Attacks on linking: stressors and identity challenges for mothers of daughters with long lasting anorexia nervosa.

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Attacks on linking: stressors and identity challenges for mothers of daughters with long lasting anorexia nervosa ab

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Rivka Tuval-Mashiach , Ilanit Hasson-Ohayon & Adi Ilan a

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Department of Psychology, Bar-Ilan University, Ramat Gan, Israel

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The Gender Program, Bar-Ilan University, Ramat Gan, Israel Accepted author version posted online: 03 Jan 2014.Published online: 28 Jan 2014.

Click for updates To cite this article: Rivka Tuval-Mashiach, Ilanit Hasson-Ohayon & Adi Ilan (2014) Attacks on linking: stressors and identity challenges for mothers of daughters with long lasting anorexia nervosa, Psychology & Health, 29:6, 613-631, DOI: 10.1080/08870446.2013.879135 To link to this article: http://dx.doi.org/10.1080/08870446.2013.879135

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Psychology & Health, 2014 Vol. 29, No. 6, 613–631, http://dx.doi.org/10.1080/08870446.2013.879135

Attacks on linking: stressors and identity challenges for mothers of daughters with long lasting anorexia nervosa Rivka Tuval-Mashiacha,b*, Ilanit Hasson-Ohayona and Adi Ilana a

Department of Psychology, Bar-Ilan University, Ramat Gan, Israel; bThe Gender Program, Bar-Ilan University, Ramat Gan, Israel


(Received 24 September 2012; accepted 21 December 2013) The purpose of the current study was to focus on the subjective experience of mothers of daughters with ongoing anorexia nervosa. Specifically, we explored the stressors faced by these mothers while coping with their daughters’ illnesses; we also looked at how they experienced their maternal selves and roles, and their perceived competence in coping with their daughters’ illnesses. Two related aspects were found to be central in the participants’ experiences. One aspect was their network of relationships and how these relationships were challenged or compromised as a result of their daughters’ illnesses. This aspect included the mothers’ relationships with their daughters, the mothers’ relationships with other family members and with their spouses/partners, the mothers’ relationships with the professionals treating their daughters, and the mothers’ relationships with themselves. The second related aspect was the challenge presented to the participants’ self-perception as ‘good mothers’ by their daughters’ illnesses. The findings showed that coping with a daughter’s eating disorder (ED) posed a significant obstacle to the mother’s ability to maintain a satisfying relationship with her daughter and her environment, as well as to maintain a positive maternal self-perception. The implications of these findings for professionals working with caregivers are discussed, and a more nuanced, gender-specific attitude is suggested in working with mothers caring for daughters with EDs. Keywords: mother–daughter relationship; eating disorders; family burden; child’s illness

Anorexia nervosa is an eating disorder (ED) that usually begins during adolescence, and is more frequent in women than in men (95% are women). It is characterised by a very low body weight (85% of what is considered normal for a specific individual’s age and height), an intense fear of putting on weight despite the individual’s being severely underweight, amenorrhea and distorted body image (American Psychiatric Association, 2000). Anorexia is both a physical and mental illness: the patient suffers serious and life-threatening physical symptoms, as well as a significant misreading of reality in relation to weight, body image and food intake. Furthermore, patients with anorexia do not perceive themselves as being ill and therefore tend to refuse treatment and help from parents and professionals (Polivy & Herman, 2002). About one-third of those diagnosed with anorexia remain sick five years following their initial diagnosis, and fewer than *Corresponding author. Email: [email protected] © 2014 Taylor & Francis


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half of those afflicted with an ED (both anorexia and bulimia) ever fully recover (Steinhousen, 2002; Steinhausen & Weber, 2009). The chronic nature of the illness leads on many occasions to medical complications and sometimes results in death (Taylor, Bagby, & Parker, 1997), creating challenges and a heavy, ongoing burden for caregivers, especially within the family (Highet, Thompson, & King, 2005). The caretaking burden on parents of children with severe mental illness is documented extensively in the mental health literature (e.g. Baronet, 1999; Hasson-Ohayon, Levy, Kravetz, Vollanski-Narkis, & Roe, 2011; Tsang, Tam, Chan, & Chang, 2003) and is traditionally conceptualised as having both objective and subjective components (Hoenig & Hamilton, 1966). Several attempts have been made to assess the experience of parents of children with anorexia. In many of these studies, however, the focus has been on caregivers in general, and no attempt has been made to differentiate between parents and other caregivers, or for that matter, between fathers and mothers. Caregivers of patients with EDs have been found to experience high levels of both objective burden (as measured by the extent of disruption or change to caregivers’ lives) and subjective burden (emotional costs). This subjective burden has been experienced as higher with anorexia than with other EDs (Santonastaso, Saccon, & Favaro, 1997) and higher also with anorexia than with other chronic disorders such as schizophrenia (Treasure et al., 2001). Recently, in the EDs arena, family therapies (e.g. Robinson, Dolhanty, & Greenberg, 2013) and interventions for informal caregivers were developed to specifically address the burden on parents who cope with the illness of their child (e.g. Grover et al., 2011; Hoyle, Slater, Williams, Schmidt, & Wade, 2013). While most of the studies on parents of children with anorexia have focused specifically on how the parents coped with their child’s illness (Honey & Halse, 2006; Sharkey-Orgnero, 1999; Tierney, 2005), less empirical and theoretical attention have been given to their broader subjective experience (i.e. the special challenges faced by these parents in terms of their identity and perceived roles within the family). Furthermore, very little research has been done regarding the differences between maternal and paternal experiences when dealing with a child’s ED. However, given the differing roles and functions played by mothers and fathers in general, and when coping with a child’s illness in particular (e.g. Waters et al., 2000), there is reason to assume that mothers and fathers experience their daughters’ eating behaviours differently, and cope in different ways. This idea is in accord with other studies on mothers of children with a variety of different illnesses or disabilities that assume the unique sociocultural construction of motherhood and focus on the maternal experience (e.g. Hassall, Rose, & McDonald, 2005; Young, Dixon-Woods, Findlay, & Heney, 2002). In western societies, mothers are held more accountable than fathers for their child’s health and well-being and are culturally considered responsible for their child’s developmental or psychological difficulties (Caplan, 2007; Lee, 1999, Ruddick, 1989), including their EDs (e.g. Cooper, Whelan, Woolgar, Morrell, & Murray, 2004; Hoskins & Lam, 2001). In addition, theoretical (i.e. mainly psychoanalytic) and clinical attention has historically focused on problematic aspects of the mother–daughter relationship in order to account for the daughter’s ED (Bruch, 1973; Masterson, 1995; Palazzoli, 1985). This historical stance, which has contributed to the stigmatisation of these mothers, has perhaps resulted in a parenting experience that is quite different for mothers than it is for fathers. Another rationale for focusing on the maternal experience of coping with a child’s ED stems from studies in the mental health field showing that


