Parents of adult children with eating disorders struggle with enormous burden of care

Many parents of adult daughters with serious eating disorders feel left to fend for themselves. Parents are calling for the state to take a greater responsibility.

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Always alert: The study shows that parents manage much of the care, despite the fact that the patients are adults. Illustration photo: unsplash.com

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Parents of adult daughters with serious eating disorders describe a life filled with anxiety, stress, shame, powerlessness, poor health and loneliness. 

This has transpired from a study conducted at Nord University. 

Five mothers and six fathers of seven young women with serious eating disorders between the ages of 21 and 23 years have been interviewed about their lives. All of the women have experienced prolonged illness, spanning from two to seven years and have all been admitted to hospital on multiple occasions.

The daughters’ serious eating disorders consisted of anorexia as the primary diagnosis, some with elements of vomiting and overtraining issues, while others suffered from complex disorders such as self-harming and personality disorders. Two of the daughters suffered from bulimia.  

Figures from 2015 show that there were 5,500 people diagnosed with eating disorders in Norway, 43 per cent of which were diagnosed with anorexia and 25 per cent of which with bulimia. 

The definition of an eating disorder is an obsession with food, body and weight that limits self-expression and impairs quality of life. The study shows that anorexia is considered the deadliest of all mental disorders. ​

“The purpose of the study was to describe parents’ experiences of having an adult daughter with a serious eating disorder,” explains Jannike Lie Karlstad, Doctoral Research Fellow. 

She says that knowledge of parents’ experiences may lead to better support services. The idea is that greater knowledge of parents’ experiences may make dialogue between relatives and those working for the health services easier. 

The relatives that are always alert

The main finding of the study is that parents state that they always have to be alert in relation to their unwell daughters, including in the relationship between parents and when meeting other family members. 

Some of the parents state that they are all always on constant alert. It transpires that the same feeling of always being alert also applies in relation to the support system. 

“Parents feel that they are left to fend for themselves with an overwhelming responsibility,” Karlstad explains. At the same time, the health service references confidentiality requirements and states that the patient is primarily the responsibility of the health service rather than the parents.

The study shows that parents manage much of the care, despite the fact that the patients are adults.

“They constitute a key part of the support network and this is the only thing in their life at certain times. It emerges that this has a major impact on family life and the health of the relatives and that some end up being signed off sick for certain periods due to the stress,” Karlstad says. 

Greater responsibility to relieve relatives

“Should the state assume greater responsibility?”

“Yes, there should be a service available that is better adapted to this group of unwell adults. The service should involve relatives and provide different types of support to them. Focusing on those who are unwell is not enough, as our research shows that entire families are heavily affected when clinical pictures like these occur,” Karlstad says.

Several other studies have concluded that the relatives of children with eating disorders experience poorer quality of life than the relatives of people suffering from psychosis. Other research also shows that many of those who suffer from eating disorders often live at home for longer than their peers. 

“The families therefore end up being more involved in the unwell individual’s life than would be natural in relation to their biological age,” Karlstad says. ​

What the parents primarily want is more information about the illness and the treatment, both for their own sakes and for the sake of their daughters. It also transpired that they felt excluded, despite the fact that user involvement and the family perspective are both mandated by law. 



Reference


Solveig Margareth Thomassen, Anne-Lise Grønningsæter Loftfjell, Berit Støre Brinchmann and Jannike Lie Karlstad: Parents' experiences of having adult daughters with eating disorders. Sykepleien Forskning (Nursing Research), 2020. DOI: 10.4220/Sykepleienf.2020.81474


Facts about eating disorders: 


Anorexia is characterised by being severely underweight and having a fear of weight gain. People with anorexia often perceive their bodies as being large despite being underweight.

Bulimia is characterised by repeated episodes of overeating and subsequent vomiting. People with bulimia often have a normal weight.


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