Analysis traced these participants’ experiences of key dimensions of the MFT/FBT interventions and ways they engaged in identity negotiations within these treatment contexts, including the reclaiming of identity and voice in matters related to their treatment (see thematic map, Figure 1).
Theme 1: Therapeutic focus
Participants recounted being both supported and distressed by the focus of Phase 1 of treatment on eating and weight restoration and handing control of these over to their parents. Of the 4 participants who reported completing the three phases of MFT/FBT, 3 concurrently had treatment with an individual therapist (Abbey, Amy & Maisy) and one participant retrospectively described being “taught” strategies by psychologists and dietitians during treatment to assist her with managing distress (Phoenix). Participant narratives highlighted that although MFT/FBT was preferred to inpatient treatment for most, when the therapeutic focus was predominantly on AN symptom reduction their emotional distress was obscured and further escalated.
Subtheme 1(a): Focus on the visible
Ten participants’ narratives indicated that the early treatment focus of MFT/FBT, where their parents took responsibility for their eating, was experienced as a relief, albeit it was also a distressing experience
Pheonix: […] As much as I hated it, and as much as I just wished for it to be over, it (MFT/FBT) did save me. The first few months were extremely distressing […] Knowing that I had no control whatsoever. [Later in interview] it was sort of down to business, let's do this as quick as possible to get your life back.
Kate: It was helpful…that saved my life. 100%. Going to that first appointment, they put me on eating plan. […] I’m glad that they got someone to be my eyes in that sense because I would not be here today.
Kaylee: The whole control aspect, it was, my parents had full control which made me feel real safe.
Abbey: […] cause there was part of me that was, obviously I was fighting it but there was part of me that was like, “Oh thank god” like “I can’t get away with it. I just have to like sit and eat this”
The allocation of responsibility for their eating to their parents was experienced as life-saving for these participants. The marking out of a boundary by which they were no longer responsible for their eating cultivated for some, a sense of relief and safety (e.g. Kaylee) and the possibility of getting “your life back” from AN, despite also being “extremely distressing” (Phoenix). Furthermore, the sense that others could “be my eyes” (Kate) indicated that these participants valued not only the support but also the alternative perspectives of others in assisting them to take steps to diminish the influence of AN on their lives. This included parents being supported by treatment teams to engage in nutritional nourishment despite a divided sense of self (“part of me … fighting it”; Abbey). Identified as helpful was when their parents were experienced as a steady support, informed yet understanding, cultivating safety whilst taking control over their eating that contributed to a containment of their distress in the context of the challenging time of nutritional restoration.
Alongside MFT/FBT being a life-saving treatment that addressed the medical crisis of AN, the participants also recounted parallel experiences of distress during and post MFT/FBT irrespective of extent of their eating and weight restoration and all of them acknowledged the significance of support by others for this distress, including family members.
Theme 1(b): Focus on the invisible
Thirteen of the 14 participants argued that there was a lack of treatment focus on their experiences of psychological distress during MFT/FBT, including co-morbid psychological problems (see table 2). One participant (Maisy) reported MFT/FBT was experienced as “extremely pivotal to me getting better” and tailored to her preferences where her siblings attended only the first session. Individual therapy in addition to MFT/FBT was experienced for her as both an opportunity to “challenge my thoughts”, “learn how to self-soothe” through mindfulness techniques and a motivational intervention that worked “to convince me that recovery was a good thing”. She also highlighted the significance of seeing an individual therapist in addition to MFT/FBT who was “an outside person […] different from my parents”.
For ten of the participants who reported dropping out prematurely from MFT/FBT, an absence of focus on addressing emotional distress and interpersonal struggles was cited as a major contributor to this decision. For example;
Harley: Because they never really addressed the underlying problems, it was all so much harder than it probably should have been, because I was still battling with the thoughts and battling with the guilt and all that.
Charlotte: My mum does have issues with her eating […] just made me feel like I was doing the wrong thing as a woman and as a female.[…] my sadness and how much I was hurting would also be expressed as anger[…] a lot of the times I would find it so difficult that I would ask to sit outside [of MFT/FBT sessions]. […] They[parents] hated seeing me so sad and I hated seeing them so sad, and it was just very confronting to have to bring that all up in family therapy and then not really take it further […] Like we opened old wounds and then they never really got closed and healed.
Beth: […] […] I never really got a chance to properly, like talk out, like my anger, like with people. Like I never got to just express how I was really feeling, which is probably why I was so angry, because it was all, like building up inside, because I never got to express how I was feeling.
