From one of our favorite international (Australian) treatment teams comes an article published online November 2013 in the journal Advances in Eating Disorders: Theory Research and Practice discussing “Anorexia nervosa in the family: a sibling’s perspective”. (Simon Clarke, Michael Kohn, Sloane Madden et al.).
Every team treating pediatric eating disorders struggles with the effects of the illness on unaffected siblings. Siblings suffer right along with everyone else in the family when a child comes down with a chronic illness of any kind -- be that diabetes, schizophrenia, inflammatory bowel disease or cancer. Some of the ways in which they suffer are disease- or condition-specific, but many are not. Cancer physicians and families have long known that while some siblings may rally around an affected child just as the parents do, others may reject the illness and with it their brother or sister, or choose to act as if the illness had nothing to do with them. This can cause great distress within the family, with parents and patients agonizing in similar and dissimilar ways. Are there any interventions that can make a difference? The Australian team decide to take a look.
Admittedly, their sample size was small: semi-structured interviews with 20 adolescents aged 12 -18 years, of whom 5 were males. Five of the studied siblings came from an eating disorders unit within a private hospital; eight came from the Department of Adolescent Medicine in a public hospital; and five came from private practice. Two more were recruited through a University psychology student research list or through the website of an organization supporting people with eating disorders. Some patients had received inpatient treatment, some outpatient, and the majority had received family-based treatment (FBT).
The twenty siblings were interviewed alone, without their parents present, something that I think is very important. In our clinical practice we often see distress expressed by unaffected siblings on behalf of the parents. Kids worry about the stress placed on their parents by their brother or sister’s illness. They may resent it, it may make them angry or afraid or it may just make them sad. On average (actually the mean) the affected sibling had been ill 2.3 years (range: 4 months to 10 years). That is a long time in the life of a child and in the life of the other children in a family.
The researchers report: “The quality of the sibling relationship before the onset of AN and the impact of AN on the relationship was discussed [by the siblings] at length. What siblings did to maintain or disconnect their sibling relationship was spoken about by several participants. Analyses revealed three interrelated themes: knowledge of AN, ‘time-out’ from the disorder, and emotional supports. Nearly three-quarters of participants had experienced FBT and talked about how it had affected them. FBT appeared to increase knowledge of AN and generally improved relationships within the family, leading to improved emotional support. ‘Time-out’ from AN was not discussed as much in interviews with participants who had experienced FBT. Difficulties with therapy included those related to when the therapy was not successful, and problems supporting their sick sibling when they were distressed.”
Several findings struck me as particularly noteworthy:
Understanding AN and having a role. It would appear that the more the unaffected children understood about their sibling’s illness, the easier it was for them to learn to cope. It stands to reason that having a role and demystifying the illness might make other children in the family feel less helpless.
Better communication in the family. Naturally, this is the reason Kartini Clinic’s team is strongly lead by our family therapists, whose role it is to make our treatment work for the individual child and their individual family. It has been our experience that “secrets” within the family wind up exploding and then sabotaging progress. Secrets (e.g. telling lies to the extended family or siblings about why the child is in treatment) may make sense in the beginning, but actually underscore the stigma associated with this brain disorder and contributes to it.
Difficulties with FBT. Most kids in this study had experienced family-based treatment, and while this had the potential to offer the most in the way of inter-family communication and sibling involvement, it was also fraught with challenges (see a previous blog ‘why is family-based treatment so wretchedly hard?’). Most of them, as commented on in the article, revolved around painful times at meals.
Externalizing the illness Non-affected siblings who continued to have close, minimally disrupted relationships with their affected sibling seemed to be those whose relationship had been close before the disease appeared. The researchers reported: “Those who remained close to their sibling were more likely to externalize AN, spend time with their sibling engaging in similar activities that they were involved in before the onset of AN, and feel emotionally supported by their families.” This is the reason for “externalizing the disease”, i.e. talking about the illness as if it were separate from and happening to the affected child, not a part of their essential identity. Some children give their disorder a name (e.g. ”Ed”), which is one simple but powerful externalization technique that may seem odd or disingenuous to an inexperienced outsider.
Time-out from the illness: Ah yes! We all need time out. Parents creating special time for unaffected siblings and “time-out” from the illness may be important. But who will give the parents time-out? It remains a difficult problem.
So in summary, we thank our Australian colleagues for looking into this problem that besets us all. For Kartini families, I would encourage you to take advantage of the “siblings group” run by Dena Wilder, our recreational therapist. Make the experience of your other children a frequent discussion point in family therapy and their inclusion in sessions a treatment goal.