Overview of studies
Table 3 presents details of the included studies. Sample sizes ranged from n = 1 to n = 98. Five studies focussed on the experience of FBT/SyFT for AN from the perspectives of young people; four focussed on the perspectives of young people and parents; two focussed on the perspectives of young people, parents and siblings; and four focussed on parents’ perspectives alone. Data was collected from 137 young people (129 females and eight males), 189 parents and 12 siblings.
The patient age range was 11 to 23 at time of treatment, and 12 to 27 at time of data collection. The majority of patients were female (n = 187), eleven were male. Parent gender was discernible in twelve out of thirteen studies: 92 were mothers and 69 were fathers. Ethnicity was rarely reported. The studies were conducted in Hong Kong, China, Australia, New Zealand, Norway, United Kingdom, United States of America, Sweden and Scotland. Nine studies collected data from participants who engaged in outpatient FBT. Two collected data from participants who engaged in inpatient FBT. Two collected data from participants who engaged in outpatient SyFT. One collected data from participants who engaged in either outpatient FBT or SyFT.
Table 3 Characteristics of studies included in the meta-synthesis
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Reference
|
|
Title
|
Aim
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Therapeutic Approach
|
Sampling
|
Participants
|
Country
|
Data Collection
|
Analysis
|
|
Description
|
Ethnicity
|
|
|
|
Chan and Joyce [49]
|
|
A Feminist Family Therapy Research Study: Giving a Voice to a Girl Suffering from AN
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Explore a patient's experience of treatment by inviting her to review her family sessions.
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SyFT; outpatient
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Convenience; the participant was recruited within an ED service where the author worked as the family's family therapist.
|
One female YP, their two siblings, mother and father. The patient was aged 21 at treatment and data collection.
|
Chinese
|
Hong Kong
|
Video playback and interviews
|
Case study analysis
|
Conti et al. [30]
|
|
‘Somebody Else's Roadmap’: Lived Experience of Maudsley and FBT for Adolescent AN
|
Explore an experience of FBT by one family; how they negotiated their identities, roles, and alliances in a protracted phase 1.
|
Manualised FBT; outpatient
|
Purposive; the family responded to an advertisement distributed through HCP networks.
|
One female YP, their mother, father and male sibling who engaged in FBT for three years. The patient was aged 14 at time of data collection.
|
NS
|
Australia
|
Interviews
|
Critical discursive analysis
|
Conti et al. [31]
|
|
“I’m still here, but no one hears you”: a qualitative study of young women’s experiences of persistent distress post FBT for adolescent AN
|
Explore the experiences and identity struggles of adolescents who (1) drop out of FBT and/or (2) continue with substantive psychological distress post-treatment.
|
Manualised FBT; outpatient
|
Purposive; participants responded to advertisements on facebook or via clinicians after completing treatment.
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14 female YP who engaged in FBT on average four years prior to participation for three to 24 months. Patients were aged 11 - 18 at treatment and 14 - 27 at data collection.
|
NS
|
Australia, New Zealand and UK
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Interviews
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Inductive thematic analysis
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Krautter and Lock [50]
|
|
Is manualized family-based treatment for adolescent AN acceptable to patients? Patient satisfaction at the end of treatment
|
Assess the perspectives of families who completed treatment using manual-driven FBT for AN.
|
Manualised FBT; outpatient
|
Convenience; participants were invited to complete a treatment effectiveness survey at the end of treatment in an ED clinic.
|
34 families including 35 mothers, 31 fathers and 34 YP (32 female, two male). Treatment completion was defined as attending 80% of an average of 14 sessions over six to 12 months. Patients were aged 12 - 18 at data collection.
