Life’s Questions encouraged school-age children from primary to higher education to have conversations about dying, death, loss and grief in a controlled environment.
**Please note that Lisa Patterson no longer works for St Nicholas Hospice Care and ‘Life Questions’ is not currently active** (ehospice note July 2023).
Lisa Patterson, Community Hospice Educator and RGN at St Nicholas Hospice Care in Suffolk, along with Dr Guy Peryer PhD, University of East Anglia, tells us about the programme she’s created to encourage children to talk openly about death, loss and grief.
When I’ve spoken to students about nursing and end of life care, I’ve recognised how intrigued and inquisitive they are around the various aspects of death. They often share their own experiences, and as a result I identified an opportunity to design a practical approach that provides emotional support to children facing loss and grief.
Encouraging conversations about death and dying
NHS England previously produced participation guidance to support the Dying Matters coalition in its work to promote public awareness and conversations about death and bereavement. Similarly, ambition 6 of the Ambitions for Palliative and End of Life Care 2015-20 recommends that hospices engage in community development programmes so people are ready, willing and confident to have conversations about living and dying well, and to support each other in emotional and practical ways.
Before developing Life’s Questions, St Nicholas Hospice Care was already facilitating a Church of England initiative called GraveTalk, which encourages discussions on life, society, death, funerals, and grief. Considering this initiative, I worked with professionals within the hospice to create questions appropriate for teenagers. In November 2017, we piloted a session for eight teenagers aged 13-18 years, testing its feasibility, acceptability, and appropriateness. The feedback from teenagers was positive, and we had comments like “there is nothing like this in our schools” and “it would work well with people we know”.
Using a public health approach that promotes early intervention, prevention, and harm reduction, Life’s Questions encourages students to have open discussions about death, loss and grief in an accessible, non-judgemental way. The programme aims to equip children with the skills and techniques they need to improve their psychological resilience, as well as empower them to feel confident providing support to their peers and friends through active listening, which will in turn support their own wellbeing.
Teaching death literacy in schools
The first request to deliver Life’s Questions came from a special educational needs school. Their headteacher told us they believed that “being able to talk about death and loss is a life skill needed by all children irrespective of age, ability and experience”. Learning from this school helped us create an approach that supports children to express their views in an environment that feels safe.
We incorporate soft questions at the beginning, blending motivational, open, closed, and leading questions that enable students to gain a sense of ownership of the session. The questions are adapted for different age groups and size of the audience, but always end with a positive or motivational question. The feedback we’ve had from the project has demonstrated that children can actively engage in these types of conversations with maturity and interest.
Since our initial session in May 2018, we have facilitated sessions in primary, secondary, and higher education institutions, with many requesting repeat visits. Since the COVID-19 restrictions began Life’s Questions moved to an online platform. It has enabled health and social professionals to take part, empowering them to have conversations on advance care planning and bereavement. We’ve also presented Life’s Questions to youth groups, parent groups, public forums and volunteers.
A much-needed initiative
To date, more than 1,500 children and adults have attended sessions. Requests to deliver sessions have increased significantly, and the programme is even reaching international audiences – in 2019 I represented St Nicholas Hospice Care at the 6th International Public Health Palliative Care Conference in Australia.
The programme was highly commended in the BMA Patient Information Awards in 2019, with judges stating “this is a much-needed initiative directed at one of the most important age groups.” Life’s Questions has also been shortlisted in the 2020 Nursing Times Awards for Children’s Services and Integrated Approaches to Care.
Recruiting volunteers from our community to join our team, including university students, retired teachers, nurses, and industry experts has provided vital support for the project. Training is given on understanding loss, grief and bereavement, communication skills, safeguarding, and reflective practice. The first year we recruited twenty people from our community, and a further twenty this year to meet the growing demand for sessions. We have also recruited and trained volunteers to help deliver additional sessions as the schools reopen.
I’ve developed a step-by-step training manual so that looking ahead, other hospices can explain how to facilitate sessions to different groups and train newly recruited volunteers. Schools may also be interested in adopting the project, and training their staff to deliver Life’s Questions as part of their Personal, Health and Social Education programmes as per recent guidance from the Department for Education. The manual will soon be ready for wider dissemination.
In creating this initiative, we listened to our audiences and adapted where necessary to suit different environments and age groups, leading to a programme that is inclusive for our entire community. With it moving online due to COVID-19 restrictions, it is now reaching health and social care professionals too, empowering more people to have conversations with children and young people about advance care planning and bereavement.
- For more about St Nicholas’ Hospice’s courses and programmes visit St Nicholas Hospice