"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

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.