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European American (n = 27), Asian (n = 3) Hispanic (n = 2), American Indian (n = 1), ‘Other’ (n = 1).
|
Northern California
|
Open ended survey
|
Phenomenological type content analysis and structural synthesis
|
van Langenberg, Duncan and Allen [51]
|
|
"They don't really get heard": A qualitative study of sibling involvement across two forms of FBT for adolescent AN.
|
Explore families’ experience of sibling involvement in FBT from the perspective of siblings, patients and parents.
|
Manualised FBT; outpatient.
|
Convenience; families attending a program within a specialist ED service were eligible to participate if the adolescent had at least one sibling and had completed FBT two to nine months prior.
|
12 siblings (10 female, one male) aged 10 to 18, 14 parents (one father, 12 mothers) and seven female patients aged 13 - 17 at data collection.
|
NS
|
Australia
|
Interviews
|
Thematic analysis
|
Lindstedt, Neander, Kjellin and Gustafsson [52]
|
|
Being me and being us - adolescents’ experiences of treatment for EDs
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Investigate how YP with AN experience outpatient treatment for EDs, involving family and individual based interventions.
|
Manualised FBT; inpatient
|
Convenience; participants were recruited in collaboration with four ED units.
|
15 YP (14 female, one male) were treated for AN or EDNOS restrictive over one to two years. Three received FBT, 12 engaged in a blend of FBT and individual sessions. Patients were aged 13 – 19 at treatment.
|
NS
|
Sweden
|
Interviews
|
Hermeneutic phenomenological approach
|
Joyce [53]
|
|
Patients’ perspective on family therapy for AN: A qualitative onquiry in a chinese context
|
Assess the perceived treatment effectiveness of family therapy from the perspective of families who have completed treatment.
|
SyFT; outpatient
|
Convenience; participants were recruited within an ED service within which the author worked as the families’ family therapist.
|
24 female YP and their parents treated over two and a half years. Patients were aged 14 - 23 at treatment.
|
Chinese
|
Hong Kong
|
Interviews
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Content analysis
|
McMahon, Stoddart and Harris [54]
|
|
Rescripting—A grounded theory study of the contribution that fathers make to FBT when a young person has AN
|
Present a grounded theory of the contribution that fathers make to FBT when a young person has AN.
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Manualised FBT; outpatient
|
Convenience; participants were recruited from eight CAMH services through HCPs delivering FBT.
|
15 fathers to a YP with AN (two male, 13 female) who had engaged in FBT. Patients were aged 11 - 17 at treatment.
|
NS
|
Scotland
|
Interviews
|
Classic grounded theory
|
Medway et al. [55]
|
|
Adolescent development in FBT for AN: Patients’ and parents’ narratives
|
Explore the perspectives of young people and their parents regarding the developmental impact of AN, and the role of FBT in addressing developmental challenges.
|
Manualised FBT; outpatient
|
Convenience; participants were identified from records of families who had received outpatient FBT at an ED service and had completed an adequate number of sessions of phases two and three and were weight restored.
|
12 young people (11 female, one male) who ceased FBT a minimum one year prior, and one of their parents (n = 12; 10 mothers, two fathers). Patients were aged 12 - 16 at onset and 16 - 24 at data collection.
|
NS
|
Australia
|
Interviews
|
Narrative inquiry method
|
Nilsen, Hage, Rø, Halvorsen and Oddli [56]
|
|
External support and personal agency - young persons' reports on recovery after family-based inpatient treatment for AN: a qualitative descriptive study
|
Investigate the reflections of young persons with a lived experience of AN, and what factors they consider important for the recovery process.
|
Inpatient FBT; “The treatment offered did not strictly adhere to manualised outpatient FBT”
|
Convenience; former inpatients were invited to participate following completion of family based inpatient treatment at an ED unit.
|
33 females and four males who were offered two FBT sessions per week during their admission. The average time from discharge to data collection was four and a half years. Patients were aged 12 - 19.5 at admission and 15.8 - 25.3 at data collection.
|
NS
|
Norway
|
Interviews
|
Thematic analysis
|
Socholotiuk and Young [57]
|
|
Weight restoration in adolescent anorexia: parents’ goal-directed processes
|
Describe how parents participated in the weight restoration of their adolescent while engaged in FBT for AN.
|
FBT; outpatient
|
Purposive; participants responded to advertisements at local child/youth mental health centres or online. Adolescents could be in the early, middle, or late stages of weight restoration.
