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

Abstract

This correspondence responds to Donkin et al. [1], which examined the psychological burden of caregiving for individuals with eating disorders (EDs) in New Zealand (NZ). While the study makes an important contribution by providing much-needed NZ-specific evidence on caregiver distress, we highlight two considerations that may affect the interpretation and presentation of the findings. First, the normative reference group used to benchmark caregiver wellbeing on the DASS-21 differs from the caregiver sample in both time period and demographic composition, limiting the comparability of the normative analysis. Second, we argue that the study’s sole figure gives visual prominence to descriptive findings while the primary inferential results are presented only in text and tables. We also note that reporting the underlying sample size would improve the interpretability of the figure. These refinements would strengthen the clarity and evidential presentation of an important contribution to the eating disorder caregiving literature.

Dear Editor,

We read with great interest the study by Donkin et al. [1], published in the Journal of Eating Disorders, which examines the psychological impact of caregiving for individuals with eating disorders (EDs) in New Zealand (NZ). Systematically documenting the extent and persistence of the psychological burden of caregiving is essential in recognising caregivers as recipients of care in their own right and in building the evidence needed to integrate caregiver support into standard ED services. The authors made a meaningful contribution by generating much-needed NZ-specific evidence on the psychological burden experienced by caregivers of people with an ED, a population for whom local data remain limited.

Two aspects of the study warrant further consideration, as they may inadvertently diminish the persuasiveness of its central conclusion that caregivers experience substantial and enduring distress. Specifically, concerns arise regarding (1) the suitability of the reference groups used to benchmark caregiver psychological wellbeing, and (2) the selection and visual emphasis of specific findings, which do not consistently reflect the magnitude of burden demonstrated elsewhere in the study. Together, these issues may limit the interpretability of the comparative analyses and weakens the extent to which the presentation of findings highlights the evidence most central to the study’s conclusions.

The choice of normative reference group raises a critical concern. To determine whether caregiving had an overall negative effect on caregiver self-reported wellbeing, scores on the DASS-21—a 21-item self-report measure of depression, anxiety, and stress—were compared to population norms Sinclair et al. [2]. Given the absence of NZ-specific normative data for the DASS-21, the authors drew on an Australian community sample [3] as a pragmatic alternative, a rationale explicitly acknowledged in the article, citing the comparable healthcare systems and sociocultural contexts shared by the two countries. While we commend this transparency, two features of this reference group raise concern that go beyond those acknowledged in the article.

First, the Crawford et al. [3] normative data were collected between 1995 and 2000, more than two decades before data collection in 2024. While the authors acknowledge temporal and contextual factors as a potential source of bias, we suggest more explicitly acknowledging how this historical mismatch limits the precision with which the normative comparison can be interpreted. Over this interval, population-level distress has risen substantially, both internationally and within NZ [4–6]. Consequently, a reference sample collected more than two decades earlier cannot be assumed to provide a directly comparable benchmark for a contemporary caregiver-population. This matters because arguments for increased caregiver support rely not only on demonstrating distress but also on establishing how that distress compares to the broader population. As such, the use of a historical benchmark limits the interpretability and persuasive value of the normative comparison. Explicit acknowledgement of this limitation would strengthen the credibility of the findings.

Beyond this, the normative sample comprised a relatively balanced sex distribution, whereas the caregiver sample in Donkin et al., [1] was overwhelmingly female (93.5%). We recognise that this predominance is consistent with previous research showing that mothers and other female relatives most often assume the primary caregiving role for individuals with eating disorders [7], and therefore reflects the characteristics of the caregiver population rather than a limitation specific to the authors’ study. Nevertheless, the demographic mismatch with the normative reference limits the comparability of the two groups and should be acknowledged when interpreting the magnitude of the observed differences.

Given that no more appropriate normative dataset is publicly available, the use of Crawford et al., [3] is justifiable as a pragmatic reference point, and a one-sample comparison against published norms is itself an accepted method [8]. The most feasible correction is therefore not to abandon the comparison but to reframe it as contextual, a reference point for interpreting caregiver distress levels rather than a definitive benchmark against the general population, while acknowledging that caregivers were compared with a historically and demographically non-equivalent reference sample. Future studies would benefit from concurrently recruiting a community comparison group, which would allow for control over sex distribution, temporal alignment, and local context, though we recognise this represents a more resource-intensive undertaking—a prospective direction already noted by the authors.

Importantly, this refinement would not weaken the study’s central conclusion; rather, it would strengthen it. The claim that NZ caregivers experience a substantial and under-recognised burden is supported not only by the normative comparison, but also by the within-sample analyses, the association between eating-disorder impact and psychological distress, and the qualitative findings. Presenting the normative comparison as contextual while grounding the case for expanded caregiver support in this convergence of evidence, would make that case more robust and persuasive and better align the strength of the evidence with the strength of the conclusions drawn from it.

