When a parent is diagnosed with a life limiting illness, services may be hesitant about what they can offer to their children. Dr. Steve Marshall, a palliative care social worker from the United Kingdom, tells us why identifying children as ‘next of kin’ can unlock the support and visibility that they need.
In February 2020, I was lucky enough to be awarded a Churchill Fellowship to travel to Norway and Sweden. The purpose of Churchill Fellowships is to learn from other countries and bring that knowledge back to the UK. As a palliative care social worker, I have always been interested in working with patients who have young children. The Nordic countries are unique in recognising that the dependent children of seriously ill parents are a vulnerable cohort with unique needs. In 2010, Norway and Sweden enacted legislation to establish children as ‘next-of-kin’ and putting a duty on healthcare professionals to identify them and offer them support. The pandemic put a hold on my travels, but in August and September 2022 I was able 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.
Prior to setting off on my travels, I researched who might be appropriate to share their experiences around this issue and devised a rough itinerary. 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 eternally grateful to everyone who made my travels so rewarding, informative and enjoyable.
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. A Nordic palliative care doctor was surprised that this issue required a fellowship. He took for granted that the needs of children would be addressed when a parent is referred to his service and assumed that all other countries had a similar approach. Professionals were already child-focused prior to 2010, however the 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. However I was frequently told that there is still a great deal of work to be done around this issue. Patient confidentiality can be a barrier and despite encouragement, some dying parents will never agree for their child to be involved.
My challenge now is to learn from my travels and begin to implement some changes in the UK. I intend to start locally and then think about the bigger picture. I truly believe that palliative care professionals in the UK can learn from our Nordic neighbours and develop a more inclusive approach to children as ‘next-of-kin’, thereby ensuring that this vulnerable group have the support they need.
Links and resources
- More information about ‘children as next of kin’ can be found on the Barnsbeste website here.
- Click here to watch Steve’s recent EAPC webinar ‘Best practice for patients with life-limiting illness with dependent children’.
- Find out more about the work of the EAPC’s Social work Task Force.
- Read more about social work and palliative care on the EAPC blog here.
About the author
Dr Steve Marshall is a social worker in the palliative care team at King’s College Hospital and is an Honorary Senior Lecturer at King’s College London. Steve combines research and teaching with clinical practice and has a particular interest in supporting children and young people. Steve was co-Principal Investigator and lead researcher on a recent Marie Curie funded project which involved interviewing 32 children and young people about their experience of living with a parent with a life-limiting illness. This research has provided the basis of evidence-based guidance for healthcare professionals working with patients with a life-limiting illness who have dependent children. Twitter: @hollowaystevo ORCID iD: 0000-0002-3728-7389.
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