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Three mothers and one mother-father dyad who were actively engaged in FBT. Patients were aged 13 - 16 at treatment.
|
Caucasian (n = 4), indigenous (n = 1) Parents were born in Canada (n = 3) and Western European countries (n = 2).
|
Canada
|
Video playback and systematic analysis of video recorded conversations.
|
Qualitative action project
|
Wallis et al. [22]
|
|
Relational containment: Exploring the effect of FBT for AN on familial relationships.
|
Investigate the process of familial relationship change for adolescents with AN and their parents who participated in FBT.
|
Manualised FBT; outpatient
|
Purposive; families who completed a 20-session protocol within an ED service at least six months before an interview with weight greater than 85% expected body weight were invited to participate.
|
16 female adolescents, 28 parents (15 mothers, 12 fathers) who completed a mean of 33 FBT sessions on average 12.11 months prior to data collection. Patients were 12 - 18 at treatment and 14 - 20 at data collection.
|
NS
|
Australia
|
Interviews
|
Constructionist grounded theory
|
Williams, Wood and Plath [58]
|
|
Parents’ experiences of family therapy for adolescent AN
|
Examine parents’ experiences of family therapy for adolescents with AN.
|
Manualised FBT (n=6) or SyFT (n=3); outpatient
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Purposive; parents were eligible to participate if they had received or were undergoing FBT or SyFT in CAMHS, their YP was aged 12 – 18 years at diagnosis, their BMI was in the healthy weight range at data collection, and illness duration was less than three years prior to treatment.
|
Six mothers and three fathers of seven YP (six females, one male). Treatment duration ranged from 0 - 6 to > 36 months. Patients were 13 - 18 at treatment.
|
NS
|
Australia
|
Interviews
|
Interpretative phenomenological analysis
|
- Wufong, Rhodes & Conti [32]
|
|
"We don't really know what else we can do": Parent experiences when adolescent distress persists after the MFT/FBT for AN.
|
Exploration of parents’ experiences of FBT in cases where treatment was discontinued and/or their child continued to experience psychological distress post-treatment.
|
Manualised FBT; outpatient
|
Purposive; participants responded to advertisements distributed through HCP networks.
|
Nine mothers and four fathers of 11 female YP who completed FBT at least one year prior. Patients were aged 12 - 17 at treatment.
|
NS
|
Australia
|
Interviews
|
Critical discursive analysis
|
† NS: Not Specified, YP: Young People, AN: Anorexia Nervosa, ED: Eating Disorder, FBT: Family Based Treatment; HCP: Healthcare Professional; CAMH: Child and Adolescent Mental Health
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Meta-synthesis findings
Six themes relating to factors that helped and hindered positive change in family therapies for AN were identified (Table 4).
Table 4 Overview of themes and subthemes
|
Theme
|
Subtheme
|
The psychological underpinnings of Anorexia Nervosa
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A coping tool for difficulties
Attending to young people’s development
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The therapeutic relationship
|
Young peoples' experience of the therapist
Parents' experience of the therapist
|
Confinement to a “script”
|
Neglect of young people's emotional distress
Neglect of family distress
|
A disempowering therapeutic context
|
Parents “on trial”
Rigid inflexibility versus individualised tailoring
|
Externalisation
|
Loss of the individual to Anorexia Nervosa
Separation of Anorexia Nervosa from the individual
|
Family involvement
|
Recruitment of the family to help the young person
The parent-young person relationship
Changes to family functioning
Complex family difficulties and relationships
|
The psychological underpinnings of anorexia nervosa
Families considered it important to maintain a holistic focus in treatment in order to attend to the young person's overall wellbeing including their psychological, emotional and social development.
A coping tool for difficulties. Young people and their parents described pre-existing psychological, emotional and interpersonal difficulties which made individuation and separation from caregivers difficult [49, 55, 57]. Young people conceptualised their eating behaviours as a "coping strategy"; they used restriction as a tool for regulating emotions associated with low self-esteem, difficult life experiences, relationships, separations and transitions [56]. Some parents conveyed concern that externalising AN as “an illness” overlooked a psychological explanation for eating difficulties:
"Something causes it [...] and not being able to treat what causes it, as well as the anorexia itself, trying to separate the two is a problem. And I come back to the need for a more holistic approach [...] something that recognises all the complementary parts and doesn't try and treat one in isolation of the other" [58].
Families reported how AN further impacted on young people’s development as it withdrew them from normal adolescent activities [55, 56]. Young people described feeling "stuck" and unable to relate to their peers who "continued to develop” [49, 55, 56].
