“My Whole World Fell Apart”: Parents Discovering Their Child Has Anorexia Nervosa

Abstract

This was the first study to examine the experience of parents who discover their child was living with anorexia nervosa (AN), thus fulfilling a critical gap in the eating disorder literature. Gadamerian hermeneutic inquiry was the guiding philosophy and method used to investigate this topic. Dialogues with parents revealed the ambiguity inherent within discovery; the isolation, betrayal, and loss felt by parents; and the complicated family dynamics occurring during the process of discovering one’s child has AN. As such, when discoveries are made, parents play a vital role in the development and functioning of the family’s response to the situation. This research offers health care providers a better understanding of the difficult times parents and caregivers experience when discovering their child has AN.

Keywords

anorexia nervosa caregivers parents discovery disclosure hermeneutics qualitative

Anorexia nervosa (AN) is an eating disorder (ED) marked by significantly low body weight, intense fear of gaining weight or becoming fat, and disturbance in how one perceives their body weight or shape (American Psychiatric Association, 2013). Individuals experiencing AN report extreme distress resulting from the illness (Arcelus et al., 2011; Berkman et al., 2007). Distress is also echoed by families and caregivers of individuals with AN (Blondin et al., 2019), reflecting that this is a shared experience within the family, with a great impact on relational dynamics and family roles. Although the individual with AN feels the mental and physical impacts of it, parents and caregivers experience something too, an experience that is difficult to describe. Although the ED literature has made vast strides in understanding the illness, the disclosure/discovery process and its implications have gone unstudied and represent a gap in understanding.

Discovery and Disclosure of AN

Little is known about how AN is “discovered” in those living with it. Discovery can be conceptualized in several ways, the first being intentional disclosure to others and the second being through unintentional signs or behaviors that reveal the problem. AN is riddled with complexity and ambiguity (Ryan & Callaghan, 2014; S. Williams & Reid, 2010; E. P. Williams, Russell-Mayhew, Moules, & Dimitropoulos, 2018). Throughout the course of AN, ambiguity is not far away, but rather is a hallmark of the experience (E. P. Williams, Russell-Mayhew, Moules, & Dimitropoulos, 2018). This ambiguity is evidenced through (a) the ambivalence often reported toward AN and motivations regarding recovery (Nordbø et al., 2012), (b) the complicated recognition process and frequent denial of symptoms (Gray et al., 2015), and (c) the inconsistent treatment outcomes for those with AN (Byrne et al., 2017).

The process of discovery makes the issue of AN even more complex. Secrecy and concealment are behaviors typical of individuals with AN as evidenced by clinician reports (Basile, 2004). In addition to the difficulties experienced by clinicians, researchers studying AN have indicated that individuals’ denial in illness is a complex factor that remains obscure (Starzomska & Tadeusiewicz, 2016). Adding to the complexity, there is no common agreement between researchers as to the reason for denial (Starzomska & Tadeusiewicz, 2016). Whether denial in illness is intentional or not, researchers have been left struggling with how to effectively collect accurate information from this population to best serve them. Based on the available literature, there are various reasons individuals experiencing AN either are not likely to share their experiences with others or present as hesitant to do so (Becker et al., 1999). Based on these limited findings, and in combination with reports regarding high levels of secrecy, denial about symptoms, and minimization that anything is wrong (Gray et al., 2015; Muscari, 2002), it is not surprising that many individuals with AN experience ambivalence toward disclosing they have a problem. In addition, many remain silent to maintain their weight loss and sense of control (E. P. Williams, Russell-Mayhew, Moules, & Dimitropoulos, 2018).

Although not all details are understood about the experience of disclosure, E. P. Williams, Russell-Mayhew, and Ireland (2018) have suggested that the experience of disclosure is a process extending over time and involves multiple interactions with others, not a one-time event. Furthermore, many individuals with EDs feel they can no longer hide from others, feeling “too far gone” to continue to conceal their behaviors (E. P. Williams, Russell-Mayhew, & Ireland, 2018). Disclosure is complex and unique for each individual, and the target of disclosure is a major component of the interaction (E. P. Williams, Russell-Mayhew, & Ireland, 2018).

Family members and friends are cited as the most likely recipients of disclosure (Becker et al., 2005); however, little is known about family members’ experiences of these emotionally charged interactions. To add to the complexity, families may discover that their loved one has been experiencing AN with or without that individual choosing to come forward with this information. Therefore, whether the AN is learned through a planned disclosure or through an unintentional discovery, the situation can quickly become heightened, making the experience of discovery a critical moment in the lives of the family members and the individual affected by AN.

Family Caregiving, Functioning, and AN

Intervention guidelines for AN recommend the involvement of family members in the treatment of youth presenting with this disorder (National Institute for Health and Care Excellence, 2017). Given the recommended involvement of relatives, many researchers have studied the experience of caregivers. Literature suggests that parents are not prepared for the involvement in, or take responsibility for, the treatment of their children and often report difficulties across multiple domains of caregiving (Blondin et al., 2019).

