Table 3 Themes and quotations from the systematic reviews
Overarching theme | Subtheme | Illustrative quotation |
|---|---|---|
Being in control, or being controlled Illustrative quotation for overarching theme: "Most adolescents with anorexia nervosa placed themselves in a dialectic of both controlling and being controlled. […]They reported a positive feeling of self-control […] but also in their relationships, in particular with healthcare professionals […]. Nonetheless, they also described the distressing feeling of being controlled or trapped by the disease and of losing control […] For parents, anorexia nervosa was a disease that has taken control of their child and modified his or her behaviour […]. It also affected family relationships, well-being, and daily life […] and it created a feeling of insecurity within the family and mistrust in intrafamily relationships and communication […] Healthcare providers perceived that the adolescent's search for control was at the heart of anorexia nervosa […] specifically the need to control others, especially the family". [31] | Patients with ED A lonely struggle for control | “In many accounts anorexia nervosa is described as something that provides safety and protection on several levels. ‘Anorexia nervosa, my friend… You’re my source of safety, my guardian…’ […] Loss of weight is seen as a remarkable conquest and as a sign of extraordinary personal discipline, whereas weight gain is considered an unacceptable failure of self-control. Not eating gives patients a sensation of control over their own lives. They feel stronger when they do not eat and totally in control of the situation. “you can have control on all your body, you can do things that other people say you can’t.’" [27] [p.75] "Engagement in anorexic behaviours was consistently reported as a way for the individual to gain control in their lives. Ironically, as the condition worsened, the self-imposed stringent rules […] resulted in the participants feeling even less control in their lives” [25] [p.182] “Thus, anorexia nervosa passes from an effort to attain control to an entity controlling their lives. ‘It’s like a monster… something that holds you with its claws." [27] [p.75] |
"Patients struggled with allowing others to take control with respect to their eating-related behaviours. At the same time, however, they often appreciated that this was necessary to recovery." [30] [p.197] | ||
Health care staff A tug of war over control | “Lack of knowledge could result in a perception among nurses that the patients themselves were responsible for the illness and hence should be able to ‘fix themselves’[…] Such attitudes toward eating disorders entailed that the nurses performed routine behaviour and control work. […] As a consequence of nurses’ lack of knowledge about anorexia, the acute divest of patients’ control of meals resulted in power structures that extended into other areas of the patients’ lives.” [35] [p.9} "For most professionals, the therapeutic relationship […] included an aspect of control. They considered it necessary to assume control of the adolescents’ actions to enable normalization and the disappearance of symptoms. They believed that they must decide in the patients’ place […] and maintain a framework, structured by the department’s rules and protocols […]. Some professionals tried to balance their controlling approach with kindness […] but, most of the time, this takeover induced a power struggle." [32] [p.12] | |
Family members The balancing act between control and trust | “during this disharmonic state, the roles, rules and relationships within the family change and control the family’s everyday life.” […] Parents describe that the illness controls and takes over the discordant family, which creates an unpleasant climate”. [24] [p.220] “constructing the ED as a separate entity […] included actions whereby carers were ‘tough’ on the ED, but ‘kind’ to the individual.[…] Difficult behaviours and negative emotions were attributed to the ED, enabling carers to remain empathic yet resist the wishes of the individual to promote recovery. […] Once you separate you can fight it. While you’re seeing it as being one you can’t fight yourself, it made things here a lot easier because once I could differentiate between the two of them; and then you would say, is this you talking or her?” [29] [p.115] | |
Balancing physical recovery and psychological needs Illustrative quotation for overarching theme: “the healthcare professionals […] relied on a biomedical discourse to define the target symptoms and their normalization. […] From the point of view of the professionals, treating AN was equivalent to normalizing the patient’s weight, body, and behavior. […] Retrospectively, some adolescents recognized the importance of regaining weight and changing their behavior […] but most of them criticized the method used and its effects. They denounced the use of the criterion of weight alone to judge health status and the course of care […]. They also considered that the treatment focused too much on somatic aspects, while ignoring their psychological distress […]. Parents shared this opinion and regretted that care focused too much on their child’s physical health. [32]" | Patients with ED A wish to be seen as a whole person | “ distinction between the physical symptoms of anorexia and the psychological aspects of the condition in their treatment and recovery. […] adolescents lost their sense of identity as staff conveyed assumptions about how ‘an anorexic’ thinks and behaves. This non individual approach was also mirrored in the use of standardised treatment programmes and a focus on physical recovery over psychological recovery where the treatment goal was ‘to fatten them up’." [23] [p.356] “An eating disorder does not disappear just because you start eating right.[…] the treatment of anorexia nervosa is not exclusively a question of weight and eating habits. Nutritional treatment designed to increase weight, which may at times involve the imposition of certain rules, is understood to be unsatisfactory, in that no consideration is given to the psychological aspects of anorexia nervosa, nor does it provide emotional support to the patient." [27] [p.44] “Patients found that family therapy neglected some important issues […] patients believed that the causes of AN were neglected in treatment, and would have liked attention to this. […] Some participants receiving FBT expressed that they would have appreciated issues other than AN being addressed in therapy. […] an important perceived shortcoming of ‘family counselling’ was that ‘personal problems/feelings’ were neglected in favour of focusing on eating behaviours." [30] [p.200] |
