Wandering the Wards; an Ethnography of Hospital Care And
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Wandering the Wards Wandering the Wards provides a detailed and unflinching ethnographic examina- tion of life within the contemporary hospital. It reveals the institutional and ward cultures that inform the organisation and delivery of everyday care for one of the largest populations within them: people living with dementia who require urgent unscheduled hospital care. Drawing on five years of research embedded in acute wards in the UK, the authors follow people living with dementia through their admission, shadowing hospital staff as they interact with them during and across shifts. In a major con- tribution to the tradition of hospital ethnography, this book provides a valuable analysis of the organisation and delivery of routine care and everyday interac- tions at the bedside, which reveal the powerful continuities and durability of ward cultures of care and their impacts on people living with dementia. Katie Featherstone is a Reader in Sociology and Medicine at the School of Healthcare Sciences at Cardiff University, UK. Andy Northcott is a Senior Lecturer at the Leicester School of Allied Health Sciences at De Montfort University, UK. Routledge Studies in Health and Medical Anthropology Depression in Kerala Ayurveda and Mental Health Care in 21st-Century India Claudia Lang Diagnosis Narratives and the Healing Ritual in Western Medicine James P. Meza Haemophilia in Aotearoa New Zealand Julie Park, Kathryn M. Scott, Deon York, and Michael Carnahan The Anthropology of Epidemics Christos Lynteris, Frédéric Keck and Ann H. Kelly Locating Zika Social Change and Governance in an Age of Mosquito Pandemics Edited by Kevin Bardosh Affective Health and Masculinities in South Africa An Ethnography of (In)vulnerability Hans Reihling Wandering the Wards An Ethnography of Hospital Care and its Consequences for People Living with Dementia Katie Featherstone and Andy Northcott www.routledge.com/Routledge-Studies-in-Health-and-Medical-Anthropology/ book-series/RSHMA Wandering the Wards An Ethnography of Hospital Care and its Consequences for People Living with Dementia Katie Featherstone and Andy Northcott First published 2021 by Routledge 2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN and by Routledge 52 Vanderbilt Avenue, New York, NY 10017 Routledge is an imprint of the Taylor & Francis Group, an informa business © 2021 Katie Featherstone and Andy Northcott The right of Katie Featherstone and Andy Northcott to be identified as authors of this work has been asserted by them in accordance with sections 77 and 78 of the Copyright, Designs and Patents Act 1988. The Open Access version of this book, available at www.taylorfrancis. com, has been made available under a Creative Commons Attribution- Non Commercial-No Derivatives 4.0 license. Trademark notice: Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe. British Library Cataloguing-in-Publication Data A catalogue record for this book is available from the British Library Library of Congress Cataloging-in-Publication Data Names: Featherstone, Katie, author. | Northcott, Andy, author. Title: Wandering the wards : an ethnography of hospital care and its consequences for people living with dementia / Katie Featherstone and Andy Northcott. Description: New York : Routledge, 2020. | Series: Routledge studies in health and medical anthropology | Includes bibliographical references and index. Identifiers: LCCN 2020029499 (print) | LCCN 2020029500 (ebook) | Subjects: LCSH: Dementia--Patients--Care. | Dementia--Patients-- Care--Great Britain. Classification: LCC RC521 .F43 2020 (print) | LCC RC521 (ebook) | DDC 616.8/31--dc23 LC record available at https://lccn.loc.gov/2020029499 LC ebook record available at https://lccn.loc.gov/2020029500 ISBN: 978-1-350-07845-1 (hbk) ISBN: 978-1-003-08733-5 (ebk) Typeset in Times New Roman by SPi Global, India To Nick, Jerry, and Louie Contents Preface viii Acknowledgements xx 1 Ward cultures of care 1 2 Ward life 19 3 Visibilities and invisibilities 36 4 Recognition and attribution of dementia at the bedside 56 5 Tightening of the timetables and the organisation of bedside care 76 6 Bedside talk and communicating the ‘rules’ of the ward 98 7 Organisational cultures of containment, restriction and restraint 119 8 Wandering the wards 138 References 152 Index 161 Preface This book is the culmination of the five years we have spent wandering these wards, exploring the everyday organisation and delivery of work within them, to examine the experiences and consequences for the significant population of people living with dementia admitted within them. Our research could not have happened without the support of the hospital staff, the nurses, healthcare assistants, auxiliary and administrative staff, therapists and medical teams who were so warm, open and receptive in welcoming two strangers into their workplace to observe, shadow, and essentially to follow them