Attending to young peoples’ development. Parents perceived the goals of weight restoration and young peoples’ development as competing and in tension [30, 50, 57, 58]; they considered it crucial to be attentive to balancing these two priorities. The requirement for parents to take responsibility for feeding the young person within phase one led to further developmental regression. Therefore, it was important that later phases of treatment focussed on supporting the development of young people's autonomy [55, 56]. Parents were required to “trust” the process and their young person in order to tolerate anxiety associated with moving away from the structured routines of treatment [56, 57]:
“[…] there’s still a part of me that still really worries about it. […], but […] I need to, you know, trust that she is getting better and that she’ll start doing some of the stuff on her own” [57].
Young people who experienced more significant difficulties with anxiety and separation experienced later phases of treatment as anxiety-provoking and overwhelming; this was a time of increased risk for returning to disordered eating [55]. However, others were motivated to engage in changes to their eating by the prospect of engaging in valued activities [55, 56]:
"As I had more control, I felt like I was more free and more able to enjoy my social life or my schooling life or I was able to work... I was like, well this is great...How could I throw it away and go back to something like that?" [55].
These young people emphasised the significance of engaging in meaningful aspects of life and redirecting their focus away from food and weight. This included reconnecting within relationships, as well as obtaining a sense of mastery and achievement in important areas of life [55, 56]:
"It's been crucial to accomplish high school, to get a driver's license...It feels really great to accomplish those, it's this sense of mastering, which is very important. To feel you can live a pretty normal life, where the focus is on everything else but body and food” [56].
The therapeutic relationship
Families conveyed how the experience of containment in the therapeutic relationship helped to facilitate positive change.
Young peoples’ experiences of the therapist. On starting treatment, young people described relief coinciding with significant anxiety associated with the prospect of "letting go of control” [52, 56]:
"There were two different sides within me, one saying 'Oh God, this is great, I'm going to get help now’…At the same time, […] 'No, now they're going to destroy what you have achieved, and you who have come this far’" [52].
Young people emphasised the time it took for the development of trust in the therapist before they could hand over control or share their feelings [52]. Feeling able to share their internal experiences was perceived as a catalyst for change [52, 53]:
“An important part of the turnaround was when I invited her into my feelings. [...] I started to trust her [therapist]" [52].
Young people desired human connection, understanding, collaboration, compassion, and non-judgement; a therapist who showed genuine interest in them, rather than solely increasing their food-intake and weight [49, 52, 53, 56]. When the therapeutic relationship had these qualities, young people developed confidence and trust in their therapist:
"The key to her significant improvement lies in the fact she trusted her [therapist] completely. It's so difficult for her to trust anybody" [Parent, 53].
Young people described disengagement in the absence of a positive therapeutic relationship. Some conveyed how their disengagement was influenced by a lack of perceived understanding by their therapist, a lack of positive family relationships, or their disagreement with how weight restoration was achieved [52, 55].
Parents’ experiences of the therapist. A positive therapeutic relationship was important in providing parents with emotional containment [22, 53, 58]. Parents desired a clinician who took an active role in aiding parental understanding and support of the young person, as well as family communication [22, 53, 54, 58]:
“She [therapist] knew how to teach us to deal with my daughter’s problem and that’s most memorable” [53].
The therapist was experienced positively when they had a neutral quality and were compassionate, collaborative, helpful, flexible and placed emphasis on building trust [22, 30, 32, 53, 54, 58]. Parents wanted to feel connected with their therapist, have their concerns contextualised and validated, and their circumstances and values respected [22, 30, 32, 53, 54, 58]:
“We have built up mutual trust. There’s genuine concern between her [therapist] and us. She didn’t treat us as if it were her job or profession” [53].
Moreover, parents wanted to improve their knowledge of AN in order to feel confident in their capacities to help [54, 57]. A lack of adequate information and guidance given by the therapist contributed to a lack of containment experienced within the therapeutic relationship [54]:
"[…] It seemed to be pushing all the onus on correction and enforcement on to my wife and I, and nothing coming from the clinicians, no support for us in our battle". [54].
Some parents perceived the therapist as cold, harsh, scrutinising, condescending and detached [22, 30, 32, 53, 54, 58]. One parent made a distinction between a positive experience of SyFT versus a negative experience of FBT, describing the SyFT therapist as coming "alongside" the family, as opposed to the FBT therapist acting as a "removed expert" [58].
