Background: Eating disorders (ED) can have profound effects on family members and carers. These impacts can be experienced across multiple domains and may contribute to the maintenance of ED symptoms. In the absence of any New Zealand studies quantifying this, and given country-specific differences in access to care and treatment, this study explores the psychosocial and economic impacts on those caring for someone with an ED in New Zealand.
Methods: Carers (N = 121) of those who had, or still had, a self-reported ED (82.6% anorexia nervosa) completed an online survey open between December 2016 and October 2020, adapted to the New Zealand context. Questions addressed ED recency and recovery status of the individual cared for, treatment access, and the financial and psychosocial impact on the carer. Data analysis included descriptive statistics, with financial cost data converted to the equivalent of 2020 New Zealand dollars.
Results: Most (88.6%) recruited carers reported still caring for someone with ED symptoms of varying severity. A majority reported difficulty accessing treatment for the person they cared for, with a sizable minority (45%) paying for private treatment, despite few having private insurance. Carer losses typically included reduced income and productivity, travel costs, and other miscellaneous costs. Carers reported significant psychosocial impacts across a range of dimensions including family life, interpersonal relationships, and their own personal well-being.
Conclusions: Carers in New Zealand report impacts which are far reaching and longstanding, covering their own personal and interpersonal well-being and that of those around them. While most of those they care for get access to public (free) treatment at some time or another, the wider financial and economic impacts on carers are significant, and likely to take years to recoup. Though not unique to EDs, interventions and supports for carers are much needed in New Zealand, alongside more comprehensive research methodology to further determine positive and other impacts of EDs over the long course of the caregiving role.
Highlights: A majority reported difficulty accessing treatment for the person they cared for 45% paid for private treatment, despite few having private insurance Carers reported reduced income and productivity, travel costs, and other costs. Carers reported significant psychosocial impacts on family life, interpersonal relationships, and their own personal well-being. Carers provide a pivotal role in supporting treatment and recovery in their family member with the These findings will be relevant for funders and service providers in developing further approaches to address barriers and gaps in service provision to reduce impacts on carers, and as a result, those with eating disorders.
Keywords: Carer burden; Eating disorders; New Zealand.
Caring for a person with any significant health or disability condition can have a harmful effect on the carer’s own wellbeing. This study estimates this burden of caring for people with either ongoing ED symptoms or who have recovered, in New Zealand. The study recruited 121 carers, of whom almost all (97.5%) were parents, with most caregivers reporting impacts as this related to caring for someone with anorexia nervosa (82.6%).Overall, the results found widespread impacts on carers, particularly impacts on multiple relationships in their life, especially family relationships. These impacts extended to reporting harmful effects on the relationship with the person with the ED. Carers are also burdened by difficulties accessing treatment and wider economic impacts such as loss of income and productivity at work. As New Zealand’s health system is relatively unique and this is the first quantitative study in New Zealand exploring ED carer impacts, larger studies are needed to capture the full extent of this in order to better meet these needs both at a health service and government level.
© 2022. The Author(s).