Psychological distress, expressed emotion (i.e., a range of attitudes and behaviors that relatives express about the individual affected with AN), and caregiver burden have been identified as factors that family members caring for a relative with AN experience as difficult (Anastasiadou et al., 2014; Blondin et al., 2019). Caregivers for individuals with AN often report guilt, shame (Treasure et al., 2008b), loss (Treasure et al., 2001), helplessness, self-blame, anxiety (Honey & Halse, 2006; Whitney et al., 2005), decreased self-worth (Kyriacou et al., 2008), and an overall reduced quality of life (De la Rie et al., 2006). Furthermore, caregivers report feeling blamed for their loved one’s illness (Honey et al., 2008; Honey & Halse, 2006). In fact, caregivers of those with AN report similar levels of burden to those caring for relatives with psychosis (Treasure et al., 2001), highlighting the tremendous social impact that AN has on caregivers and family members.

Families’ high levels of burden, psychological distress, and dysfunctional responses have been demonstrated as maintaining factors for AN (Anastasiadou et al., 2014). Specifically, the ways in which family members express themselves and/or accommodate to the symptoms can impact the outcome of the individual experiencing AN and possibly exacerbate the symptoms (Treasure & Schmidt, 2013). This cycle of family dynamics and exacerbation of symptoms has been proposed as an interpersonal maintenance model of AN (Schmidt & Treasure, 2006; Treasure & Schmidt, 2013). Emotional responses to AN symptoms may inadvertently play a role in the maintenance of the problem, and families can become stuck in these unhelpful patterns of interaction and accommodation (Treasure et al., 2008b).

Among the negative aspects of caregiving for a child or adolescent with AN, parents report that the sense of loss contributes most to emotional overinvolvement, whereas the youth’s difficult behaviors contribute most to parent’s critical comments (Blondin et al., 2019). Emotional overinvolvement refers to an individual’s attitudes of sacrifice, overworrying, and instances of intense emotions. Critical comments are defined as direct criticism or indications of dissatisfaction. Blondin and colleagues (2019) proposed that the perception of disruptive behaviors in the child/adolescent with AN may be one factor that exacerbates parents’ critical comments and attitudes. Not surprising, compared with family members of healthy individuals, a systematic review of families caring for individuals with EDs suggested anxiety, depression, and stress scores were consistently greater for this group (Goddard & Treasure, 2013).

As families are heavily relied on as support systems for individuals with AN (Blondin et al., 2019; Gisladottir et al., 2017; Honey & Halse, 2006; Quong & Chen, 2018), it is imperative that more be known about this dynamic, relational discovery process. When such discoveries are made, parents play a vital role in the development and functioning of the family’s response to the situation. Given the complexity of AN and the process of discovery, the research question guiding this study was the following:

How might we understand the experiences of parents who have discovered they have a child living with AN?

Method

Hermeneutic inquiry has been described as a “practice and theory of interpretation” (Moules et al., 2015, p. 3), applied when understanding experiences and phenomena occurring within the world. After conversing with participants, researchers understand the topic through interpretation that is rooted in language, culture, and history. In hermeneutic inquiry, attention is placed toward instances of the particular rather than toward instances that repeat and is seen most frequently (Gadamer, 1960/2013; Moules et al., 2015); therefore, the aim of a hermeneutic study is not to describe the process such that it can be replicated. In fact, hermeneutics counts on the idea that it is the answer to a question that could have been answered differently (Moules et al., 2015). Hermeneutics calls forth the routine pieces of life that are taken for granted and makes them salient and stand out.

Aim and Scope of Hermeneutic Research

The goal of hermeneutic inquiry is to answer questions such as How might we understand? and How might we interpret the topic? Hermeneutic research questions reflect that, as researchers, we come to a topic that is already alive and that topic may have multiple interpretations. As researchers arrive to the topic once it has already been shaped, they join in with the topic as it moves forward, fully knowing that what has already happened or what is to come cannot be completely captured in interpretation. This is especially true of the exploration of parents’ discoveries that their child has AN.

Hermeneutic inquiry requires researchers to engage with individuals who have experienced the topic so that they might learn from them. The point of this inquiry is not to essentialize the phenomenon under study, as is the case in phenomenological research, but instead it seeks to conserve the complexity and messiness of the topic (Moules et al., 2015). Phenomenological studies aim to describe and define the phenomenon while removing the context that makes that topic whole. Rather than essentializing the topic to what it means to discover and isolate this experience to its simplest elements—time of day, what was discovered, response to immediate discovery—to hermeneutically explore a topic means to search for the context, the whole yet limited experience of the individual discovering, what comes to mind about the discovery in the weeks or months after, or how the person making the discovery felt in the moment, for example.

Research Design

Participants were recruited from the Facebook accounts of two ED support networks in Alberta, Canada. To participate in this study, participants must (a) have been the parent of a child who experienced AN (either AN restrictive or AN binge-purge subtype); (b) speak English; (c) have had a child between the ages of 12 and 25 years at the time(s) of discovery; and (d) confirm their child was cared for by a physician if the child currently experienced AN. Participants were not recruited to the study if the discovery of AN happened after the child already had recovered.

