Evidence gathering: what were our questions – and what were the answers?

Phase 1 (January to March 2011) focused on gathering evidence on the experience of young people and their families at transition and generated a series of
recommendations for action. The key question explored in Phase 1 was: What are the issues and opportunities for young people with life-limiting conditions, and for their families/carers, in managing their own best transition to becoming young adults? 

The phase 1 full report, its executive summary and its annexes  can be downloaded here:phase 1 full report ; exec summary of report phase 1 ; Annexes phase 1. A video about the results of the evidence gathering events can be viewed here

An accessible more visual version of the Phase 1 work was also produced ‘Making the Most of Life’: Making the most of life[1]

In developing the Phase 2 work, the overall question was :

What stimulates & sustains satisfactory holistic support into adulthood for young people who have complex health needs?

Over the period of Phase 2, much more evidence was gathered and there was a subtle but important shift in emphasis, which is reflected in the core question posed at the final Programme event in June 2012:

In these difficult times, what can and must be done so that young people can achieve a decent adult life?

This question underscores the vital recognition that proposals to develop a positive transition and to enable young people to achieve their aspirations for adulthood must be rooted in the realities of difficult economic times and the rigours of setting real and achievable priorities for action. The term ‘a decent life’ was adopted to express the nuances involved in recognising the legitimacy of aspirations for these young people whilst also acknowledging that the ideal may be unachievable, as it usually is for the rest of the population. The boundaries imposed by these constraints together with a commitment to co-producing feasible and affordable solutions to transition dilemmas with young people themselves have shaped the work of the programme during Phase 2, that is presented in the rest of this site.

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