around with a note pad and pen. Nor would it have been possible without the many people living with dementia, their families and friends who were willing to let us observe their care, to join them at the bedside, to speak to us and share their deeply personal stories and experiences. Our research is publicly funded and has been supported by grants from the National Institute of Health Research Health Services and Delivery Research (NIHR HS&DR) funding programme. They have funded Katie as Principal Investigator, and Andy as co-applicant and researcher across two projects since 2015, and continue to fund and support our research. The work presented in this book is drawn largely from our experiences during our first ethnography, explor- ing ‘The management of refusal of food, drink and medications by people with dementia admitted to hospital with an acute condition’ (NIHR HS&DR project number 13/10/80) but also draws on elements of our second ethnography ‘Under- standing how to facilitate continence for people living with dementia in acute hospital settings: raising awareness and improving care’ (NIHR HS&DR project number 15/136/67). We were wandering the wards for this second study during the writing of this book and this enabled us to deepen, test, and refine our anal- ysis. This funding has given us the opportunity to spend 330 days within wards in 8 hospitals across England and Wales, almost a full calendar year, exploring and understanding the social processes and the cultures of care that inform the organisation and delivery of everyday bedside care that we present in this book. The start of our involvement Our own awareness of the impacts and experiences of people living with demen- tia within our wards happened by chance. We were invited to join a research development meeting with clinicians from the medical and surgical teams within Preface ix a large regional teaching hospital to discuss what they described as the ‘problem’ of dementia in their wards. The room was full and there was an animated debate about the best solution; the focus was on finding a potential ‘off the shelf’ inter- vention they could use and evaluate in their acute wards. We repeated a number of times: could they tell us what the key problem was? In the midst of intense debate, no one seemed to be listening and so tuning out we turned to our neigh- bour, who was the only dementia specialist nurse within this 1000-bed hospital. We still didn’t understand the issue and as we talked it became clear to her that we assumed she worked within one 30-bed specialist ward caring for people living with dementia, who had been admitted because they required specialist support and could no longer be cared for in the community. She viewed us with a mix- ture of exasperation, frustration, and weariness, and explained that no, almost 50% of the patients across the acute wards in this hospital were also living with dementia. This was the pivot point where the focus for our research programme became clear. Involving carers and people living with dementia At this very early development stage we relied on carers, who confirmed that the acute setting was an important site where research was needed, and where care quality was a pressing issue having a significant impact on their partners living with dementia. We were introduced to a local group of carers who kindly invited us to meet up with them. Over lots of tea and cake one afternoon, we asked them if hospital care was an issue for them. From our notes at the time, they all described the hospital as ‘the worst experience’, ‘scary’, ‘horrendous’, and ‘a very bad time’. Key factors for them included feelings of staff not listening to them, not respecting their experience or expertise in looking after their partner who was living with dementia and not considering their specific needs. They believed their partner was typically in worse health, with their condition significantly deteriorat- ing following an admission. They reported having lots of work to do to help their partners recover from a stay on an acute ward, regaining skills and independence (particularly the loss of mobility and walking, continence, and sleeping patterns) that had been lost during their admission. They reported that in their experience, people living with dementia were expected to conform and to behave ‘normally’ within wards. They described to us how failure to conform often resulted in fur- ther sanctions, including security guards being called and stationed at a person’s bedside. This was the start of a longer-term collaboration with this group and a large network of carers, which have become more enduring friendships. Throughout our ethnography, at every stage we have involved carers and peo- ple living with dementia in the priority setting, development, planning, analysis, and governance of our research. They have also been closely involved in our ongoing efforts to use these findings to develop and test interventions to support acute wards and improve care.