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women as caregivers tend to be more vulnerable than men (Lee, 1999, 2001; Zendjidjian et al., 2012), that gender differences are stronger than role differences (patient/caregiver), and that women experience more distress as caregivers than men do (i.e. Hagedoorn, Sanderman, Bolks, Tuinstra, & Coyne, 2008). The aforementioned challenges to the coping abilities of mothers of daughters with EDs relates to their perceived parental efficacy, which could be defined as the ‘beliefs or judgments a parent holds of their capabilities to organise and execute a set of tasks related to parenting a child’ (de-Montigny & Lacharite, 2005, p. 390). Bandura (1997) suggested that there are four major sources for the development and maintenance of parental self-efficacy (de-Montigny & Lacharite, 2005). These sources are: enactive mastery experience (childcare experience prior to becoming a mother); vicarious experiences (learning from observation and modelling); verbal persuasion (significant others’ beliefs regarding the maternal capacities of the mother); and physiological and affective states. In addition, the child’s characteristics also affect the parental sense of efficacy (de-Montigny & Lacharite, 2005; Teti, O’Conell, & Reiner, 1996). Thus, establishing and maintaining a sense of maternal efficacy is based on sources that are related to the mother’s relationship with herself, with her daughter and with the environment. Since it can be assumed that all of these relationships are at risk while coping with a daughter who has an ED, the sense of maternal self-efficacy might also be challenged. Nevertheless, a review of the literature shows that there has only been one published study specifically addressing the challenges faced by mothers of daughters with anorexia. In that study, it appeared that mothers who were coping with a daughter’s ED felt shame and guilt, and as if they were carrying around an embarrassing family secret. These mothers not only blamed themselves for their child’s anorexia, but also described feelings of being blamed by professionals in the field as well (Hoskins & Lam, 2001). In the current study, we wished to look into these matters more deeply and address the subjective experience of mothers of daughters with chronic anorexia, their perceptions about themselves and their maternal efficacy. In doing so, we hoped to better understand the sources of stressors that these mothers experienced when coping with their child’s illness, both in relation to their own identities as women and to their roles as mothers. Method Participants The data analysed for this paper were extracted from in-depth interviews conducted with 10 mothers (aged 43–65) of daughters who either had a chronic ED at the time of the study (four mothers) or had since recovered (six mothers). The range of EDs was between 3–8 years in duration. All daughters were originally diagnosed as suffering from a chronic sequel of anorexia nervosa, and all were hospitalised at least once in ED units for the purpose of treatment. As we wished to understand the mothers’ experiences in the chronic phase from the widest possible perspective (both retrospective and current), we chose mothers whose daughters’ EDs had gone on for at least three years prior to the time of the study, and also mothers whose daughters had eventually recovered.

