This comprehensive Research Handbook provides an accessible overview of research on palliative and end of life care in its social context. It examines key theories, methods and research findings, presenting crucial social science and public health perspectives.
Leading and emerging international scholars discuss a range of issues including population ageing, growing pressures on health and social care systems, assisted dying and new cultural responses to human mortality and bereavement. They delve into detailed case studies, such as the genealogies of culturally specific nursing, home care in Europe, patient and public involvement in the UK, end of life care pathways in Japan and palliative care in resource-poor settings within African countries. Adopting an interdisciplinary approach, the Research Handbook also addresses models of end of life care in relation to wider society, and outlines future research priorities.
This insightful Research Handbook will greatly benefit students and scholars of sociology, anthropology and social policy, particularly those who are studying public health, the welfare state and social work. It is also a vital resource for practitioners and policymakers in palliative and end of life care.
Contents
1 Scoping the field of end of life care and society 1
David Clark and Annemarie Samuels
PART I Theories, methods, and boundaries in end of life care research
2 Theorising end of life care 13
Vibeke Graven, Michael Hviid Jacobsen and Helle Timm
3 Ongoing dilemmas and new approaches in palliative care and end of life care research: methods, ethics, and patient and public involvement in the United Kingdom 29
Clare Gardiner and Emilie Couchman
4 Humanities collaborations in end of life care 47
Jordan Owen McCullough and Anna Magdalena Elsner
5 Public engagement in palliative and end of life care research 61
Sonja McIlfatrick and Deborah Muldrew
6 Total pain and human gut microbiota 81
Marian Krawczyk
7 Inclusiveness in research teams: reflections on the Te Ārai Palliative Care and End of Life Research Group, a decade on 99
Tess Moeke-Maxwell, Merryn Gott and Brianna Smith
8 Plural imaginaries: reflections on end of life care from India 115
Devi Vijay
PART II Culture, communication, and context
9 Homing in on societal changes in meanings around place of death 132
Renske Visser
10 Displacement and re-imagining end of life care 142
Parin Dossa
11 Belonging at the end of life: genealogies of ‘culturally specific’ nursing home care in Europe 156
Olivia Killias and Eva Soom Ammann
12 Sociocultural diversity in approaching pain at the end of life 173
Adrienne E. Strong and Megan D. Cogburn
13 Bioethical frameworks in end of life care decision-making 188
Sandra Martins Pereira, Paulo J. Borges and Pablo Hernández-Marrero
14 Cultural communication in palliative care 212
Liesbeth Mirjam van Vliet, Edison Iglesias de Oliveira Vidal, Masanori Mori, Constance Dahlin, Eve Namisango, Olaf Geerse and Diah Martina
PART III Fields of practice
15 Standardisation of end of life care 232
Shimon Tashiro and Tatsuya Morita
16 Compassionate Communities 246
Bert Quintiens and Steven Vanderstichelen
17 New approaches to bereavement experience and research 268
Lucy Selman
18 Talking about dying and end of life care 291
Gitte Koksvik
19 Politics and practices of assisted dying 304
Marcos Freire de Andrade Neves
20 Death, dying, and design 319
Bruce M. Tharp
21 The arts in palliative care: critical perspectives on evidence and practice 336
Giorgos Tsiris and Jenny Baxley Lee
PART IV Social inequalities
22 End of life and poverty 354
Maddy French and Yakubu Salifu
23 Barriers to accessing end of life care for minority ethnic communities 367
Sophie Law-Clucas and Jonathan Koffman
24 Gender and end of life care work 381
Merryn Gott, Tessa Morgan, Lisa Williams and Julia Slark
25 Homelessness at the end of life 399
Kelli I. Stajduhar and Ashley Mollison
26 Dying in the Margins: a case study of methods and impacts 419
Sam Quinn and Naomi Richards
27 Who gets specialised care at the end of life? 443
Stephen Connor and Carlos Centeno
PART V Policy interventions
28 The opportunities and limitations of ‘choice’ at the end of life 461
Sandy Whitelaw and David Clark
29 National policies for end of life care 478
Chao Fang
30 Public health interactions with palliative and end of life care 491
David Clark and Sandy Whitelaw
31 The global spread of palliative care: how models, ideas, and practices travel 508
Natashe Lemos Dekker
32 Mapping the development of palliative care in resource-poor settings: examples from African countries and contexts 521
Eve Namisango, William E. Rosa and Yakubu Salifu
33 Palliative care as a global health issue 534
Joseph Clark
34 Concluding points and future agendas: afterthoughts and afterlives 551
Annemarie Samuels and David Clark
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