Journal Article

“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

Landon, Jason, Donkin, Liesje, McDougall, Kahlia, Rowland, Sarah, Sinclair, Rebecca

2025

Overview

Background Caregivers of people with eating disorders (EDs) often support refeeding, behavioural monitoring, and co-ordinate therapeutic and medical appointments. Available support is often focused on the person with the ED and rarely on the caregiver. This study examined the impact of caregiving in New Zealand (NZ). Methods Current and previous caregivers completed an online, anonymous survey exploring their experience of caregiving and its psychological impact using the Depression, Anxiety, and Stress Scale (DASS-21), the Eating Disorders Symptom Impact Scale (EDSIS), and questions about the long-term impact of caregiving on caregivers’ mental health. A comparison was made with data on Australian caregivers. Results Current caregivers reported higher levels of depression and stress than those not currently caregiving, as well as higher levels of depressive symptoms than Australian caregivers. The impact of ED symptoms were also generally higher in NZ participants compared with Australian caregivers.The perceived impact of the ED was associated with the psychological distress experienced by caregivers with greater impact being linked to more distress. Of those whose loved ones were in recovery, more than 25% experienced ongoing post-traumatic symptoms related to their caregiving experience. Conclusion NZ caregivers reported ongoing effects related to caregiving even when the person with the ED had recovered. NZ caregivers experience a high level of distress and burden that can persist once recovery is achieved. Comprehensive ED support should include interventions to improve caregivers’ wellbeing. Plain English summary Caring for someone with an eating disorder (ED) can impact all aspects of daily life. We surveyed 153 New Zealand adults who are, or have been, the main caregiver for a loved one with an ED to learn how this role affects them. Most were parents, and about 70% cared for someone with anorexia nervosa. The toughest part was emotional: more than 60% of caregivers described relentless fear, anxiety, and isolation as their biggest challenges. Common mental health tests showed current caregivers had moderate depression and stress and mild anxiety—higher than scores in both the general public and Australian ED caregivers. Roughly one third also reported nightmares, flashbacks, or strong physical reactions when reminded of the caregiving period, pointing to trauma-like stress. Overall, the findings show that ED services need to recognise and actively support caregiver wellbeing during treatment and long after recovery, not just focus on the person with the ED.

• Publisher: BioMed Central,BioMed Central Ltd,BMC
• Subject: Anxiety / Behavioral Science and Psychology / Caregiver burden / Caregivers / Clinical Psychology / Depression / Eating disorders / Feeding and eating disorders / Health aspects / Health Promotion and Disease Prevention / Lending a hand: The role of social support in the management of eating disorders / Mental health / Methods / Psychiatry / Psychology / Social media / Stress (Psychology) / Surveys