When Caring Breaks You: New Zealand’s Eating Disorder Caregivers Face a Hidden Crisis

Caring for a loved one with an eating disorder can be a relentless, all-consuming experience, and new research from New Zealand is now putting hard numbers on that hidden toll. A mixed-methods survey published in the Journal of Eating Disorders by Donkin and colleagues documented substantial and enduring psychological distress among caregivers of people with eating disorders, painting a stark picture of exhaustion, anxiety, and depression in a population that health services have long treated as invisible. The study’s title quote, drawn directly from a caregiver, captures the sentiment bluntly: it is never ending and overwhelmingly difficult. Now, a new letter to the editor published in the same journal by Amélie Blaquière and J. Bruno Debruille of McGill University’s Douglas Research Centre is scrutinising how that evidence was measured and presented, arguing that careful methodological refinements would make the case for caregiver support even harder to ignore.

The original survey is significant because New Zealand-specific data on eating disorder caregivers have been scarce. Caregivers of individuals with eating disorders occupy a uniquely demanding role: unlike many other conditions, eating disorders revolve around food, which means that everyday activities such as preparing meals, sharing family dinners, and grocery shopping become charged, high-conflict situations that recur multiple times a day. Previous international research, including a systematic review of family caregiving in eating disorders, has consistently shown that these caregivers carry a heavier psychological burden than caregivers in many other illness contexts. Systematically documenting that burden, the letter’s authors argue, is essential for recognising caregivers as recipients of care in their own right and for building the evidence base needed to embed caregiver support into standard eating disorder services.

The New Zealand survey used the Depression, Anxiety and Stress Scale, known as the DASS-21, a widely used 21-item self-report questionnaire that yields separate scores for depression, anxiety, and stress. To determine whether caregiving had an overall negative effect on wellbeing, the researchers compared their caregivers’ scores against population norms. Because no New Zealand-specific normative data exist for the DASS-21, the authors turned to an Australian community sample as a pragmatic alternative, a choice they openly acknowledged by pointing to the comparable healthcare systems and sociocultural contexts the two countries share. The letter writers commend that transparency but argue that two features of the reference group go beyond the limitations the original authors themselves flagged.

The first problem is time. The Australian normative data were collected between 1995 and 2000, more than two decades before the caregiver data were gathered in 2024. During that interval, population-level psychological distress has risen substantially, both internationally and within New Zealand, as documented by national mental health system monitoring and analyses of consecutive New Zealand Health Survey years. A reference sample collected in the late 1990s therefore cannot be assumed to provide a directly comparable benchmark for a contemporary caregiver population. This matters, the letter argues, because the case for increased caregiver support rests not merely on demonstrating that distress exists, but on establishing how that distress compares with the broader population. If the general population baseline has itself shifted upward, the magnitude of the gap between caregivers and everyone else becomes harder to pin down precisely, and the persuasive value of the normative comparison is correspondingly weakened.

The second problem is demographic. The Australian normative sample had a relatively balanced sex distribution, whereas the caregiver sample in the New Zealand study was overwhelmingly female, at 93.5 percent. The letter’s authors are careful to note that this predominance is not a flaw in the study itself; it reflects a well-documented pattern in which mothers and other female relatives most often assume the primary caregiving role for individuals with eating disorders. Nevertheless, the mismatch between the two groups limits the comparability of the normative analysis and should be acknowledged when interpreting the size of the observed differences between caregivers and the general population.

Crucially, the letter does not call for the comparison to be abandoned. Given that no more appropriate normative dataset is publicly available, using the Australian norms remains a justifiable pragmatic choice, and a one-sample comparison against published norms is an accepted method in psychological research. The most feasible correction, the authors suggest, is to reframe the comparison as contextual: a reference point for interpreting caregiver distress levels rather than a definitive benchmark against the general population, with explicit acknowledgement that caregivers were compared against a historically and demographically non-equivalent sample. Looking forward, they point to a more resource-intensive but methodologically cleaner option: concurrently recruiting a community comparison group matched for sex distribution, time period, and local context, a direction the original authors themselves had already noted.

