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Table 2 Quotations supporting sub-theme components across personal, family and social levels

From: A qualitative study on the multi-level process of resilience development for adults recovering from eating disorders

Theme/ sub-theme

Level

Quotation

Stage 1: ‘Who am I without my ED’

Theme 1: ED dependency

1a. ED is a source of coping

Personal

“I think with certain people’s resilience- for example, with my resilience, my coping mechanism or my activity for resilience was to binge and purge. And so that was my resilience against other things”, Client 6, female, aged 21–30.

1b. ED takes over

Personal

“I kind of see it as, it was taking over, you know, more than I would have liked it to have done”, Client 7, female, aged 18–20

1c. Secrecy, denial and avoidance

Personal

“I went through a period then of like purging. And a bit of bulimia probably. All secret and I didn’t really see it as a problem myself then”, Client 2, female, aged 18–20.

Family

“And then sometimes the parents just are a little bit in denial or guilty and all kinds of feelings about it”, Clinician 10, female, aged 41–50.

Theme 2: Other ways to cope

2a. Other skills

Personal

“For me it was recognising just setting small goals. Focusing on this day. And the plan for the week. You can get an idea of where you want to be but don’t focus on it. Don’t focus on that huge road. Just focus on this step”, Client 15, female, aged 21–30.

2b. Learning from the past

Personal

“But the week I came back, for that really bad week, I’m actually really grateful for it. ‘Cause I actually learned so much from it”, Client 15, female, aged 21–30.

Theme 3: The question of letting go

3a. Fear of making change

Personal

“And I think maybe my anorexia was subconsciously saying to me Well look, you’re never going to be able to succeed anyway. So let’s just totally fail”, Client 4, female, aged 51–60.

3b. Introspection

Personal

“So it’s being more understanding of it and not OKing it but not beating yourself up over it either. ‘Cause it’s a mental thing”, Client 15, female, aged 21–30.

Social

“I also think that counselling really helps understand. Just with the internal understanding of why my coping mechanism was necessary and why I picked it up and why I don’t need it anymore.”, Client 6, female, aged 21–30.

3c. Motivation and readiness for change

Personal

“Wanting to be there for themselves is a big factor. Because unless they want it for themselves- you can’t want recovery for somebody else. It doesn’t work that way”, Clinician 11, female, aged 31–40.

Stage 2: ‘My ED does not define me’

Theme 4: Seeing the bigger picture regarding EDs

4a. Knowledge and understanding about EDs

Personal/

Social

“Like that feeling misunderstood thing is huge. Now that I understand myself more, but feeling like that “I don’t understand myself, no one else understands me”. Whereas I feel like I’m working with [professionals] who really do”, Client 15, female, aged 21–30.

Family

“So I guess going against the resilience is a lack of understanding as to what’s happening. The thoughts within the family, that why is the person doing this to us and doing it to themselves?. As opposed to seeing it like a separate kind of entity. You know, that this is an illness and it’s separate from the individual. The individual is still who they always were. Just the illness has taken over”, Clinician 4, female, aged 31–40.

4b. EDs involve more than eating behaviours and weight

Personal

“It’s not just changing your ED, it’s changing everything that comes with it. Because an ED is your mindset, you know what I mean”, Client 15, female, aged 21–30.

Family

“So families I think sometimes can be... a little short sighted, in the sense of making it all about the problem behaviour as opposed to what else is going on beyond it”, Clinician 8, male, aged 51–60.

Social

“I was trying to access HSE funding for inpatient treatment. And the psychiatrist he rang and he said to me on the phone, he goes Oh your BMI is a lot higher than I thought it would be. And I was like Are you actually saying this? You should know better”, Client 12, female, aged 21–30.

4c. The difficult road ahead

Personal

“I thought it was a quick fix. I was only gonna be here for a couple of months to a year and then I’d be out the door and no one was ever gonna see me again. I realised that this was more of a lifetime thing than a quick fix”, Client 8, female, aged 21–30.

Family

“Families I think look for the quick fix. The person themselves, generally by the time they come to us, would have been struggling with it for quite some time”, Clinician 3, female, aged 31–40.

Social

“People need to know in dealing with an ED that it’s not a straight line road. And recovery takes a long time. And I know that I’ll never be ‘recovered’. ‘Cause you’re never gonna recover from something like this. ‘Cause there’s always gonna be a trigger at some point in your life”, Client 13, female, aged 21–30.

4d. Managing emotions

Personal

“If they have easier ways to handle their distress, if they’ve learned personal ways to manage distress but also learned how to verbalise their distress, identify their emotions, that kind of thing, I think that would be of huge benefit in terms of developing personal resilience. Now, it’s not going to stop the development of EDs, but I do think it may improve the bounce back ability”, Clinician 8, male, aged 51–60.

Family

“And I find now if I come to [mother] and I’m struggling, she won’t get involved but she’ll step back and be like Ok, well what do you know that works for you that’ll help this. I find our relationship is actually so much better now. So I think she is quite helpful”, Client 1, female, aged 21–30.

Social

“‘Cause quite often an ED presents, it engenders a lot of anxiety in the patient, the family and the clinicians. So what seems to help resilience from a clinical point of view is having an understanding of the disorder, not feeling anxious about meeting people and having a set of tools that you can use to help the engagement with the client and to settle things down as quickly as possible”, Clinician 5, male, aged 51–60.

