Table 4 Quotations from participants in primary studies illustrating each theme
Theme | Sub theme | Quotes from studies |
|---|---|---|
1. Understanding the child and the disease | Initial reaction to diagnosis | “Oh my God, she is really ill” [28] “I was appalled by her skin and bones appearance” [20] “The initial diagnosis came out of the blue” [31] “…I suppose really would be the initial stage of shock, we found it very hard” “… it’s the worst thing ever and its happening under your nose…” [27] “I thought it was for attention. I thought it was a phase. I had no idea how serious.” [43] |
Guilt/self-blame | “I didn’t see the beginning of anorexia for a while” [29] “I felt I should have picked up on it earlier” [23] “I felt this happened to other people that weren’t as good parents as we were” [45] “I should have been more watchful” “did we not pay enough attention?” [33] “I was really busy going to university and as well as work…when I realised that she wasn’t eating that was just a shock; I just felt guilt” [42] “I wonder, did I do anything wrong? Did I show that [pause] well I probably showed that I didn’t like my body” [44] | |
Helplessness | “We’d failed as parents” [33] “I felt helpless” [45] “…I kind of think that nothing I do helps really” [26] “I was…often crying a lot..” [28] “…she needs help in a way that she doesn’t know she needs…There is no meaning” [43] “There was nothing we could do after trying 10 different types of treatments” [36] “A mother’s heart bleeds when I see how she treats her sister, but what can I do?” [40] | |
Loneliness and stigma | “It was just me and her…” [26] “It is lonely… friends were frightened to come…” [28] “..we’d go out for meals with people.. that’s stopped because.. she found it difficult” [23] “If he had cancer or a surgery, my friends would have called” [43] “My brother, I have the intention to talk to him about it during the holidays, but he doesn’t know about it yet” [44] | |
2. Experience of services and treatment modalities | Help seeking | “… the initial contact with the GP is not great…” “They need to understand it’s not just about the weight…” [31] “If I were to express any misgivings, it will be about the time it took to get a referral from her GP to CAMHS…” [30] “I went to her doctor who was an old doctor…..and…. he just totally dismissed her” [27] “He said that I was making too much fuss and you know she was a teenager and she was fine…” [28] “…well you can’t be anorexic because you’re actually eating” [21] “I’m still cross that the GP hadn’t confirmed it early on…” [23] |
Experience of treatment modalities: Positive experiences | On FBT: “We were a joint force” “It developed an openness that hadn’t been there before” “…as a family we’ve grown a lot closer…” [45] “I think it has been good for both fathers and mothers…” [29] “…I think the kids found it quite useful because they could say what they’d been bottling up for a long time…” [21] “…we can discuss those unhappy things. I feel good about it” [25] “Some things you can only talk about with others who experienced it” [31] “Attending the parenting courses was very helpful…” (Nilsen 2021) On home therapy: “I felt energised…” [26] On MFT: “…if it came from my child, I would not have understood. I understood better through the words of another young person” [34] “…seeing…[what] people had triumphed over or their views being slightly different was quite…interesting and helpful” [35] | |
Experience of treatment modalities: Negative experiences | On FBT: “The focus seems to be all on the food aspect” [21] “Really what you need is someone who sees the whole person…” [30] “…they didn’t appear to be doing very much or to be talking about the whys and wherefores” [24] “When things aren’t going well, you kind of blame yourself” [33] “When we were on our own… we could have been more honest” [21] “I really don’t know where you could find family therapists that specialize in treating anorexia in Hong Kong…such kind of support is totally unavailable” [36] On in-patient treatment: “there was a lot of moping around….” [21] “How thin must one become to receive treatment? Actually, she lost weight just to meet their BMI criteria” [40] | |
Compulsory treatment/control | “…I think if their life is at risk… someone has to make the decision…” [22] “…She isn’t strong enough to make a decision about her” [21] “If you give treatment in early stages… you are prolonging the time they can get well” [21] “I think if someone is going to starve themselves to the point where they are dying… you must be allowed to die quietly, kindly” [22] “I think probably it was good for her to know that somebody else was in control…” [23] “…you don’t have much choice, because in any case you don’t know what to do any more.” [37] | |
3. The role of professionals | Helpful attributes: availability | “She (paediatrician) was there at our beck and call….. she said, ‘I’ll do whatever you need” [21] |
Support | “…. He (psychiatrist) just kind of saved us in a way” [21] “…the key to her improvement…she trusted her therapist completely…” [26] | |
Sensitivity and competence | “She (therapist) would calm us down…” [31] “When things were really bad (the professional)… was wonderful” [23] | |
Unhelpful attributes: lack of feedback and poor communication | “…something would happen and I’d think, how do I approach it?…” [21] “…there wasn’t any other feedback other than ‘oh well that’s difficult’…” [24] “…in hospital no one spoke to us…” [24] “…they had never told me that they had a treatment plan…” [36] | |
Poor communication between professionals | “…sometimes nurses don’t know about a decision the consultant had made…” [21] “If I try to consult all types of healthcare professionals…I would have to explain everything from beginning when I meet each of them…what they said…were inconsistent” [36] | |
Rigidity among professionals | “She (therapist) had a framework she wanted to fit us in…” [21] | |
Being undermined | “…my husband and I found the psychiatrist condescending…” [24] “…we were scolded by the psychiatrist…He thought that we didn’t care about our daughter” [36] | |
Negative attitudes | “I do feel that many clinicians (not necessarily ED specialists) believe that parents cause eating disorders” [30] “I felt very judged… at a time in my life when the core thing I needed was support” [31] “Even treatment professionals question whether I caused this disorder” [43] | |
Limited knowledge | “…nutritionists were quite unfamiliar with the disease…They only asked her to eat because she looked skinny” [36] “I [still] couldn’t get any local, knowledgeable, experienced care for my son…I think that our medical community could use real serious [education]” [43] | |
4. The experience of recovery | Changes in the adolescent | “…she talked about wanting to get a job…” [29] “She has matured …and now wants to get better” [27] “…She is more flexible and open about changes and new activities” [39] “She’s been very relaxed over the past week… whereas she wasn’t at all before, she was self-centred” [38] |
Uncertainty about the future | “It’s all unknown” “I hope she’s ok”[21] “What on earth is going to happen next with this..?”[24] “…..not knowing that is the hardest of it…”[33] “Like if he goes out in the worl, will he be prepared? Will he be able to handle himself? We keep thinking, ‘Is he going to grow out of it?’” [43] “I thought the transition was a bit sudden, you know, with her coming home and having to return to school and then having to cope with everything.” [38] | |
Experience of relapse | “…deteriorating before our eyes…” “I find it quite depressing…” [21] “…taking one step forward and then three back…” [32] “… to accept relapses was difficult. To accept that it didn’t go according to the pace I had hoped…” [44] |