Nicole J Highet,
In partnership with the Project Management Team:
Chair: John McGrath, The Network for Carers of People with a Mental Illness.
Co-investigators: Karen Elford, Executive Officer, The Eating Disorders Foundation of Victoria
Kathryn I’Anson, Director, Anxiety Recovery Centre Victoria
Kim Johnson, Carer Representative Julie Nankervis, Policy Officer, Carers Victoria
The research project was undertaken as a partnership between beyondblue: the national depression initiative and the Network for Carers of People with a Mental Illness.
Project completion year
Qualitative research was undertaken to explore the experience of living with a person with an eating disorder in order to gain insight into the impact of this experience on primary carers and the family. The research also sought to identify factors contributing to the burden of care and highlight opportunities to improve the lives of those living with a family member with an eating disorder Six focus groups (three groups each consisting of two sessions) and four in-depth interviews were conducted in rural and metropolitan Victoria. The sample was selected to include parents, partners and friends of people with an eating disorder.
Key outcome themes from the research were identified as follows:
Barriers to identifying an eating disorder:
Carers describe behavioural, physical and/or psychological signs as early indicators of an eating disorder in a family member or friend, but mostly these signs were only recognised in hindsight. It appears that there are many barriers that prevent carers from noticing the development of the disorder at the time. These include attributing behaviour patterns to a need to exercise to keep fit, hormonal changes or simply adolescence. Detection of an eating disorder is further hindered by feelings of guilt, secrecy and shame, which drive people to conceal their symptoms.
Recognition of an eating disorder:
Carers report that the process of detection of an eating disorder may involve collecting evidence to confirm suspicions or to find an explanation for unusual behaviour. In many instances, this leads to tension and mistrust between the person with the illness and the carer or family member. Carers liken this process to ‘putting the pieces of a jigsaw together over time’. They report that feelings of frustration and tension are often compounded by secrecy as they seek to uncover the disorder in their family member. Observations by carers indicate that when they do realise that a family member has an eating disorder, they can experience psychological and emotional reactions including relief, shock, anger and fear. Carers also describe feelings of guilt and blame that they had not detected the disorder sooner and some may question their role in the development of the disorder.
Impact on relationships:
Relationships can be significantly affected when living with a person with an eating disorder. Carers and family may attempt to accommodate various behaviours and symptoms of the disorder by changing family dynamics and interactions. In instances where the person with an eating disorder requires inpatient hospital treatment, family routines and relationships may be further disrupted. The intimacy within relationships can be seriously hindered as the person with the disorder may aim to maintain a physical distance between herself/himself and others. Those surveyed say social relationships are hindered, as they feel constrained by the illness and are often reluctant to invite people to their home or to attend functions.
Carers frequently report significant financial strain associated with living with a person with an eating disorder. This can result from meeting the cost of treatment, the need to give up employment in order to care for their family member, or as a direct result of particular behaviour such as binge eating.
Barriers to accessing treatment:
The complexity of eating disorders, often comprising psychological and physiological dimensions, can make it difficult for carers to determine from whom they should seek advice. It is apparent from carers’ responses that the lack of awareness and understanding about the disorder in the community and among some health professionals often leads to delayed detection, misdiagnosis and inadequate treatment. Some carers report feelings of frustration and desperation because of what they perceive to be unhelpful health professionals and exclusion from the treatment process. Carers report feeling vulnerable and powerless as the illness progresses, sometimes to a critical stage.
Need for support:
The nature of living with the disorder and the barriers to accessing treatment leave carers feeling depleted and overwhelmed. Carers and families taking part in the research project say they often feel that their needs are unrecognised or ignored by health professionals and the wider community.
Implications for policy and practice
Research outcomes reinforce the need to:
- Increase community awareness about signs and symptoms of eating disorders to improve detection and early intervention, reduce isolation, increase support for carers and alleviate their burden of care.
- Increase community awareness and understanding about the significant impact eating disorders have on those who live with them. This will assist in reducing the stigma for the person with the disorder and their family and may increase the level of empathy and support provided to carers.
- Recognise the needs of carers and provide support when they are dealing with the implications of an eating disorder and the profound impact the illness can have on the individual and family.
- Review health policy pertaining to eating disorders management and treatment practices and carers’ needs.
- Ensure that support services and networks for carers in metropolitan and rural areas are adequately funded, available and accessible.
- Encourage health professionals to share information with carers about the disorder, its management, appropriate services, and eligibility for assistance including mutual support groups and financial entitlements.
- Encourage health professionals to understand better carers’ needs and concerns, and to promote a more inclusive approach to treatment and management.