Claire Surr1, Alys W Griffiths2, Rachael Kelley2, Laura Ashley3, Fiona Cowdell4, Ann Henry5, Hayley Inman6, Michelle Collinson7, Ellen Mason7, Amanda Farrin7. 1. Centre for Dementia Research, School of Health and Community Studies, Leeds Beckett University, Leeds, LS1 3HE, UK. c.a.surr@leedsbeckett.ac.uk. 2. Centre for Dementia Research, School of Health and Community Studies, Leeds Beckett University, Leeds, LS1 3HE, UK. 3. School of Social Sciences, Leeds Beckett University, Leeds, UK. 4. Faculty of Health, Education and Life Sciences, Birmingham City University, Birmingham, UK. 5. Clinical Oncology, Leeds Teaching Hospitals NHS Trust, Leeds, UK and School of Medicine, University of Leeds, Leeds, UK. 6. Oncology Services, Bradford Teaching Hospitals NHS Foundation Trust, Bradford, UK. 7. Clinical Trials Research Unit, Institute of Clinical Trials Research, University of Leeds, Leeds, UK.
Abstract
OBJECTIVES: The risks of developing cancer and dementia increase as we age; however, this comorbidity remains relatively under-researched. This study reports on the challenges that people affected by comorbid cancer and dementia face when navigating engagement with cancer treatment within secondary care. MATERIALS AND METHODS: An ethnographic study recruiting 17 people with cancer and dementia, 22 relatives and 19 oncology staff in two UK National Health Service Trusts. Observations (46 h) and informal conversations were conducted during oncology appointments involving people with dementia. Semi-structured interviews (n = 37) with people living with cancer and dementia, their relatives and staff working in various roles across oncology services were also carried out. Data were analysed using ethnographically informed thematic analysis. RESULTS: People with cancer and dementia experienced challenges across three areas of navigating cancer treatment and care: navigating through multiple services, appointments and layers of often complex information; repeatedly navigating transport to and from hospital; and navigating non-dementia-friendly hospital outpatient environments alongside the cognitive problems associated with dementia. CONCLUSIONS: Dementia impacts patients' abilities to navigate the many practical aspects of attending hospital for cancer treatment and care. This study indicates the importance of addressing ways to improve the experience of travelling to and from the hospital, alongside extending the ongoing efforts to develop 'dementia-friendly' hospital in-patient areas and practices, to outpatient departments. Such steps will serve to improve hospital-based cancer treatment and care and more broadly outpatient appointment experiences for people with dementia and their families.
OBJECTIVES: The risks of developing cancer and dementia increase as we age; however, this comorbidity remains relatively under-researched. This study reports on the challenges that people affected by comorbid cancer and dementia face when navigating engagement with cancer treatment within secondary care. MATERIALS AND METHODS: An ethnographic study recruiting 17 people with cancer and dementia, 22 relatives and 19 oncology staff in two UK National Health Service Trusts. Observations (46 h) and informal conversations were conducted during oncology appointments involving people with dementia. Semi-structured interviews (n = 37) with people living with cancer and dementia, their relatives and staff working in various roles across oncology services were also carried out. Data were analysed using ethnographically informed thematic analysis. RESULTS:People with cancer and dementia experienced challenges across three areas of navigating cancer treatment and care: navigating through multiple services, appointments and layers of often complex information; repeatedly navigating transport to and from hospital; and navigating non-dementia-friendly hospital outpatient environments alongside the cognitive problems associated with dementia. CONCLUSIONS:Dementia impactspatients' abilities to navigate the many practical aspects of attending hospital for cancer treatment and care. This study indicates the importance of addressing ways to improve the experience of travelling to and from the hospital, alongside extending the ongoing efforts to develop 'dementia-friendly' hospital in-patient areas and practices, to outpatient departments. Such steps will serve to improve hospital-based cancer treatment and care and more broadly outpatient appointment experiences for people with dementia and their families.
Entities:
Keywords:
Alzheimer’s disease; Cancer treatment; Care pathways; Dementia; Environment; Ethnography; Transport
Authors: Simon N Rogers; Christine Allmark; Fazilet Bekiroglu; Rhiannon Tudor Edwards; Gillon Fabbroni; Robert Flavel; Victoria Highet; Michael W S Ho; Gerald M Humphris; Terry M Jones; Owais Khattak; Jeffrey Lancaster; Christopher Loh; Derek Lowe; Cher Lowies; Dominic Macareavy; James Moor; T K Ong; A Prasai; Nicholas Roland; Cherith Semple; Llinos Haf Spencer; Sank Tandon; Steven J Thomas; Andrew Schache; Richard J Shaw; Anastasios Kanatas Journal: Eur Arch Otorhinolaryngol Date: 2020-12-21 Impact factor: 2.503