Designing the Hospice of the future: Developing a partnership with the next generation

Abstract

Introduction: Community engagement is essential to co-design new models of integrated, people-centred health services. Young people and adolescents form a significant population of the community; however their input is often overlooked when designing adult services. Hospice Isle of Man (IoM) aims to undertake an innovative approach, involving Manx young people directly, to ensure that a representative sample of the population contributes to the formation of a new Hospice strategy. Aims: 1. To engage with young people. 2. Explore current attitudes towards death, dying, bereavement and Hospice among young people. Methods: As part of Hospice IoM’s public engagement strategy, a series of “Listening Events” were held in seven community settings across the Isle of Man. This sought to obtain the community’s knowledge and views towards Hospice IoM. Whilst the proportion of those over 55 were over-represented compared to the Island’s population, those aged 54 and under were under-represented. To ensure that the views of the youngest population are captured, Hospice IoM has also carried out a series of “Listening Events” in secondary schools across the IoM. Alongside offering education about Hospices and palliative care, these “Listening Events” aimed to ascertain young people’s current understanding of Hospice, uncover what they would value most at Hospice, and obtain their recommendations for its future. The responses informed the design of a workshop for students aged 16 and over at University College IoM (UCM), due to take place in September 2018. In collaboration with UCM, Hospice IoM will partake in new student induction sessions with approximately 647 UCM students across 22 half-hour sessions. Students will be offered a self-administered questionnaire, composed of basic demographics and questions surrounding attitudes towards talking about death, planning for end of life, and supporting those who are dying. Topics for small group discussions include views towards death and dying, what makes a ‘good’ death, and designing the future Hospice for the IoM. Comments will be anonymously collected using post-it notes. Responses to closed questions will be analysed through STATA, whilst comments to open-ended questions will be coded and thematically analysed using Excel and NVivo. Results to date: In total, 203 11 to 16 year-old students, from three Manx secondary schools, participated. Preliminary findings revealed that young people possess limited knowledge about the Hospice identity and clients. When asked what would be most imported for them at Hospice, students commented on the environment and facilities, person-centred care, and effective care. Finally, the environment, facilities and expansion of Hospice IoM were the main areas of improvement suggested by young people. Conclusion: The preliminary results provide an insight into the views of young people towards Hospice IoM and palliative care. The workshops designed for UCM students offer opportunities for broader discussions surrounding attitudes towards death, dying, bereavement and Hospice. These findings will inform future Hospice strategies, and the engagement with youth may empower new relationships between Hospice and the Island’s next generation.

Keywords

• hospice
• community
• youth
• strategy
• attitudes