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Procedure and interviews The Bar Ilan University Ethics Review Committee approved this research study. Mothers were then recruited via contact with several clinics for the treatment of EDs, advertisements in internet forums and the use of the ‘snowball’ method, whereby participants told other potential participants (i.e. mothers with anorexic daughters) about the study. Mothers who agreed to participate were informed of the research purpose and gave their signed consent. Each participant took part in one interview, which was comprised of two stages. During the first stage, mothers were asked to describe their experiences of coping with their child’s ED in an open-ended narrative, from the initial onset of the illness to the current time. During the second stage, several key questions were asked in order to gain a better scope of the stressors and challenges faced by these mothers and their strategies for coping. The main questions during this second stage were: What was difficult for you during the time of the illness? What were the sources of stress for you? What helped you cope? Can you describe your feelings and thoughts from this time? Interviews were conducted in the participants’ own homes, except for two which were conducted in ED clinics, as per the participants’ requests. Both stages of the interview were conducted in one session and the length of the interview was between one and a half and two hours each. All interviews were recorded on audiotape and transcribed. Two raters individually coded each transcript and then cross-checked their codes. The interviews were carried out by a clinical psychologist who had a basic knowledge of EDs, and the research was conducted as part of her MA dissertation. She had no prior acquaintance with any of the interviewed mothers, and was closer in age to the daughters than to the mothers. This information was openly disclosed to participants during the first telephone call in which participation was requested. It was our impression that because the interviewer was not affiliated with any hospital or formal ED centre, the mothers – who were initially suspicious regarding the purpose of the research and the initiative behind it – felt a greater willingness to participate in the study, an impression that several of the mothers confirmed quite clearly. It should be said that the interviewer’s age, being closer to that of the daughters than the mothers, might have impacted the narratives in a way which emphasised the relational aspects of the mothers’ experience, especially in regard to the mother–child relationship. The two other authors, who took an active part in the analysis of the findings, are the supervisor of the MA dissertation (Rivka Tuval-Mashiach), a clinical psychologist with extensive clinical experience with women with EDs, and Ilanit Hasson-Ohayon, a rehabilitative psychologist who is an expert in the field of mental illness and has long worked with patients and their families. Analysis Transcripts of the interviews were analysed for categorical content analysis on the basis of the model of narrative analysis proposed by Lieblich, Tuval-Mashiach and Zilber (1998). According to this model, textual analysis focuses on the dimensions of content and/or structure and on the unit of analysis, with the choice of using the unit of the text as a whole (holistic analysis) or only parts of the text (categorical analysis). As is common in qualitative research, we employed both confirmatory and exploratory analyses. In confirmatory analysis, the researcher tries to confirm or validate

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prior theoretical notions, while exploratory analysis aims at opening up new hypotheses and theoretical concepts (Patton, 2002). In the first stage of this study, the existing literature on parents’ experiences when coping with a child’s ED guided our initial analysis of the main themes. While we were searching for the factors and contents leading to the mothers’ distress, however, it appeared that rather than describing specific stressors, the participants emphasised the ways in which the ED interfered with their relationship networks. Therefore, we decided to focus on relationships as the main overarching theme, and to map the types of relationships the mothers described and how they related to the mothers’ experience of their daughters’ ED. This inquiry resulted in the conceptualisation of four domains of relationships, which are presented in the Results. Results General findings All of the mothers described the onset of their child’s ED as a traumatic, life-changing event, which derailed their lives from their natural paths. The mothers’ narratives revealed that they were intensely absorbed by and involved in the management of their daughters’ illnesses on both practical and emotional levels. Although mothers described the various difficulties they confronted in coping with their daughters – including those which they experienced on a daily basis – what they emphasised most were the relational aspects of their experience, i.e. the relationships seemed to determine or at least heavily influence the participants’ feelings of competence regarding their perception of themselves as mothers, and their own mothering skills. Therefore, an overarching theme of ‘relationships’ emerged, and we have framed the results of this study within this overarching theme.1 Table 1 summarises the themes which emerged. Four types of relationships emerged from the narratives: the relationship with one’s daughter, the relationship with one’s spouse/partner and other family members, the relationship with the greater community, and the relationship with oneself. It appears that in their narratives of relationships, mothers described a subtle process of evaluating their own mothering abilities against an implicit cultural model of a ‘maternal ideal’, which constitutes who and what ‘a good mother’ is. Furthermore, in regard to each type of relational stressor, a different aspect of the maternal ideal was highlighted and perceived to be missing or lacking in the mothers’ perceptions of themselves and their mothering abilities. In what follows, we will present the four relational domains, illustrate them and interpret our findings in relation to the mothers’ maternal identities, as compared to their perceptions of the maternal ideal. Domain I: the mother–daughter relationship: threats to the image of the ‘good mother’ as connected to her daughter All of the mothers described their relationships with their ill daughters as a primary source of stress, worry and emotional turmoil, beginning with the first time they suspected their daughter was ill, peaking upon their daughters’ formal diagnosis and fluctuating thereafter, in accordance with their daughters’ illness status. A recurrent theme, emerging in all of the interviews, was that of the mother’s inability to communicate with her daughter. As a result, the mother often worried that the relationship between the two was in jeopardy:

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Table 1. Themes of relationships in the maternal experience. Organizing theme:


Relationships

Relationships with daughter Difficulties in communication Being blamed Mothers’ feelings: pain, guilt, helplessness

Relationships with other family members: Relationships with other children: The need to maneuver between the different needs The impact of ED on siblings

Relationships with the environment:

Relationships with oneself:

Relationships with ED professionals:

Reflection and rumination on one’s behavior

Being left out of treatment Conflicts with professionals Feeling blamed

The threat of ‘falling apart’ Relationships with husband: Loneliness, Lack of division of responsibility

Self doubt as a mother (am I a good mother?) Mothers’ feelings: pain, despair, guilt

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She was always locked in her room, always in the dark. And you didn’t know if she was in there or not. And sometimes I would knock on the door- ‘Gail, open up! Gail, open up’! (crying). It was always locked. And in our house the doors had never been locked before. She locked herself in there with a key … I didn’t know how to speak to her. I still don’t know how to speak to her, even today. We fight all the time. (Sharon)

This mother describes both the physical and emotional barriers that come between her daughter and herself. The locked door also symbolises for the mother her daughter’s hidden needs and feelings, which she will no longer share with her mother. Expressions such as ‘I can’t reach my daughter’, ‘she doesn’t talk to me’ and ‘she wouldn’t listen to anything I tried to say’ were at the core of the mothers’ frustration and pain, especially as these feelings marked a major departure from the relationship that existed prior to the onset of the disorder. For some of the mothers, this rupture in the relationship is so painful that they would prefer anything to their daughters’ silence – even being blamed by their daughters for their problems: She has a million complaints for us as her parents, but she hasn’t voiced them yet. I wish she would just come to me and explode and say: You were not a good mother; you were terrible all these years. At least then I would know what to … I mean, she doesn’t even dare to come and yell at me. All she says is: everything is fine, just leave me alone. (Dafna)

