Stakeholder Perceptions of Dignity Therapy for Children and Young People with Life-Limiting and Life-Threatening Conditions in the UK

Abstract

In palliative and end of life care settings supporting people to make sense of their lives is as important as managing disease symptoms. Dignity Therapy is a validated psychotherapeutic intervention designed to bring about a sense of meaning and purpose for individuals at the end of life. Dignity Therapy has primarily been implemented and evaluated in adult palliative care settings. Prior to designing studies that evaluate Dignity Therapy for children and young people with life-limiting and life-threatening conditions, it is essential to establish stakeholders' perceptions of Dignity Therapy, and whether adaptations would be required for this client group. We aimed to explore the acceptability of Dignity Therapy for children and young people with life-limiting and life-threatening conditions and health professionals, and report findings from our stakeholder activities. Stakeholder consultation activities involved one Death Café and two workshops, with over 80 health professionals, hosted at two hospice settings, and a range of social media activities including feedback from five young people with life-limiting and life-threatening conditions via a closed Facebook group and a twitter chat with 22 contributors. Data included field notes, workshop outputs ('post-it ideas storm' and 'diamond ranking') and social media postings that were analysed using thematic analysis. Across stakeholders, there was overwhelming support for explicit interventions that support the psychosocial and spiritual needs of children and young people with life-limiting conditions. Dignity Therapy could be a supportive intervention to promote open conversations about life, meaning and purpose and dying, between the child or young person, family members and health professionals, but needs adapting to meet their needs. A tool kit of interventions, appropriate to a range of ages and cognitive abilities was suggested, for example a storybook for young children and a digitalised version of dignity therapy for older children/young people. Collaboration with stakeholders is the first stage in developing, or adapting an existing intervention in a different context, a complex intervention. Our stakeholder consultation highlighted that Dignity Therapy has potential to improve the psychosocial and spiritual wellbeing of children and young people with life-limiting and lifethreatening conditions, through recalling memories and thinking about the things that are important to them and what they want to be remember for. Research is now needed to develop and test a Dignity Therapy intervention for children and young people with lifeliming and life-threatening conditions in the UK.

Researching sensitive topics in healthcare

“…Ensuring the research is developed and undertaken in a way that is sensitive and in a way that is sensitive and acceptable to the needs of participants 9 10…”

“…It is important that involvement is not seen as tokenistic. Including users and ambassadors as co-researchers can also benefit many research endeavours 9 10…”