When people living with dementia say ‘no’: Negotiating refusal in the acute hospital setting

O'Brien, Rebecca; Beeke, Suzanne; Pilnick, Alison; Goldberg, Sarah E.; Harwood, Rowan H

Abstract

A quarter of UK acute hospital beds are occupied by people living with dementia (PLWD). Concerns have been raised by both policy makers and carers about the quality of communication between hospital staff and PLWD. PLWD may experience communication impairments such as word finding difficulties, limited ability to construct coherent narratives and difficulties understanding others. Since much healthcare delivery occurs through talk, healthcare professionals (HCPs) and PLWD are likely to experience increased communication barriers. Consistent with this, HCPs report stress and reduced job satisfaction associated with difficulty communicating with PLWD. HCPs face these challenges whilst striving to deliver person-centred care, respecting the autonomy and wishes of the patient before them. However, best practice recommendations in the field tend not to be based on actual interactional evidence. This paper investigates recurring interactional difficulties around HCP requests to carry out health and social care tasks and subsequent reluctance or refusal on the part of PLWD. Using conversation analysis, we examined 41 video recordings of HCP/PLWD interactions collected across three acute inpatient wards. We identify both the nature of the refusals, and any mitigation offered, and explore the requests preceding them in terms of entitlement and contingency. We also explore the nature of HCP requests which precede PLWD agreement with a course of action. We conclude that several features of requests can be seen to precede acceptance, principally the use of higher entitlement requests, and the lowering of contingencies. Our findings underline the importance of examining the contextual interactional detail involved in the negotiation of healthcare, which here leads to an understanding of how design of HCP requests can impact on an important healthcare activity being carried out. They also emphasise the power of conversation analytic methods to identify areas of frequent interactional trouble in dementia care which have not previously been articulated.

Citation

O'Brien, R., Beeke, S., Pilnick, A., Goldberg, S. E., & Harwood, R. H. (2020). When people living with dementia say ‘no’: Negotiating refusal in the acute hospital setting. Social Science and Medicine, 263, Article 113188. https://doi.org/10.1016/j.socscimed.2020.113188

• Journal Article Type: Article
• Acceptance Date: Jul 1, 2020
• Online Publication Date: Jul 17, 2020
• Publication Date: 2020-10
• Deposit Date: Aug 7, 2020
• Publicly Available Date: Jul 18, 2021
• Journal: Social Science & Medicine
• Print ISSN: 0277-9536
• Electronic ISSN: 1873-5347
• Peer Reviewed: Peer Reviewed
• Volume: 263
• Article Number: 113188
• DOI: https://doi.org/10.1016/j.socscimed.2020.113188
• Keywords: UK, dementia, conversation analysis, patient-centred care, requests, refusals, healthcare of older people
• Public URL: https://nottingham-repository.worktribe.com/output/4816124
• Publisher URL: https://www.sciencedirect.com/science/article/pii/S027795362030407X
• Additional Information: Rebecca, O., Suzanne, B., Alison, P., Sarah, G., & Rowan, H. (2020). When people living with dementia say ‘no’: negotiating refusal in the acute hospital setting. Social Science & Medicine, 113188. https://doi.org/10.1016/j.socscimed.2020.113188