This unexplained rupture in the relationship results in two parallel processes. The mother makes greater and greater efforts to initiate a connection with the child who is pulling away, efforts which in most cases prove futile and are eventually abandoned. The other result is an internal emotional-cognitive process of checking ‘what and where did I go wrong’, a theme we will elaborate on in greater detail in the last section. Several mothers said that when their daughters did eventually speak to them, they were shocked by the intensity of the anger and blame targeted at them. Blaming was in some cases targeted towards both parents, but in most cases it was aimed at the mother, both because of her active involvement in the treatment or – in a few cases – because she was held responsible for the disorder. Ann says: One day we watched TV and saw a baby whose parents burned him with cigarettes. I said: What parents could do such a horrible thing to their child? So my daughter said: I know parents who did an even worse thing to their child. I said: What? She goes: They forced their child to be hospitalised. It was very painful for me to hear.

Mothers’ emotions in the context of their relationships with their daughters included confusion, frustration, guilt, helplessness and despair, as well as anger and disgust. It is important to note that positive emotions and moments of closeness were also experienced by the mothers at times, but since our focus in the current paper is on the stressors, we don’t refer to them. In addition, although a few of the mothers described some areas in which their relationships with their daughters had improved over the years, all of them stated that they were never able to recapture the same mother–daughter bond that had existed between them prior to the illness.

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All you want is for your child to be happy and blessed … and you don’t know how to do those things for her. You don’t know how to help and you don’t know what to do for her … this frustration is with me all the time, at this very moment. (Lee)

The relationship with the daughter was described as the most painful relational aspect of the mothers’ experience. Since it was the daughter whose illness required the mother’s focus and attention, it is not surprising that the child’s situation created such a primary stressor. Nevertheless, we claim that in addition to the objective stress of the daughter’s illness, another source of sorrow and pain for the mother was the impact that the illness had on the mother–daughter relationship. The difficulty the mothers had in understanding their daughters and why they behaved as they did, and the deterioration of their relationships, added to their feelings of inadequacy as mothers. Because one of the primary characteristics of the ‘good mother’ is a strong, affectionate bond, especially with her daughter (Chodorow, 1978; Miller, 1991) – one which includes empathy, identification and proximity – these mothers felt ill-qualified in this aspect of their maternal identity. Since they didn’t understand why their daughters became ill in the first place, nor could they empathise with their daughters’ disorder, these mothers found themselves feeling disconnected from their daughters, unable to help them recover or protect them from the deterioration that accompanies the disorder. The position of not being able to help and protect their daughters reinforced the mothers’ feelings of impotence and incompetence, leading them to feel that they were the antithesis of the nurturing and caring ‘good mother’. Domain II: relationships with other family members: threats to the ‘good mother’ as the ‘keeper’ of the family Another source of self-doubt was the mothers’ relationship with other family members. Despite the significant disruption created by their daughters’ EDs, mothers struggled to maintain family life and routine as smoothly as possible. Coping with the illness demanded time and energy that inevitably came at the expense of other family members, especially younger brothers and sisters: You are only busy with her (the daughter). It’s not that you neglect the others, but let’s say that it was 90% with her, and 10% with the others, and you do have other children. They were very hurt, and they would come to me and say: ‘You’re always with her; when will it be over?’ We tried so hard, but the situation was so difficult. I don’t know how I stayed sane. (Melanie)

The difficult task of maneuvering between the different needs of their children was only one of the mothers’ tasks associated with family life. The more painful aspect was the feeling that ‘the family is falling apart’, as one mother put it. All of the mothers described how the atmosphere at home radically deteriorated and became frightening and anxiety-ridden, as constant fights and arguing with the ill daughter became routine. The situation often resulted in the other children acting out, and one way of their doing this was by joining in the efforts to take care of their sick sister. These efforts included watching over their sisters’ eating, and making sure she didn’t hide food. It is important to note here that the mothers in our sample did not ask for this kind of help. Nevertheless, family members naturally took these caretaking roles upon themselves, a

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reality that despite being helpful was also difficult for the mothers to accept emotionally. The other way in which some of the ill child’s siblings acted out was by staying away from home, looking for other places to spend time and avoiding the tense atmosphere in the house. Sheila said:


Being anorexic is being half dead and of course it affects everybody, so the younger kids stopped staying at home. They went to the neighbor’s house, saying they were not comfortable in ours. And they were right; it was not comfortable at home.

