Introduction

Eating disorders have showed a significantly increased incidence in recent decades ¹. Anorexia nervosa ² and bulimia nervosa ³, two potentially life-threatening and persistent disorders, have the highest mortality rate out of any psychiatric complication ⁴. Other common eating disorders include binge eating disorder, avoidant restrictive food intake disorder (ARFID) and other non-specified feeding and eating disorder ⁵.

Affecting the health of large population groups worldwide, these conditions require both collective and governmental action to be effectively addressed. Such issues are not only medical but also social, environmental, political, and economic, as they influence overall well-being ^{2 , 6 , 7}. This phenomenon represents a growing and complex public health concern, further intensified by inconsistencies in healthcare systems and the pervasive influence of social determinants of health such as poverty, inequality, and limited access to care.

Addressing these challenges requires global health policies involving governments, international organizations, nongovernmental organizations, and public-private partnerships to promote equitable access to care. Developing international health strategies shaped by all these stakeholders is essential to address transnational health challenges and promote equity in access to healthcare ^{5 , 6}.

Failures in management and coordination across care levels, along with the unpreparedness of primary care to identify and manage eating disorders and the under-resourced, overburdened specialist services unable to accommodate high referral volumes, create significant weaknesses in the healthcare system ⁶. Thus, treatment becomes a challenging and long-term procedure for families and patients ^{2 , 6 , 7}.

Family plays a critical role in eating disorders by taking an active position in the care and rehabilitation process of individuals with mental disorders. Psychosocial care marks a significant shift from the hospital-centered model which often blamed or excluded families from the care process ⁸. Mental health policies is one of the cornerstones for building a more supportive, welcoming, resilient, and just society ⁹.

The family of patients with eating disorder is no longer seen as peripheral but as an active agent in therapeutic outcomes, assuming a key role both in providing emotional and practical support to patients and in promoting a broader social support network. Moreover, family involvement is crucial for preventing relapse, supporting patients during crises, and assisting in patients’ reintegration into the community ^{10 , 11}. Family education programs and psychosocial support are common practices aimed at informing family members on how to cope more effectively with eating disorders ¹².

In cases of a parent with an eating disorder, their parenting capacities may be compromised. Studies indicate that mothers with eating disorder often face challenges during pregnancy and parenthood demands ^{13 , 14}. Understanding the complexities of parenting while living with an eating disorder is essential to develop effective strategies supporting both affected parents and their children.

When a child develops an eating disorder, however, parental roles and the overall family dynamic may be profoundly disrupted. The ripple effects within the family system can be substantial ^{15 , 16}, especially as symptoms often emerge during critical periods of child development and family formation.

Eating disorders’ chronic nature and high comorbidity with other mental health conditions suggest that their impact extends beyond individual symptoms, influencing interpersonal relationships and contributing to caregiver distress ^{17 , 18 , 19}. However, the lack of clear evidence regarding these effects presents a significant challenge to developing comprehensive treatment approaches that address both individual recovery and family well-being ²⁰.

While extensive research has documented the influence of family relations on eating disorders development ^{15 , 21 , 22 , 23 , 24 , 25 , 26}, there remains a critical gap in our understanding of how these conditions affect the broader family system. Despite the well-established bidirectional relationship between family dynamics and mental health outcomes ^{27 , 28 , 29}, eating disorder-specific effects on family functioning and parent-child interactions remain understudied.

Without a thorough understanding of how eating disorders influence family functioning and parent-child relationships, clinicians face challenges in tailoring interventions that effectively support both the affected individual and their family members ^{10 , 30}. This research gap is particularly concerning given the increasingly recognized importance of family-based interventions in treatment ^{10 , 31 , 32}.

Given this context, we formulated the following research question: What are the multifaceted impacts of eating disorders on family functioning? By investigating these interconnections, we contribute to developing more effective family-centered interventions and support strategies in family contexts affected by eating disorders. Moreover, a meta-synthesis design enables the systematic retrieval, expansion, and reinterpretation of knowledge beyond initial descriptions, creating more than just a sum of sources and establishing a fundamental connection between the results while identifying gaps and issues that require further exploration and debate ³³.

Methods

Design

The systematic review and meta-synthesis were conducted following ten steps ^{34 , 35 , 36 , 37 , 38 , 39}: (1) Development of the research question based on the SPIDER strategy; (2) Definition of selection and exclusion criteria, and choice of appropriate databases for the research area; (3) Elaboration of the search strategy based on specific descriptors for each database; (4) Database searches with validation by another researcher who independently evaluated the information; (5) Screening and selection from titles and abstracts and reviewing the results with a second independent researcher and using the Rayyan tool (https://www.rayyan.ai/); (6) Calculation of the Cohen’s kappa index of inter-rater agreement ⁴⁰; (7) Full-text reading and final selection of studies; (8) Qualitative analysis of the methodological procedures of the reviewed studies based on the Critical Appraisal Skills Program (CASP) ⁴¹; (9) Coding the results of selected articles using the QDA Miner Lite 9.0 program (https://provalisresearch.com/); and (10) Description and analysis of the material.