Confinement to a "script"
Families conveyed how positive change was hindered by a confined focus on food intake and weight.
Neglect of young people's emotional distress. Young people frequently described FBT as an isolating process that ignored "what was going on inside" wherein their parents and therapist did not understand how distressing increasing their eating and weight was [30, 31, 50, 55]:
"[…] they just solely focused on my physical health, they didn't really take on much consideration as to my mental health and how much of a toll everything was taking on me" [30].
Young people desired support with managing the psychological experience of AN and its associated difficulties rather than solely focussing on increasing their food-intake and weight [53]. Areas of importance included motivation, emotions, thoughts, relationship difficulties, self-esteem, body image and identity issues [30, 31, 50, 54, 55, 56]:
"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 the guilt" [52].
Some young people felt that important conversations (i.e., the impact of their parent's attitudes to eating and weight) were not sufficiently acknowledged [31]:
"We opened old wounds and then they never really got closed 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” [31].
Some parents emphasised how FBT assumes that weight restoration leads to cognitive change [30, 32]; they expressed concerns that the psychological underpinnings of AN and its associated difficulties were unaddressed by the “FBT script” [30, 31, 32, 50, 51, 55, 56, 57]:
"The focus seems to be all on the food aspects […] the food is the end product of the whole problem, what's going on underneath?" [32].
When young people were not restoring weight in FBT, parents were concerned by the continued confined focus on food intake and weight as the young person became increasingly distressed and conflicts worsened [32]. They questioned whether FBT was doing more harm than good; for some, this led to treatment termination [30, 31, 52].
Neglect of family distress. Parents often described how being redirected to the “FBT script” caused distancing in the therapeutic relationship and reduced confidence about therapy [22, 30, 54, 58]. Many families conveyed a lack of space for the exploration of familial distress and conflict, which for some contributed to family estrangement and exacerbation of distress [30, 58]:
"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" [Young person, 31].
Parents conveyed how the task of "refeeding" as the solution obscured how demanding, distressing and dilemmatic their experience was. They considered it important to feel resourced emotionally, practically and personally to create capacity for the task of weight restoration; parental management of emotion was significant in this respect [57]. They felt overwhelmed, exhausted, isolated and let down by the therapist when their challenges were not recognised or supported [22, 30, 32, 54]:
"[…] it sounds easy in principle, […] when you actually do it at home it's not that easy when a teenager's screaming at the top of her lungs […] you feel a little thrown to the wolves [...] once you close the door of your family home that's it; you're on your own" [58].
Parents engaged in an internal search for answers regarding the cause for their young person’s eating difficulties to provide them with a sense of coherence and to guide day-to-day decision making [32, 54, 57]. Parents acknowledged the therapists’ attempts to relieve them of guilt and blame with FBT's agnostic aetiological stance, however described the experience of persistent guilt, self-blame and inadequacy [22, 50, 54, 58]:
"[…] it felt like, well as a parent, what have we done wrong?” [32].
Parental co-regulation was a strategy for the management of difficult emotions [30, 57], as were internal processes such as practicing acceptance, managing expectations and finding meaning in adversity [57]. However, practical challenges to parents’ capacity such as the lack of time and financial resources posed significant dilemmas for single parents [57, 58]:
“I can’t take any time off work, I don’t have any money, I don’t know how I’m going to help her!” [57].
A disempowering therapeutic context
Families conveyed how the experience of disempowerment in treatment was hindering to positive change.
Parents “on trial”. It was important to parents that treatment monitored progress in the overall health and wellbeing of their young person [57]. Attending to markers of progress was a powerful motivator that instilled hope, or revealed what was not working [57]. However, some parents described FBT as a "ruthless", "dogmatic" approach in which they felt "put on trial" [30, 32]. These parents reported to receive blaming, punitive responses from the therapist when there was insufficient weight restoration. Such interactions exacerbated parental guilt and self-blame, causing parents to feel exposed and vulnerable [30, 32].
“I have never been so challenged in my life as a mother. I felt wretched. It's such a fundamental thing to feed and protect your child and anorexia has already challenged that […] then to, on a weekly basis, be in a context (emotional tone to voice) where your failings are on show and also on show to your children" [32].
