What is important to measure in the last months and weeks of life?: A modified nominal group study
Section snippets
What is already known about the topic?
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Health professionals and service managers often determine what issues are important to ensuring good quality care for those who are coming to the end of their lives.
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There is a dearth of United Kingdom based literature on what is important to measure at the end of life from a users perspective.
What this study adds
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United Kingdom focus to the debate about what is important to measure at the end of life.
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Co-ordination and continuity of services is an important issue in United Kingdom end-of-life care.
Aims
In this study we, therefore, aim to investigate what is important to measure in the last months and weeks of life, from the perspectives of patients, bereaved relatives and health professionals in the UK.
Method
Data was collected using an amended nominal group technique. The nominal group technique utilises a highly structured group format, which, unlike a usual focus group, deliberately aims to limit the interplay of the researcher in the generation of ideas, clarification of issues and setting of
Themes
Fourteen themes emerged from the data generated in the nominal groups. These themes and their components are shown in Table 2.
Ratings
The themed statements receiving the highest ratings in each group are shown in Table 3. The range, median and total ratings for highest themed statement per group are provided.
Three groups rated ‘symptom management’ themed statements most highly, as did three groups for ‘quality of life’ and ‘relationships’ themed statements. One group rated ‘preparation’ most highly,
Discussion
In our study we successfully used a modified form of the nominal group technique to ascertain the views of service users and health professionals about what is important to people in the last weeks and months of life. Most of the seven themes that emerged as most important in our study were supported in the existing literature: symptom management (e.g. Emanuel and Emanuel, 1998; Steinhauser et al., 2000; Singer et al., 1999; Payne et al., 1996); preparation (e.g. Wilkes, 1993; McNamara et al.,
Conclusions
Despite the limitations in this setting of the nominal group technique, we have been successful in identifying aspects of end of life care that is important to patients, families and health professionals in the UK. Our samples were not intended to be representative of the wider population in the UK, and this limits the conclusions that can be drawn. However, the degree of concordance between our findings and those of previous studies in a range of Western countries suggest that the items we
Acknowledgements
Thanks are due to the patients, bereaved relatives and professionals who participated in the amended nominal groups and to our colleagues who contributed to the work reported here, in particular, Jayne Chidgey, Uta Drescher and Floss Chittenden. We are indebted to our Project Advisory Group who supported and advised us throughout the study and to The Community Fund who funded this research through a grant to St Christopher's Hospice with whom we worked in partnership.
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