Capturing the impacts of end of life care on those close to the dying for use in economic evaluation

Abstract

This thesis reports work to develop and score (value) a measure to capture the impact of end of life care (EoLC) on those people close to the dying. This work is conducted in response to the need to capture wider impacts of EoLC for economic evaluation where there is lack of appropriate measures. To develop the measure, twenty seven in-depth interviews were conducted with those who were recently bereaved or close to somebody receiving EoLC. Constant-comparative analysis was used to develop dimensions for the measure. Pictorial tools were used to explore who is close to those at the end-of-life and therefore could legitimately be included within the evaluation of EoLC interventions. The measure was valued using an exploratory deliberative methodology conducted with six focus groups comprising members of the public. The measure contains six dimensions: $communication$ $with$ $those$ $providing$ $care$ $services$, $practical$ $support$, $privacy$ $and$ $space$, $emotional$ $support$, $preparing$ $and$ $coping$ and $emotional$ $distress$. The communication and practical support attributes received the greatest weighting in the valuation process. On average, there were eight individuals close to those at EoL. This work significantly enhances the potential for including close-persons in economic evaluation of interventions at the end of life