An exploration of the perceptions and experiences of living with chronic anorexia nervosa while an inpatient on an Eating Disorders Unit: An Interpretative Phenomenological Analysis (IPA) study

Sampling

As discussed by Smith (2004), IPA is concerned with the lived experience of a particular phenomenon, thus it prefers a small, homogeneous sample as it aims to balance the identification of shared themes/experiences with the idiographic nature of experience (Smith, 2004). Six participants were recruited from two eating disorders services. Patients were admitted when they were either at high risk physically (e.g. low BMI, <14) or high psychiatric risk (e.g. self-harm). The mean age of the sample was 27 (range 19 – 50). The mean duration of illness was 7 years (range: 6–23 years). To participate in the research, participants needed a diagnosis of AN with an illness duration of 6+ years (see Uher et al., 2003). Each participant had been assessed by various psychiatrists with considerable experience in diagnosing AN, using Diagnostic Statistical Manual of Mental Disorders–Fourth Edition (DSM-IV) (American Psychiatric Association (APA), 1994).

All of the participants were in receipt of psychological therapy (various approaches) and had received at least two different therapies over the course of their AN. All the participants had BMIs in the 14/15 range at the time of the interview, and unfortunately, no data were taken of lowest BMI (see Table 1 for full demographics). Even the participants who had been ward the shortest time (e.g. Anna) had had many prior admissions. It is noteworthy that Anna had lived with cAN for significantly longer than the other five participants, and this represented a concern about the homogeneity of the sample for an IPA analysis. However, it was decided to keep her data in the study as there were no notable differences in the qualitative data when compared to the other participants.

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Table 1.

Participant information.

Pseudonym	Age	Duration of illness	Length of current admission	Number of previous admissions	Previous outpatient treatments	Age at leaving education	Employment status	Marital status	Ethnicity	MHA
Anna	50	23	4 months	<3	<3	16 years	Unemployed	Married	White British	informal
Betty	25	7	14 months	<2	<3	18 years	Unemployed	Single	White British	informal
Carla	20	6	27 months	2	3	18 years	Unemployed	Single	White British	Sec. 3
Diana	36	7	10 months	<4	2	16 years	Employed	Married	White British	informal
Elizabeth	27	6	8 months	2	2	18 years	Employed	Single	White British	informal
Daisy	19	6	19 months	2	2	18 years	Unemployed	Single	White British	Sec. 3

MHA: Mental Health Act

Procedure

The interview was developed on the back of published work that pertains to this participant group (e.g. Tierney and Fox, 2009). Six broad questions were devised, and these asked about participants’ understanding of the development of their anorexia and their perceptions and experiences of living with AN. These questions were as follows: (1) Can you tell me about how you developed anorexia? (2) What reasons do you think that anorexia has continued to be prevalent in your life? (3) What have your experiences of treatment/therapy been like? (4) How do you think professionals view anorexia? (5) What have your relationships been like with other people with anorexia? (6) How do you see your life in the future?

Prompts and follow-up questions were used, and the interviews were recorded and transcribed. The interviews ranged from 60 to 90 minutes.

Analysis

Data were analysed using the procedures for IPA, as outlined by Smith et al. (2004). Within the transcripts, an initial list of preliminary themes was identified through line-by-line coding, with themes being grouped into associated clusters, and these were compiled for each interview. Themes were compared from all interviews, and these were then assembled into sub-themes within higher-order categories (i.e. across all the interviews). The emergence of a theme in the majority of transcripts was considered appropriate for inclusion in the list of higher-order themes (Smith et al., 1999). Member checking was undertaken at the end of each interview, as a summary was provided. None of the participants disagreed with the summaries or the coding of the transcripts.

Reflectivity

The researchers were a clinical psychologist in training and a clinical psychologist/researcher with an interest in eating disorders and AN. The clinical psychologist in training was a young White woman who had an interest in eating disorders but no specialist expertise, while the first author (J.F.) had a number of years of experience of working with AN and cAN.

Theme one – making sense of the AN

Participants described how the onset of the AN was often not realised or denied and took a long time before women admitted they were struggling with an eating disorder. This recognition seemed to be linked to the concern of others and, occasionally, that they were struggling to eat. This process of ‘making sense’ appeared to strengthen their relationship with their AN, as all the participants described how they came to realise that AN addressed difficulties in their lives that were present before onset. Common perceived causes for the AN were negative evaluations of the self in comparison to others, grief and loss and difficulties with the management and expression of emotion. The data suggested that AN was an effective way of coping with adverse feelings and experiences. Through the data, the onset of AN was described in a positive frame, with participants discussing how AN was protective (i.e. giving control), as it increased their confidence by doing something within which they felt successful (e.g. losing weight when others could not).