Another source of stress for the mothers was the realisation that their other children were being exposed to the ill daughters’ dangerous and unacceptable behaviours: vomiting, lying, yelling and fighting with the parents. One of the mothers described painfully how at one point she couldn’t bear the situation anymore: There was one time that I threw her out … I called my husband and said: I sent her away, I don’t want her here. I don’t care, I’m desperate, I can’t cope anymore, I don’t have the energy for it. My other daughters see everything, my younger daughter sees it, i don’t want her to learn from her. I just can’t; I threw her out. You get to the point where you want to hit her. It’s hard to describe this feeling … (Rena)

The huge effect of the daughters’ ED on other family members contributed to the mothers’ feeling that additional life-domains were being affected by the ED. A vicious cycle thus ensued: the mothers, seeing that the ED had ramifications for all their children and not only for their ill daughters, experienced anger and disgust towards their daughters, which then led to their feeling more guilt and pain. They were aware of the various ways in which their other children’s lives were being harmed and disrupted, and the price their other children might ultimately have to pay for a disorder that wasn’t even theirs. Realising that their daughters’ ED had a great impact on the other children, the mothers were unable to separate their daughters’ condition from their overall maternal self by telling themselves that the problem was only with the sick child; rather, they had to admit that the ED involved and affected the whole family. A greater challenge to maintaining a positive and competent maternal self as a good mother was therefore created, because all aspects of the mothers’ mothering experiences were affected by the daughters’ illness. The heavy burden of dealing with the sick child as well as with the healthy ones did of course fall on both parents, and the fathers in these families were described to one degree or another as being involved in the management of the ED (except for one case, in which the mother was widowed before its onset). Some of the fathers were very actively involved while others at least served as partners for some of the decisions that needed to be made along the way. For this reason, we were surprised to learn that almost all of the mothers in our sample described very strong feelings of loneliness – of coping on their own with their daughters’ illness. Marsha said: My husband would leave the house in the morning and get back in the evening. During all this time, and even still today, with the millions of psychologists we saw and the millions of therapies we were in, I will say it again, and I’m going to cry now, that I’m alone. I’m

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very lonely in this, even today. My husband defines himself as belonging to the UN (United Nations), he never gets involved, he never helps with anything that relates to our daughter’s illness … I’m always coping alone.


Interestingly, even in cases in which the husbands took an active role in caring for their daughters, the mothers still felt very alone. Loneliness was one of the most intense feelings disclosed in the interviews and was often accompanied by tears as well as other non-verbal markers of pain and distress, even in cases where the illness had been defeated many years earlier. It appeared that the feelings of loneliness were related to the mother’s perception of her maternal role and to her expectations of herself as a mother: I felt very bad because I didn’t feel I had support. It seemed as if for him, okay, the child was sick, it really hurt him, it really was important to him, but it was just another task on his checklist, while for me it was everything. It encompassed me. I slept with it and woke with it and thought of every tiny detail, of how to put the food on the plate in a certain way and whether to put the vegetables here or there, so it wouldn’t seem like too much for her. My thoughts were only about her; she was the first, and everything else was secondary. (Ana)

Tanya spoke of loneliness resulting from her helplessness and inability to intervene with her child’s illness, leaving her only as a powerless observer: (Crying). Like I told you, it’s as if you are alone. You alone need to pull your daughter from the abyss into which she has fallen. She has fallen, and it’s all on you. You see the needle on the scale speeding down without stopping. You feel that you are going to lose her, as if she is disappearing.

In other cases, the mother’s feeling of aloneness resulted from experiencing painful things with her daughter while not being able to thoroughly share or explain these things to those who weren’t present: When I need my husband he is immediately there, he will leave everything and come, and this was how it was whenever we needed hospitalization. But the burden was on me because I stayed with her at home. This is why many times I told him: You don’t understand, you don’t understand, you are always out of the house. You don’t understand how it is to stay all day with this thing, how it is to see her not eating, or eating and throwing up, and again, and again, and her never saying a word. This is what is so difficult. (Shirley)

We interpret these mothers’ loneliness as part of their dialogue with the ‘good mother’ script, one which in western society ‘places sole maintenance of relationships on the mother, and models women’s self-sacrifice’ (Johnston & Swanson, 2006, p. 510). These mothers clearly felt that the responsibility of addressing and dealing with their daughters’ dire situations fell solely on them, and they seemed ashamed to admit that they had failed to carry out their duties or that the experience had been so difficult for them. This may be the reason that they didn’t share their difficulties and emotional burden with others. A few mothers added their impression that one of the reasons they were so alone with their daughters’ disorder and could not count on their husbands’/partners’

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involvement was the specific nature of the disorder and its relation to their daughters’ body image, self-esteem and issues with diet; namely, that this disorder was a ‘female’ disorder and didn’t ‘belong’ to the men’s domain. Only two mothers referred to their husbands as constant sources of support and felt empowered by their help and cooperation. Perhaps a contributing factor to the loneliness, some of these mothers felt was the fact that at times their husbands/partners not only couldn’t help them, but in fact needed help themselves in coping. One mother said:


It was very difficult for my husband; he didn’t cooperate in family therapy. He cried twice in the meetings, and during the second meeting he just ran away. He couldn’t bear it emotionally. At the beginning I pushed him to go with her, and he did, but then later … that is why I’d rather do it all alone … it got to the point where I not only had to take care of her, but of him as well. (Sue)

Another woman described how her husband’s responses to their daughter’s disturbed eating created an additional flashpoint: She vomited all the time, ate and threw up, and again, and again. It was horrible, especially for my husband. I learned to watch and keep silent, but he would shout and explode. It wasn’t simple, and sometimes this was another frontline in the house: he was yelling and humiliating her and expressing anger in extreme ways towards her. (Nelly)