An initial telephone screening interview was scheduled with potential participants. The main purpose of this screening was to ensure parents interviewed represented the intended sample. Everyone who participated in the screening interview met the inclusion criteria for the study. Participants had the option to choose to engage in the interview independently or together with their partner. Prior to starting interviews, participants were asked to choose a pseudonym for themselves and their child. The interviews were considered unstructured in nature, meaning that a set of predetermined interview questions were not adhered to. This type of interviewing is consistent with the hermeneutic method in that researchers have an interview guide with general guiding questions that are focused on the topic; however, they are adaptable and allow for the topic to unfold organically and respond to leads in the conversation without being held to a rigid script (Moules et al., 2015). Given the flexibility during interviews, some interviews included questions such as “Tell me about your experience of discovering your child has AN,” and “When you look back on your experience of discovery, what did you first notice, and what would you go back and tell yourself?” These questions were asked depending on the flow of the interviews. Ten interviews with 12 individuals were conducted: seven interviews with mothers, one interview with a father (whose partner was interviewed separately), and two interviews with a mother and father together. Informed consent was signed before the interviews commenced. Participation was voluntary, and participants were informed that their consent may be withdrawn until the point of data analysis began (typically 1 month after the interview).

Participants’ ages ranged from 44 to 61 years (mean age = 52.6 years). Of the nine families represented in the interviews, seven were married, one was separated, and one was divorced. Eleven participants lived in Alberta, Canada, whereas one lived in New Brunswick, Canada. At the time of discovery, the average age of the child with AN was 17.1 years, ranging from 13 to 21 years. Of the nine families represented in the interviews, seven had a daughter with AN and two had a son with AN. Parents reported that their children were in various stages of illness at the time of discovery, with some children demonstrating symptoms of AN for several months, whereas others demonstrated symptoms for over a year.

Data Analysis

This theory and method package does not prescribe procedural steps as thematic analysis does, for example, but rather places responsibility on the researcher to thoroughly understand hermeneutic philosophical principles and apply these throughout the analysis of new content and synthesis of interpretation. To illustrate what this process looks like, first a researcher is called to the topic and creates a research question. Corresponding curiosities to be explored during the project and interviews are formulated during this time and evolve as interviews commence. Interviews are scheduled next in a staggered way, allowing the interviewer time to consider the conversations had and to use these understandings in subsequent interviews. Interviews are audio-recorded and transcribed verbatim. After transcription, one reads and re-reads transcripts, making interpretations and comments, noting salient moments or threads running throughout. Generally, in hermeneutic practice, understanding and interpretation are evoked by writing; therefore, it is common for researchers to begin writing their interpretations and thoughts immediately after interviews end. During analysis, the researcher uses themselves as a vessel for interpretation, drawing on past experiences, literature, film, world history, and language, to name a few, to provide context and depth to their interpretations. Interpretations were determined through the process of reading and re-reading interview transcripts, arriving at interpretive conjectures, and developing them into robust interpretations supported by the data and accompanying literature. As this is the case, it is difficult to offer step-by-step instruction on how to carry out such a study, and as such, mentorship by a highly experienced individual or team of researchers who understand the philosophical tenets of hermeneutics is crucial. Interpretations in hermeneutics require researchers to think divergently rather than in terms of convergence and open up the topic rather than reduce it to single themes. This research was approved by the Conjoint Faculties Research Ethics Board.

Findings

As hermeneutic inquiry is a unique method that easily stands apart from other qualitative approaches, so too does it differ in writing style. Hermeneutic findings often include relevant literature to support interpretations, hence resembling a writing style that readers may distinguish more traditionally as a discussion. As a hermeneutic inquiry can produce abundant interpretations, the following were selected for publication and do not represent the entirety of interpretations made in the study. Findings from interviews and analysis revealed that discovering one’s child has/had AN was like the pieces to something seemingly whole or complete falling apart. Whether it was a parent’s diminished belief in their competency as a mother or father, or a parent experiencing betrayal or loss, the discovery resembled a crashing down of pieces that used to fit together so well.

Period of Change

A lingering stretch of time marked by parental suspicion that something was not quite right is a hallmark feature of discovering one’s child has AN. The sense that something was different in one’s child was apparent, yet the sources of these observable changes were not available to parents: “You know that something’s off and you want to help her, but you don’t know what. You don’t know what you can do” (Participant). When describing her daughter’s sudden change in attitude, one mother shared,

All of a sudden, it was like, “why is she spending so much time in her room?” “Why is that every time we ask her something, she barks at us?” It was always little things like that. Always in the back of my head, “What set her off this time?” Or “what’s wrong this time?” (Participant)

A state of mental uneasiness, unrest, and uncertainty was experienced. The apprehension that filled parent’s lives during the time leading up to the discovery and shortly afterward was evident.

The Merriam Webster (n.d.-c) dictionary offers context to the term uncertainty in that it “may range from falling short of certainty to an almost complete lack of conviction or knowledge.” The condition that a parent can be in tune with their child and almost be sure that something serious is going on, yet not have any idea of what exactly is occurring is painful to imagine. A couple recalling the 9-month lead-up to discovering their son had AN explained, “when something is wrong in your house you definitely know. But we didn’t know what” (Participant). Parents only have access to tangible signs, which include their child’s behavior, mood, nutritional intake, and weight. Though observing these outward signs may appear to be obvious red-flags to those on the outside, to these families, seeing these tangible factors in the absence of an understanding or root cause keeps them in the dark, unaware, unable to grasp at the truth.