Theme 5: Safety and security

5a. Secure base and positive relationships

Personal

“But like having someone there, [Name], who just wants the best for me and I know loves me, is a massive thing”, Client 15, female, aged 21–30.

Family

“At the start I remember when they were trying to make me eat, like I’d have temper tantrums and scream things at them. But they didn’t scream back, they just sat there and tried to say the right thing. Like they didn’t leave me or give up on me. That helped as well I think, just they didn’t go away. Which was what my ED told me they would do”, Client 2, female, aged 18–20.

Social

“[Partner] never judges. He’s never mentioned whether you’re overweight, underweight”, Client 11, female, aged 41–50.

5b. Communication and honesty

Personal

“And I’d be honest with her about my ED. Another thing I learned is, even with my dad and my brother, I try not lie. You’re hiding that behaviour, it’s a secret, try and be more honest. You have to stop lifting this little friend. You more have to push it out in to the world, take it out of the closet, you know”, Client 15, female, aged 21–30.

Family

“Even with adults, when the family is maybe not their family home - as in they’ve moved out and they’re living by themselves independently- there still is this need for connect within the families. And I would see that the most resilient people are the people who can go to their families and connect with them at some level”, Clinician 4, female, aged 31–40.

Social

“But every time there’s a problem I just come to [staff] like This is what’s going through my head. What do I do?”, Client 5, female, aged 18–20.

5c. Balancing autonomy and support

Personal

“But I needed to cut the cord. I needed to become more independent. ‘Cause I think with the ED especially- well I think with the mental health- you become too dependent on others”, Client 15, female, aged 21–30.

Family

“So it’s very difficult for them because the ED acts in a child-like way at times. By not taking responsibility for eating, by not taking responsibility for various other things in their life- financial, whatever. So the mother and father do step in to that parental role even though they’re an adult. So you’re trying to get them to step back, give the person more autonomy. Yet at the same time be there to support them when they’re having their difficulties. So it’s how do they sit through that, not ignore it but at the same time not patronise them and take control. There’s a real balance there they really have to find”, Clinician 13, female, aged 31–40.

Social

“So it’s having that ability to know when we should help and when to stand back is quite important as well”, Clinician 5, male, aged 51–60.

Theme 6: Watching out for potential knocks along the way

6a. General life stress

Personal

“And then I failed an exam and then I failed it again and then it just- I think the best way I could describe it was it was like my life just went upside down. Yeah, I wasn’t sure what to do with it. And then at that point the weight just kind of went pssshh (crashing sound). Like it just fell off me”, Client 12, female, aged 21–30.

Family

“My dad had lost his job the year before. So he was at home and my mum, who always worked part time - she’s a nurse - started working full time. So I started taking on a lot of the cooking and all that kind of stuff”, Client 2, female, aged 18–20.

Social

“I think the other blocks are maybe stuff that’s going on outside of the therapy room that is overwhelming the person, that we have no control over. Personal circumstances you know. They can’t get out of the home they’re in, they can’t get out the - current life situation”, Clinician 6, male, aged 41–50.

6b. Judgmental environment

Personal

“And then I’m very anxious about studying and always have been quite perfectionistic. I was playing a lot of sport. Hockey and camogie. So I was training at least once a day”, Client 2, female, aged 18–20.

Family

“It was a very academic orientated household and a very stress orientated household, very ‘worky’. So it was less relaxing and stuff like that. Yeah, it’s an interesting dynamic, it’s very tense going back now”, Client 6, female, aged 21–30.

Social

“Sometimes I’ll find girls that come in, they’ll have a number of friends who also have EDs within their group and there is a competitiveness when you reach a certain stage”, Clinician 9, male, aged 41–50.

6c. Food and body image emphasis

Personal

“I kind of blame myself for every situation and I blame my weight for every problem”, Client 10, female, aged 21–30.

Family

“And then I find an awful lot of daughters who start exercising with their dads. This is a big thing. Going running with their dads and then like, a kind of competitive type thing going on around exercise”, Clinician 9, male, aged 41–50.

Social

“Social media I think. And a big one that comes up, maybe more with the chronic patients is say [TV programme about weight loss]. Like all the obesity talk. For them, they hear that and that’s all they hear. And they have the fear of you know, if they did anything different they’re just going to gain and gain and gain weight. So I suppose when they’re hearing all these messages, that it can be really difficult”, Clinician 14, female, aged 31–40.

Stage 3: I no longer need my ED

Theme 7: ‘The resilient me’

7a. Routine and normality

Personal

“The whole resilience thing. ‘Cause I think it is huge. With mental health, when you’re down, you can feel so alien to other people as well, that normality is not something that can be for you.” Client 2, female, aged 18–20.

Social

“So you can say Well you’ve college and we know you have a break at this time and we know you’ve lectures. So let’s organise your diet plan around that”, Clinician 13, female, aged 31–40.

7b. Positive mindset and future outlook

Personal

“So paradoxically, this idea of mindset can work for you, if you’re working for recovery, but it can work against you, if you’re focused enough. No I can work harder and I can survive. I’ll be the one that beats the odds. I’ll be the one that manages to be eternally, infinitely thin”, Clinician 6, male, aged 41–50.