The inadvertent effect of prioritizing of physical safety in phase 1 of MFT/FBT meant that these participants’ psychological safety was obscured with the implicit meaning taken from what was “going on inside” (Hayley) did not matter. For Charlotte, the structure of MFT/FBT meant the “old wounds” were opened and not healed, including the parallel process of eating difficulties of women in her family being left unaddressed contributing to an identity conflict where she was left questioning herself and to feelings of “sadness”. Implicit in these participants’ experiences of anger, was their valued stance and desire for openness within their family systems. They recollected their anger being responded to by being positioned as outsiders to their own therapy, losing their voice with systemic family issues left substantively unaddressed.
Within this context, a different sort of safety issue arose with six of the 14 adolescents reporting suicidal ideation during and/or post MFT/FBT treatment.
Kate: […] I never got to the point where I could really end my life but there were feelings of just wanted to end it because it’s easier than the voices that are in your head (crying, quite upset) and then you go into these sessions and they’re supposed to be sessions where you can let yourself speak your mind and you get time with the psychologist and it’s almost like, you just need to sit there and be quiet while everyone talks around you. They’re talking about you too (emotional).
Beth: I think I didn’t, like make it clear how, like depressed I was, and like the feelings of, like wanting to just end it all really. And I would never dare to say that in front of my mum, so I never did. And that’s, like kind of one of the things I was struggling with and struggled with it for a long time. And I thought I just never spoke up about it.
Harley (further quote from member checking): […] Still to this day because of Maudsley if there’s a situation where I feel like there are links or similarities with control related or people talking at or about me like they did in Maudsley, my suicidal ideations are triggered. The focus on the impact of my family – which was a big aspect of Maudsley - as a result of the anorexia contributed to feelings of being a burden and secondarily, at times I wanted to kill myself because the FBT highlighted the damage I was doing to everyone around me.
These participants argued that nutritional and weight restoration alone did not reduce their psychological distress; distress that continued largely unaddressed for them during the MFT/FBT intervention. Kate recollected experiences of a loss of voice where she was recruited into need(ing) “to sit there and be quiet”; Beth actively hid her distress, particularly from her mother; and Harley (when member checking the analysis) emphasized the lasting impression of treatment where being talked “at” or “about” continued to trigger “suicidal ideations” with continued identity associations of herself as a “burden” on others. These participants were active in their arguments that AN treatments need a greater focus on enabling the voicing, holding and processing of their and their family members’ emotional distress.
Parallel to the adolescent’s distress was family distress and conflict that was also experienced in the context of parents taking responsibility for their eating and weight restoration.
Rachel:. It [meals] just ended up being hard, plates smashed, tables turned, me punching, kicking and screaming, […] and then at the end of the time and it’d be like four hours later and we’d both be exhausted; no food would’ve been eaten.
Kaylee: […] I didn't know who to listen to or who to follow (my parents or my urges) and so those were the destructive ways I dealt with them. For my parents, they wouldn't have known why I was acting out either, as I couldn't verbalise what was happening internally. So they responded to my outburst with screaming and anger and physical restraint towards me because I assume in their eyes, I was just being difficult about eating. Their reaction made the stress in my head even worse and made me even more suicidal, but I don't blame them for how they responded.
Increased conflict in the family was evident in the participant narratives, with examples cited including angry outbursts with four participants disclosing anger that was physically expressed through parental restraint such as being held down or against a wall. Kaylee clarified that she was not blaming her parents for their responses at the time, that included physical restraint, however, she also recounted how these responses contributed to further distress, including suicidal ideation. These participant experiences highlighted a question asked in earlier research – do “the ends justify the means? […] Is there a way to facilitate weight restoration without causing psychological damage to the adolescent and their family members?” (16).
On the other hand, the participants talked about the importance of MFT/FBT in ameliorating a sense of being alone and when therapists were experienced as advocating for them, with four participants talking specifically about the importance of the treatment contributing to the sense of feeling less “alone” in addressing AN.
Amy: […] in comparison to me going alone to therapy, my parents are actually getting an insight of where I’m at, […] the therapist, just to bounce off what I’ve said, from her conclusion, and what she feels is okay and what’s not okay, and um just I guess, in my best interests, what I should be doing, for her then to talk to my parents about it. Like that was – that was good.
Beth: […] it definitely did teach my family them some things, and it definitely educated them on what would be helpful for me and what wouldn’t be helpful. And I think it was nice not to feel alone; it was nice to have my family there. So, it wasn’t just, like by myself.
Charlotte: […] it taught them a lot about the tricks and the way that I was managing my eating disorder and keeping up with hiding food and water loading and making sure that I’d gained such and such amount of weight before the next appointment, […] and how it manifested itself in different ways, and different habits, and so then they were then able to become a lot more on top of it.
These extracts exemplify key components the therapeutic relationship that included advocacy, scaffolding insight into self and by others (Amy) and ameliorating a sense of being alone in treatment through engagement with families in the intervention (Beth), including in standing against AN together (Charlotte).
