<?xml version="1.1" encoding="utf-8"?>
<article xsi:noNamespaceSchemaLocation="http://jats.nlm.nih.gov/publishing/1.1/xsd/JATS-journalpublishing1-mathml3.xsd" dtd-version="1.1" xmlns:xlink="http://www.w3.org/1999/xlink" xmlns:mml="http://www.w3.org/1998/Math/MathML" xmlns:xsi="http://www.w3.org/2001/XMLSchema-instance"><front><journal-meta><journal-id journal-id-type="publisher-id">HPR</journal-id><journal-title-group><journal-title>Health Psychology Research</journal-title></journal-title-group><issn>TBA</issn><eissn>2420-8124</eissn><publisher><publisher-name>Health Psychology Research</publisher-name></publisher></journal-meta><article-meta><article-id pub-id-type="doi">10.52965/001c.29052</article-id><article-categories><subj-group subj-group-type="heading"><subject>General</subject></subj-group></article-categories><title>Dehumanization and burden of care among caregivers of  terminally ill patients</title><url>https://healthpr.org/journal/HPR/9/1/10.52965/001c.29052</url><author>TestoniInes,SicariGiulia,RonconiLucia,BiancalaniGianmarco,FrancoChiara,CottonePaolo,CrupiRobert</author><pub-date pub-type="publication-year"><year>2021</year></pub-date><volume>9</volume><issue>1</issue><history><date date-type="pub"><published-time>2021-10-07</published-time></date></history><abstract>This article considers the relationship between dehumanization, ontological representation of death, trust in physicians, and burden of care on the part of caregivers of terminally ill patients. One hundred informal caregivers (relatives and friends) of patients hospitalized in four hospice facilities in northern Italy were involved. Of these, 77% were primary caregivers (those who mostly helped the patient). All of the participants were given a questionnaire comprising the Caregiver Burden Inventory (CBI) to determine caregivers&amp;rsquo; burden in their roles, the&amp;nbsp;questionario post mortem (QPM)&amp;nbsp;(post mortem questionnaire) for the effectiveness of and their trust in the medical nursing team of palliative care services, the Testoni death representation scale (TDRS) to detect their ontological representations of death and the humanity attribution test (HAT) to investigate their attributions of humanity to terminally ill patients. Per the literature, the present results demonstrated higher burden levels for female caregivers and primary caregivers. In informal caregiving, the dehumanization of patients does not have any advantage in reducing the burden of care. Further studies are required to compare formal and informal caregivers concerning the effect of dehumanization.</abstract><keywords>dehumanization, death, burden of care, palliative care</keywords></article-meta></front><body/><back><ref-list><ref id="B1" content-type="article"><label>1</label><element-citation publication-type="journal"><p>1. Coristine M, Crooks D, Grunfeld E, Stonebridge C, Christie A. Caregiving for women with advanced breast cancer. Psycho-Oncology. 2003;12(7):709-719. doi:10.1002/pon.696&amp;nbsp;2. Nielsen MK, Neergaard MA, Jensen AB, Bro F, Guldin MB. Psychological distress, health, and socioeconomic factors in caregivers of terminally ill patients: A nationwide population-based cohort study. Support Care Cancer. Published online February 18, 2016. doi:10.1007/s00520-016-3120-7&amp;nbsp;3. Vitaliano PP, Zhang J, Scanlan JM. Is caregiving hazardous to one&amp;rsquo;s physical health? A meta-analysis. Psychological Bulletin. 2003;129(6):946-972. doi:10.1037/0033-2909.129.6.946&amp;nbsp;4. Bastawrous M. Caregiver burden?A critical discussion. International Journal of Nursing Studies. 2013;50(3):431-441. doi:10.1016/j.ijnurstu.2012.10.005&amp;nbsp;5. Pasacreta JV, Barg F, Nuamah I, McCorkle R. Participant characteristics before and 4 months after attendance at a family caregiver cancer education program. Cancer Nursing. 