What is dignity? A literature review and conceptual mapping

Abstract

Background Whilst dignity is a prominent issue in health care, no standardised questionnaire exist that capture the multi-faceted nature of it. Those questions that do exist cannot be used in cost-effectiveness analysis as they lack the relevant measurement properties required. This study describes the work done to date on a programme of research undertaken in collaboration between the University of Sheffield and the Devices for Dignity (D4D) Project that assesses what is meant by dignity and to what extent it relates to more readily recognised concepts used within health services research. Methods A literature review was undertaken based on documents known to the authors and the Devices for Dignity (D4D) project based in Sheffield, together with references ‘pearl grown’ from the documents plus ad hoc electronic searches. A qualitative framework was used to identify those concepts that were used in the literature and an attempt made to show how each of these were related in a ‘conceptual map’. A possible set of questions was then developed that linked to the conceptual map. Results Only a few journal articles were found that explored the concept of dignity in theoretical terms. Most articles took a nursing perspective and so were largely focused on carer-patient interactions, although other aspects of the care process were also included, such as the care environment. Others took a broader perspective and looked at dignity as a concept across all aspects of life. A wide range of pre-existing questions were identified from the literature that attempted to measure dignity directly, or indirectly through factors that are thought to influence it. Other concepts and questions related to dignity were identified that encompassed notions of patient satisfaction, patient experience, autonomy, control, self-esteem and quality of life. We developed our own conceptualisation of dignity that attempts to describe the links between dignity, the environment, processes of care, capabilities, functionings and well-being. This framework is thought to work quite well in describing the various influences on dignity, capturing all the identified concepts and linking into an overall model of well-being that has been developed by Sen in the broader economics literature. Conclusions Many different definitions and conceptualisations of dignity exist in the literature. Consequently it is unclear what it means, how it should be measured and how it relates to other concepts used in health technology assessment. We have developed a conceptual map of dignity and well-being that is capable of incorporating the vast majority of the care-related issues highlighted in the literature. This appears to be a valuable starting point for further research to measure dignity, and apply it in health technology assessment alongside generic instruments such as the EQ-5D