Article Text
Abstract
Background Those who access end of life services, as well as those who financially support them, need robust evidence about the difference these services make. To evidence impact, the starting point is to be clear about the difference a service or project intends to make.
Aims This project aimed to develop an Impact Framework to support everyone in our organisation to describe what they do, why it matters and what difference their work makes in a logical and convincing way. This work built on a 2020 project that identified six high-level themes that are important to end of life experience from the perspective of staff and volunteers. This project aimed to assess the extent that the 2020 framework reflected perspectives of people with lived experience.
Methods Step 1: A representative Ipsos telephone omnibus survey (n=921). The focus of the survey was this open-ended question: ‘What do you think matters most to people in the last few years of their life?’ Responses were thematically coded using NVivo. Step 2: An online workshop with three people with lived experience about what they think is most important to people at end of life, and to discuss their views of the Impact Framework. Participants supported the generation of illustrative statements for each theme.
Results The data supported the six themes identified in the first iteration. The language used to describe each theme was adjusted to better resonate with people with lived experience.
Impact themes:
Identity, values and beliefs.
Mental health and emotional wellbeing.
Physical health and wellbeing.
Practical, financial and work concerns.
Relationships and social life.
Voice, dignity and respect.
Conclusions Using these results, a staff guide has been developed to support colleagues in telling the story about the difference their work makes.