2000;23(4):295-303. doi:10.1097/00002820-200008000-00007&amp;nbsp;6. Nijboer C, Tempelaar R, Sanderman R, Triemstra M, Spruijt RJ, Van Den Bos GAM. Cancer and caregiving: the impact on the caregiver&amp;rsquo;s health. Psycho-Oncology. 1998;7(1):3-13. doi:10.1002/(sici)1099-1611(199801/02)7:1&amp;nbsp;7. Davis EL, Deane FP, Lyons GCB. Acceptance and valued living as critical appraisal and coping strengths for caregivers dealing with terminal illness and bereavement. Pall Supp Care. 2014;13(2):359-368. doi:10.1017/s1478951514000431&amp;nbsp;8. Andershed B, Ternestedt BM. Involvement of relatives in the care of the dying in different care cultures: involvement in the dark or in the light? Cancer Nursing. 1998;21(2):106-111. doi:10.1097/00002820-199804000-00004&amp;nbsp;9. Swinkels J, Tilburg TV, Verbakel E, Broese van Groenou M. Explaining the gender gap in the caregiving burden of partner caregivers. The Journals of Gerontology: Series B. 2019;74(2):309-317. doi:10.1093/geronb/gbx036&amp;nbsp;10. Xiong C, Biscardi M, Astell A, et al. Sex and gender differences in caregiving burden experienced by family caregivers of persons with dementia: A systematic review. PLoS ONE. 2020;15(4):e0231848. doi:10.1371/journal.pone.0231848&amp;nbsp;11. Capozza D, Falvo R, Boin J, Colledani D. Dehumanization in medical contexts: An expanding research field. Testing, Psychometrics, Methodology in Applied Psychology. 2016;23(4):545-559. doi:10.4473/TPM23.4.8&amp;nbsp;12. Haslam N. Dehumanization: An integrative review. Pers Soc Psychol Rev. 2006;10(3):252-264. doi:10.1207/s15327957pspr1003_4&amp;nbsp;13. Kaufmann P, Kuch H, Neuhaeuser C, Webster E. Humiliation, Degradation, Dehumanization: Human Dignity Violated. Springer Science &amp;amp; Business Media; 2010.&amp;nbsp;14. Leyens JP, Paladino PM, Rodriguez-Torres R, et al. The emotional side of prejudice: The attribution of secondary emotions to ingroups and Outgroups. Pers Soc Psychol Rev. 2000;4(2):186-197. doi:10.1207/s15327957pspr0402_06&amp;nbsp;15. Leyens JP, Demoulin S, Vaes J, Gaunt R, Paladino MP. Infra-humanization: the wall of group differences. Social Issues and Policy Review. 2007;1(1):139-172. doi:10.1111/j.1751-2409.2007.00006.x&amp;nbsp;16. Pereira C, Vala J, Leyens JP. From infra-humanization to discrimination: The mediation of symbolic threat needs egalitarian norms. Journal of Experimental Social Psychology. 2009;45(2):336-344. doi:10.1016/j.jesp.2008.10.010&amp;nbsp;17. Haslam N, Loughnan S. Dehumanization and Infrahumanization. Annu Rev Psychol. 2014;65(1):399-423. doi:10.1146/annurev-psych-010213-115045&amp;nbsp;18. Vaes J, Muratore M. Defensive dehumanization in the medical practice: A cross-sectional study from a healthcare worker&amp;rsquo;s perspective. British Journal of Social Psychology. 2013;52(1):180-190. doi:10.1111/bjso.12008&amp;nbsp;19. Capozza D, Falvo R, Testoni I, Visintin EP. Deumanizzazione del paziente oncologico nei contesti medici [Dehumanization of the cancer patient in medical contexts]. Salute e Societ&amp;agrave;. 2015;(2):74-86. doi:10.3280/ses2015-002006&amp;nbsp;20. Trifiletti E, Di Bernardo GA, Falvo R, Capozza D. Patients are not fully human: A nurse&amp;rsquo;s coping response to stress. J Appl Soc Psychol. 2014;44(12):768-777. doi:10.1111/jasp.12267&amp;nbsp;21. Castro A, Testoni I, Zamperini A, Ronconi L, Galantin LP, Caraceni A. The implicit soul: Factors between the representation of death and dehumanization of patients. Health Psychology Open. 2019;6(1):205510291985466. doi:10.1177/2055102919854666&amp;nbsp;22. Testoni I, Sansonetto G, Ronconi L, Rodelli M, Baracco G, Grassi L. Meaning of life, representation of death, and their association with psychological distress. Pall Supp Care. 2017;16(5):511-519. doi:10.1017/s1478951517000669&amp;nbsp;23. Testoni I, De Cataldo L, Ronconi L, Zamperini A. Pet loss and representations of death, attachment, depression, and euthanasia. Anthrozo&amp;ouml;s. 2017;30(1):135-148. doi:10.1080/08927936.2017.1270599&amp;nbsp;24. Novak M, Guest C. Application of a multidimensional caregiver burden inventory. The Gerontologist. 