“The ED Has Cost Us Our Savings, Home, Career—But Recovery Is Worth It”: Support Needs of Adult Caregivers of People With a Diagnosed or Suspected Eating Disorder in New Zealand—A Mixed Methods Study

Abstract

As most individuals diagnosed with an eating disorder are between 12 and 25 years old, parents or guardians frequently assume a caregiver role. Although caregiving can be rewarding, it is often associated with a high level of burden and requires a correspondingly high level of support. We aimed to examine the support needs of caregivers of people with a diagnosed or suspected eating disorder in New Zealand. Using an anonymous online survey, we asked caregivers about their role, the supports they accessed, and their experiences of these supports. Supports most accessed were support groups, mental health therapists, and self‐help materials. The greatest benefits from the supports were emotional and psychological support, gaining eating disorder‐specific knowledge, and building eating disorder management skills. The main barriers to accessing support were financial, lack of availability, and the individual with the eating disorder being ineligible for support. These findings reflect multiple shortcomings in New Zealand’s health system regarding support available for caregivers. The development of an information hub, use of a standardized screening questionnaire, eating disorder training for healthcare providers, and funding for eating disorder‐related support may help to meet some of the needs highlighted in this study.