{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,15]],"date-time":"2026-07-15T17:03:38Z","timestamp":1784135018779,"version":"3.55.0"},"reference-count":36,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2026,7,10]],"date-time":"2026-07-10T00:00:00Z","timestamp":1783641600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Sociol."],"abstract":"<jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>The concept of \u2018total pain\u2019 was conceived and utilised by Cicely Saunders, pioneer of the modern hospice movement, in the mid-1960s to highlight to doctors the multidimensional \u2013 physical, social, emotional, and spiritual \u2013 nature of suffering experienced specifically at the end of life. Photovoice is a participatory visual research method which places cameras in the hands of research participants to document aspects of their own lives \u2013 including experiences of suffering - in order to promote critical dialogue with researchers and to reach and influence decision-makers. In this article, we explore connections and overlap between the photovoice method and its outputs, and Cicely Saunders\u2019 concept of \u2018total pain\u2019 and her application of the concept.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We interpretively analysed photovoice data - participant-produced photographs, transcripts of interviews, and other forms of written communication - from two specific participants who took part in a four-year UK-based research study called Dying in the Margins (2019-23). The aim of the study was to uncover barriers to, and experiences of, home dying for people experiencing poverty and deprivation.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>The visual and textual data highlight the multiple causes of the women\u2019s suffering, stemming from their housing, financial, material, and relational circumstances.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Discussion<\/jats:title>\n                    <jats:p>We identify significant alignment between the intentions and outputs of photovoice and Cicely Saunders\u2019 concept of \u2018total pain\u2019, which has been foundational to the historical development of palliative care. We argue that both the photovoice method and Saunders\u2019 concept aim to draw attention to causes of suffering beyond physical symptoms, so often the exclusive focus of the clinical encounter. Photovoice images zoom in on the fine-grained intimate details of people\u2019s embodied experience and their environments in much the same way that Saunders presented individual details or fragments of her patients\u2019 stories in order to give substance to, and make real, her concept of \u2018total pain\u2019. Both photovoice imagery and Saunders\u2019 elaboration of \u2018total pain\u2019 promote emotional identification in onlookers and listeners and thereby become a rallying call for action to mitigate the social determinants of dying. We advocate for further use of photovoice in end-of-life care research, specifically in social and material contexts which are seldom given consideration by policymakers or referred to in housing, public health or end-of-life care policies.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.3389\/fsoc.2026.1831930","type":"journal-article","created":{"date-parts":[[2026,7,10]],"date-time":"2026-07-10T04:24:13Z","timestamp":1783657453000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":0,"title":["Visually representing total pain at the end of life through photovoice"],"prefix":"10.3389","volume":"11","author":[{"given":"Naomi","family":"Richards","sequence":"first","affiliation":[{"name":"School of Social and Environmental Sustainability, College of Social Science, University of Glasgow","place":["Glasgow, United Kingdom"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sam","family":"Quinn","sequence":"additional","affiliation":[{"name":"School of Social and Environmental Sustainability, College of Social Science, University of Glasgow","place":["Glasgow, United Kingdom"]}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1965","published-online":{"date-parts":[[2026,7,10]]},"reference":[{"key":"ref1","volume-title":"Image, Music, Text","author":"Barthes","year":"1977"},{"key":"ref2","doi-asserted-by":"publisher","first-page":"2","DOI":"10.1111\/j.1548-744X.2011.01045.x","article-title":"Lumpen abuse: the human cost of righteous neoliberalism","volume":"23","author":"Bourgois","year":"2011","journal-title":"City Soc."