Background National policy encourages people with Long Term Conditions (LTCs) to plan for end of life (Scottish Government, 2015; Henry, 2015). However, people can be reluctant to engage in conversations and as a result miss out on opportunities to make plans for the future whilst getting on with living (Detering et al., 2010).
Aim To identify what’s important to people in the last year of life in relation to planning ahead and what would support them to do this.
Methods 18 community engagement events were held in local venues. People with LTCs and carers were invited to discuss: What matters to you when you are living with declining health? What prevents you making plans for the future? What would help you to plan for the future and what support do you need to do this? Direct quotes from each session were analysed thematically using Framework analysis. The findings were verified at two further engagement events.
Results What matters to people: Maintaining independence and control, having a plan, important conversations, social support, and access to the right information. Barriers to planning were: Cost concerns, not knowing what to do or say, lack of social support and dealing with uncertainty. What would help? People wanted to maintain control and have a choice about accessing relevant and appropriate information. They wanted to know where to go and who to ask for help with planning for the future and saw their local communities as part of the solution.
Conclusion People with LTCs in the last year of life want to plan for the future but want to do this in their own way when they are ready. Engaging with this group has shown that services should be developed in partnership with the people who use them.
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