International Focus: Pre-bereavement support, Norway and Sweden

This is an abridged version of Children as next-of-kin by Steve Marshall, a palliative care social worker at King’s College Hospital, London. For his fellowship, Marshall visited Norway and Sweden in summer 2022 to meet and speak with health and social care professionals, all of whom worked with the issue of children as next-of-kin.

The aim of the fellowship was to learn about legislation enacted in 2010 in Norway and Sweden, giving rights to children as “next-of-kin”– when a parent has a serious illness in these countries, their dependent children have the right to information and support. Despite some challenges, the 2010 legislation has been incorporated into clinical practice and provides a framework for an approach that puts the needs of dependent children at its core.

UK context

I have worked with many patients with a life-limiting illness who have children under the age of 18. This can be an emotive and challenging part of the work of a palliative care specialist and many professionals can feel unskilled when working with these families. I found there were no evidence-based guidelines to support healthcare professionals with this work. Funded by the Marie Curie Research Grant Scheme, I was able to undertake primary data collection and interview 32 children and young people about their experience of having a parent with a life-limiting illness.

These interviews formed the basis of recommendations and guidelines for any professionals working with dying patients who have children under 18 and which I am now disseminating to colleagues to implement changes to their practice. I became aware that the Nordic countries (Denmark, Finland, Iceland, Norway and Sweden) take a pioneering approach towards the needs of children when a parent has a serious physical or mental health illness or abuses substances. The Nordic countries use the term “next-of-kin” to delineate these children and perceive them as a discrete and vulnerable cohort requiring additional support.

Fellowship visit

This report was completed after travelling to Norway and Sweden. Meetings were held with professionals from a range of backgrounds, including clinicians working in palliative care and oncology, children’s grief support workers, children as next-of-kin co-ordinators, child protection specialists, policymakers, researchers and academics.

I was able to attend home visits with several families who have young children. I was also able to attend the annual “Children as next-of-kin” Nordic Network meeting which took place in Odense, Denmark. This enabled me to network with colleagues from the other Nordic countries and learn about their approaches.

Key findings

Being child-focused – It became apparent that Norwegian and Swedish healthcare professionals are fundamentally child-focused. Children are perceived as individuals with their own basic human rights. There is a recognition that identifying and providing appropriate support to vulnerable children will help to ensure their wellbeing in adulthood. Examples of this include:

• A palliative care doctor took for granted that the needs of children would be addressed when a parent is referred to his service and assumed all countries had a similar approach.

• An oncology social worker stated that addressing the needs of dependent children was not questioned by anyone in her team.

• Sweden has updated its national guidelines for palliative care. One of the five recommendations is to “map the patient’s relationships with special regard to minor children as relatives”.

• A Swedish oncologist offers to speak with the dependent children of all her patients and encourages children to attend all hospital appointments.

• School nurses across Norway and Sweden have a remit for ensuring the welfare of children and most schools have their own social worker to support children in need.

Impact of the 2010 legislation – Many interviewees said the 2010 legislation provides a framework and justification for considering children’s needs. Examples of their impact include:

• Every hospital has two new roles: a “children’s ombudsman” and “children responsible personnel”. The ombudsman is the designated lead person for children as next-of-kin, ensuring they are identified and supported across the hospital. This role requires regular progress reports on this issue. One professional in every clinic and ward is assigned the duty of “children responsible personnel”, with allocated time to focus on ensuring the needs of children as next-of-kin are met.

• The responsibility of every ward and clinic to identify and support children as next-of-kin is well established and accepted. The children’s ombudsman in Gothenburg related an example of a complaint where the surviving partner of a deceased patient complained to the hospital, as they felt their 10-year-old child had not been involved as their father was dying, and that the child’s rights had been contravened.

• The 2010 legislation is actually referred to in clinical practice. When shadowing a social worker, reference was made to the rights of the dependent children and how the practitioner had a duty to consider the needs of the patient’s two children.

• In a Swedish palliative care team, every patient referred with dependent children is automatically contacted by one of the social workers to discuss the children’s needs.

Obstacles and challenges – Although everyone agreed that the 2010 legislation had made positive changes, some obstacles and challenges were described. This included:

• Patient confidentiality can be a barrier and takes precedence over the legislation around children as next-of-kin.

• Some interviewees described professionals who have a “tick-box” mentality towards the legislation. While acknowledging their duty, certain teams were seen as providing limited support.

• Addressing the issue in hospitals can be easier than in the community, as the 2010 legislation only puts the duty on healthcare professionals in hospitals. The role of “children responsible personnel” only exist in hospitals.

• There was no consistency about where to document details of dependent children on a patient’s notes. In Sweden, it is not permitted to document any details on patient notes.

Lessons for the UK

There is considerable overlap between the Nordic concept of children as next-of-kin and UK legislation around young carers: they both recognise the vulnerability of children living with a parent with a serious health condition and the listed conditions are the same across both UK and Nordic legislation. Therefore, the recommendations from this Churchill Fellowship – organised into four levels – will use the UK’s legislation around young carers as a foundation.

Team level – I plan to provide an education session to my colleagues in the palliative care team about how the Nordic countries approach the issue of children of parents with a life-limiting illness. This session will include clarification of the UK’s legislation around young carers. Thereafter, the team would be encouraged to:

• Identify any children who are impacted by the life-limiting illness of a patient.

• Document as much information as possible about the children.

• Inform patients that their dependent children would be considered young carers and therefore entitled to support.

• Develop information about children as young carers that can be given to all families that have young children.

• Provide information for patients about the right to a young carer’s assessment, how to access an assessment from their local authority and what support is available in their area.

Organisational level – Encourage and support other teams within King’s College Hospital to incorporate the recommendations from the team level. My intention is to begin by approaching the haematology, renal and liver teams, who have a high proportion of younger patients with children under the age of 18. Recommendations would be to:

• Develop a network of children’s champions. Following the model of “children responsible personnel”, to encourage each unit to identify a member of staff who is interested in this issue and would like to lead it.

• Nurture a core of senior staff who consider this issue to be a priority and will ensure it has backing at a senior level.

• Deliver education on children’s rights and the approach to children as next-of-kin taken by Nordic countries.

• Provide regular updates and support to the children’s champions, and develop educational resources for all staff.

Local level – Being based in a palliative care team in London, I have a network of colleagues with whom we work closely. My intention is to ask them to consider ways in which we can collaborate and incorporate the findings from this Fellowship.

National level – I intend to frame the national recommendations as a children’s rights issue, whereby children living with parental life-limiting illness in the UK are not being identified as young carers and are therefore being denied support. I plan to:

• Promote the findings to policymakers, politicians and peer networks.

• Develop a national network of children’s champions. I have approached the Childhood Bereavement Network and Hope Support to begin planning this network.

• Approach organisations working with young carers and discuss the overlap in our work.

• Collaborate with colleagues from the Cicely Saunders Institute at King’s College and discuss how the organisation can become recognised as a children’s rights respecting organisation.

Children as next-of-kin by Steve Marshall from https://media.churchillfellowship.org/documents/Marshall_S_Report_2023_Final.pdf