Theme 2: Identity Negotiations
Alongside the participants’ treatment experiences were their parallel identity negotiations that were shaped by their experiences of personal agency and voice throughout treatment and their engagement in the MFT/FBT practice of externalisation of the illness (theme 2a). Furthermore, the implicit meanings ascribed to their parents’ support was that their life was worth living (theme 2b)
Theme 2(a): Negotiating personal agency and voice
All the participants at some point in their narratives talked about struggles to negotiate personal agency and voice in their treatment, particularly in the first phase of MFT/FBT where their parents were allocated responsibility for their eating restoration.
Phoenix: Because at stage one I definitely felt like a monkey in a cage and I had no control. My parents were doing everything for me.
Kate: […] I felt tiny. I felt like everyone was overpowering to me and it was, I would just shut up and shut down. […] I just didn’t feel like a person. […] You feel like you’re getting treated like just someone who’s sick…it’s not the way you want to be seen.
These extracts exemplify the identity negotiations of participants as they ascribed meaning to their parents being asked to take responsibility for their eating in the first phase of MFT/FBT. Phoenix’s use of the metaphor of a “monkey in a cage” depicted her experiences of a loss of personal agency, being monitored and unable to escape. The participants ascribed a number of negative identity conclusions in the context of their parents taking responsibility for their eating – for example for Kate this reinforced the identity of herself as a “sick” person that did not fit with who she understood herself to be.
Furthermore, parent’s taking responsibility for their eating had real effects on some of the participant’s relationships with their parents that had unintended impacts on their sense of themselves as a daughter.
Lydia: […] it [treatment] really fractured our relationship […] at that point, there was such a high level of conflict all the time, mutual distrust. […] , I think I lost my sense of that [self as person and daughter] and it’s almost as though I regressed and I was um, I was acting how I was being treated.
Harley (member checking): Maudsley and FBT ruined a previously strong relationship and caused my parents and siblings their own psychological unease and detriment. This contributed to a loss of myself and my identity and resulted in further destructive behaviours.
A loss of voice was recounted by eight participants in the context of externalisation of the illness where they too experienced themselves as externalised with the AN.
Nora: […] just the fact that you had an eating disorder meant they were dismissive of anything you say, they believed anything you say was completely motivated by the eating disorder […] I was very distressed by that because I thought I’m still me, I’m still here, I can recognise that I have anxiety and unhelpful thoughts but I can still communicate as a person. […] I’m still me.
Lydia: I think to a certain degree, the treatment team had drilled into them [parents] that um I was not a person, I was an eating disorder and giving the reins to an eating disorder.
Charlotte: I was just infuriated that, you know, I’m trying to say something or have a conversation with my mum, and she’s referring to like anorexia and not Charlotte, telling Charlotte to come back whenever. Um, and I was like, “No, listen, like listen to me. I’m trying to tell you something” - that was very difficult - I’ve never really used that separation terminology until probably now, […] my eating disorder was me, […] That was my talent, that was what I was good at, that’s what I excelled in because I’d lost a lot of my identity, so I felt that that was my identity. So when - when people would refer to not say that they were talking to Charlotte I’d be like, “Are you kidding me?” But now I can see that that’s different and I can see the difference.
These extracts exemplify the potential effects of the MFT/FBT practice of externalisation of the illness that led to the person’s voice being assumed by others to be the AN/ED. This misappropriation of the person’s sense of self (“I’m still me”; Nora) to the disorder by others (“I was an eating disorder”; Lydia) contributed further to a loss of voice and exacerbation of distress. Charlotte highlighted the problem of externalization when built on the assumption that it is possible to achieve “separation” of the person from the ED when their identity is invested in the egosyntonic dimensions of the experience (“I felt that was my identity”). These extracts highlight the unintended consequences and struggles when the practice of externalization of the illness aimed to completely separate AN from the person and neglected to take into consideration the identity investments into the egosyntonicity of AN.
On the other hand, five of the participants found the process by which their therapists engaged them to externalize AN/ED to connect with a sense of identity outside the AN.
Phoenix: […] as I was restoring weight and as I was getting better and given more privileges and so on that I got to really find out who I was. […] they made us draw a Venn diagram with two circles. And they named one side “Phoenix” and one side anorexia and then throughout treatment they would make me draw where I thought the circles were overlapping and there was definitely a correlation between the distance of those circles and the amount of weight I restored. As I got healthier, the circles grew further apart and anorexia was separated from me
Rachel: They just called it, “the eating disorder.” […] And they’d be like, “What would your eating disorder say to this? Now sit in this chair and it’d be like, what would you say to this?” […] that was helpful, but they just didn’t do it enough. Like, it was just so much about food but they needed to care about my feelings.