Discovery

I went in and [my son] is literally in a ball on the floor and is just bawling . . . she says your son is within hours of dying. She says, either you take him to the [hospital] now, or we put him into an ambulance and take him. I’m like standing there. What are you talking about? (Participant)

Utter shock, a sinking feeling, a wave of relief, confusion, guilt, and complete helplessness. These are some of the emotions that parents cycle through when they discover their child has AN. Few things in life prepare one to find out that their child has been starving themselves for a prolonged period of time. Even fewer things prepare parents to learn of how their lives are about to change and how they will be required to let go of all expectations. Parents described discovery as months of noticing changes in their child’s mood and behavior, yet not being able to place their finger on it. Parents noticed that their child was losing weight while isolating themselves from family, friends, and activities. Discovery was a time during which parents experienced confusion with what was happening and doubting that anything was different while simultaneously reaching out to trusted others and asking whether they had noticed anything different about their child. Parents also reported arranging a series of medical and mental health consultations where parents were searching for answers. Finally, discovery included the diagnosis of AN and the realization of what it means, the trajectory of illness, and the possibility that AN could be lifelong.

Ambiguous discovery

To be human means to wrestle with ambiguity. It surrounds us, it engulfs our world, maybe it encompasses even further out beyond our understanding. Perhaps this is the reason why discovering their child has AN is beyond comprehension for many parents. Ambiguity refers to understanding a concept, word, or expression in two or more ways (Merriam Webster, n.d.-a). Uncertainty, doubt, and hesitation are closely related to the concept of ambiguity, all pointing to the tendency to wander, waver, and change. Throughout the many phases that individuals with AN go through (e.g., discovery, recognition, diagnosis, treatment, recovery), ambiguity makes itself known. There is something ambiguous about the nature of AN that causes parents to struggle and for terror to set in. As one mother shared,

I’m thinking, “Oh my God,” I thought I knew. I thought I knew. I didn’t really, what it all entailed, and what was about to come and how it would throw her life into disarray, and our life into disarray, and I didn’t even know what to anticipate, what to expect, what was coming, what was happening . . . At the time she tells you that, my whole world fell apart. I cried. (Participant)

Discovery lingers

Discovery extends past the day parents are informed of the diagnosis. Although it may be automatic to think that after the diagnosis has been delivered, parents are onto the next assessment or treatment phase of their journey with AN, the discovery process still lingers. In many cases, the process of diagnosis and admittance to the hospital was such a hurried process that parents were left behind, left in the darkness with no knowledge of what exactly AN meant. As the days and weeks passed, seeing their child being attended to by professionals and watching their children adamantly resist the refeeding process, many parents remained unaware of what was happening, and only until they sought resources and attended parent workshops and support groups did they finally feel they had a grasp on AN, and thus their process of discovery came to an end. Accordingly, discovery also entailed education. Parents yearned for more information: “please teach us, like tell us what we are doing” (Participant), one mother shared. The experience of discovery is marked by a parent’s frantic search of trying to understand what one’s child is experiencing and whether they can help in any way. Aside from education, discovery also consisted of recognizing and fully understanding the chaos that AN would bring into their family life. Being told that one’s child has AN is heavy (ironically), but then seeing firsthand how AN torments one’s child brings the discovery full circle—it makes it complete. Nearly every parent recounted unique stories and realizations that happened during their discoveries that foreshadowed what they were dealing with, adding context to the diagnosis delivered. One mother shared,

And every time we would go back [to the hospital] she would lose more weight. And they would say whatever. “Your heart rate is this.” And it would scare [daughter]. And when we’d leave, like I would be bordering on crying as I’m driving away. “Like [daughter] what are you doing? You just have to eat.” She’s like, “I know, mama. Let’s go right now . . . I’ll eat, I’ll have a Boost.” And she would go home, and you know, eat a lunch or whatever and you know by after school, by dinner, it would all be gone again and she wouldn’t eat. And so, it would scare her, but by that point it was, things were too far gone. (Participant)

After realizing how far gone, how deep the claws of AN were sunken into her daughter was a part of this mother’s discovery. Seeing how much her daughter wanted to please her by eating yet was overcome with fear only a few hours later was a realization that her daughter was in extreme danger.

“I Can’t Tell Anyone”—Isolation Following Discovery

Along with the shock and fear that accompany the discovery, parents also experienced isolation. Although parents may have the support of their partner who is sharing their experience and concern for the child, others outside of this circle are kept at a distance, at least initially for many parents. Maintaining a distance from others served many reasons, some including wishing to respect a child’s request for privacy, a strategy to minimize questions from others, a parent’s belief that their child would recover at a rapid rate and reaching out to others for support would not be necessary, and a form of identity protection. When asked to explain her support network during the discovery, one mother explained,

It’s very isolating. You know, at the very beginning it was a “I can’t tell anybody” because I’ll have it wrapped up anyways, so what was the big deal in telling everybody. But I think that, for the longest time, I didn’t really tell anybody and then your whole world becomes consumed with it . . . and for a long time I didn’t tell anybody not because I was ashamed of it but just because it was so consumed every other part of my life and I just wanted to go and just be me and not have to talk about it . . . (Participant)