This study was registered on the International Prospective Register of Systematic Reviews (PROSPERO; protocol CRD42024615832) ⁴². To report the essential elements that should be included in a qualitative evidence synthesis, the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guide was used ⁴³.

All stages were performed by two reviewers with prior expertise in meta-synthesis and qualitative research methodology, which facilitates new interpretations of an experience, offering a fresh conceptual understanding of the synthesized results, surpassing previous findings and developing new understandings. Ethics approval was not required, as only published studies were reviewed.

Research question, eligibility criteria and research strategy

Given the research question formulated (What qualitative evidence is available in the scientific literature regarding family members’ perceived impact of anorexia and bulimia nervosa on family dynamics?) evidence was retrieved using the SPIDER⁠ strategy ([S] sample; [PI] phenomenon of interest; [D] study design; [E] evaluation; [R] research type), as it is particularly suited to qualitative research methods and ensures greater study rigor.

Eligibility criteria included: (i) primary qualitative studies originally published in English, Portuguese or Spanish; (ii) studies consistent with the research question developed using the SPIDER strategy; and (iii) inclusion of family members’ perceptions (parents or siblings) in the results. Exclusion criteria consisted of: (i) quantitative, mixed, secondary and literature review; (ii) gray literature like theses, dissertations, monographs, books or chapters; and (iii) letters to the editor, editorials, commentaries, opinion articles, and abstracts.

Databases were selected by their relevance to the field of knowledge, and by their national and international scope. SPIDER search strategy was defined by combining the descriptors of each acronym, choosing the appropriate descriptors for each database. Bibliographic search used the Boolean operators OR between descriptors of the same acronym and AND between each one of them, using a single search strategy adapted to each database that includes: (S1 OR S2...) AND (Pi1 OR Pi2...) AND (D1 OR D2...) AND (E1 OR E2...) AND (R1 OR R2...). “Advanced search” tool was used in the databases. Supplementary Material (Box S1; https://cadernos.ensp.fiocruz.br/static//arquivo/suppl-e00181525_1729.pdf) presents a track of descriptors compiled from Health Science Descriptors/Medical Subject Headings (DeCS/MeSH).

Paper retrieval and study selection

Two independent reviewers conducted the search in September 2024 across nine databases (Academic Search Premier, CINAHL, LILACS, MEDLINE, PubMed, PsycInfo, SocINDEX, Scopus and Web of Science), initially retrieving 2,269 articles.

Article selection was refined using Rayyan software for systematic reviews ⁴⁴ which improves screening efficiency and accuracy, ensuring transparency and reliability ⁴⁵. After removing duplicate articles (n = 61), two independent and blinded investigators designated which studies should be considered for inclusion or exclusion by screening the titles and abstracts. Subsequently, the blinding of the Rayyan tool was removed to show the concordances and disagreements between the reviewers.

Cohen’s kappa index assessed inter-rater agreement ⁴⁶ at a value of 0.845, indicating excellent agreement. A total of 33 articles met eligibility criteria and were read in full, except for one that was not retrieved. After full-text review, eight studies were excluded following discussion between the two researchers, the reasons of which are provided in Supplementary Material (Box S2; https://cadernos.ensp.fiocruz.br/static//arquivo/suppl-e00181525_1729.pdf). Any discrepancies were resolved by a third reviewer.

Studies identified by unsystematic searches and references from selected studies (n = 4) were also included to ensure a more comprehensive coverage, resulting in a final meta-synthesis corpus of 28 articles. Box 1 details information on the articles retrieved.

Figure 1 brings a flowchart explaining the selection process and reasons for exclusion developed based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines ⁴⁷.

Figure 1. Figure not reproduced.

Methodological quality appraisal of the articles

The methodological quality of the studies was assessed using the CASP Qualitative Checklist ⁴¹, which evaluates key aspects of qualitative research, including: objective and its relevance, methodology, the clarity of ethical procedures, and data presentation. Two independent researchers conducted the assessments and resolved discrepancies by consensus. Methodological consistency of all studies was considered appropriate for qualitative research, showing consistency across almost all findings, except for ethical considerations, in which inconsistencies were identified in 12 studies. Box 2 presents this process in detail.

Data analysis

Data were analyzed using the reflexive thematic analysis method according to the following structure ³⁵: (1) Full reading of the texts performed using QDA Miner Lite software to generate codes through line-by-line analysis; (2) Reviewing and grouping the codes into similar themes, which formed the descriptive categories derived from the original data of primary studies; (3) Developing analytical themes through interpretation of these categories. The process was discussed and validated by the research team.