Kate: […] the other good thing about the Maudsley method was, they did really try and separate the person from the eating disorder. So you weren’t ever talking about, like, you could tell when someone was talking through the voice of the eating disorder or talking through their own voice. That’s what they tried to really distinguish.
Abbey: The anorexia. This is me genuinely saying something to you. Um, and also just for my own identity, um, and seeing the shift and the balance go. Like my identity increase and that decrease um, that was, that was really helpful. But mainly it was expressing my opinion to others that it was most, most helpful.
Emerging across these participant narratives was their preference for a person-centred approach where the practice of externalization was focused on the person’s identity outside of the AN rather than primarily on elimination of the AN. Phoenix recounted a process of “finding out who I was” through the process of being given “privileges” as she gained weight and tracing her shifting relationship with AN as both individual and overlapping entities. Rachel was invited through a chair technique to have a dialogue with AN to enable her to reclaim her voice and preferences from AN; she argued that her preference was to do more of this work that indicated care for her feelings than being centred on eating. Kate outlined how therapy sought to enable her to distinguish between the voice of the ED and her own voice and Abbey talked about how externalization enabled her to reclaim both her voice and identity outside of the AN identity.
Theme 2(b) Life is worth saving – “No one was ever going to give up on me”
Interwoven in participant narratives a process of ascribing meaning to their parent’s commitment to their recovery.
Hayley: I think I don’t want to forget um, (pause), ah how much care I have seen shine through people in this, like my parents have been supportive the whole time and shows how great they are.
Phoenix: My parents are really good with supporting me. They keep reassuring me that it's okay. Like, if I'm struggling, they'll be really understanding and they won't force me to do anything that I don't want to do. But they will – they will encourage me.
Kate: […] even though I was really angry and did not want to eat anything, mum would still just sit me down and wait
Jessica: […] your parents do try to – they try their best to like understand what you’re going through but it’s difficult for them to do that.
Maisy: […] how hard it must have been for my parents and how - what a good job they did to persevere and get me to where I am today.
The participants ascribed a range of meanings to their parents’ support during their treatment, including taking responsibility for their eating in the early phases of MFT/FBT. Recollections ranged from parent’s support and reassurance (Phoenix) and their capacity to be with them when emotionally distressed (Kate). Reflecting back, Jessica connected with her parents’ efforts to “understand” her experience of AN and Maisy with her parents’ perseverance to “get me where I am today”. Furthermore, three participants (Kate, Maisy & Abbey) specifically remembered their parents taking up this role in treatment to avoid them requiring inpatient treatment. These participant experiences highlight the importance of parental support in AN treatments.
For participants who discontinued MFT/FBT in the earlier phases, parental support was also noted in their parents’ active collaboration with them to find alternative AN treatments that met their needs and preferences, including treatments that focused on addressing their psychological distress.
Lydia: I had some serious conversations with my parents and I think that I began to sort of get through to them and I think they to some extent also realised that this really wasn’t working, and I needed a different sort of treatment, a different sort of support than what I was receiving.
Nora: […] I would say that our relationship [with her mother] now is better than ever and we are able to reflect on the experience and how traumatic it was and how much we both believe the more sick I am is quite harmful to our family and how great it was when we did get individual psychologists.
Implicit in both these extracts was the significance of these participants being validated in their treatment needs and preferences and specifically for Nora in “how traumatic” AN and its treatment with MFT/FBT and hospitalisations were for her and her family. Furthermore, all the participants talked about the significance of their parents standing for them as a person in the face of AN and its treatment.
Maisy: […] my parents […] were always there telling me that I would get through this and that I was a strong person and - and that no one was ever going to give up on me.
Kate: Oh, she’s [Mum] just awesome! Like, she is always advocating for my best interest.
Charlotte: I don’t want to forget that even though, ah, it was very, very traumatising for me, um, that I still have my family and they still stand by me and I stand by them, and even though we went through such a terrible and awful time, um, we still love each other and have each other’s backs during the worst and best periods of our lives. That’s what I - what I wouldn’t want to forget”.
Amy: Accept the changes that are necessary because ultimately, at the end of the day, people just care about you and they care so much about you that they're going to put you through this. And it's going to be hard, it's going to be really hard, but as soon as you come out the other side and start living your life again and being healthy, the thoughts go away.
These narratives highlight the significance of the parents standing for these individuals in cultivating a sense of teamwork (Abbey), care (Amy, Phoenix), and that they were not alone (Beth, Jessica). Implicit in all the adolescent narratives was that their parents’ commitment to them and their treatment was hope for their futures and the sense that their lives were worth saving – for example, as depicted by Maisy - “no one was going to give up on me”.