AN and the knowledge of it interfered and consumed parents’ lives and how they saw themselves in the world. The word consumed may shed light onto these parents’ experiences. The Merriam Webster (n.d.-b) dictionary defines consumed as “to do away with completely; to use up; to eat or drink especially in great quantity; to engage fully.” There is something ironic, yet perfectly fitting given the context. First, individuals with AN can be thought to be dwindling away both physically and psychologically due to their lack of nutritional consumption. Meanwhile, parents are observing that their child cannot eat a morsel of food without self-hatred. These parents’ lives are taken over, totally held captive as the AN engulfs the family, or what used to be of it, with its ravenous appetite. A parent’s daily routine becomes focused (if not completely) on their child’s AN. Work commitments are postponed or modified for some, the care of other children no longer feels equal to that of the attention placed toward the child with AN, and standard routines of life once never questioned become a war zone, like meal times, participation in extracurricular activities, and family gatherings. In these ways, AN consumes parents’ lives, taking over their identities, and forcing their focus that was once dispersed between various values and passions onto their child with AN.

By keeping the discovery hidden from others, parents were able to protect little parts of their lives, thereby leaving them untouched by AN. It seems as though once others discover what parents are going through with their children, the situation wraps around their identity as parents, making it very difficult for others to think of them as they once did—before the AN existed. By keeping some people unaware of what was unfolding at home and within the family unit, some parents were able to preserve their image as a parent without a child with AN—a parent who was not dealing with a crisis in their life and in their home. Isolation may be amplified when a parent’s grief is disenfranchised or deprived. When AN is kept private within the immediate family, this leaves some parents without an outlet to share their loss, and the privacy their child requests may feel like a burden to carry.

Negative impact on relationships

Contributing to the isolation is the challenging navigation of partnership within couples. Discovering one’s child is experiencing AN tests the strength of partners’ solidarity, commitment, and cooperation. For some parents, the discovery and following stages were tackled in unity, with parents supporting each other and knowing that when one was close to the verge of collapse, it was the other’s turn to step in and care for the child with AN and also the rest of the family. For others, however, the discovery that their child had AN added enormous stress to the relationship and was noted partly as a reason for parents’ separations (temporary and permanent).

It seems obvious that the development of AN within the child and within one’s family would have an impact on relationships within that unit. Without expectation or preparation, AN was presented to the family as its new preoccupation, requiring full-time attention. This change requires a settling-in period where individuals needed to figure out their roles and corresponding actions. In some partnerships, this transitional time did not end in resolve, and parental roles became fractured, with one allocated or believed to be the primary caregiver without a mutual agreement that that would be the case.

Maternal burden

Most times when there was disagreement between partners, it was mothers who bore the responsibility, placing an enormous pressure on them to fulfill their role, in most cases doing this while still taking care of the rest of the family. These siloed parenting roles led partners to feel like they were going through the discovery alone, as one mother shared:

My role was to do all of the discovery and stuff like that and then he would come, like he was very good if I said you know “when you do a family session you need to do this, we need to do that,” whatever. So, he would come along, but he didn’t take any sort of a point on anything which was consistent with how we did everything in our marriage. (Participant)

In addition to the distinct roles parents felt forced to take, the perception that the other parent did not understand AN or mental illness more generally caused rifts between partners. It seems that when one’s child is facing any kind of immediate danger, parents take it upon themselves to learn about the situation, to better support their child; this, however, was not the case in all families with children with AN. Mothers spoke about the tensions that AN had created between themselves and their partners and noted that some fathers’ inabilities to understand mental illness or the gravity of AN was beyond frustrating and, in fact, harmful to their relationship. Mothers found themselves having to educate their partners, telling them that AN was not a choice, was not a phase their child would grow out of, was not as simple as just eating, and was in fact serious. When describing her relationship with her husband, one mother shared,

It’s created a lot of frustration, isolation. You feel like you’re a single parent, let me put it this way. And in some ways, I have stopped expecting him to be involved and engaged, and then there’s no frustration there anymore because I stopped expecting it. (Participant)

Mothers may experience psychosocial loss more than fathers, in situations where fathers deny or do not grasp the severity of AN, or do not understand mental illness. As Doka and Aber (2002) indicated, when an individual faces an ambiguous loss, it complicates the grieving process as that loss might not be shared or acknowledged by others. Learning one’s child has AN is ambiguous in the sense that the child has not died, yet there is still grief over the situation and the uncertainty moving forward. In these relationships, if parents are together, mothers may feel the need to suppress their grief for the child, as they likely would not receive the support they crave from their partner, thus causing them to feel more alone in their experience of caregiving and adjustment.