Confidence in the review findings was assessed by GRADE-CERQual (https://www.cerqual.org/) ⁴⁸. This approach focuses on four key components: methodological limitations, coherence, data adequacy, and relevance of the findings from the included studies to the review question. Confidence in each finding can be rated at one of four levels: very low, low, moderate, or high.

Results

Most of the 28 articles ^{49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 , 62 , 63 , 64 , 65 , 66 , 67 , 68 , 69 , 70 , 71 , 72 , 73 , 74 , 75 , 76} were conducted in the United Kingdom (n = 8) ^{51 , 54 , 59 , 60 , 64 , 67 , 70 , 72}, followed by Brazil (n = 4) ^{55 , 56 , 69 , 74} and Norway (n = 4) ^{62 , 65 , 66 , 71}. Other countries included Australia (n = 3) ^{53 , 73 , 75}, Israel (n = 2) ^{49 , 58}, the United States (n = 2) ^{52 , 61}, Ireland (n = 2) ^{57 , 76}, Sweden (n = 1) ⁵⁰, Canada (n = 1) ⁶³, and France (n = 1) ⁶⁸.

Most studies used individual interviews (n = 21) ^{50 , 51 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 , 62 , 63 , 65 , 66 , 67 , 69 , 71 , 73 , 74 , 75} for data collection, whereas only seven employed focus group ^{49 , 52 , 64 , 68 , 70 , 72 , 76}. Notable among data analysis approached were thematic analysis (n = 11) ^{49 , 55 , 56 , 57 , 61 , 64 , 67 , 69 , 70 , 74 , 75} and interpretative phenomenological analysis (n = 7) ^{51 , 53 , 54 , 58 , 60 , 68 , 72}. The review sample comprised 322 participants - 157 mothers, 50 fathers, 66 siblings, and 49 women diagnosed with eating disorders.

Analysis of the 28 studies generated 110 codes during the initial open coding phase. After review, the remaining 47 codes were organized into four descriptive themes: (1) Anorexia nervosa/bulimia nervosa within the family environment: meanings attributed to the symptoms; (2) Anorexia nervosa/bulimia nervosa dominance within the family system: care that also causes harm; (3) Challenges in accessing care: individual and social barriers; (4) Pathways to coping: supporting the whole family - a public health issue. From this, two analytical themes were developed: (1) Interplay between anorexia/bulimia nervosa and family relations: a complex relationship that feeds on itself; (2) A comprehensive approach to care that embraces all family members. Box 3 details the results.

Overall, quality assessment of the included studies provided moderate confidence for the review findings. However, many studies poorly discussed or failed to address the reflexivity of the research process. Differences in sample sizes were observed regarding gender distribution, with men (fathers or brothers) being underrepresented compared with women. Box 4 provides the GRADE-CERQual assessment for each finding.

Descriptive theme 1 - Anorexia nervosa/bulimia nervosa within the family environment: meanings attributed to the symptoms

This theme explores the interplay between family dynamics and anorexia nervosa/bulimia nervosa, analyzing how they influence one other in a complex manner without a clear distinction between cause and effect. Studies indicate that families affected by eating disorders often present weak or conflicted emotional bonds which may precede the onset of clinical symptoms ^{49 , 55 , 56 , 69 , 73}. These families display extreme patterns - from high demands to emotional neglect, leading to poor communication and low cohesion.

With anorexia nervosa/bulimia nervosa onset, the mother-daughter bond deepened significantly (“But now we’re really, really, really close, and she’s the person I’m closest to in the world” ⁶⁰ [p. 36]), creating intense emotional interdependence ^{49 , 51 , 55 , 56 , 60 , 69}. However, in this symbiotic dynamic, the lack of clearly defined boundaries between mother and daughter creates a dependency so severe that any attempt at separation fuels in the mother as a profound sense of betrayal or disappointment, evoking ambivalent feelings in the daughter: “...I feel kind of bitter toward my mother, you know. I can’t really explain what this feeling is. Maybe resentment, a mix of resentment and sadness for the things she has put me through” ⁶⁹ (p. 6, our translation).

In contrast, patients’ relationship with the paternal figure was often characterized as distant and absent, yet marked by significant conflict ^{55 , 56 , 60 , 69 , 73 , 74 , 76}. Studies noted poor father-daughter compatibility since “a man will never understand a woman’s insecurities” ⁶⁰ (p. 36). Fathers tended to adopt a pragmatic caregiving approach, causing frustration and tension: “...[I] felt like a lot of anger towards him [father] and I don’t know whether that’s because he’s been telling me practically the things which I should be doing” ⁶⁰ (p. 37).

Living with an authoritarian and violent paternal figure profoundly impacted the lives of many participants, leading to traumatic events that can negatively affect their children’s emotional development as illustrated by one participant, who shared a traumatic experience involving a meal scene: “I looked at him and I was like, ‘Dad, I don’t eat fish.’ And he was like, ‘Well, you’re going to eat it.’ (...) And he shouted at me and made me eat it” ⁷³ (p. 8).

