Background: Eating disorders are widely recognized as serious illnesses, with complex psychological and physiological comorbidities. Affected individuals face a protracted and challenging treatment journey which, particularly for children and adolescents, requires significant input from family members as carers. This study investigated the perspectives and experiences of those caring for family members with an eating disorder diagnosis.
Method: Participants were carers of affected individuals with an eating disorder, and were recruited from an online survey, subsequently consenting to a semi-structured qualitative interview. Inductive thematic analysis was undertaken to identify themes.
Results: Most participants in the sample were parents of affected individuals. Significant and ongoing psychological and emotional impacts were identified across the sample. The diagnosis, treatment journey and overall impact of the carer role created a situation captured by the over-arching theme 'life is different now'. Impacts profoundly influenced relationships and were felt across all aspects of life by carers, affected individuals and other family members. Heightened worry and vigilance experienced by carers continued beyond improvement or recovery.
Conclusions: This research highlighted challenging and often exhausting impacts felt by carers due to their pivotal role in eating disorder treatment. Inadequate support for most carers in this sample has clear implications for families as well as service and funding providers. Further research should more fully investigate carer experience with different eating disorders to explore the type of support necessary to build capacity and resilience to reduce carer burden.
Keywords: Burden of care; Carers; Eating disorders; New Zealand; Qualitative; Thematic analysis.
Eating disorders (EDs) are serious illnesses with a challenging treatment journey that often requires significant input from family members as carers. This study investigated perspectives and experiences of those caring for family members with an ED diagnosis.Carers reported significant impacts on many facets of their lives. The findings revealed levels of emotional and psychological stress both during and beyond the treatment journey. For carers ‘normal’ life was profoundly impacted by the complicated and often unanticipated role of treatment provider, and navigating the maze of treatment while trying to understand the diagnosis itself. For those with other children, the impacts were compounded by the distress also witnessed in those children. Relationships were significantly affected by the demands of treatment and the serious consequences of the disorder, as well as misunderstandings and stigma related to EDs.A ‘new normal’ state of constant worry and ongoing vigilance defined life post-diagnosis. The results indicate the impacts of an ED diagnosis in a loved one, and the demands of caring for that person and assuming the role of treatment provider were life-changing. For these carers, ‘life is different now’.
© 2021. The Author(s).