Supporting children living with seriously ill parents

Unfortunately, the pandemic put a hold on my travels, but in August and September 2022 I was able finally to travel around Norway and Sweden and learn how the concept of children as ‘next-of-kin’ is implemented, and the difference that this can make.

On my travels, I met with a range of professionals, including clinicians working in palliative care and oncology, ‘children as next-of-kin’ co-ordinators, policy makers, researchers and academics. I was also able to shadow colleagues and I even attended some home visits. As well as visiting Oslo and Stockholm, I visited more rural areas, including Kristiansand in South Norway and Umeå in North Sweden. Everyone I met was friendly, welcoming and knowledgeable, and I am very grateful to everyone who made my travels so rewarding, informative and enjoyable.

While undertaking my research, it became apparent that Norwegian and Swedish healthcare professionals are fundamentally child-focused. Children are perceived as individuals with their own basic human rights, rather than being ‘junior’ citizens with less rights than adults. There is a recognition that identifying and providing appropriate support to vulnerable children will help to ensure their wellbeing as they grow into adulthood.

The 2010 legislation has provided a framework and justification for the consideration of children’s needs. Every hospital in Norway and Sweden now has a Children’s Ombudsman who has overall responsibility for children as next-of-kin in their organisation. Every ward or clinic also has a designated lead for children, with allocated time to ensure that children are identified and offered information, advice and/or support from the staff.

My challenge now is to begin to implement some changes in the UK, based upon my learning in Norway and Sweden. The key message from my Fellowship is the need for healthcare professionals in the UK to provide support to children living with a seriously ill parent, to ensure their wellbeing in adulthood.

I intend to start working with my team, supporting colleagues to identify dependent children and offer support to their families, including providing information about young carer groups. I plan to develop a network of Children’s Champions where I work at King’s College Hospital and in other appropriate organisations, such as hospices. Using contacts from my work with the Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, I also intend to approach and inform people of influence, including policymakers and politicians. In addition, I plan to publish my findings in an academic journal.

Having seen at first hand the tremendous work carried out in Sweden and Norway, I truly believe that palliative care professionals in the UK can learn from our Nordic neighbours. Their work can help us develop a more inclusive approach to children as ‘next-of-kin’, thereby ensuring that this vulnerable group have the support they need and deserve.

For more information you can read Steve’s recently published Fellowship Report or get in touch directly via Stephen.marshall@kcl.ac.uk.