“We’re Not Those People”

In addition to the shock and heart ache of knowing that one’s child is experiencing a life-threatening medical emergency, parents also found themselves questioning how they let things go on for so long. A feeling that parents were failures emerged during multiple interviews. Parents doubted their perceptions of the family they thought they had and found themselves questioning their parenting practices. In a powerful exchange, one mother stated,

The part where you get to the point where you realize like, you missed, like you just totally missed this like, how could you miss this for your child? . . . I would think all the time like “we’re not those people. We’re not those people.” We were all still together at the time and we were a functional family. We’re professionals, we take care of our kids. We drive them places, we eat dinner together, obviously we do all other things you’re supposed to do because I’d read all the books about what you’re supposed to do right. I wanted to be good at this. I wanted us to have a happy family. So, to find that that is not what happened was really, really painful like to come to that realization. (Participant)

This quotation not only speaks to the experience of coming to the realization that something was wrong and had been wrong for some time without one’s awareness, but also communicated the uncertainty she had in herself as a parent. When parents who tried hard to create a balanced, safe, and supportive life for their children realize that, despite their best efforts, their children are in serious danger, they cannot help but take a look back on life as they knew it. Furthermore, a sense of disappointment and shame is illustrated in this quote and was discussed generally with all participants. The expectation that if parents are together, supportive, encourage their children to be involved in extracurriculars, eat meals together, and so on, then generally the family unit will remain stable, successful, and happy was challenged.

Guilt and shame

The discovery also caused parents to question their competency and roles as mothers and fathers. Parents went through mental checklists of their lives with their children, trying to determine what it was that they did or did not do that contributed to their child’s AN. After learning that one’s child had been sick for many months, yet was flying under the radar of parent’s awareness, a crippling sensation of guilt was experienced:

What did I do wrong? I gave them all this love. I was so involved in their lives. They came home for lunch every day. I was there for them and stuff, so then you sort of go through all those things and, like, should I have done this? Should I have given them more independence . . . so I really took it as a judgment on myself . . . it was like a final report card for me, and I took it as my greatest failure. (Participant)

Feeling like one had failed their child was heavy in the air during discussions with parents. Honey and Halse’s (2006) findings similarly demonstrated that parents of daughters with AN reported self-blame and believed it was an inevitable consequence of having a child with AN. This perception of failing one’s child by doing or not doing something caring for them fractures the belief of being a competent parent, leading to skepticism of parenting practices. As one mother stated, “there was sort of a feeling of being a little bit robbed. I tried to do everything right and still got it so wrong” (Participant). When AN presents itself, it challenges parents’ thoughts of their competencies. Furthermore, after discovering one’s child has AN, parents belittle themselves with thoughts of, “now I really have to pay attention because I was not doing my job before” (Participant). This experience is also reflected in research examining the experience of parents of young children with mental health concerns. Harden (2005) equates raising a child to a “socialization project,” the success of which is measured both privately and publicly. Parents naturally wish for the best outcome: a happy, healthy child; however, when this is not achieved, parents take the outcome harshly and wear it as a personal failure, a concept referred to in the carer literature as parental responsibility (Backett-Milburn & Harden, 2004). This concept reflects the assumption that parents are morally responsible for their children and causally responsible for the behavior of their children (Wyness, 1997). Hence, when a child develops AN, the concept of parental responsibility aids in the explanation of parents feeling like failures who are responsible for this development.

A Parent’s Intuition

Watching one’s child undergo changes where the source is unknown is a cause of alarm for parents. Noticing that something was off in their child caused parents to enter a state of constant observation and vigilance—acting like gatekeepers to their children, yet not having the privilege of their child’s inner world. One father shared, “It was horrible because you’re watching somebody decline in front of you and you’re thinking ‘I should stop this, but I don’t know how’” (Participant). Through conversing with parents, it became clear that in the months leading up to the discovery, they experienced periods of certainty that their child had an ED, or even cancer, to periods of hesitation that anything was wrong. While lost in the confusion of what was happening, parents try to make sense of their reality as best as they can, which means filling in the gaps with the answer most logical and available to them.

Parents also asked others whether they had noticed any changes in their children. Parents questioned their inner gauge on their children, yearning for consultation. When changes have been occurring for a period of months, it may be difficult for parents to be as sure as they once were that things were different. Physical changes are more noticeable and immediate to individuals not spending as much time with that person; this is perhaps why some parents checked with others. One mother explained,

As soon as it got to a point where . . . As I put all of the pieces together, I was talking about it to anybody and everybody who would listen, because I needed to know if you were seeing . . . You know, for example, are you seeing the same things that I’m seeing? So, I had conversations with his dad. I had conversations with my parents, my ex’s family members—his mom and sibling, my girlfriends who had seen him over that time span, and not noticed all of the behaviours, of course, but noticed the significant drop in weight and were worried that, honestly, he had cancer. (Participant)

Seeking advice from professionals

These uncertain phases and asking others for their input were amplified by medical and mental health professionals’ opinions on the matter. After periods of hypervigilance of their children, many parents scheduled appointments with their family doctors or walk-in mental health consultations to discuss what they had witnessed of their child. All initial appointments occurred without their child being there, and most happened without their child’s knowledge. These appointments speak to the torturous uncertainty parents experienced and demonstrate the lengths parents went through to find the answers for which they were desperate.