},{"key":"ref3","doi-asserted-by":"publisher","first-page":"836","DOI":"10.1177\/1049732306287525","article-title":"Photovoice as a social process of critical consciousness","volume":"16","author":"Carlson","year":"2006","journal-title":"Qual. Health Res."},{"key":"ref4","doi-asserted-by":"publisher","first-page":"424","DOI":"10.1177\/1090198109342084","article-title":"Photovoice: a review of the literature in health and public health","volume":"37","author":"Catalani","year":"2008","journal-title":"Health Educ. Behav."},{"key":"ref5","doi-asserted-by":"crossref","DOI":"10.1093\/oso\/9780190637934.001.0001","volume-title":"\u2018Watch with Me\u2019 and the Continuing Significance of Cicely Saunders","author":"Clark","year":"2018"},{"key":"ref6","doi-asserted-by":"publisher","first-page":"7549","DOI":"10.1080\/20008066.2025.2547549","article-title":"On poverty and trauma: associations between neighbourhood socioeconomic deprivation, post-traumatic stress disorder severity and treatment response","volume":"16","author":"Delgadillo","year":"2025","journal-title":"Eur. J. Psychotraumatol."},{"key":"ref7","doi-asserted-by":"publisher","first-page":"31","DOI":"10.1177\/0261018311425198","article-title":"Walking the neighbourhood, seeing the small details of community life: reflections from a photography walking tour","volume":"32","author":"Fink","year":"2012","journal-title":"Crit. Soc. Policy"},{"key":"ref8","volume-title":"The Cost of Dying Photography Exhibition","year":""},{"key":"ref9","volume-title":"Dying in the Margins: Joost ten Wolde on His Wife Stacey O\u2019brien\u2019s End of Life Experiences","year":""},{"key":"ref10","doi-asserted-by":"publisher","first-page":"1161021","DOI":"10.3389\/fsoc.2023.1161021","article-title":"Total pain and social suffering: marginalised Greenlanders' end-of-life in Denmark","volume":"8","author":"Graven","year":"2023","journal-title":"Front. Sociol."},{"key":"ref11","doi-asserted-by":"publisher","first-page":"108","DOI":"10.1111\/j.1467-954X.2012.02119.","article-title":"Learning to be affected: social suffering and total pain at life\u2019s borders","volume":"60","author":"Gunaratnam","year":"2012","journal-title":"Sociol. Rev."},{"key":"ref12","doi-asserted-by":"publisher","first-page":"1511767","DOI":"10.1080\/17482631.2018.1511767","article-title":"Family members\u2019 experiences of the end-of-life care environments in acute care settings \u2013 a photo-elicitation study","volume":"13","author":"Hajradinovic","year":"2018","journal-title":"Int. J. Qual. Stud. Health Well Being"},{"key":"ref13","first-page":"22","volume-title":"Oxford Textbook of Public Health Palliative Care","author":"Kellehear","year":"2022"},{"key":"ref14","doi-asserted-by":"publisher","first-page":"2218","DOI":"10.1177\/0886260520935096","article-title":"The clustering of adverse childhood experiences in the Avon longitudinal study of parents and children: are gender and poverty important?","volume":"37","author":"Lacey","year":"2022","journal-title":"J. Interpers. Violence"},{"key":"ref15","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1177\/1609406918757631","article-title":"Thinking critically about photovoice: achieving empowerment and social change","volume":"17","author":"Liebenberg","year":"2018","journal-title":"Int J Qual Methods"},{"key":"ref16","doi-asserted-by":"publisher","first-page":"211","DOI":"10.1177\/1476750320905900","article-title":"Using photovoice to reflect on poverty and address social inequalities among primary care teams","volume":"21","author":"Loignon","year":"2023","journal-title":"Action Res."},{"key":"ref17","doi-asserted-by":"crossref","first-page":"282","DOI":"10.4135\/9781529721485.n17","volume-title":"The SAGE Handbook of Visual Research Methods","author":"Milne","year":"2020"},{"key":"ref18","doi-asserted-by":"publisher","first-page":"151","DOI":"10.1016\/j.healthplace.2012.11.002","article-title":"\u2018I am closer to this place\u2019\u2013space, place and notions of home in lived experiences of hospice day care","volume":"19","author":"Moore","year":"2013","journal-title":"Health Place"},{"key":"ref19","volume-title":"Life Expectancy in Scotland, 2022\u20132024","year":"2025"},{"key":"ref20","volume-title":"Physical Environment: Green and Blue Space","year":"2026"},{"key":"ref21","doi-asserted-by":"publisher","first-page":"207","DOI":"10.1136\/medhum-2024-012950","article-title":"The cost of dying exhibition: public, professional and political reactions to a visual exhibition depicting experiences of poverty at the end of life","volume":"51","author":"Quinn","year":"","journal-title":"Med. Humanit."