Background Co-design of services is increasingly recognised as an important means of ensuring development of people-centred services. Young people and adolescents are not often consulted when designing adult services but Hospice Isle of Man (IoM) aimed to change that.
To engage with young people.
To explore their attitudes towards death, dying, bereavement and Hospice.
Methods Hospice IoM’s public engagement strategy started with ‘Listening Events’ in seven community settings which obtained views towards Hospice. Males and young people were under-represented so events were offered in secondary schools. A short session on end-of-life and palliative care was incorporated with activities to ascertain understanding of Hospice, uncover what was most valued and obtain recommendations for Hospice’s future.
Students were asked ‘What do you know about Hospice’? ‘If you or a family member became seriously unwell and needed Hospice services, what would be most important to you?’ and ‘How could we make Hospice a better service?’ Responses were made on post-it notes and analysed using NVivo. Themes and sub-themes within responses were identified.
Results 203 students (105 males, 98 female) aged 11 to 16, participated. For the first question, the themes were purpose (sub-themes helping and caring), services (sick or illness) and users. It was clear that many young people knew nothing about Hospice. For the second questions on what matters themes ‘were how you feel’, ‘support services’, ‘staff qualities’, ‘environment’, ‘loved ones’ and ‘entertainment/activities’. For the third question, community activities and age-appropriate care feature with suggestions that Hospice should feature more prominently within the local community and online.
Conclusion Young people provided a wealth of information from their own perspective and appreciated being involved at this level. These findings will inform future Hospice strategies, and the engagement with youth may empower new relationships between Hospice and the Island’s next generation.
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