What makes this methodological debate striking is that the letter’s authors insist their refinements would strengthen, not weaken, the study’s central conclusion. The claim that New Zealand caregivers experience a substantial and under-recognised burden does not rest on the normative comparison alone. It is supported by within-sample analyses, by the association between eating-disorder symptom impact and psychological distress, and by the study’s qualitative findings, in which caregivers described the relentless nature of their role in their own words. Presenting the normative comparison as contextual while grounding the argument for expanded support in this convergence of evidence, the letter argues, would align the strength of the conclusions with the strength of the data behind them, making the overall case more robust and more persuasive.

The second major concern in the letter concerns visual communication, an issue that resonates far beyond this single study. The original article contained a single figure, which summarised caregivers’ responses to closed questions about the ongoing impact of the eating disorder. The letter points out that this figure lacks the underlying sample size, making it impossible for readers to assess the precision of the reported prevalence estimates, to determine how much evidence underlies each percentage, or to identify whether the denominators differed across outcomes because of missing data. The y-axis presents raw counts while the Results section reports percentages, adding another layer of interpretive friction. Including the sample size, the letter argues, would provide essential context and improve reporting transparency.

More broadly, the letter raises the question of what a study’s only figure should show. Research in science communication has established that figures carry disproportionate weight in shaping how readers understand study findings compared with equivalent textual content. Yet the sole figure in the New Zealand study conveyed information already summarised in two sentences of prose and contained no inferential content: no subgroup comparisons, no effect sizes, no statistical context. Meanwhile, the study’s primary hypothesis-driven findings, including the association between eating-disorder symptom impact measured on the Eating Disorders Symptom Impact Scale and psychological distress measured on the DASS-21, and the comparison of distress between current and recovery caregivers, appeared only in text and a table. Devoting the paper’s only visual to descriptive, subsample-level frequencies, the letter warns, risks understating the inferential findings that most directly support the conclusion that caregivers need sustained recognition and support within New Zealand eating disorder services. Visualising those primary findings instead would communicate the study’s principal contribution more directly.

The exchange is a reminder that in health research, how evidence is framed can shape policy as much as the evidence itself. The original survey offers valuable New Zealand-specific evidence on the psychological burden of eating disorder caregiving, a critically under-researched area, with the potential to inform family-inclusive service reform and to expose the systemic gaps that currently leave caregivers inadequately supported. The letter’s authors, who report no competing interests and received no external funding for their commentary, frame their critique as a constructive effort to ensure that this evidence is interpreted with the weight it warrants. For the families living the reality behind the data, the stakes are concrete: whether caregivers are formally recognised as people who need care themselves, and whether eating disorder services are resourced to support them, may depend on how convincingly studies like this one make their case, and on how carefully their benchmarks, figures, and conclusions are aligned.

Subject of Research: Psychological burden and methodological evaluation of caregiving for people with eating disorders in New Zealand

Article Title: Letter to the Editor: “It’s never ending and overwhelmingly difficult”: a mixed-methods survey of the impact of caregiving for a loved one with an eating disorder in New Zealand

Article References: Blaquière, A., & Debruille, J. B. (2026). Letter to the Editor: “It’s never ending and overwhelmingly difficult”: a mixed-methods survey of the impact of caregiving for a loved one with an eating disorder in New Zealand. Journal of Eating Disorders, 14(1), Article 229. https://doi.org/10.1186/s40337-026-01746-z

Image Credits: AI Generated

DOI: 10.1186/s40337-026-01746-z

Keywords: eating disorders, caregiving, caregiver burden, DASS-21, psychological distress, New Zealand, normative data, mixed methods, mental health, science communication, Journal of Eating Disorders, family caregivers