},{"key":"ref22","first-page":"419","volume-title":"Research Handbook on End of Life Care and Society","author":"Quinn","year":""},{"key":"ref23","doi-asserted-by":"publisher","first-page":"627","DOI":"10.1177\/02692163221146590","article-title":"The viability and appropriateness of using visual methods in end of life research to foreground the experiences of people affected by financial hardship and deprivation","volume":"37","author":"Richards","year":"2023","journal-title":"Palliat. Med."},{"key":"ref001","doi-asserted-by":"publisher","first-page":"100414","DOI":"10.1016\/j.ssmqr.2024.100414","article-title":"Dying in the margins: Experiences of dying at home for people living with financial hardship and deprivation","volume":"5","author":"Richards","year":"2024","journal-title":"SSM Qual. Res. Health."},{"key":"ref24","first-page":"141","volume-title":"Narrative Methods for the human Sciences","author":"Riessman","year":"2008"},{"key":"ref25","doi-asserted-by":"publisher","first-page":"3873","DOI":"10.1177\/26323524211033873","article-title":"The impact of poverty and deprivation at the end of life: a critical review","volume":"15","author":"Rowley","year":"2021","journal-title":"Palliat. Care Soc. Pract."},{"key":"ref26","doi-asserted-by":"publisher","first-page":"837","DOI":"10.1016\/S0140-6736(21)02314-X","article-title":"Report of the lancet commission on the value of death: bringing death back into life","volume":"399","author":"Sallnow","year":"2022","journal-title":"Lancet Commissions."},{"key":"ref27","first-page":"68","article-title":"The symptomatic treatment of incurable malignant disease","volume":"4","author":"Saunders","year":"1964","journal-title":"Prescr J."},{"key":"ref002","volume-title":"Scottish Index of Multiple Deprivation 2020","year":"2020"},{"key":"ref28","doi-asserted-by":"publisher","first-page":"491","DOI":"10.1111\/j.1467-954X.2009.01851.x","article-title":"Revealing habitus, illuminating practice: Bourdieu, photography and visual methods","volume":"57","author":"Sweetman","year":"2009","journal-title":"Sociol. Rev."},{"key":"ref29","doi-asserted-by":"publisher","first-page":"539","DOI":"10.1016\/j.jana.2013.05.001","article-title":"Taking pictures to take control: photovoice as a tool to facilitate empowerment among poor and racial\/ethnic minority women with HIV","volume":"24","author":"Teti","year":"2013","journal-title":"J. Assoc. Nurses AIDS Care"},{"key":"ref30","doi-asserted-by":"publisher","first-page":"120","DOI":"10.1016\/j.socscimed.2016.09.012","article-title":"Beyond the visual and verbal: using participant-produced photographs in research on the surroundings for care at the end-of-life","volume":"168","author":"Tishelman","year":"2016","journal-title":"Soc. Sci. Med."},{"key":"ref31","doi-asserted-by":"publisher","first-page":"185","DOI":"10.1089\/jwh.1999.8.185","article-title":"Photovoice: a participatory action research strategy applied to women's health","volume":"8","author":"Wang","year":"1999","journal-title":"J. Women's Health"},{"key":"ref32","doi-asserted-by":"publisher","first-page":"369","DOI":"10.1177\/109019819702400309","article-title":"Photovoice: concept, methodology, and use for participatory needs assessment","volume":"24","author":"Wang","year":"1997","journal-title":"Health Educ. Behav."},{"key":"ref33","doi-asserted-by":"publisher","first-page":"411","DOI":"10.1136\/medhum-2020-012107","article-title":"Cicely Saunders, \u2018Total pain\u2019 and emotional evidence at the end of life","volume":"48","author":"Wood","year":"2022","journal-title":"Med. Humanit."},{"key":"ref34","doi-asserted-by":"crossref","DOI":"10.1515\/9781399531085","volume-title":"Cicely Saunders and Total Pain: Holism, Narrative and Silence at the End of Life","author":"Wood","year":"2025"}],"container-title":["Frontiers in Sociology"],"original-title":[],"link":[{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fsoc.2026.1831930\/full","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,7,15]],"date-time":"2026-07-15T16:08:57Z","timestamp":1784131737000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fsoc.2026.1831930\/full"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,7,10]]},"references-count":36,"alternative-id":["10.3389\/fsoc.2026.1831930"],"URL":"https:\/\/doi.org\/10.3389\/fsoc.2026.1831930","relation":{},"ISSN":["2297-7775"],"issn-type":[{"value":"2297-7775","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,7,10]]},"article-number":"1831930"}}