“It’s Never Ending and Overwhelmingly Difficult”: The Impact of Caregiving for a Loved One with an Eating Disorder in New Zealand

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). Caregivers completed an online, anonymous survey exploring the experience of caregiving and the psychological impact using the Depression, Anxiety, and Stress Scale (DASS-21), the Accommodation and Enabling Scale for Eating Disorders (AESED), and the Eating Disorders Symptom Impact Scale (EDSIS). The most difficult and long-term impacts of caregiving related to the effects on the caregiver’s mental and physical health. Current caregivers reported higher levels of depression and stress than those not currently caregiving, as well as higher levels of depressive and stress symptoms than Australian caregivers. Levels of accommodating and enabling behaviours and impact of ED symptoms were also generally higher in our participants compared with Australian caregivers. 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.