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Researcher of the Month

Having a sibling with an eating disorder

Caring for an individual with an eating disorder can feel isolating and extremely distressing. Research in this area has found that family members often experience high levels of distress and burden due to the pervasive impact of the illness. Studies suggest that when a sibling becomes unwell, it greatly affects the lives of the other siblings and they experience major life changes. However, most existing studies have focused on parents as carers, overlooking the adverse effects that eating disorders also have on the lives of siblings. Our researcher of the month, PhD student Anya Heneghan, aims to shift the paradigm by reviewing the literature in this area. By analysing the findings of 14 eligible studies, Anya’s work explores siblings’ experiences of having a brother or sister with an eating disorder. Her paper is being readied for publication.

She found that eating disorders impact on many areas of siblings’ lives causing immense and inescapable disruption. The amount of parental time and attention devoted to caring for the child with the eating disorder can also lead to siblings feeling less important. Whilst National Institute for Health and Care Excellence (NICE) guidelines for the treatment of eating disorders clarify that family members who take on the role of caregiving, including siblings, need support and education, Anya found that siblings report receiving less professional help than they want or need.

Summary

“The review found that the eating disorder impacts many areas of siblings’ lives, how they view themselves and the world around them, causing immense disruption, intruding on daily living and schoolwork. Significantly higher levels of depression were found in siblings with a sibling with an eating disorder compared to a control group and siblings’ quality of life is negatively impacted.”

Anya’s paper lucidly outlines the great distress that eating disorders cause to the entire family unit. She identifies five core themes of impact; socio-cognitive emotional effects, difficulty expressing emotion, perceived social stigma, negative emotions and a lack of appropriate and systemic support. In recent weeks, she has looked at brand new research, and has identified a sixth theme; reflections on positive by-products of their experiences.

Anya found that siblings often used language of destruction when describing the eating disorder, including words such as ‘destroy’, ‘broken’, ‘devastation’, ‘chaos’ and ‘war zone’. They report that their home environment changes for the worse and that communication with family members becomes more challenging. Some siblings described difficulties with talking to their parents about how they are feeling, despite wanting to, due to concerns about further burdening them. Several studies indicated that siblings minimise their feelings to alleviate their parents’ worry and therefore don’t voice their own needs. Communication between siblings also frequently becomes more limited and restricted, with caution around certain topics including diet-related talk and language relating to body shape and size. Some reported feeling a sense of competition and jealousy over their sibling’s weight loss, which led, in some cases, to siblings also experiencing disordered eating behaviours. Siblings frequently described how they are expected to be mature, independent and cope alone, more than is normally expected at their age – something that Anya terms ‘parentification’.  

Anya found that the effect of the eating disorder on siblings is often forgotten about. Four studies revealed that parents’ time and attention are dedicated wholly to the sibling with the eating disorder, leaving their other children feeling neglected and overshadowed. Siblings often describe how family chat about their homework, social life or important life events is minimised and that they believe that the needs of their ill sibling are more important than their own. Siblings were also aware of the stigma surrounding eating disorders and they frequently feared negative judgement from others. 

She found that whilst siblings liked receiving support, they did not feel that any of the help offered to them was beneficial. They often said that they were not included in family therapy and had to rely on their parents for information, who were often reluctant to discuss things openly. Anya’s paper is pervaded with a sense of loss. Her review shows that these siblings feel that they have lost contact and closeness with their brother or sister, lost their normality and sense of identity, lost happiness within family life, lost their role as a child and lost their parents’ attention.

Implications

“It is hoped that this review will highlight to professionals the possible risks experienced by siblings, allowing them to provide appropriate support from the outset. Such support can come from the development of new interventions… that integrate siblings in the process of recovery and upskill parents and carers when there is another sibling in the home.”

Families supporting a child with an eating disorder are going through an extremely challenging experience. For parents, being there for both their child with an eating disorder and any siblings is undoubtedly difficult. However, Anya has some great tips that might help.

Talk to your children. All of your children need to understand what is going on. Siblings require factual information, given in a developmentally appropriate way. Include them and be honest.

Try to remove burden from them. Remind your child that their sibling is receiving support from a team of professionals and that it is not their responsibility to make them better. 

Explain that the whole family will experience changes together. Reassure them that their role is that of a sibling and not of a parent. They should continue to spend time with their sibling doing fun activities that they both enjoy.

Whilst finding time is likely to be challenging, try to spend some one to one time with your other children. This will help to prevent them from feeling less important.

Encourage them to talk about their feelings and seek help when they need it. Help them to identify key people in their lives who they feel comfortable talking to, in case they don’t feel able to confide in you directly.

Set boundaries together. Try to talk openly as a family to establish how involved your child/ren wish to be in treatment sessions and what they feel comfortable with. Providing clarity about what they can and should be doing is vital.

Don’t ask your other children to eat more in an effort to encourage their sibling with an eating disorder to eat. This can lead to disordered eating patterns.

Be cautious about asking siblings to pass on information about their brother or sister. Siblings in the research found being asked to ‘spy’ on their brother or sister particularly distressing and stressful. Parents should exercise caution in asking children to take on the additional burden of watching over their sibling. Relieving pressure from your children is optimal.

Talk to their school. Having a sibling with an eating disorder has a major effect on a child and it may impact on their schoolwork. Talking to your child’s school is crucial. Ideally, support at school shouldn’t be forced upon them. However, identifying a key member of staff who your child feels able to approach would be beneficial and scheduling a weekly chat might be useful. Siblings in the research noted that they liked knowing that support was available should they wish to take it, but that they didn’t want to feel obliged to do so.

Resources Created from and Related to this Research

Anya Heneghan, PhD researcher at the Institute of Psychiatry, Psychology and Neuroscience at King’s College London.

Anya Heneghan is a PhD researcher at the Institute of Psychiatry, Psychology and Neuroscience at King’s College London, with a BSc in Forensic Psychology from Kingston University. Her PhD thesis is dedicated to siblings’ experiences of having a brother or sister with an eating disorder which is largely inspired by her own experience as a sibling in this context. Through her work she hopes to raise awareness of these under-served and often forgotten individuals with the goal of improving support services for siblings.