Parents reported that these interactions implicitly conveyed how they were failing in their role as parents and at FBT [30, 32], particularly when the therapist endorsed the assumption that "the Maudsley works":
" I felt like she was on trial […]. Hayley's failure to put on weight was Margaret's failure to feed her enough ultimately" [32].
Rigid inflexibility versus individualised tailoring. Some families reported to feel that FBT was “rigid”, “prescribed” and “inflexible” [30, 32]. Many families would have liked more separated sessions in addition to conjoint sessions in order that parents' and young peoples' individual emotional needs could be met [30, 50, 57]. These families reported a lack of tailoring to preferences regarding session format and content, treatment duration, ending, and opportunity to have a follow up [30, 50, 54]:
"The rigidity and inflexibility [,,,] was such a shame […] because [...] the heavy lifting was done, which was the trust [...]. The lack of progress or our frustration or anything to just flex the approach and to lean on the trust that had been built. Well, I think we'd have gone to the edge of the earth with her you know until it became so rigid, dogmatic […]" [Parent, 30].
Some families reported that time-limited FBT was not sufficient to support a full recovery [32, 50, 52]. Young people wanted the therapist to be attuned to their needs and to make a collaborative decision rather than ending treatment on reaching a “target weight” [52]. The therapists’ perceived assumption that they were psychologically recovered on reaching a healthy weight evoked feelings of anger and abandonment:
"OK, now you have reached normal weight - so now you are well again. The simple fact that I had put on weight meant that everything was fine, and that was all there was to it. I felt like…I'm not prepared to walk out weighing like this, if you leave me, I will start losing weight again” [52].
Externalisation
Externalisation could help and hinder positive change depending on how it was used and its effects on the individual and their relationships.
Loss of the individual to Anorexia Nervosa. Some parents described how young people were spoken about rather than with as a result of externalisation, which contributed to a perceived loss of the young person’s voice and identity [30, 32]:
"[…] I accept that when she was very sick, […] we talk in these beautiful terms of ‘It was the eating disorder and not Hayley in the room' […] but effectively Hayley was still in the room but she was treated as though she wasn't” [30].
Some young people did not find it helpful for others to perceive of them as being under the influence of an external entity because they felt unseen and unheard [30, 31]. Moreover, externalising conversations that highlighted family member burden due to AN were particularly difficult for some young people as they evoked guilt and shame. Instead, young people wanted their voice to be actively sought and to be given ownership over session content, rather than feel “talked about” and instructed what to do in an impersonalised manner [30, 52]:
"[...] 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” [31].
In contrast, a collaborative involvement in treatment fostered greater security and safety in the young person’s relationships with their therapist and family [30, 49, 52, 56]. Feeling seen as a person beyond AN helped to build young people’s sense of self, rather than reinforce an illness identity through the exclusion of their voice.
Separation of Anorexia Nervosa from the individual. At the start of treatment, conceptualising AN as an ‘unwanted temporary illness’ enabled parents to channel difficult emotions into “fighting” AN [22, 30, 31, 32, 50]:
"There was Sally and there was the eating disorder and once you separate them you realise that she is still there and we're fighting the eating disorder and she is too. [...] it wasn't just her doing this to herself" [32].
However, it was important that externalising conversations validated the young person’s lived experience. For instance, Venn diagrams acknowledging overlaps between the identity of the young person and that of AN, as well as engaging in chair work to speak to AN were described as meeting young peoples' emotional and psychological needs [31]:
"[…] 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" [31].
Young people emphasised the significance of transitioning from “denial” to “realisation” through externalising conversations which elicited the young person's voice and facilitated reflection on their personal values and life aspirations [30, 56].
"Ask yourself, why, why do you do this? What do you want to get out of your life? What are your true dreams? What is your greatest wish?" [56].
Young people acknowledged the importance, yet difficulty, of becoming aware of AN’s negative effects and its function in their lives:
"It's important to realize and see more clearly the negative influences the ED has, because it is, after all, a way of handling difficulties or mastering life. […] It's not easy to be attentive to the negative consequences the ED will have" [56].
