This study explored the experiences of brothers and sisters of adolescents with anorexia nervosa, with the aim of furthering understanding of their experiences, their understanding of the illness, and their experiences of service provision. The key findings from this study were that:
Siblings are negatively and positively affected by a range of emotional, behavioural and relational changes that occurred in the context of their sibling’s eating disorder;
They often felt unable to talk about their experiences, perceived their needs as secondary, and felt side-lined or misunderstood by services and
Contact with other siblings was highly valued
These findings are largely consistent with previous findings [9, 16,17,18,19, 30, 31] and highlight the need to better support and include siblings in a meaningful way in treatment. The experience can be both challenging and rewarding, with multiple and mixed emotions occurring simultaneously.
Siblings in this study described coping with such pressures by distancing themselves physically and staying out of the family home, seeking ‘normality’ with friends. This is also largely congruent with previous reports [16, 18, 30, 32]. Interventions aimed at families and siblings should pay attention to the effect of siblings internalising such feelings and whether, as expressed in this study, it would be helpful to facilitate a space to share their experiences. This was the most endorsed recommendation by the current sample and may be a useful way of extending current guidance beyond the assessment of siblings’ own needs .
Suggestions on how best to include siblings in treatment based on the current findings include (a) a more explicit invitation to treatment and a clearer rationale on when and why to attend, and (b) more direct discussion of the sibling role during recovery and the siblings’ own needs in treatment sessions would help to make sibling involvement feel more useful. Siblings in this study did not say they need, or want, to come to all treatment sessions. Rather for it to be discussed with the whole family and the level of sibling involvement to be based on the needs of each family and their members, not just that of the ill adolescent and/or the parent(s). For some this may include sibling attendance throughout treatment, for others it may be very limited.
Notably, services were experienced as somewhat unresponsive to siblings’ needs, as suggested by parents in previous studies [12, 13]. While some authors have found that siblings are reluctant to attend family therapy [16, 33], our findings suggest such reluctance might be addressed by working with siblings to develop support tailored to their unique needs. One participant noted that even when they attended treatment, the therapist did not seem to know how to include them. This suggests therapists may also need additional guidance on how best to ensure attendance is valued and utilised effectively. Experience of services may also be partly influenced by how well the ill sibling is progressing in treatment. Withers et al.  noted that if family treatment was not progressing well, the emotional burden of treatment on siblings was reportedly higher.
There was only one reported difference in the sibling experience based on gender. Sisters, but not brothers, mentioned more self-awareness of their own eating or body image following the development of their sister’s anorexia nervosa. For some, this was associated with feeling watched by their sibling or feeling guilty when eating, for another it helped her appreciate their healthy body shape. While this has been reported previously [16, 31], there is also data indicating that sibling do not struggle with body image more than their peers [34, 35]. This requires future exploration and research.
Although it was not an aim of this study to compare siblings’ experience based on birth order, the ambivalence regarding responsibilities seemed more present for older siblings. Compared to younger siblings, they spoke more explicitly of wanting to support their parents and feeling guilty if they were not able to do so. This is likely influenced by many factors including individual developmental needs and current stage in the family life cycle. Illnesses, including eating disorders, tend to have a centripetal influence, drawing families closer together. While older siblings are likely to be more independent, the current data suggests they are also more strongly pulled into parentified roles of caring for their sibling.
This was a small study and generalisability of the results is limited. Ideally, we would have combined the two pairs of older siblings into one focus group, if it had been clear beforehand that only two people per group would be able to attend—unfortunately this was not the case. The sample included siblings of females with eating disorders only, and the experience of having a brother with an eating disorder remains largely unclear. This sample may have been biased towards those comfortable in groups, and those who had contact with services. Analysis of the data by the same researchers who facilitated the groups may have had the potential to bias the results according to the researchers’ preconceived ideas about what they might find.
Finally, the recruitment strategy was determined by the Research Ethics Committee. Service users who refused consent to contact their siblings did not have to give reasons and, due to data protection rules, it was not possible to analyse differences between those who did and did not give consent. Third party consent in research is a complex issue, but it could be argued that seeking permission from service users before offering siblings a chance to share their experiences undermines siblings’ choices in their own right and reinforces their experience of being marginalised. Further thought should therefore be given to the possibility of contacting siblings directly for future research.
Data from this study suggest the sibling experience needs to be more carefully considered and included in treatment. Findings point to ways siblings may be better supported, such as peer support groups and a more active involvement in family therapy sessions during which their own needs can be addressed in addition to their siblings’. Specifically, the data indicates an explicit discussion about sibling involvement in treatment is needed, as opposed to a blanket rule of attendance or complete separation of siblings from the treatment process.