What’s it like to be a child and your sibling is diagnosed with cancer?

When the dreadful news arrives that a child has cancer, understandably the focus of parents and health professionals turns to supporting the sick child as best they can. But also caught up in the nightmare are the child's siblings. Not only will they likely be consumed by shock and fear, but they must adapt to the cancer journey the whole family has to embark on.

Official health guidance here in the UK and in the USA states that it's important to provide support to the siblings of children with cancer. Yet the reality is we know relatively little about their experience. A new study in Clinical Child Psychology and Psychiatry helps address this research gap, based on interviews with two brothers and four sisters – now aged 12 to 18 – of children and teenagers with cancer. The results reveal the shock and fear the siblings experienced, and the challenges they've faced, but also uncover a silver lining in the form of "post traumatic growth".

The researchers, led by Anita D'Urso at Addenbrooke's Hospital in the UK, interviewed each sibling for between 40 and 80 minutes, including asking them questions about what it was like when they heard their brother or sister had been diagnosed, and whether they'd experienced any positive changes.

The interviewees' siblings with cancer were now aged between 11 and 16 and their diagnoses, for brain tumour or leukaemia, had been made between 18 and 36 months earlier. Two of the siblings with cancer were still in treatment, the other four in remission.

The interviews revealed the complex emotions the teens (and 12-year-old) had experienced, from the initial shock of their sibling's diagnosis ("I didn't even cry, 'cos it was like  punch in the face") to feelings of guilt and sadness and helplessness, and sometimes anger and jealousy ("X [ill sibling] used to get loads and loads and loads of presents").

Another recurring theme was the positive impact on the interviewees' relationships, especially with their sick sibling ("… 'cos me and her [ill sibling], since this happened, we are like best mates … we are well close now"), the family as a whole, with their fathers (because their mothers had become so involved with caring for the sick sibling), and with outside support, including enriched friendships and helpful school counsellors and therapists.

While often mentioning the downsides, like being forced to grow up too fast, the interviewees also described how they'd changed for the better in the wake of their sibling's illness – such as becoming more mature and empathic ("I'm more understanding of others, like with children with disabilities … I would think 'is there anything I can do to help?' cos I know how their siblings or their mum and dad are feeling." They also described their changed priorities ("It's only recently that I have had an interest in charity work") and outlook on life ("If I want to do things now I do them … life can be too short"), though there were also mentions of sustained anxiety.

Some practical insights to come out of the interviews include the interviewees' recurring comments about the lack of any support they'd had in hospitals (in contrast with positive support received at school and elsewhere). The teens also advised others in their situation to not be afraid to ask for help from parents ("I didn't want to ask [parents] because I didn't want to make them more stressed and upset but … when I did ask, it made them [parents] feel better … Be rationally selfish. Everyone in the family is actually important." They also spoke of how helpful it had been to keep up their hobbies as a way to maintain some sense of normality.

It's important to note that this study concerned the siblings of children with cancer who had thankfully survived their illness – the researchers cautioned that the experiences of siblings of deceased cancer patients or patients in palliative care would likely be different. Also, they acknowledged the limitations of their qualitative approach, including the possibility that by asking questions about the potential positive effects of their sibling's illness, they may have primed their participants to see themselves as "survivors" and to focus on positive outcomes.

These issues aside, D'Urso and her team said that their research supported the "paradigm shift" taking place "across academic disciplines, from a problem-oriented approach to one which nurtures strengths". The interviews showed that "most siblings were able to uncover some benefit from the ill child's diagnosis while still acknowledging the distressing side of their situation," they said. Crucially, they explained, "unpicking of factors that lead to post-traumatic growth may begin to provide guidance for those supporting siblings (including parents, hospital staff and schools)."

Further reading

—Experiences of posttraumatic growth in siblings of children with cancer