Deterioration of the marital bond also seems to be recurrent ^{55 , 60 , 69}, with children often positioned at the center of parental conflicts, either mediating disputes or having their illness used to avoid the couple’s own issues, which “makes it quite difficult for all of us to let go of the anorexia” ⁶⁰ (p. 38). This entanglement is often distressing, as one daughter put it: “I literally step in as their therapist” ⁶⁰ (p. 38).

Moreover, studies suggest that the parents of individuals with eating disorder often have a background of dysfunctional attitudes and behaviors related to food and body image ^{57 , 61 , 69 , 73 , 74 , 75}. These patterns reflect a family inheritance in which eating habits, body perception, and emotional expression are passed down across generations: “I think part of the reason that I feel like I have a weight problem is because my mother had a weight problem” ⁶¹ (p. 9).

Conversely, many participants acknowledged using their symptoms to avoid conflict and cope with trauma ^{55 , 60 , 72 , 73 , 75}. One described anorexia nervosa as “desirable” ⁶⁰ (p. 37) during arguments, offering control and familiarity. In this context, food also provided comfort and emotional security - “to hold it and feel comforted that it was still there” ⁷⁵ (p. 12). Others saw eating disorder as a way to assert identity and resist expectations ^{60 , 75}: “...I was kind of just a good girl and I think now this is the first time that I’ve ever not done what I was told” ⁶⁰ (p. 37).

Descriptive theme 2 - Anorexia nervosa/bulimia nervosa dominance within the family system: care that also causes harm

This topic examines how anorexia nervosa/bulimia nervosa gradually come to dominate family dynamics, with its chronicity reshaping bonds and caregiving roles. Individuals often feel trapped in ongoing suffering ^{49 , 53 , 55 , 56 , 58 , 61 , 68 , 72 , 75}: “as years passed with anorexia nervosa, I felt trapped and traumatized from being unable to heal and recover” ⁷⁵ (p. 10). A hard-to-break cycle given the emotional complexity sustaining it. One sister observed a perverse sense of pleasure in maintaining this pattern: “...[she] feels she deserves it, and so the fact of inflicting that sort of thing on yourself, it gives you a good feeling, in the sense that you deserve it...” ⁶⁸ (p. 5).

When the disorder affects adult women, especially mothers, symptom manifestation often becomes apparent within their motherhood experiences. In these cases, the disordered eating can significantly undermine maternal caregiving ^{49 , 53 , 55 , 56 , 58 , 61}. As one participant reflected: “getting kind of obsessed with the idea of being perfect. Perfect lover. Perfect wife. Perfect mother. Perfect anorexic” ⁶¹ (p. 8).

Family members often experienced the anorexia nervosa/bulimia nervosa onset with a profound sense of estrangement ^{50 , 51 , 59 , 62}, as if “she was a completely different person” ⁶² (p. 84) or as “the devil that’s got into my daughter” ⁵¹ (p. 293). This produced increasingly fragile bonds, as emotional distance and frustration over denial or dishonesty about the illness weakened family connections ^{59 , 62 , 64 , 66 , 69}.

As the eating disorder progressed, the home became chaotic ^{49 , 50 , 54 , 57 , 59 , 62 , 66 , 69 , 70} and “horrendous” ⁵⁷ (p. 144). One sister shared: “...suddenly it was okay to shout and scream at home, over every little thing. It is as though this one person [the sister with the illness] changed the rest of the family...” ^{66 )} (p. 4). Daily routines were dominated by eating disorder-related demands ^{50 , 51 , 57 , 59 , 62 , 65 , 71 , 75}, with mealtimes becoming especially stressful: “It affects everything, from morning to evening. Dinner, diets, meals...” ⁶⁵ (p. 5). Some families also faced serious financial and work disruptions due to treatment costs and caregiving responsabilities ^{50 , 51 , 53 , 57 , 64 , 65 , 67 , 72}: “It is like a second mortgage” ⁵⁷ (p. 144).

Researchers point out that family communication is also significantly affected ^{57 , 62 , 66 , 68 , 69 , 76}, requiring cautious dialogue or avoidance of certain topics to prevent conflict and emotional distress: “you’d have to think about what you are going to say before you say it” ⁷⁶ (p. 997). Over time, this can result in weakened relationships, creating distance and an “empty space” ⁶² (p. 86) among family members ^{50 , 54 , 59 , 62 , 67}.

Many participants reported deep loneliness and isolation ^{50 , 51 , 53 , 54 , 55 , 57 , 60 , 62 , 63 , 64 , 68 , 71 , 75}. One shared how the diagnosis created distance from her family: “It’s like somebody put a box over you...” ⁶⁰ (p. 37). Another noted the ill person withdrawing into isolation: “...you shut yourself up, inside your own bubble...” ⁶⁸ (p. 5). Families also avoid social interactions - no longer traveling, hosting friends, or going out to eat, “because we wouldn’t leave her on her own” ⁵¹ (p. 391).

