Sheila Kitzinger 2016-17 Programme Events

Communicating to children about life threatening illness: critical to children’s health and resilience

February 2017

This Sheila Kitzinger Programme meeting was a unique opportunity to bring together colleagues with a diverse range of academic and clinical experience from both high-income and low-income countries, with the aim of developing evidence-based guidelines for communicating with children about life limiting illness in either themselves or their parent. The workshop was convened by Professor Alan Stein, Professor of Child and Adolescent Psychiatry, Oxford.

The meeting included presentations on a range of topics, including children’s developmental understanding of illness and death, the use of story books to promote adaptive coping for parents and children following illness or death in countries with low levels of literacy, interventions to support parents to disclose their HIV status to their children and current practice in end of life care for children and parents.

In addition to these formal presentations and subsequent discussion, participants also worked in small groups to consider the particular experiences and challenges for parents and children of different ages and in different healthcare settings at the time of diagnosis of life limiting illness. These hypothetical scenarios then formed the basis for a session focused on generating principles for communicating with children. The next key challenge was to consider how these principles could be delivered in very different healthcare contexts, e.g. from a Western Specialist Oncology Unit to a rural clinic in sub Saharan Africa. The group also spent time considering the specific barriers to communication for children, parents and healthcare professionals.

The work conducted over the course of the meeting was summarised in a series of slides, circulated to all participants, culminating in some suggested principles of communication for children of different ages and circumstances. These outputs form a key component of two review articles, submitted to the Lancet. These papers detail the empirical evidence about communicating with children in the case of child illness (paper 1) and parental illness (paper 2), before giving practical recommendations about communication.

Articles

• Communication with Children and Adolescents about the Diagnosis of their own Life Threatening Condition
• Communication with Children and Adolescents about the Diagnosis of a Life Threatening Condition in their Parent

In addition to the written workshop outputs and review papers, the participants of the workshop have forged important international links between themselves, and are all committed to taking this work forward in the future. Ideas include regular meetings to develop research projects to address the current gaps in knowledge and plans to generate specific teaching and training resources available for healthcare professionals working across the globe.

End of Life Decision Making for Patients in Prolonged Disorders of Consciousness: Human rights, ethics, law, medicine, science and society

April 2017

A two-day international seminar curated by Professor Celia Kitzinger (York) and Professor Jenny Kitzinger (Cardiff) of the Coma and Disorders of Consciousness Research Centre.

Modern medical technologies and current legal practices are such that patients in prolonged disorders of consciousness (vegetative or minimally conscious states) are often maintained for years – or decades – after their families believe they would have wanted treatment withdrawn. Our aim was to bring together a small group of international experts (plus some early career researchers for capacity-building) to share experiences, to learn from the ways systems work in different countries, to identify the problems in diverse systems, and to work towards solutions.

Contributions will be published as a collection in either an edited book or a special issue of a journal.