Abstract

Background/Aims End-of-life care is a targeted area of healthcare service reform. Complaints are increasingly recognised as a valuable source of evidence for evaluating practice and informing service improvement work. This project aimed to develop a tool to support the standardised coding, categorisation and organisational use of formal complaint data concerning end-of-life care for adults. Methods A service evaluation was conducted using existing data. Deductive analysis was conducted with 59 letters of formal complaint submitted to an NHS trust in the Midlands, UK. A published healthcare complaints analysis tool served as a thematic framework for use in conjunction with framework analysis. The project was carried out in two stages: the first comprised preliminary work to produce a template of end-of-life care concerns; the second involved pilot testing the face validity of the template when used as a coding and categorising scheme. Results An initial template of 20 subcategories of end-of-life care concerns were developed from the data during preliminary work. This template was deemed to enable the analyst to focus on predefined areas of interest, organise concerns into relevant themes, concisely present the data in a summarised form and provide meaningful objective conclusions. During pilot testing, 185 complainant concerns were coded and categorised, over half of which fell into the domain of ‘relationship problems’ (n=99; 53.5%). Within this domain, the most common problem categories were ‘communication’ (n=44) and ‘respect and rights’ (n=44). A total of five new subcategory concerns were also derived and added to the template. Collectively, the outcomes of complaint data analysis informed the structure of a dedicated end-of-life care complaint analysis tool comprising 25 subcategories of end-of-life care concerns and accompanying exemplar indicators, together with criteria that were meaningful to identifying the context of the care concerns. Conclusions A systematic approach to analysing and reporting complainants' experiences of end-of-life care has the potential to support organisational learning, quality monitoring and bespoke service improvements in response to collective complaints and concerns.

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