Introduction The end of life care needs of young adults, aged 16–40 years, are poorly described in current literature and no specific guidance exists for professionals that takes account of factors such as rarity, cancer type, heterogeneity and influence of life stage.
Aims and Methods We will use using realistic evaluation to understand:
A. Core components in pathways of care in the last year of life for people with cancer aged 16–40 years.
B. How young adults and their families can be supported to achieve their preferences for care.
C. Challenges for health and social care professionals.
Work commences in 2013 and is linked to quantitative data from NIHR national programme, BRIGHTLIGHT (http://www.brightlightstudy.com). Research will be conducted in three or more sites across UK and includes patients, families and multiple professional disciplines as participants, shaping investigation and outputs.
There are five phases:
1. Drawing together literature and national cancer intelligence;
2. Interviews with young adults, families and professionals;
3. Scenario workshops with families and professionals;
4. Analysis and interpretation of data including refinement through discussion with a panel of experts;
5. Development of recommendations for practice.
Results Findings from BRIGHTLIGHT will be synthesised with our emerging qualitative data to inform explanations on needs and preferences for care in young adults and their families as the project progresses.
Conclusions This innovative, comprehensive study of the end of life needs of young adults aged 16–40 years uses in-depth, multi-layered data which will inform understanding of need and inform policy and service delivery.
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