As shown by these citations, the women’s self-perceptions and sense of competence were threatened not only in relation to their maternal role, but also in relation to their roles as intimate partners and wives. The efforts to stay attuned to everybody’s needs – the ill daughters’, the husbands’ and the other children’s – created a heavy burden on the mothers and led to feelings of loneliness and self-doubt with regard to their functioning as ‘good mothers’. Domain III: Relationships with people outside the immediate family: threats to the ability to protect her child, and to being perceived as a ‘good mother’ The coping process of the patient and her family was situated within a wider context of which many people were part, including neighbours, friends and the extended family. Professionals, of course, including physicians, therapists, nurses and nutritionists, also played their roles. The impact of the surrounding environment was therefore complicated and multi-leveled, and it is impossible to cover all of its aspects here. While it is important to note that in the community at large there were indeed sources of support (e.g. the extended family) and resources which were helpful to the daughters and their parents, the focus of our study was on sources of stress, and it emerged that a major source of stress was the therapists and professional staff in the hospitals and clinics. There was a great deal of miscommunication between staff and parents. The mothers in our study often felt misunderstood and experienced a lack of empathy from the professionals. They also felt excluded and confused, as they were not consulted regarding treatment plans for their daughters; they were often left feeling an unbearable ambiguity regarding their daughters’ situation while in the hospital. Melanie says:

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Once our child was hospitalized we were not allowed to be in touch. Nothing. No visits, no phone calls, nothing. They just took the child away from her family. I remember that we came back home, locked the door, and didn’t answer the phones. We sat here for four days, unable to stop crying. When I went to the hospital, they wouldn’t let me in. We didn’t know what to do. And then, on the fifth day, my daughter apparently asked a visitor to use her cell phone, and called us at home. It was terrible; her crying was terrible, she begged us to discharge her. So we came and discharged her, against medical advice and at our own risk. And I want to tell you that it took us a very long time to get her to trust us again, to convince her that we love her, and that we want her at home. We didn’t mean to cause her such pain, but we did it because we were told that that was how we should do it, that that was the right way.

From this citation and others, it is clear that mothers and parents in general felt it difficult to identify with the treatment plans for their daughters and in some cases, as in this one, they even interrupted them. It seems to us that at least part of this difficulty may be attributed to the mothers’ feeling that they did not understand the logic and rationale behind the treatment. They felt the rules were cruelly inflicted on them and their daughters without any guidance or explanation. When confronted with the ‘good mother’ script – which requires that the mother not only protect her child from being hurt by others, but also be all-knowing and in control of the situation – these mothers seemed to feel extremely incapable of filling that role, or of being able to mediate the hospital experience for their daughters. They themselves felt helpless, confused and in the dark. It should also be said that at times the parents’ conflict with the professional teams encompassed even more complex and troubling issues than those surrounding the treatment plans: Some of the mothers, in fact, expressed the feeling that they were being directly or indirectly accused of having caused their child’s illness: At the beginning, all the blame was put on me. I mean, in the family it was clear that because I uttered the famous sentence (that the daughter should watch her diet) then it was my fault she got sick. And my husband would say: It’s because of you, because of your healthy foods and special diet. (Nelly)

Some of the mothers also felt that they were being blamed by the medical and psychological professionals, particularly by the therapists treating their daughters. One mother, Sharon, when asked by an interviewer if this was her feeling, said: It’s not a question of feeling. I was directly told that because my relationship with my daughter was charged, that’s what caused the illness. My daughter’s psychologist was always telling her: You have to disengage from your mother; it’s her fault that you’re sick.

Several mothers mentioned that they felt the treatment team’s hidden message to them was that they – the parents, and specifically the mother–daughter relationship – were at the root of the ED. This perceived or actual accusation, together with the feelings of guilt and doubt that already existed, resulted in great pain and distress, as well as anger. It is important to mention here that two mothers didn’t share these feelings and were mostly grateful for the treatment and guidance received from the medical and psychological professionals.

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Domain IV: relationship with oneself: threats to the ‘good mother’ identity All of the participants described at length their struggles to derive meaning from their child’s illness and to understand why their child became ill. Most of the mothers (8 out of 10) described an ongoing ruminative and painful process of looking back at every aspect of their mothering, their daughter’s past, and their prior relationship with their daughter in order to give meaning to and understand the reason for their child’s present illness. This process was accompanied by questions such as, ‘Was I wrong? Could/ should I have done things differently as a mother’? Mothers spoke of their failure to understand that something was wrong at the outset, asked themselves if they had said something that might have caused their daughters to start dieting, and looked back to find whether they had made mistakes in the management of the illness. This process was very active in the first stages of the disorder and was accompanied by feelings of sorrow and remorse. Later, these feelings were replaced by a degree of acceptance, or quiet despair. Mika says: When it all begins, you start looking at what went wrong. And this search is difficult; it causes one to feel bad. So you start to remember: here I yelled at her, here I was angry at her, and you don’t know if that’s the … and then you say, Well, I also got angry at her sister, and it didn’t end up like that for her … it’s very difficult.

Within this context, guilt was one of the main feelings described. It was an inclusive experience, sometimes related to a specific event or mistake, and sometimes vaguely related to mothering in general. I can’t rid myself of it, the feeling that I’m guilty for her illness (crying). Because of the fights we had. Maybe I shouldn’t have argued with her over what time she came home at night, maybe I should have argued differently … sometimes she would come home at five or six in the morning, without letting me know where she was. (Sharon)

And Nelly says: I’m guilty. I’m guilty for not being a good enough mother. I probably didn’t give her, I don’t even know what, but you’re always wrong, whatever you do, it is wrong.