Health care staff The necessity of physical recovery | “This theme […] was predominant in the healthcare professionals' representation of treatment, for they relied on a biomedical discourse to define the target symptoms and their normalization. Professionals considered AN, which they viewed as a disease or disorder to be corrected, as the object of treatment. […] From the point of view of the professionals, treating AN was equivalent to normalizing the patient's weight, body, and behaviour.” [32] [p.11] “Several studies stressed the nurses’ inability to pay attention to patients’ needs for psychological support to the same extent as they did to the physical issues. Such a single minded focus on weight reinforced the feelings among patients of being their diagnosis. […] The unbalanced focus hampered the relationship as patients perceived that the nurses did not want to be supportive of all their needs but, rather, saw only the goal of the patients reaching a certain weight […]). The feeling of loss of control due to weight gain and lack of psychological support strengthened the anorexic behaviours, thereby working against the patient’s health process” [35] [p.8] | |
Family members A call for a more holistic approach to treatment | "Parents considered this biomedical theory of anorexia nervosa and the treatment framework it implied to be too rigid and to prevent professionals from caring for their child´s global distress." [31] [p.30] “…above all, care should focus on the adolescents as individuals and complete people […]. This holistic approach distinguished three aspects: the teen´s involvement in their own care, consideration of their social world, and consideration of their families." [32] [p.11] “In all studies participants reflected on meaningful relationships with others as being an integral component of reclaiming a sense of self in their journey to recovery. Relationships, whether with partners, family, friends, others with an ED or therapists, enabled women to learn to accept themselves through the experience of acceptance by others.” [33] [p.20] | |
Trusting relationships Illustrative quotation for overarching theme: “ all considered the therapeutic relationship as the core concept for ensuring the effectiveness of treatment. Indeed, they had the same vision of the benefits of a good therapeutic relationship and about the conditions for constructing a therapeutic relationship. […] they experienced the same barriers to establishing a good therapeutic relationship: mutual distrust and lack of communication.” [p 13] For health-care providers, establishing a therapeutic relationship […] was the major challenge […]. The professionals considered relationships with the parents important as well […] Parents reported that three actions appear necessary to guarantee a trusting relationship between the professionals and themselves: the professionals must support them […], involve them […], and inform them. [32] | Patients with ED Finding the keys to recovery | “reducing disconnection from others, particularly family, was a key aspect of addressing the difficulties underlying AN, and therefor in promoting recovery." [30] [p.198] “Staff who were sensitive to individuals and their needs, for example, empathetic, clear, consistent and who demonstrated availability and willingness to listen, were felt to be crucial in treatment and recovery.” [23] [p.356] |
“Where staff were empathetic and non-critical, psychotherapy imparted hope and facilitated self-determination whilst allowing participants to feel safe, supported, and validated.” [25] [p.184] | ||
Health care staff Being let in to someone’s world | “…actively allowing the patients to be more involved to create an alliance. […] lack of involvement could lead to resistance and hamper the recovery process and the relationship and could even worsen the illness. […] The nurse’s ability to establish a personal connection in the relationship was described as important in the recovery process and essential for the establishment of a trusting relationship. [35] [p.7] "The aspects of openness, integrity and honesty were identified as vital in establishing a relationship […] the feeling that they were not just ‘doing a job’, contributed to a sense of safety among the patients. […] it was only when the nurses really showed a genuine commitment that patients felt meaning in care. Such commitment made it possible for the patient to see beyond the role of the nurse only as a professional, which promoted an individual and unique relationship. […] On the contrary, in situations when nurses failed to demonstrate such commitment and genuineness, it resulted in a sense of ‘us versus them’” [35] [p.7] | |
Family members A wish for a working alliance with the whole family | “Several studies highlight the importance of involving the family as a whole in the treatment and use of psycho-education in order to increase the family’s knowledge about the illness. […] In order to establish structures that the family can rely upon, it is necessary that both parents and children work together against the illness..” [24] [p.223] “family members of patients revealed unaddressed needs such as information and practical guidance on how to manage the patient for they felt impotent and needed to share this experience with other people. […] “We need guidance on how to manage daily situations, this is my main problem now…..if she has an eating binge, what should I do? Should I try and stop her? Should I try to talk to her? Or should I distract her…” [26] [p.4] “…the majority of carers described feeling excluded or ´shut out´ of treatment. Often this exclusion was attributed to confidentiality, legislation, which created a perceived ´wall of silence´, leaving carers feeling uninformed regarding the individual´s treatment and prognosis." [29] [p.119] |