In some cases, professionals confirmed the parent’s suspicions and asked that the child be brought in for immediate assessment. In these instances, parents felt relief and validation, as for all of those months when they felt something was off, there was and it has now been confirmed by someone with authority. Although there was concern for what the future held for their child, these instances also brought relief and hope. Parents no longer had to be solely responsible for the care of their child. The confirmation from professionals also strengthened the parents’ beliefs in themselves regarding how well they knew their children. In a way, this confirmation acted as a badge of validation. However, each time parent’s concerns were validated, they were also dismissed by health professionals, leaving parents to feel an even more uncertain—being convinced there was something wrong, having one’s child deny it, and now having a health professional not taking it seriously either, leading the parent right back to where they started—ambiguous terrain. These interactions caused parents great unrest and led them to question their intuitions. One participant shared his and his wife’s turbulent experience with health professionals when trying to determine what was wrong with their daughter:

The nutritionist said, “she’s thin, but not unhealthy.” What it did, it gave my wife and I the feeling of “okay maybe we are wrong.” It was somebody else that we were hoping would say “okay we have a real problem here.” All of a sudden you start second guessing this grand plan that you’ve got here. It came in waves. Go see the nutritionist, she gives us that answer, and now, “oh my God, are we over reacting?” To then, all of a sudden saying “no we aren’t over reacting.” Then we knew we had to get some help. (Participant)

During the discovery phase, parents are looking for reassurance and help from professionals to understand what is happening to their child. Parents rely on professionals to provide accurate information and are consumers of discourses that place trust into doctors’ hands. To be caught in such an ambiguous situation understandably makes parents uneasy, and those who are dismissed by professionals are sent back into the hypervigilant and self-questioning stages of discovery. One couple explained that after months of watching their son’s weight drop and observing his nutritional intake dwindle, they convinced him to accompany them to the doctor’s office, only to be told that he was in perfect health. The tone in the mother’s voice after sharing this interaction was beyond frustrated and deflated, and she stated that immediately she knew that the doctor’s response would put her back several steps with her son, with whom she was already struggling to connect. Experiences like these are detrimental to a parent’s progress in identifying what is happening to their child and also to their belief in themselves as competent parents, in tune with their child’s needs.

Betrayal and Loss

Almost all of the parents interviewed described a close relationship with their children, marked by trust and open conversations prior to the development of the AN. As their children became sick, they described a change in these relationships. Many interactions were portrayed as “deceitful,” describing how the once open relationship had been transformed into a secretive interaction style where honesty was no longer the expectation. Whether children no longer confiding to their parents was considered a betrayal or parents felt like the intentional holding back of the whole story was deception, the relationship felt tainted. The idea that a parent and child could be so connected to each other, have shared passions, and spend great deals of time together appeared to make this a very hurtful experience for parents, especially mothers of daughters. Based on the literature on AN and how this illness thrives in secrecy and gains momentum (Hamkins, 2005), it may not be the child’s intentions to purposely lie to their parents; however, this filtering of information was felt strongly by parents.

In a sense, AN temporarily fractured the relationship between parents and children. As Hamkins (2005), a psychiatrist, argued, AN isolates the afflicted individual to manipulate and brainwash, thus pulling that individual from family and friends. As one mother shared,

When I look back at it, that’s probably what bothers me the most, it’s kind of the deceit and the dishonesty . . . we knew something was wrong, and we would ask, and yet we would be getting told “no, no,” but yet we knew there was . . . in our mind there was dishonesty . . . and then when we just were hitting roadblocks all the time it was sort of that deflation again and that distrust again and the deceit. (Participant)

Feeling lied to under normal circumstances is difficult to experience and is amplified for parents whose intuitions are alerting them that something is wrong, yet their child will not provide them with the information they seek. A heaviness lingers when considering that parents feel deceived by a child experiencing a horrific mental illness with severe medical complications.

Discussion

Parents’ experiences illustrated that they were devastated by the discovery and by the illness, questioning their competencies and actions as parents. The pieces of parents’ lives fell apart around them when discovering that their child was in danger, yet the reasons for the development of AN and answers to help that child in their recovery were unknown. It was evident that the discovery was a continuous, ambiguous process. Finally, interviews exposed the ways parents coped with the devastating impacts that AN had on their child, their family, and themselves.

The results of this study demonstrate that parents of children with AN desperately need additional information and support, especially in the early stages of their child’s illness. Specifically, a discrete period of time where parents are given all necessary information about the disorder, treatment options, and practical information regarding caring for their child while either waiting for services to commence or during the in-between stages where children are advised to stay at home would be advantageous. As such, psychoeducation formats, either individually or in small groups, would be helpful as parents may feel better prepared, have a greater understanding of AN, and have a general expectation that life as they are used to is probably going to change. Although information groups already exist at ED programs, these groups tend to focus on preparing the individual with the ED and their family for treatment (i.e., 1-hour overview of treatment options and expectations, whereby the youth/family is invited to consider pursing treatment with the program). Alternatively, what may be more important is a psychoeducational group focused on the parents/caregivers in which they are presented with information and are given ample time to ask questions.

Carer Intervention Groups

Moving beyond providing parents with more information, there is accumulating evidence to suggest the benefits of skills-based groups to caregivers of individuals with EDs.