A second concern relates to the interpretability and visual emphasis of Fig. 1. As the study’s sole figure, Fig. 1 provides a prominent visual summary of caregivers’ psychological symptoms. However, the absence of the underlying sample size limits the interpretability of the reported prevalence estimates. The y-axis presents raw counts, whereas the Results section reports percentages. Without this information, it is not possible to assess the precision of the descriptive estimates, determine the amount of evidence underlying each percentage, or identify whether denominators differed across outcomes because of missing data. Including the sample size would provide essential context for interpreting the figure, improve reporting transparency, and allow the descriptive findings to be appraised more appropriately alongside the study’s inferential results.

Fig. 1.

Proportions of participant responses to closed questions about ongoing impact (from [1])

Beyond this reporting issue, a broader concern relates to the visual emphasis placed on Fig. 1. As the article’s sole figure, Fig. 1 occupies a structurally prominent position in communicating the study’s findings. Yet the information it conveys is already summarised in two sentences of the Results section, and it presents no inferential content—no subgroup comparisons, no effect sizes, no statistical context. The study’s primary hypothesis-driven findings, the association between eating-disorder symptom impact (EDSIS) and psychological distress (DASS-21), and the comparison of distress levels between current and recovery caregivers—are conveyed exclusively through text and Table 1. Research in science communication has established that figures carry disproportionate weight in shaping how study findings are understood relative to equivalent textual content ([9] Sect. 7.26); devoting the paper’s only figure to descriptive, subsample-level frequencies that duplicate existing prose therefore risks understating the inferential findings that most directly support the study’s conclusion that caregivers require sustained recognition and support within NZ ED services. We therefore suggest that the authors consider giving greater visual prominence to the study’s primary inferential findings, such as the association between ED impact and psychological distress. Visualizing these findings would more directly communicate the study’s principal contribution and strengthen the evidential basis for its conclusion that caregivers warrant greater recognition and sustained support within NZ eating-disorder services.

Table 1.

Comparison of caregiver DASS-21 and EDSIS scores with comparable Australian studies (reproduced from Table 1 in [1])

Sample	Current study (N = 128)		Comparison studies
	NZ current caregivers	NZ caregivers whose loved one is in recovery	Crawford, Cayley (N = 497)	Lefkovits, Pepin (N = 104)
			Australian community	Australian current caregivers
Female gender	93.5%	92.2%	46%	93.9%
Age M (SD)	49.22 (10.62)	50.41 (10.09)	42.14 (17.93)	51.61 (7.48)
Partnered relationship	81.5%	83.4%	NR	80.0%
Parent of individual with ED	88.9%	85.0%		93.9%
DASS-21 Total	42.87 (24.09)	28.55 (23.26)*a	8.30 (9.83)*b	NR
Depression	15.48 (9.91)	8.95 (9.79)*a	2.57 (3.86)*b	12.67 (9.77)*b
Anxiety	8.39 (8.01)	6.65 (7.00)a	1.74 (2.78)*b	8.78 (7.79)
Stress	19.00 (9.28)	12.95 (9.33)*a	3.99 (4.24)*b	17.17 (8.31)
EDSISc Total	48.34 (15.7)			42.62 (14.05)*b
Nutrition	19.92 (5.8)			20.03 (5.71)b
Guilt	11.77 (4.5)			10.13 (4.89)*b
Dys-regulated behaviour	9.38 (5.8)			4.85 (3.95)*b
Social isolation	8.6 (3.7)			7.62 (3.91)b

DASS-21 Depression, Anxiety and Stress Scale 21; EDSIS Eating Disorders Symptom Impact Scale; NR not reported

* Indicates significance of 0.05 or less using a two-tailed test; ^aindicates a comparison between current caregivers and caregivers whose loved one is in recovery; ^bindicates a comparison between New Zealand and Australian caregivers; ^cno comparison was made between current caregivers and caregivers of people who were in recovery due to the questionnaires assessing current impact and behaviours related to the ED

In summary, the findings of Donkin et al. [1] offer valuable NZ-specific evidence on the psychological burden of caregiving in eating disorders, a critically under-researched area. Such research has the potential to support the recognition of NZ caregivers as recipients of care, to inform family-inclusive service reform, and to draw attention to the systemic gaps that currently leave caregivers inadequately supported. The considerations we raise relate to the interpretation and presentation of the findings, specifically, a more explicit contextualisation of the normative comparison, and closer alignment between the study’s principal figure and findings most central to the study’s conclusions. These refinements would strengthen the interpretability and impact of an already important contribution, helping ensure that the evidence supporting the conclusion that caregivers experience significant and enduring distress and require greater recognition and support within ED services is interpreted with the weight it warrants.

Abbreviations

DASS-21

Depression, Anxiety and Stress Scale – 21 items

ED

Eating disorders

EDSIS

Eating Disorders Symptom Impact Scale

NZ

New Zealand

Author contributions

AB conceptualised the letter, reviewed the literature, and drafted the manuscript. JBD supervised the work and critically revised the manuscript. All authors read and approved the final manuscript.

Funding

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

Data availability

No datasets were generated or analysed during the current study.

Declarations

Ethics approval and consent to participate

Not applicable.

Competing interests

The authors declare no competing interests.