Along with guilt, these women experienced a great deal of self-doubt and a loss of selfconfidence as mothers. Everything they had previously taken for granted about themselves – that they were good mothers raising healthy normal children – now felt tenuous. The fact that their daughters developed EDs and that their illnesses became chronic or long-lasting was automatically perceived by them as implying that there was something missing or inadequate in their mothering. The psychological climate, in which mothers are still held solely responsible for their child’s mental and physical health, serves as the backdrop for such feelings of guilt, self-doubt and loss of maternal efficacy. Even many years after the onset of the illness, Ann, another mother, says: You never know any more if what you decide is right, and it tortures you, it never leaves you. So there are things that I’m glad I did, like leaving that doctor, and other things I did that I don’t know if I did right, like hospitalizing her … you just don’t know what is right and what is not.

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With such guilt, disruption of one’s self-confidence, and self-doubt, it was not uncommon to hear notes of despair and helplessness in several narratives:


Life takes you to places you don’t expect. You’re like a wandering leaf. Who are you at all? You can’t control anything; you can hardly control your own life. So I said to myself: Give up, you can’t do anything anyway, at least not more than you’ve already done’. (Shirley)

Interestingly, there was no difference in maternal self-perception between mothers whose daughters recovered and mothers whose daughters were still coping with anorexia at the time of the interview. It would not have been surprising to find that mothers of daughters who recovered felt better about themselves as mothers and about their relationships with their daughters than mothers of daughters who did not recover. We interpret the fact that this did not turn out to be the case in three ways. First, the focus of the interview – for all of the mothers – was on the difficult times, not on the times marked by improvement. Second, even in regard to those daughters who recovered, mothers described a fragile state of wellness rather than a full recovery; the recovery they saw was a tenuous one, and one which they were afraid to trust even after several years had passed. And finally, these mothers did not credit themselves with contributing to or being responsible for their daughters’ recovery. When the daughters recovered, this recovery was attributed solely to the daughters’ will-power and decision to get better. It seems as if the mothers in our study evaluated themselves against the cultural norm of ‘the good mother’ (Lupton, 2000) and felt that they failed to live up to it. This norm implicitly defines the good mother as one who is always in touch with her children’s needs and responds with only a certain measure of sensitivity: never too much to obstruct development, but just enough to allow them to practise being autonomous (Lawler, 2000; Winnicot, 1988). The good mother is held responsible for the nurturing and development of her children, and their needs always take precedence over her personal needs (Hays, 1996). We termed this category ‘relationships with oneself’ because mothers devoted a significant portion of their narratives to describing their feelings about themselves and their internal dialogues. Within this category, we included stressors which were personally and individually felt from within, not directly evoked by interactions with others. These mothers’ feelings about the mistakes they believed they made, and about not being ‘a good enough mother’, were directly related to their difficulties in their relationships with their daughters. Discussion The findings of this study showed that daughters’ EDs significantly interfered with mothers’ abilities to maintain satisfying relationships. This interference emerged as one of the most difficult burdens for the mothers to bear, as it challenged their identities and experiences of themselves as ‘good mothers’. The four types of relationships which were affected by the ED and which emerged from the mothers’ narratives were: the one with their daughters; the one with other family members and with their spouses/partners; the one with the professionals treating their daughters; and the one with themselves. The combination of a forced emotional rift from their daughters, a feeling of being disrespected, blamed or misunderstood by the medical professionals, and a


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lack of emotional support from their spouses/partners resulted in profound feelings of loneliness. The title we have chosen for this paper, ‘Attacks on linking’ – an allusion to Bion’s concept (1959) – expresses the emotionally charged experience of mothers whose multi-layered networks of relationships were challenged. The ruptures in these relationship networks posed a threat to two central aspects of these women’s identities: as women and as mothers. First, the initiation and maintenance of significant relationships are perceived as primary in women’s identities and self-definitions (Josselson, 1996). Women describe and define themselves through their relationships with others (Gilligan, 1982; Tuval-Mashiach, 2006), so that difficulties in maintaining these relationships present a challenge to their very identities. As far as their identities as mothers, we would suggest that the ruptures which occurred in the four types of relationships in these women’s lives were all related to threats on the idea of their being ‘good mothers’. Each relationship rupture challenged a different aspect of what is generally thought to constitute good mothering: The relationship with oneself is related to one’s identity as a ‘good mother’, as one who takes good care of her children; the relationship with one’s daughter is related to the role of the ‘good mother’, who is deeply connected to her daughter; the relationship with other family members is related to the concept of the ‘good mother’ who, like glue, holds the family together; and the relationship with people outside the family is related to external perceptions of her as being a ‘good mother’. Theoretically, it appears that the ability of these mothers to engage in ‘maternal practice’ (Ruddick, 1989) was profoundly interrupted by the daughters’ EDs. According to Ruddick, there are three basic demands placed on mothers: to preserve the life of the child (protection); to foster the child’s growth beyond initial dependency (nurturance); and to ensure the child’s acceptability as a productive and normative member of society (training). For the mothers in our sample, however, mothering was severely compromised in regard to each of these three demands: they couldn’t protect their daughters from the disorder; they had to watch their daughters risk their lives and cease growing; and they couldn’t see or represent their daughters’ eating behaviours as normative or culturally acceptable. As a result, they lost confidence in their ability to ‘know’ how to mother their daughters. Because mothers are culturally held responsible for their child’s healthy development and well-being (e.g. Hays, 1996; Johnston & Swanson, 2006), the existence of a mental disorder – especially one which is socially perceived as being under the control of the patient (Roehrig & McLean, 2010) – was felt by these mothers to reflect their own problematic inadequate mothering, and led them to doubt their mothering abilities, not only in regard to their sick daughter, but in regard to their other children as well. Coupled with the feeling of being held responsible for the well-being of their families and partners – and the difficulty in communicating with health professionals – these mothers ended up with a severely depleted sense of maternal competence, leading to feelings of distress, guilt, shame, loneliness and self-doubt. While some of the difficulties experienced by the mothers in this study may be common to mothers of children who cope with other illnesses as well, we believe that coping with one’s daughter’s ED is uniquely difficult and stressful. First, due to the faulty impression that EDs are self-inflicted conditions (Roehrig & McLean, 2010), there is very little public understanding of or compassion for the family’s burden – or for the mother’s, in particular – when coping with an ED. Second, the stigmatic perception of EDs as related to the denial of femininity and to poor mother–daughter