Carer skills groups have been described as a brief course in the management of EDs, in which carers acquire skills so that they can act as a coach to the person with the ED during their treatment and recovery (Treasure et al., 2008a). Skills intervention groups focus on several topics: behaviors that may be enabling or accommodating the ED, interpersonal effectiveness, and adaptive coping strategies (Macdonald et al., 2011; Schmidt & Treasure, 2006). Skills groups are offered in formats including workshop presentations, DVD/carer manuals, and phone coaching, all rated as highly acceptable by carers (Sepulveda, Lopez, Macdonald, & Treasure, 2008). Research examining the effectiveness of these groups suggests that participation decreases perceived carer burden and distress while also reaching a wider audience than traditional on/off information sessions (Macdonald et al., 2011). Similar groups exist to support carers of individuals with various mental health concerns and have also demonstrated that participation in these groups has led to enhanced self-identity and acceptance of the caregiving role, adoption of new coping skills, and more knowledge of the illness (Chien et al., 2006). Furthermore, carers reported feeling empowered as they acquired information about the illness and benefited from the mutual support of other carer members in the group (Chien et al., 2006). Of note, Macdonald and colleagues (2011) found that participants believed that participating in this group toward the beginning of their loved one’s ED would have been most helpful. Thus, by bringing parents who recently discovered that their child had AN together, experiences of shame, guilt, and personal failure would be discussed, perhaps enabling parents to see that they are not alone and have the capacity to rebuild their life routines, relationships, and confidence in themselves as parents.

Carer skills interventions are widely accessible and easily implemented by service providers, as most include self-directed learning (Hibbs et al., 2015). Parents would benefit if given the opportunity to participate in a skills-based group and/or self-directed manuals/DVDs providing them with necessary information to support their child. Furthermore, we recommend the establishment of such skills intervention groups to service providers that have yet to adopt these evidence-based practices. Few clinical resources or expertly skilled clinicians are required for this intervention to be effective, thus proving as an additional benefit to recommending this service to caregivers.

Future Research

This study examined how parents discovered their child had AN. In future research, the ability to interview both youth and parents together, and engaging them in such a way as to make both parties comfortable with full disclosure, would lead to even richer accounts of the experience of discovery. For example, the recurring experience of children reaching out for help and disclosing to their parents that they were worried about the thoughts they were having, constantly feeling cold, or feeling nervous to eat their lunches at school in front of others could have been further investigated. These instances sparked several interpretations from both the research team and the parents; however, if their children could have commented on what they wished to accomplish by sharing this information with their parents, it may have furthered the conversation and interpretations could have ultimately gone deeper. These instances of asking for help were all followed by a period of time when the child became sicker, more convinced of the AN thoughts, and more compelled to restrict. As AN has a tremendous impact on families, interviewing all members of the family who are involved would allow for dynamic conversing, opportunities for further probing, and offer researchers insight into the undercurrents of the family unit. Future research including both parties could be intimately revealing and have significant clinical implications for practitioners working with families.

Limitations

This study examined the unique experiences of parents who discovered their child had AN. Although we believe the interpretations presented are meaningful and thought-provoking, we acknowledge that the interpretations offered may not be identical to interpretations made by other hermeneutic researchers analyzing the same data. In fact, this is not just a limitation of the present study, but of all interpretative work (Moules et al., 2015).

Conclusion

This was the first research to examine the experience of discovery of AN, from the parental perspective. The topic of discovery is entirely missing from the ED literature; thus, this study offers a unique view into how parents often feel left behind and unsure of how to support their children during these difficult times. Based on interviews with parents, it was apparent that parents felt unsupported in their experience of discovery and ultimately required additional supports. Parents expressed guilt and shame and reported great burdens on caregiving and on their relationship dynamics. The findings from this study highlight the importance of offering skills intervention programming to parents early into their child’s illness. Equipping parents with knowledge and a better understanding of the maintaining factors of AN, family patterns, and effective communication styles would be of benefit to this group. As many parents of children with AN frequently report, while their child is receiving services, they are left with very little and do not feel ready or able to care for their child during services or after they are discharged. This research highlights the importance of taking care of parents, who in turn can share this new knowledge and sense of being supported into caring for their own child with AN.

Footnotes

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Emily P. Williams

Author Biographies

Emily P. Williams will soon be registering as a psychologist in Toronto, Ontario after completing her PhD in Counselling Psychology. She provides assessment and treatment for adults with eating disorders, body image concerns, mood and anxiety disorders.

Shelly Russell-Mayhew is a registered psychologist and Werklund Research Professor in Counselling Psychology in the Werklund School of Education, University of Calgary. She studies weight-related issues like body image (perceptions, attitudes, and experiences about the body), disordered eating (e.g., unhealthy methods of weight change), weight-related issues (e.g., obesity and eating disorders) and professional conversations and interactions about weight (e.g., weight bias). For more information:

Nancy J. Moules is a professor and associate dean of research in Faculty of Nursing at the University of Calgary. She is Chair of Canadian Hermeneutic Institute, Editor of the Journal of Applied Hermeneutics, and lead author of the book Conducting Hermeneutic Research: From Philosophy to Practice.

Gina Dimitropoulos is an associate professor at the Faculty of Social Work, University of Calgary. She is a global expert in qualitative and mixed methods research, with a focus on child and youth mental health, systems navigation and collaboration, child maltreatment and trauma, health services research, and eating disorders.

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