Families often felt constant worry and fear about symptom severity ^{50 , 51 , 57 , 62 , 63 , 64 , 68 , 69 , 72 , 75}. They feared both physical decline and uncertainty about recovery: “there will always be signs... more on the inside with the after-effects. Because on the outside, they can be wiped out if you want...” ⁶⁸ (p. 5). Uncertainty about managing the emotional and relational challenges in caregiving increased this concern ^{50 , 51 , 59 , 64 , 65 , 67 , 71 , 72 , 76}. Many struggled between accommodating the symptoms and confronting the disorder, as one participant expressed: “...you want them to get better... But you also want peace...” ⁵⁹ (p. 494). This dilemma often caused significant strain: “uncertainty can be imprisoning” ⁷² (p. 1343).

In response to this fear, parents felt a deep urge to protect their children ^{51 , 52 , 54 , 57 , 59 , 72 , 75}: “I think it’s because it’s your child - you would do anything. It’s such a powerful instinct to protect them...” ⁷² (p. 1343). But this resulted in caregiving beyond typical parental roles ^{49 , 53 , 62 , 65 , 66 , 70 , 71 , 75}: “I felt I had to take on so many responsibilities that were far beyond being a mum” ⁶⁵ (p. 5). At times, this imbalance sometimes led to role reversal, with children caring for their parents. As one mother shared, her child would say: “C’mon, up you get, let’s go and have a shower...” ⁵³ (p. 513).

Caregivers often became overwhelmed ^{50 , 51 , 52 , 59 , 62 , 63 , 64 , 65 , 67 , 68 , 69 , 70 , 71 , 72 , 75 , 76}, describing emotional exhaustion: “...you know she feels she has to be by my side and the way to do that is to be an anorexic... it’s so, so draining...” ⁷² (p. 1345). Many struggled to juggle personal, family, and work demands, often neglecting their own needs: “...I feel bad to think of my own needs...” ⁷² (p. 1343). This burden mainly fell on mothers, especially when fathers were less involved: “you feel like you’re a single parent” ⁶³ (p. 1827).

Caregivers commonly experienced feeling powerless ^{50 , 51 , 54 , 59 , 62 , 63 , 68 , 75}, describing it as “going round in circles” ⁵⁹ (p. 495) or being “boxed into a corner” ⁵⁹ (p. 497). This powerlessness could evolve into “feelings of anger” ⁶⁸ (p. 5), particularly when the ill person resisted change, leading to perceptions of “there’s no hope” ⁵¹ (p. 396). Guilt was also pervasive, with some caregivers feeling responsible for the illness ^{50 , 51 , 54 , 57 , 59 , 63 , 69}, describing it as their “greatest failure” ⁶³ (p. 1827), regretting having “missed” ⁶³ (p. 1827) something crucial, or believing they were “not strong enough” ⁵⁸ (p. 496).

Another prevalent feeling was that of being forgotten or having no space for one’s own concerns, particularly among siblings ^{62 , 65 , 66 , 67 , 70 , 71 , 75}. Some questioned their place in the family: “do I exist in this world, really, or is it just her?” ⁶² (p. 87); others felt guilty for needing support: “...I felt so guilty for reaching out for help because I wasn’t the one who was struggling here, it was my sibling” ⁷⁰ (p. 4).

Descriptive theme 3 - Challenges in accessing care: individual and social barriers

This theme reveals the social and personal challenges families face when coping with anorexia nervosa/bulimia nervosa which often intensify their suffering. Participants described pressure from a society that idealizes thinness, leading to intrusive body-related comments, even from family members ^{55 , 56 , 69 , 75}. Discrimination and rejection by peers and relatives also emerged in their narratives, as one participant shared being referred to by family members as the “evil and parasitic twin” ⁷⁵ (p. 8).

Parents struggled to recognize the eating disorder or perceiving its severity ^{54 , 57 , 62 , 63 , 70 , 75}. Changes were seen as simply part of “growing up and being a teenager” ⁵⁴ (p. 46), were obscured by their children’s lies, or even praised by the parents for fitting the thin ideal. Even when signs were noticed, a sense of confusion prevailed: “when something is wrong in your house, you definitely know - but we didn’t know what” ⁶³ (p. 1824). Overwhelmed by uncertainty, parents became hypervigilant, seeking clarity wherever possible. As one mother stated: “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...” ⁶³ (p. 1828).

Moreover, complexity of the diagnosis alongside the stigmas and stereotypes surrounding mental disorders hinders its understanding. Participants reported facing barriers due to misconceptions that reduced eating disorders to eating issues ^{50 , 52 , 54 , 55 , 59 , 60 , 61 , 62 , 63 , 66 , 68 , 69 , 71 , 72 , 75}. One mother’s account reflects the discomfort of being judged by others regarding how she should raise her daughter: “everybody seemed to think the easiest solution was to sit her down with a meal” ⁵⁴ (p. 52).