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relationships (Cooper et al., 2004) turns the focus, and even the blame, towards the mother and her misdeeds as a mother. And finally, the very nature of an ED such as anorexia – i.e. the refusal of the daughter to eat or to be fed – is in striking contrast to the most basic maternal motivation: to feed and nurture the child. For these reasons, we believe that mothers of daughters with an ED are themselves at great risk for major psychological distress, as is often found among parents of persons with a severe mental illness (Grandón, Jenaro, & Lemos, 2008; Spaniol, 1987). Thus, the current study adds to previous qualitative research on parenting and EDs (e.g. Highet et al., 2005; Honey & Halse, 2005) by highlighting the effect of EDs on the mother’s relationships with herself and with her environment. Clinical implications We would like to suggest three ways in which the distress of mothers coping with a child’s ED could be addressed and relieved. One way would be by improving the communication between professional staff and family. Mothers (and fathers as well) should be informed of the treatment rationale and plan for their daughters, and should be treated with care and respect. Health professionals should be trained to understand and acknowledge the difficulties and stresses experienced by mothers in particular who, after all, are the main care providers for their child. The engagement of mothers with other mothers who are coping with similar situations may also help ease their loneliness. It has been documented that support groups may improve coping and create a network of support and sharing (Boyd, 2002). We suggest that mothers be offered the opportunity to engage with other mothers in clinics and hospitals which treat women with EDs. This support might be provided as an additional benefit for caregivers, one that focuses on helping parents in the guidance and management of their child’s illness (Hoyle et al., 2013; Robinson et al., 2013). Finally, theoretical perceptions about the origins and development of EDs, about ‘good mothering’ and the responsibilities of mothers, should be overhauled. Mothers in the current study seemed to internalise the stigma assigned to mental illnesses and EDs, and the blame for having caused their child’s ED. In order to challenge this stigmatic perception of mothers, professionals also need to develop a more balanced and nuanced perception which takes into account the complex interactions of family factors, individual factors regarding the specific child, and other social and cultural factors involved in the onset and maintenance of EDs (Jacobi, Hayward, de Zwaan, Kraemer, & Agras, 2004). Conclusions from this study should be arrived at with caution due to its small self-selected sample of women who were willing to retrospectively disclose their experiences and share them with us. It should also be emphasised that there were a few mothers who spoke about the positive strategies they used to cope with their situations and overcome the difficulties and challenges, thus showing much resilience; our focus on the relational experiences that are related to challenges to the ‘good mother’ perception may therefore have biased the whole picture in a negative way. Also, it may be that a prospective follow-up of mothers during the process of coping would shed light on the specific difficulties faced at each stage. Still, in accordance with other studies on parenting a child with a mental illness (Grandón et al., 2008; Hasson-Ohayon et al., 2011), we believe that the experiences and challenges these mothers dealt with in their relationships with themselves, their daughters, their families and partners, and the

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broader environment in general – including feelings of shame, guilt and loneliness – may very well reflect other mothers’ experiences. Future studies are needed in order to further validate the current study’s results. Note 1.

Because relationships with others, and threats to them, are at the centre of this paper, we chose to borrow Bion’s concept and name the paper ‘Attacks on linking’.


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Bulimia nervosa with and without a history of anorexia nervosa.

Hypoglycaemia associated with anorexia nervosa.

Case report on anorexia nervosa.

Mothers, daughters, and disordered eating.

Intellectual function in patients with anorexia nervosa and bulimia nervosa.

Anorexia nervosa with transient hypopituitarism.

Anorexia nervosa.

Fragmented healthcare for anorexia nervosa.

Obesity and anorexia nervosa.

Treatment of anorexia nervosa.

Spontaneous Thumb CMC Joint Dislocation in Long- Standing Anorexia Nervosa.

Sexuality of women with anorexia nervosa.

Neuropsychological function in patients with anorexia nervosa or bulimia nervosa.

Anorexia nervosa and bone metabolism.

Prolactin in anorexia nervosa.

Long-term outcome in anorexia nervosa in the community.

Treatments of medical complications of anorexia nervosa and bulimia nervosa.

Mothers and daughters: a powerful spell.

Treatment of adolescents with anorexia nervosa.

Anorexia nervosa and family therapy.

Hypocomplementemia in anorexia nervosa.

Purtscher-Like Retinopathy Associated with Anorexia Nervosa.

Gut Dysbiosis in Patients with Anorexia Nervosa.

Oesophageal achalasia mistaken for anorexia nervosa.