1989;29(6):798-803. doi:10.1093/geront/29.6.798&amp;nbsp;25. D&amp;rsquo;Onofrio G, Sancarlo D, Addante F, et al. Caregiver burden characterization in patients with Alzheimer&amp;rsquo;s disease or vascular dementia. Int J Geriatr Psychiatry. 2014;30(9):891-899. doi:10.1002/gps.4232&amp;nbsp;26. Chi&amp;ograve; A, Vignola A, Mastro E, et al. Neurobehavioral symptoms in ALS are negatively related to caregivers&amp;rsquo; burden and quality of life. European Journal of Neurology. 2010;17(10):1298-1303. doi:10.1111/j.1468-1331.2010.03016.x&amp;nbsp;27. Schrag A, Hovris A, Morley D, Quinn N, Jahanshahi M. Caregiver-burden in Parkinson&amp;rsquo;s disease is closely associated with psychiatric symptoms, falls, and disability. Parkinsonism &amp;amp; Related Disorders. 2006;12(1):35-41. doi:10.1016/j.parkreldis.2005.06.011&amp;nbsp;28. Partinico M, Cor&amp;agrave; A, Ferrari R, Visentin M, Zanolin ME. Il QPM: uno strumento per la rilevazione della soddisfazione del Caregiver [The QPM: a tool for measuring the satisfaction of the Caregiver]. Rivista Italiana di Cure Palliative. 2003;3:8-23.&amp;nbsp;29. Partinico M, Cor&amp;agrave; A, Ghisi M, Ouimet AJ, Visentin M. A new Italian questionnaire to assess caregivers of cancer patients&amp;rsquo; satisfaction with palliative care: Multicenter validation of the post mortem questionnaire-short form. Journal of Pain and Symptom Management. 2014;47(2):298-306. doi:10.1016/j.jpainsymman.2013.03.018&amp;nbsp;30. Testoni I, Ancona D, Ronconi L. The ontological representation of death. Omega (Westport). 2015;71(1):60-81. doi:10.1177/0030222814568289&amp;nbsp;31. Testoni I, Falletti S, Visintin EP, Ronconi L, Zamperini A. Il volontariato nelle cure palliative: religiosit&amp;agrave;, rappresentazioni esplicite della morte e implicite di Dio tra deumanizzazione e burnout [Volunteering in palliative care: Religiosity, explicit representations of death and implicit representations of God between dehumanization and burnout]. Psicologia della Salute. 2016;(2):27-42. doi:10.3280/pds2016-002002&amp;nbsp;32. Bianco S, Testoni I, Palmieri A, Solomon S, Hart J. The psychological correlates of decreased death anxiety after a near-death experience: The role of self-esteem, mindfulness, and death representations. Journal of Humanistic Psychology. 2019;002216781989210. doi:10.1177/0022167819892107&amp;nbsp;33. Capozza D, Trifiletti E, Vezzali L, Favara I. Can intergroup contact improve humanity attributions? International Journal of Psychology. 2013;48(4):527-541. doi:10.1080/00207594.2012.688132&amp;nbsp;34. Capozza D, Di Bernardo GA, Falvo R, Vianello R, Cal&amp;ograve; L. Individuals with intellectual and developmental disabilities: Do educators assign them a fully human status? J Appl Soc Psychol. 2016;46(9):497-509. doi:10.1111/jasp.12377&amp;nbsp;35. Capozza D, Falvo R, Trifiletti E, Pagani A. Cross-group friendships, extended contact, and humanity attributions to homosexuals. Procedia - Social and Behavioral Sciences. 2014;114:276-282. doi:10.1016/j.sbspro.2013.12.698&amp;nbsp;36. Sharma N, Chakrabarti S, Grover S. Gender differences in caregiving among family - caregivers of people with mental illnesses. WJP. 2016;6(1):7. doi:10.5498/wjp.v6.i1.7&amp;nbsp;37. Xiong C, Biscardi M, Nalder E, Colantonio A. Sex and gender differences in caregiving burden experienced by family caregivers of persons with dementia: A systematic review protocol. BMJ Open. 2018;8(8):e022779. doi:10.1136/bmjopen-2018-022779&amp;nbsp;38. Carter JH, Lyons KS, Stewart BJ, Archbold PG, Scobee R. Does age make a difference in caregiver strain? Comparison of young versus older caregivers in early-stage Parkinson&amp;rsquo;s disease. Mov Disord. 2010;25(6):724-730. doi:10.1002/mds.22888</p><pub-id pub-id-type="doi"/></element-citation></ref></ref-list></back></article>