Such limited understanding frequently resulted in misunderstandings that further distanced individuals (“there’s always going to be a barrier that they’re not going to understand” ⁶⁰ [p. 37]) and families from support (“you know people don’t seem to have much sympathy because they see it as a self-inflicted thing” ⁵⁴ [p. 52]). This difficulty in understanding anorexia nervosa/bulimia nervosa can foster denial, hinder recognition of severity, and delay treatment ^{54 , 68 , 69 , 75}.

Eating disorders are an experience often surrounded by a silent secrecy, a secret that is often sustained by what is left unsaid yet still felt by others, creating an invisible barrier between the suffering individual and others ^{49 , 50 , 52 , 53 , 57 , 58 , 61 , 62 , 63 , 68 , 71 , 75}. Participants cited several reasons for maintaining this secret: shame, protecting the family, and privacy. However, the outcome of this secret evidently results in a profound sense of loneliness: “it’s very isolating” ⁶³ (p. 1826).

Studies indicate that resistance to treatment, by both individuals and families, can hinder progress ^{50 , 51 , 54 , 61 , 62 , 65 , 70 , 75}. Some relatives resisted involvement, seeing it as “strange” ⁶² (p. 90) or unnecessary: “...she is of legal age, so they should not refer to us” ⁶⁵ (p. 6). Others feared judgment from professionals: “our parents felt any disclosures I made about ‘family issues’ would be a ‘betrayal’... drawing shame and judgment onto the family” ⁷⁵ (p. 15).

Numerous studies report serious shortcomings in family-related healthcare ^{51 , 54 , 57 , 59 , 61 , 62 , 63 , 64 , 65 , 66 , 67 , 70 , 71 , 72 , 75}, including poor communication, long wait, and outdated practices like using body mass index (BMI) as the sole evaluation criterion ^{51 , 52 , 57 , 61 , 63 , 64 , 65 , 70 , 71}. Services often overlooked families’ specific needs ^{53 , 67}, with siblings feeling excluded and unsupported due to parent-focused approaches ^{62 , 66 , 70}.

Professionals were often perceived as dismissing or minimizing the illness ^{51 , 54 , 57 , 63 , 64 , 65 , 71 , 75}. One mother recalled a nutritionist saying “she’s thin, but not unhealthy” ⁶³ (p. 1828) while another professional remarked: “well, you’re not, you’re too heavy” ⁶⁴ (p. 4). Many parents felt they had to fight to be heard: “...I am only listened to if I raise my voice and become strident” ⁶⁵ (p. 6). This struggle often leaves families overwhelmed as they try to fill the gaps left by the healthcare system, increasing their distress.

Descriptive theme 4 - Pathways to coping: supporting the whole family - a public health issue

This theme explores how families cope with anorexia nervosa/bulimia nervosa, beginning with understanding and accepting the condition ^{50 , 54 , 62 , 65 , 68 , 69 , 71 , 72 , 75}: “till I put the name to it, I wasn’t strong enough to fight” ⁵⁴ (p. 50). This led to more open communication ^{49 , 50 , 52 , 53 , 62 , 65 , 68 , 70 , 71 , 72}, fostering positive emotions and a sense of being “less lonely” ⁶⁸ (p. 6).

As their understanding of eating disorders deepened, families expanded their caregiving beyond food-related concerns, adopting more holistic ways to support their loved one ^{49 , 50 , 52 , 53 , 62 , 65 , 68 , 70 , 71 , 72}. Some offered emotional support through gestures like making “a playlist for her on Spotify” ⁷⁶ (p. 997) or helping with transport costs to prevent weight loss from long walks. Others emphasized the importance of boundaries and responsibilities, recognizing that recovery also involves accountability ⁶⁶.

Some studies highlighted the value of self-care and maintaining routine as key to coping and recovery ^{51 , 52 , 62 , 65 , 70 , 72}. One mother shared that participating in treatment eased her anxiety: “they made me feel like... it’s not just X there is actually me here somewhere if you look around” ⁵¹ (p. 396). Distancing also emerged as a protective strategy, enabling some caregivers to sustain long-term support for their loved one ^{49 , 50 , 62 , 65 , 66 , 68 , 72 , 76}: “better to keep some distance and be able to stay the course” ⁶⁶ (p. 5).

Families’ hope that “you’ve got to see light at the end of the tunnel” ⁶⁷ (p. 6) is what enables them to sustain their long-term efforts in supporting their relative’s recovery ^{50 , 51 , 57 , 62 , 67 , 69 , 75 , 76}. Others emphasized the role of personal autonomy in recovery, noting the need for some independence from the family ^{54 , 57 , 64 , 68}. As one sibling expressed: “they have to break away... to feel they are independent in relation to the family” ⁶⁸ (p. 6).

