Close person spill-overs in end of life care: using hierarchical mapping to identify whose outcomes to include in economic evaluation

Research output: Contribution to journalArticle

Authors

Colleges, School and Institutes

External organisations

  • BRISTOL UNIVERSITY
  • University of Warwick

Abstract

Background: Guidelines for economic evaluation often request that costs and outcomes beyond the patient are captured; this can include carers and also other affected parties. End of life care is one context where impacts of care spill over onto those other than patients, but there is little evidence about who should be included within economic evaluation. The purpose of this paper is to examine (i) how many people are close to those at end of life (ii) their characteristics and (iii) what influences network size at end of life.

Methods: In-depth interviews were conducted with 23 participants who were either recently bereaved or had somebody close to them currently receiving end of life care. Interviews were used in conjunction with hierarchical mapping to explore the network size, composition and influences upon these networks. Interviews were transcribed verbatim. Descriptive statistics were used to analyse the hierarchical maps and this information was combined with a constant comparative analysis of the qualitative data.


Results: On average, close-person networks at end of life contained eight individuals, three of whom were rated as being ‘closest’. These were typically family members although in a small number of cases non-family members were included amongst the closest individuals. There was variation in terms of network composition. Qualitative analyses revealed two key influences on network size: death trajectory (those with cognitive problems/diseases towards end of life had smaller networks) and family size (larger families had larger networks).

Conclusion: The findings of this paper have important implications for researchers wishing to include those affected by end of life care in economic evaluation. Focussing on the three closest individuals would be a key starting point for economists seeking to capture spill-overs whilst a truly societal perspective would require looking beyond proximal family members. This paper further discusses the implications of including close-persons in economic evaluation for decision makers.

Key points:
-We use hierarchical mapping alongside in-depth interviews to examine who and how many are close to those at end of life and could be considered for inclusion in economic evaluation.
-On average, networks at end of life contained eight people, of which three were rated as the closest. Family members were typically closest, although this was not always the case. Likewise, geographical proximity was not necessary to maintain close person relationships.
-Qualitative analyses revealed two key influences on network size: death trajectory (those with cognitive problems/diseases towards end of life had smaller networks) and family size (larger families had larger networks). These findings have important implications for researchers wishing to include close-persons affected by end of life care in economic evaluation.

Details

Original languageEnglish
Pages (from-to)573–583
JournalPharmacoEconomics
Volume37
Issue number4
Early online date15 Mar 2019
Publication statusPublished - Apr 2019