Young people stressed their anxieties and resistance to making changes to their eating. However, they tolerated difficult feelings in the service of their commitment to a preferred identity underpinned by their personal values [56]:
"I haven't thought much about having kids. Still, I think it is important to stay in treatment, because I want to be able to take good care of my kids, which is a huge motivation for me” [56].
Family involvement
Interventions aimed at improving parental understanding and management of AN, as well as family functioning were supportive of positive change.
Improving parental understanding and management of AN: Parents entered treatment feeling powerless, not knowing how to help their young person [58]. For some, the structure and guidance on commencing FBT provided direction which instilled hope [22, 30, 31, 32, 52, 57, 58]:
"I felt totally out of control. […] So, having a plan just made me feel like I had something secure to-to work on, to work with, to trust in" [32].
One mother conveyed how FBT gave her permission and resources to challenge their young person's eating behaviour:
"Treatment gave me tools and framework and a structure and permission I suppose" [22].
Some young people experienced relief, safety and security when control over their eating was taken away [22, 30, 31]. Most young people acknowledged that they would not have restored weight without parental support [22, 30, 31, 56]:
"[…] I don't think I would have been able to gain that weight and get to the medically stable point if it had sort of been all up to me. […] I still definitely needed my family support because […] even if it was unintentionally, I would've just slipped back […]” [30].
Parents reflected on the potential of AN to undermine the marital relationship and the importance of parental unification and partnership which involved co-parent coordination and negotiation [32, 54, 56, 57, 58]. It was helpful when treatment scaffolded the sharing of roles and responsibilities between co-parents to ease parental burden as well as to ensure that both parents were engaged in changes conducive to young peoples’ recovery [57, 58]:
"We were a joint force. I think if you can work together really quickly it helps because an eating disorder can get around one of you, but if it knows that dad's there backing up everything that mum says and vice-versa […]" [32].
Parents who were not supported in treatment by their co-parent would have liked to have shared parental responsibility and were concerned about their co-parent’s lack of understanding for their young person's difficulties [57, 58]. In the context of parental separation, it was important that both parents pulled together to preserve the young person’s sense of unified family support [58]. This necessitated parental acceptance of disparate parenting philosophies and weight-restoration strategies [58]:
“At first it was like, […] “Hello? Uh, that’s not happening”. And then, you know, it’s like, “Actually, we need to do this for [our daughter]. Darn. Okay”. So suck it up, bury those emotions” [58].
Strengthening of the parent-young person relationship. Whilst some parents felt that treatment disrupted the parent-young person relationship [30, 31], others felt it helped them to maintain a connection with their young person. Some parents described personal changes which served to strengthen the parent-young person relationship, for instance becoming firmer with boundaries, more resilient and emotionally attuned [22, 32, 54, 57, 58]:
"I was one of these people who didn't show my emotions much, very tough orientated, very much the job at hand...once I understood what anorexia was like for my son, it helped me change. Now I've let my guard down and let people in. […] It’s [AN] made me a better person and a better parent...” [58].
Young people acknowledged how difficult it was for their parents to understand AN, however their efforts to do so made them feel worthy of care [31, 52, 55, 56]. In the context of relationships in which young people felt seen, heard and cared for, they were more accepting of the structures put in place to support them with eating [22, 30, 31, 52, 56]. Thus, young people found it helpful when the therapist mobilised supportive, understanding relationships [31, 52, 55]:
"[...] it definitely did teach my family […] and […] 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" [31].
Parental capacity to take non-coercive control over the young person’s eating appeared to be influenced by parents’ capacity to tolerate the young person’s distress [22]. When treatment contained parental anxiety and increased parental confidence, parents had greater capacity to provide emotional containment to the young person [22, 57]. Consequently, over time young people experienced greater security, safety and trust in the parent-young person relationship and were able to replace control with trust in others [22, 30, 52, 55, 57]:
"I felt the need to be in control but […] I sort of had to put my trust in to them that they were going to take care of me" [22].
Increased relational security in the parent-young person relationship was depicted by young people as learning to understand each other, reduced parental criticism, and increased parental provision of emotional support and reassurance [22].
“They tried to be as understanding as they could be [parents] […] it helped because for the first time I didn't actually shun them, I went to them...it's so weird cause for the first time in my life I let myself depend on someone else" [22].