Hope in recovery and trust in the individual’s responsibility were linked to emotional growth among family members ^{49 , 57 , 62 , 72 , 75}. Many reported improved relationships with food and the body, along with greater self-awareness, responsibility, and recognition of personal strengths - “learn to love and have kindness for the body I’m in now” ⁷⁵ (p. 14). In some cases, motherhood became a powerful incentive for change ^{49 , 53 , 58 , 61}: “I have to change something. I can’t have a girl and go on in the same line. So I said I would give treatment another shot” ⁵⁸ (p. 72).

Several studies underscore the importance of strengthening family relationships to face ongoing challenges ^{50 , 54 , 60 , 62 , 63 , 65 , 71 , 73 , 74 , 76}. One mother shared: “...the openness in our home has been a strength of ours” ⁷¹ (p. 6). Support from both close relatives and broader care networks also proved essential ^{49 , 50 , 55 , 56 , 61 , 62 , 64 , 68 , 70 , 75 , 76}, as another mother acknowledged: “it is all thanks to their father, who is warm, loving, and supportive” ⁴⁹ (p. 45).

Support from healthcare services was vital not only for the individual’s treatment but also for caregivers ^{50 , 51 , 57 , 61 , 62 , 64 , 68 , 70 , 75 , 76}, as one participant reflected: “they were our carers as well as X’s carers” ⁵¹ (p. 396). Many called for improvements in care addressing both patients and families ^{51 , 52 , 57 , 64 , 65 , 67 , 68 , 70}. One participant stressed the importance of healthcare services acknowledging caregivers’ needs, stating: “you can’t ignore the parent and the parent’s feelings...” ⁵¹ (p. 397).

Based on these results, we further developed two analytical themes.

Analytical theme 1 - Interplay between anorexia/bulimia nervosa and family relations: a complex relationship that feeds on itself

Our findings reveal a complex dynamic between anorexia/bulimia nervosa and the family system. One recurring pattern involves a symbiotic bond with the mother, marked by emotional enmeshment, blurred boundaries, and excessive dependency, whereas the father often appears distant or emotionally absent, resulting in an imbalance in parental roles. In this context, the eating disorders may reflect not only an individual pathology but also a manifestation of relational fragilities rooted in the family’s history: a means of expressing, resisting, or defending against the tensions and vulnerabilities embedded in the family dynamics.

Eating disorder affects both the individual and the entire family, generating emotional strain, caregiver burden, and persistent feelings of guilt, helplessness, and frustration. As the disorder progresses, family life often revolves around the affected member’s needs, leading to the neglect of other members - particularly siblings - and to disrupted routines. When it involves adult women, parental care is frequently overlooked and marital relationships become impoverished. Over time, conflicts intensify, communication deteriorates, and emotional bonds weaken, fostering isolation and loneliness across the family.

Consequently, the disorder not only alters family configuration, affecting each member of the group, but is also influenced by them, reflecting relational fragilities, unspoken tensions, and emotional vulnerabilities. Thus, understanding this complex interplay requires addressing both the individual symptoms and the underlying relational dynamics that both sustain and are sustained by the disorder.

Analytical theme 2 - A comprehensive approach to care that embraces all family members

Addressing complex mental health conditions requires engaging the whole family, as these conditions affect both individuals and the broader family system. While individual treatment remains essential, attending to the family context is equally important, given that family dynamics often contribute to both eating disorder development and maintenance. Family members may experience significant emotional burdens as they cope with a loved one’s illness. Consequently, involving the whole family can provide crucial support and stability throughout the recovery process.

Families often face the stigma associated with mental illness which can lead to shame and a profound sense of isolation, exacerbated by limited support from society and healthcare providers. This stigma may also be internalized within the family, hindering help-seeking behaviors. A holistic approach must therefore extend beyond individual treatment or food- and body-related concerns, encompassing social contexts and prioritizing the well-being of all family members.

In this regard, primary health care plays a crucial role in family-centered mental health interventions. As the entry into the healthcare system, primary care is well positioned to identify early signs of distress, support families, and coordinate referrals. For this to be effective, primary care professionals must be adequately trained to recognize the multifaceted nature of eating disorders - not only in terms of symptomatology but also regarding their broader socioemotional impact on the entire family system. Strengthening primary care capacity to address these dimensions is therefore essential for fostering a more accessible, integrated, and empathetic care model-one that promotes the well-being of both individuals and their support network.

Discussion

Our review synthesized qualitative evidence on families’ experiences with eating disorders, highlighting the emotional complexities and challenges involved. Analysis identified four descriptive themes, exploring the dynamics between the eating disorder and family organization, factors that exacerbate suffering, and coping strategies employed by family members.

