Understanding Family Experiences: A Study on Mental Health Literacy in Adolescent Eating Disorder Diagnoses

Student summary

Why This Research Matters

Adolescent eating disorders such as anorexia nervosa and bulimia nervosa don't just affect the patient — they reshape the whole family. This Spanish study, published in Nursing Reports (2024), asked a simple but important question: what is it actually like to be the parent, sibling, or grandparent of a teenager going through diagnosis and treatment for an eating disorder?

The research team, based at universities and hospitals in Madrid, conducted a descriptive qualitative study using a phenomenological approach between January and February 2023. They interviewed 12 family members — seven mothers, three fathers, one grandfather, and one sister — recruited through posters at social-health centers, social media, and referrals from healthcare teams. To be included, family members had to have lived with the patient since diagnosis and the diagnosis had to be at least one year old. Participants had an average age of 44.7 years. Most of the adolescents involved had anorexia nervosa (75%), with the rest diagnosed with bulimia nervosa (25%), and the average age at diagnosis was 17.4 years. Interviews were semi-structured, lasted about 57 minutes on average, were conducted face-to-face or by video call depending on preference, and were audio-recorded and transcribed. The research team used inductive thematic analysis with double independent coding across five researchers and an external audit, using ATLAS-TI-24 software, and determined that data saturation was reached at 12 participants.

Four major theme blocks emerged. The first, diagnosis, covered the triggers families noticed before the formal diagnosis — social comparisons on social media, traumatic events like bereavement, and personality traits such as perfectionism and a strong need for control — along with behavioral changes like loss of cheerfulness, isolation, and emotional outbursts. Some families said they weren't surprised when the diagnosis came because they already suspected something was wrong; others described shock at the severity.

The second theme, family, described how the eating disorder reshaped relationships. While most families described good relationships with trust and communication before diagnosis, many reported that trust broke down afterward, in part because the illness itself pushes patients toward secrecy and deception. Couples described intense marital strain, arguing over how to handle treatment, while siblings often found themselves thrust into caregiving roles they felt unprepared for. Interestingly, one family described the experience as ultimately strengthening their bond.

The third theme, resources, captured near-universal frustration with the public health system: long waits for psychology appointments, understaffed services, and a difficult transition from pediatric to adult care. Many families turned to costly private care to fill these gaps, which put good treatment out of reach for some. Where nurses were directly involved, families valued their consistent follow-up and individualized care highly — though not everyone was fully aware of what nurses specifically contribute.

The fourth theme, treatment, emphasized the importance of acting quickly rather than assuming a problem will resolve on its own, embracing a multidisciplinary team (psychology, psychiatry, nutrition, and nursing), and involving the family directly in treatment. Notably, although families strongly wanted to be included in therapy, none of the participants in this study had actually received formal family-based therapy.

For nursing students, this study is a reminder that eating disorder care extends well beyond the identified patient. Mental health literacy — families' ability to understand the illness, recognize warning signs, and know how to seek help — comes through again and again as something nurses can actively build through education and communication. The findings also point to real gaps in continuity of care and family-inclusive treatment that future nursing practice and health policy could address. As with any single qualitative study of 12 participants in one region, these findings describe lived experience in depth but should not be generalized to all families or health systems.

Faculty notes

Educational Relevance

This paper reports a descriptive qualitative study, using a phenomenological approach, examining the lived experiences of family members caring for adolescents diagnosed with anorexia nervosa or bulimia nervosa. Conducted in the Madrid region of Spain between January and February 2023, the study recruited 12 family members (7 mothers, 3 fathers, 1 grandfather, 1 sister) via purposive/snowball sampling through social-health center posters, social media, and healthcare-team referrals. Inclusion required cohabitation with the patient since diagnosis and a diagnosis of at least one year's standing. Adolescents represented were predominantly diagnosed with anorexia nervosa (75%) versus bulimia nervosa (25%), with a mean age at diagnosis of 17.4 years.

Data were collected through semi-structured, in-depth interviews (mean duration ~57 minutes), conducted face-to-face or via video call per participant preference, audio-recorded, and transcribed verbatim, supplemented by field notes. Analysis followed an inductive thematic approach with double independent coding across five researchers, external audit, and ATLAS-TI-24 software support; the authors report data saturation at n=12. Rigor was addressed using Guba and Lincoln's criteria — credibility (researcher and data-source triangulation, external audit), transferability (detailed method and sample description), and confirmability. Ethics approval was obtained from a university hospital research ethics committee (PIC015-23FJD), with informed consent and GDPR/Spanish data-protection compliance.

Four thematic blocks structure the findings: (T1) Diagnosis — pre-diagnosis triggers (social media comparison, traumatic events, perfectionism/control traits) and behavioral changes (withdrawal, emotional lability), with mixed reactions to formal diagnosis ranging from confirmation of prior suspicion to shock; (T2) Family — disrupted trust and communication post-diagnosis (attributed partly to illness-driven concealment/deception), marital strain over treatment decisions, sibling role shifts into caregiving, and one case of relational strengthening; (T3) Resources — near-unanimous dissatisfaction with public system capacity (long waits, understaffing, poor pediatric-to-adult transition), reliance on costly private care, and strong valuation of nursing continuity where present, tempered by uneven family awareness of nursing's specific contributions; (T4) Treatment — emphasis on early intervention, embracing multidisciplinary teams, and a clearly expressed but largely unmet desire for formal family-based therapeutic involvement.

For discussion in class, this study offers a compact case for teaching several appraisal skills: evaluating small-sample qualitative designs for transferability versus depth, distinguishing rigor markers (triangulation, external audit, saturation) from generalizability claims, and connecting findings to health-systems critique (resource scarcity, care transitions) alongside relational/family-systems theory. It is well suited to seminars on family-centered mental health nursing, health literacy interventions, and the nurse's role on multidisciplinary eating-disorder teams. The near-total absence of formal family therapy despite strong family demand for it is a useful prompt for discussing implementation gaps between recommended and delivered care.

Limitations to flag for students include the small, geographically bounded sample (Madrid, Spain), potential recall bias inherent to retrospective family accounts, the individual (rather than dyadic or group) interview format — which cannot capture real-time family interaction dynamics — and limited demographic diversity among participants. The authors themselves recommend future research using group interviews or observational methods to better capture family interaction, and call for increased investment in specialist personnel, formal family-based therapy protocols, and mental health literacy programs, including education about biological contributors to anorexia nervosa such as hypoleptinemia. Although the study is set in Spain, the core issues transfer readily to Canadian mental-health nursing: constrained access to specialist eating-disorder services, difficult pediatric-to-adult care transitions, and family-based treatment that is endorsed as best practice yet unevenly delivered are all recognized challenges in Canada, making this a useful lens for discussing the nurse's role in family-centred care and mental health literacy within a publicly funded system.