent self-mutilation or purging behavior. Sometimes, IT could escalate to continuous nasogastric tube feeding while mechanically restrained. A few participants stated that they only resisted in the beginning of their course of treatment, possibly reflecting acceptance or learned helplessness.

Leaving coercion

This theme reflected how the patients gained a new perspective and could reflect on the life-saving aspects of IT in retrospect, while at the same time still being affected by IT. The theme included the subthemes "a lasting imprint" and "changing perspectives". Participant quotes are shown in Table 3.

Table 3 Participant quotes related to the third theme "Leaving coercion"A lasting imprint

The participants experienced that IT had a negative imprint on them, often for a long time. Most of the participants described effects bordering on trauma symptoms, such as dreaming about IT, fear of being touched, trying to forget the experiences, or trying to avoid particular IT measures including mechanical restraint, nasogastric tube feeding, and involuntary admission. Persistent attempts to avoid physical restraint could occur after having witnessed it. Moreover, IT as contributing to low mood was described, although infrequently.

Changing perspectives

The participants generally changed their understanding of IT and perceived it necessary and helpful in retrospect, and most of them described a change in their way of treating themselves during recovery from AN.

The participants described retrospectively viewing IT as necessary, unavoidable, meaningful, or helpful at least to some extent. The latter, though, not necessarily in ways that we imagine were intended by professionals. For instance, IT, among other aspects, could help a participant become motivated to avoid re-experiencing it. The expedient effect of IT in retrospect contrasts with the perception at the time of IT. In retrospect, all participants were able to reflect further on what staff aimed to achieve with IT, such as saving lives and ultimately wanting to aid their recovery.

Most of the participants described that their way of treating themselves had changed since the time of IT to include not being self-destructive, being able to prevent deterioration, not coercing themselves, not punishing themselves so much, and being more caring towards themselves. Only a few of the participants described that their way of treating themselves had not changed and that they had not recovered and were still very affected by AN.

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