Studies indicate a relational pattern in families affected by eating disorders in which preexisting relational fragilities become further intensified by disorder onset ^{8 , 9 , 10 , 11 , 12 , 13 , 14}. Findings from our review corroborate this observation, revealing emotional enmeshment with the maternal figure ^{49 , 51 , 55 , 56 , 60 , 69} alongside distancing or emotional absence of the paternal figure ^{55 , 56 , 60 , 69 , 73 , 74 , 76}. These dynamics manifest in ambivalent relational patterns, sometimes characterized by intense intrusion and conflict, and sometimes by emotional withdrawal and neglect.

An emotionally adverse environment can contribute to psychological vulnerability. In this context, symptoms may function as a defense mechanism against fragile family bonds ^{56 , 60 , 72 , 73 , 75}. Marital strain can lead parents to unconsciously displace their conflicts onto the child’s illness ^{55 , 60 , 69}, whereas children may use the disorder as a means of gaining control or escaping family tension. Thus, eating disorders symptoms emerge as a signal that something is wrong and requires change.

While the illness may serve as self-protection, it can also trap individuals in cycles of isolation, dependence, and suffering, reinforcing the very dynamics they sought to escape. This self-perpetuating interplay between eating disorders and the family system is explored in the first analytical theme, showing how they become mutually reinforcing over time. As the eating disorder progresses, the family becomes increasingly burdened by the ongoing strain of a chronic and enduring illness ^{13 , 20}. Caregivers experience considerable distress ^{21 , 22 , 23} and the whole family becomes trapped in a cycle of suffering generated by the disorder, with daily routines and relationships progressively disrupted and shaped by its presence ^{50 , 51 , 57 , 59 , 62 , 65 , 71 , 75}.

Given the complexity of the familial context, care must extend beyond the individual to encompass the whole family, a focus explored in the second analytical theme. Studies highlight the crucial role of family inclusion in treatment ^{27 , 28 , 31 , 32}, recognizing it as a key ally in both recovery and overall improvement of the affected individual’s mental health. Review findings indicate that such inclusion is highly beneficial, as strategies adopted not only by the individual but also by family members can significantly contribute to the recovery process ^{49 , 50 , 52 , 53 , 62 , 65 , 68 , 70 , 72}.

Although the family constitutes a cornerstone of contemporary mental health care models, evidence in the specialized literature remains poor on how to develop comprehensive care that meaningfully integrates both individuals and their families ²⁴. Consequently, families often face numerous barriers, challenges and unmet needs when seeking treatment, particularly due to lack of professional support ^{51 , 54 , 57 , 59 , 61 , 67 , 70 , 72 , 75}. Despite many studies reporting the strategies that participants employ to cope with eating disorders and care for themselves ^{51 , 52 , 62 , 65 , 70 , 72}, there remains an urgent need for systemic improvement to establish care pathways that are more closely aligned with the guiding principles of mental health policy, aiming to promote more supportive, inclusive, and resilient eating disorder treatment ²⁶.

Regarding study limitations, methodological quality analysis identified deficiencies in the reflexivity criterion. Specifically, several studies did not adequately address the researcher’s stance or the potential influence they may have exerted in the research context. No study specifically addressed topics such as socioeconomic conditions and domestic violence, which can exacerbate conflicts that weaken family bonds. Evidence shows that families living in poverty often face multiple stressors that affect emotional well-being and greater challenges in accessing healthcare and social support. These limitations underscore the need for further research that more fully captures the complexity of the phenomenon under investigation.

Conclusion

Our meta-synthesis produced deeper understanding of family dynamics around eating disorders. By revisiting previous research findings, this study reinterpreted the results of primary qualitative studies on family’s perspective regarding changes in family relations following a member’s diagnose of anorexia nervosa and bulimia nervosa. Interpretive description produced knowledge with direct implications for improving practices and policies as global policies emphasize the need for tailored interventions to reduce eating disorder harms among vulnerable people. Understanding the risk behaviors associated with eating disorders may inform public health policies aimed at developing suitable programs and interventions.

Particularly, it enabled exploring the bidirectional dynamics between family functioning and eating disorders using a rigorous methodology to identify patterns and recurring themes across different qualitative studies and gain a more in-depth, systematic understanding of the existing evidence in the literature. Further, the study considered the unique and singular perspective of the family which is a key element in the recovery process.

In considering the complex relation between anorexia nervosa/bulimia nervosa and family dynamics, along with their reciprocal influences, our findings can help offer a more integrated and comprehensive to this population. This perspective aligns with psychosocial care principles which emphasize engaging the family in all its complexity. Thus, including the family in psychosocial care not only acknowledges its potential as a source of support for the individual experiencing psychological distress, but also recognizes the family’s own need for adequate support to cope with physical, emotional, and psychological burden. Ultimately, this approach facilitates reorganizing and strengthening the family unit ⁷⁷.