“No decision about me without me.” Do people with an acquired communication disability think that they can influence strategic healthcare decision-making?

Abstract

This thesis presents my Professional Doctorate research and practice development concerning the extent to which public participation leads to influence in strategic healthcare planning. The decision to undertake this study was informed by my observations of practice as a Speech and Language Therapist and my personal experiences as a citizen of the United Kingdom. My personal narrative is used to show how integral my own beliefs and understandings are to the topic of my study and my embodiment in the role of researcher. The context for my research was the National Health Service (NHS) public engagement agenda and of specific focus within this context were the views of Dorset residents who are living with an acquired communication disability (ACD). In particular, I have sought to discover how this group of people frame their thoughts regarding their ability to influence NHS strategic decision-making. This is an aspect of NHS public engagement activity which has not been previously investigated. As a counter-perspective, the views of NHS commissioners in Dorset regarding their ability to be open to the influence of others were also gathered. Influence mapping activities were used with both sets of participants and the resultant associated conversations were recorded. An ethnomethodological ethnographic framework was chosen to analyse the conversations and explore the ‘ethno-methods’ or taken-for-granted practical reasoning which each participant used to situate their views. This analytical approach is one which has been little used to investigate participatory constructs and one which I found merits further development. My research findings indicate that participants with ACD used their knowledge of the world as members of UK society to frame their understanding of their power to influence and that their communication disability was not necessarily the most salient determinant within this. The ability of the NHS commissioning structure to accommodate citizen input was seen to be limited by participant groups. Each of us deploys our stock of common-sense knowledge and understanding to organise our approach to situations and because it is taken for granted by each of us it is very rarely interrogated. Further research is needed to explore how a better understanding of these hidden methods might be used to improve the NHS participatory environment and to grow public confidence in the purpose of participation.