My sister was admitted to a Paediatric Intensive Care Unit (PICU) quite suddenly one morning when I was going through the usual routine of getting ready for school. I had no idea then that my family's life was going to change so drastically that day. It was 3 weeks before I could see my sister again. Even longer to be at her bedside and give her a hug. Those early days are a bit of a blur of being passed around different relatives and hearing bits of conversations. I felt so lost, confused and scared. My brother and I could feel the worry and upset from family and see the faces of concerned doctors and nurses, even if we did not understand what was happening around us. It felt very strange not to be getting clear answers and information from our mum and dad and other adults. We did not understand what was happening or what would happen in the future. What helped was when people asked how we were doing, tried to explain things in a way we would understand and encouraged us to ask questions. We helped make things for our sister's bedspace so we could feel like we were with her. When my sister was diagnosed and had more of a treatment and rehabilitation plan, it became a little easier to make sense of what was going on and start getting in to a new routine of balancing our two lives: hospital and home. Although there were lots of bumps in the road, it felt good to be on a path to getting back home while making the best of our time in hospital. Our family spent almost a year in PICU. As we did not live close by to the hospital, my parents took turns living there and my brother and I stayed whenever we could, being shuttled back and forth for school. We felt guilty when we were away from the hospital but also missed our home, friends and normal routine. The family accommodation was not the nicest but we were so happy to be nearby so that we could see our parents and our sister. Our relationship with our sister felt different too. Having to wash our hands all the time near her, being careful around the tubes and wires, not being able to get on her bed, and being asked to leave the room are just a few examples. This was on top of seeing her in pain, uncomfortable and upset. We felt more like siblings when we were able to get involved in her day. It was nice when we could help with her care in a small way, give our opinions or be involved in decisions about the day. My sister could not speak for a long period of time so I wanted to be able to speak up for her when I could. We were so grateful when therapists and nurses found ways for us to play together or join in her physiotherapy. Physio discos were a highlight of the week and we could see how being involved helped our sister in her therapy too. It felt very special when we were included in small goals for her rehabilitation, like what activity we did in therapy, planning to go outside of the unit for the first time and being allowed to eat together. These goals were just as important for us as they were for our sister. We got to know the PICU team really well and they got to know us too. It made us feel better when they remembered our names and things about us, like a hobby, I had or music my brother liked. This made us feel valued and included in the hospital ‘family’. The hospital team used to comment on how smiley and happy we were. We were just so happy when we had time together, but that did not mean we did not feel the impact of each day. Even though I was young, I remember all of the big feelings I had being away from my parents, being worried about my sibling and her future and worrying about schoolwork. Then there were day-to-day things that would often make me sad—even though they might seem small to other people. It was hard when we had to move bedspaces as we had made them our own. When therapy or activities were booked but had to be cancelled due to staffing, this was upsetting as we had been looking forward to it. I found that it was a few years after our time in hospital that I struggled emotionally. I was very lucky to receive some counselling at school to help me process my experiences. It was important to have some time just for me to explore my feelings without the worry of how it would affect others. I do hope other siblings are offered the same support. Even though it was a very difficult time, it was hard to say goodbye to the unit and the team. Among all the painful memories, there were also so many good ones that still make me smile. I think I am a stronger, more resilient young person now and have a lot of empathy for others. I am grateful to the amazing team who helped care not just for my sister, but for me and my family. Being a sibling of someone in intensive care is hard. You are not the patient, but you are also not an adult. You are still a child who needs communication, compassion and care. More information and support for siblings in the PICU would not only just help them cope and manage their feelings but also help them support their brother or sister in hospital. I hope that siblings in the PICU are not overlooked as just another visitor. The author declares no conflicts of interest. The data that support the findings of this study are available from the corresponding author upon reasonable request.
Jessica Smith (Wed,) studied this question.