I think that I just wanted to prove that I had control and that I could, I don’t know: Be thinner and achieve that. Part of me had been taken away from me and I wanted something that was mine and that I could keep. (Diana)

AN was clearly valued, as it gained attention from others, as prior to developing AN Participants appeared to be lonely and disconnected from others and, by becoming unwell, others became much more focused on them and their needs, perhaps out of a sense of worry. Through this experience, participants started to develop a new identity, with AN at the heart of who they were. Although it could be argued that these factors are important in any case of AN, it seemed that this knowledge about what led them to develop AN kept them ill. It was, as if, that knowing what is needed to be addressed to help recovery was too much, and it was safer and easier to maintain their AN. It is important to note that this does not imply that they voluntarily chose to stay unwell, rather it was a product of being scared, fearful and overwhelmed. It seemed that in reality, the participants felt that they had no choice at all.

Theme two – experience of treatment/refeeding (including the use of nasal gastric tubes)

Within the EDU, one of the core treatments is the supporting of people with cAN with refeeding. As expected, this was a particularly difficult area for the participants of this study and this theme refers to the intra personal effects of starting to take increased levels of food. The interpersonal aspects of treatment will be discussed in subsequent themes. As described above, participants recognised that the onset of their AN was insidious, and they often struggled with the start of treatment, including the use of nasal gastric tubes (NGT). At one of the units used for recruitment, NGT are used when patients struggle to take nutrition via their mouth, either because of their severe eating disorder psychopathology or they have a physical complication that means NGT is the best way to refeed. Generally, the actual experience of being refed was viewed as distressing. However, there were some nuances in the data, as one participant identified feeling relieved that professionals took the control from her, as she could deny responsibility for taking nourishment. However, some participants reported that NGT feeding led to an increase in other symptoms, and this can be seen clearly in the following quote by Daisy:

I went on a tube (NGT) and it seemed a bit easier to handle like knowing they were taking control of it but then all of the OCD’s came in with checking the amounts so then I started refusing bits, like siphoning off bits, I was really like quite misbehaving like getting rid of it. (Daisy)

What was apparent was how cAN gave participants a sense of control and a method of coping. Participants who were going through the refeeding process often led to an intense feeling of losing control, and this had a profound impact on the participants. It appeared to increase feelings of vulnerability, and the refeeding process was generally perceived as being incredibly difficult and, at times, traumatic.

The experience of living with cAN was wrapped up with how interviewees perceived themselves. Where this created real tension for both clinicians and participants was around non-negotiated feeding (i.e. restraint feeding). On the unit, a small number of patients would be subjected to restraint feeding as they were unable to accept nutrition on a voluntary basis. This is very difficult for both patient and staff, and it is used only when there are no further options available to the team. However, for the participants with cAN, the experience of being restraint fed led to an entrenchment of the eating disorder. This can be seen in the following quote:

I fought as hard as I could, I did everything. It was distressing and it just made me go more into my shell and more into my illness because I felt safe with my illness. (Carla)

Theme three – interpersonal relationships

Theme four – battling with anorexia

The participants’ relationship with their AN was dynamic; it was often hated, but also valued. As discussed above, AN had played a significant role in their lives, especially in helping the participants define who they were. It gave them control, but over time, the AN took this control away from them. A similar process seemed to occur with the impact of AN on their ability to form relationships, as initially it gave the participants a sense of confidence, but over time they had started to withdraw, leaving them feeling isolated. What was interesting about this dynamic relationship between the self and the cAN was that it was often experienced as a ‘battle’ that they felt destined to lose. Participants described being ‘anorexic’ for so long that it would always be a part of their lives. They appeared to desire complete recovery, although they did not express this as a possible reality. For example,

Going to work, developing interests, going on holiday, good chats with my husband, and nights in, nights out. These would all be fantastic! I think truthfully because I’ve had it so long that I will always have an issue with things, but I just want to learn to manage it. (Diana)

Although participants engaged in this ‘battle’ with their cAN, it was still a part of their identity. This often left them feeling confused and upset about how they could want to get ‘rid’ of something that was a part of them, but this same part kept bringing them back into hospital and interrupting their lives. This led participants trying to find a ‘middle ground’ where they expressed the importance of being able to manage the disorder, while being able to live their lives. Participants mentioned that engagement in society and the development/maintenance of interpersonal relationships were construed as important in their perceived ability to manage the illness.

Theme five – staff pessimism in the treatment of cAN

In contrast to the discussion above, where some participants described how staff were supportive, the data also highlighted that staff (both within the inpatient unit and outpatient services) could be pessimistic in their recovery and often seemed overwhelmed by their stories. These negative feelings regarding their care and treatment seemed to lead to being passed between services, and this seemed to reinforce the participant’s anorexic identity due to the uncertainty of treatment and loss of control. These experiences of being passed around different services, especially non-eating-disorders services (e.g. medical wards), engendered feelings of hopelessness and a sense of being abandoned by professionals. Participants discussed how these negative approaches by certain staff exacerbated their feelings of isolation, which reinforced their wish to ‘stay with the anorexia’. Interestingly, a number of participants also discussed how living with cAN and not having access to skilled staff was tinged with feelings with sadness. These feelings seemed to be related to a sense of grief of missing out on life. This can be seen in the following quote:

… just like, I suppose that I felt like they had given up on me so I gave up on getting involved, just like I can’t be changed so what’s the point really. I feel sad now looking back and just thinking I wish I had the knowledge that comes with age and experience. (Betty)