Louise Fletcher1, Henrietta Trip2, Rachel Lawson3, Nicki Wilson4, Jennifer Jordan5,6. 1. Department of Medicine, University of Otago, Dunedin, New Zealand. 2. Centre for Postgraduate Nursing, University of Otago, Christchurch, New Zealand. 3. South Island Eating Disorders Service, Canterbury District Health Board, Christchurch, New Zealand. 4. Eating Disorders Association of New Zealand, Wellington, New Zealand. 5. Department of Psychological Medicine, University of Otago, Christchurch, Christchurch, New Zealand. jenny.jordan@otago.ac.nz. 6. Specialist Mental Health Clinical Research Unit, Canterbury District Health Board, Christchurch, New Zealand. jenny.jordan@otago.ac.nz.
Abstract
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.
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.
Authors: Phillipa Hay; David Chinn; David Forbes; Sloane Madden; Richard Newton; Lois Sugenor; Stephen Touyz; Warren Ward Journal: Aust N Z J Psychiatry Date: 2014-11 Impact factor: 5.744