Parents perceived the quality of connection between themselves and their young person as a tangible marker of positive progress in treatment [22, 57]. These relational changes had a positive impact on young peoples’ attachment system and sense of selves. Young people described reduced self-criticism, improved confidence, greater self-acceptance, increased capacity to trust others and in turn, in their selves [22, 57]. Parents described reduced secretiveness, increased resilience and emotional expressiveness in their young person [22, 57].
Changes to family functioning. Many families entered treatment with strained family relationships. Some young people felt they were a “burden” and "a stranger" within their family [22]:
"We weren't being like a family, a bit separated, like I was separated from everyone else in the family" [22].
In the context of family sessions which permitted space for therapeutic focus on relationships, positive changes to family functioning were reported, including improved communication, cohesion and problem-solving skills; increased honesty, openness and closeness; mutual understanding and trust; emotional awareness and tolerance; reduced conflict, criticism and blame; and increased capability and compatibility [22, 32, 49, 50, 51, 52, 53, 54, 57, 58]. Having a safe, contained space for difficult conversations helped to reduce emotional disconnection:
"They […] guided us through […] very hard conversations. Hard as in about feelings, about guilt, about perceptions, and about the effects it had on us [...] I think as a family we've grown a lot closer [...]" [Parent, 32].
Families often described more space to focus on the family system within SyFT [49, 53, 58]. They valued the therapist's directiveness on what needed to change, and their appreciation for each person's feelings and views [53]. These processes helped young people to share their feelings:
"What helped most is to talk about my feelings without any reservation. She helped everyone to speak out, including those who didn't talk much" [Young person, 53].
Some fathers became more involved in their young person's life practically and emotionally through their involvement in treatment [22, 49, 54]. One young person described how her father’s involvement helped to reduce the disconnection between them:
"[…] I can see that my father also tries to show concern for me. That feeling has been lost for years. He loves me and really wants to help me" [49].
Siblings struggled to understand AN and wanted to be included in treatment [51, 52]. When siblings were not included, sibling-relationship ruptures were often left unrepaired causing young people to experience loss, sadness and guilt. Families reported positive aspects of sibling involvement, including increased understanding and unified support, increased closeness in the sibling relationship, reduced sibling worry, greater transparency in the family system and opportunity to clarify appropriate family roles [51]:
"I think it made it so [sibling] understood […] what was going on. So it wasn't like she was kept in the dark and we were trying to avoid talking about it to her. So she was a bit more aware of what was going on and she didn't feel left out of it. She knew what not to say […]" [51].
Complex family difficulties and relationships. It was important that treatment addressed parental belief systems which served to maintain young peoples’ disordered relationships with eating and weight [31, 57]. One mother viewed slimness to confer protective factors for their young person and thus experienced challenge and unease during the process of refeeding. In order for treatment to facilitate weight restoration, the mother’s own beliefs in relation to eating and weight needed to be explored and addressed as an ongoing process:
“The thinner you are, the more beautiful you are, the easier the world is for you. I truly...believe that. […] You want your kid to be....to fit in, […] and obviously that’s easier if you look a certain way […]. What if they’re wrong? What if they make her gain too much weight, and then…and then she feels like she’s...too heavy”[ 57].
Young people did not perceive parental involvement to be helpful when they did not have trusting relationships with their parents, or when they had family difficulties which were not openly discussed in treatment [22, 52, 55]. They expressed uncertainty about what they were able to share due to concerns about disclosing their parents' own difficulties, or revealing family conflict:
"My parents have alcohol problems […] I preferred going on my own. [...] the fact is I never told anyone at the eating disorder unit. [...] I was so ashamed […] I was so dead scared of what might happen if they learnt about it" [52].
These young people explained how there were difficulties which felt out of their control that they needed help with before letting go of control over their eating [55]; they described poorer relationships with parents, family conflict and high expressed emotions at home. Unresolved family difficulties and conflicts led to unrepaired ruptures and disconnection in their family relationships following treatment. Some families for whom relational change did not eventuate were experiencing grief, loss and trauma [22]. For example, one young person explained that previous abuse in the family impacted on her ability to trust her parents [22]:
"[…] I didn't trust my parents [...] it would just have been so strange to have my mum sitting there. Then I would not have dared to be honest in the same way" [52].