Life is different now – impacts of eating disorders on Carers in New Zealand: a qualitative study 

Why is this research important?  

This paper presents an investigation of the social and personal impacts eating disorders have on people caring for a family member experiencing an eating disorder in New Zealand. Similar to the Australian context, eating disorder treatment in NZ is informed by international research and treatment guidelines, and is based upon a multidisciplinary, patient-centred approach [1]. The results of this study align with reports from Australia of carer impact and experiences [2,3,4,5]. Families and supports have an important role in treatment. This research helps us to better understand the impacts of this on carers of people experiencing an eating disorder, helping to guide the development of better supports for those in a caring role.

The authors utilised a semi-structured interview to explore the experience of carers of people experiencing eating disorders.  This included the range of physical and psychosocial impacts on carers and challenges to family dynamics, interpersonal relationships and social functioning and outlined findings for consideration by eating disorder treatment providers. For this study, carers, defined as parents, spouses or others who had taken on a significant support role, including siblings, friends or other relatives, volunteered to take part in an interview.   
 
Respondents described eating disorders as life altering, serious and shocking, resulting in life being “put on hold” and feeling a heavy burden of responsibility. Carers reported experiencing stress, distress, fear, loneliness, stigma, shame and misunderstanding. Despite these difficulties, respondents expressed a motivation to do what was required in order to support their loved one. Some reported some silver linings in terms of closeness of family relationships and priorities and having a shared experience, while others that spousal relationships were profoundly impacted and family relationships, particularly between siblings, challenged or split by the disorder. Navigation of the system of care was identified as a challenge and something that added to an already stressful situation.  
 
Carers highlighted the importance of communication and access to reliable information about the eating disorder diagnosis and treatment plan as well as collaboration and communication between all members of the multidisciplinary care. Coordinated care from a knowledgeable and skilled team were also important factors in reducing carer burden.  
 
Carers play an essential role in eating disorder treatment. Their experiences and perspectives are an invaluable resource with the potential to inform policy development and service provision and delivery.  
 
Authors:  Louise Fletcher, Henrietta Trip, Rachel Lawson, Nicki Wilson and Jennifer Jordan 
 
Abstract/Summary: 
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. 
Conclusion: 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. 

Access: Open 

Link: https://doi.org/10.1186/s40337-021-00447-z 

Citation: Fletcher, L., Trip, H., Lawson, R. et al. Life is different now – impacts of eating disorders on Carers in New Zealand: a qualitative study. J Eat Disord 9, 91 (2021).  

References: 
1. Hay P, Chinn D, Forbes D, Madden S, Newton R, Sugenor L, et al. (2014). Royal Australian and New Zealand College of Psychiatrists clinical practice guidelines for the treatment of eating disorders. Australian and New Zealand Journal of Psychiatry. 48(11):977–1008. https://doi.org/10.1177/0004867414555814.  
2. Paxton, S. J., Hay, P., Touyz, S. W., Forbes, D., et al (2012). Paying the price: The economic and social impact of eating disorders in Australia. https://butterfly.org.au/wp-content/uploads/2020/06/Butterfly_Report_Paying-the-Price.pdf
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