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Cited by 37Palliative and Oncologic CarePalliative Care and End-of-Life IssuesReligion, Spirituality, and Psychology

“You begin to give more value in life, in minutes, in seconds”: Spiritual and existential experiences of family caregivers of patients with advanced cancer receiving end-of-life care in Brazil

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Benites, Andrea Carolina, Rodin, Gary, de Oliveira-Cardoso, Érika Arantes, dos Santos, Manoel Antônio·2022·Supportive Care in Cancer
DOI 10.1007/s00520-021-06712-wPMC PMC8611251
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Abstract

Purpose Facing the end of life may trigger significant distress in family caregivers of patients with advanced cancer. However, few studies have addressed the spiritual and existential concerns of these family caregivers in their end-of-life care journey. This study aimed to understand the spiritual and existential experience of family caregivers of patients with advanced cancer facing the end of life in Brazil. Methods A purposive sample of 16 family caregivers of hospitalized terminally ill cancer patients in Brazil participated in in-depth interviews. Data collection and analysis were based on interpretative phenomenological analysis. Results Three superordinate themes in their spiritual and existential experience were identified: (i) connectedness through caregiving, personal relationships, and spiritual beliefs; (ii) shifting hope: from death as a possibility to preparation for impending death; (iii) reframing suffering and meaning. For these caregivers, the relationship with the patient and with others, their spiritual beliefs, and hope were significant sources of meaning. Hope was sustained by death avoidance, oscillating with death acceptance and hope that it would occur with comfort. Family caregivers also experienced existential and spiritual suffering in the form of guilt, suppressed emotions, and loneliness. Conclusion Health care providers should address and support caregivers' spiritual needs and their relationships with the patient and others during end-of-life care and facilitate reflection regarding existential concerns, meaning, and preparation for impending death.

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  • 15 studies described caregivers as mostly spouses or daughters/sons of patients with cancer, usually sharing the same home.

    “As for family bonds, 15 studies described these caregivers as being mostly spouses or daughters/sons of the patients with cancer, usually sharing the same home [22,23,25,26,27,28,30,32,33,34,35,36,37,38,39].”

    From Quality of Life in Caregivers of Cancer Patients: A Literature Review (2023) · cites this paper as [22]

    Table 1 in Results > Participants lists 7 partners/spouses and 7 sons among 16 caregivers, supporting the description of caregivers as mostly spouses or children. Neither that table nor the Participants passage says whether caregivers usually shared a home with patients; providing care in the community does not establish cohabitation. The count of 15 studies is the citing paper’s synthesis, not a finding attributed to this individual study. (LLM, conf=0.86)

    Experimental — accuracy not yet measured

  • Four studies highlighted the need of training health professionals on existential and spiritual distress management, as well as the need to identify groups at risk and reassigning tasks among all family members.

    “Four studies [22,24,44,48] highlighted the need of training properly health professionals on existential and spiritual distress management, as well as the need to identify groups at risk and reassigning tasks among all family members.”

    From Quality of Life in Caregivers of Cancer Patients: A Literature Review (2023) · cites this paper as [22]

    The Discussion (page unavailable) recommends training health care providers to manage patients’ and family members’ existential and spiritual distress. The available passages do not recommend identifying groups at risk or reassigning tasks among family members; searches for those recommendations found no supporting passage. The source therefore supports only the training portion of the sentence. (LLM, conf=0.85)

    Experimental — accuracy not yet measured

  • The caregiver role for adults with cancer is usually undertaken by spouses or daughters/sons of the patient.

    “the role of caregiver is undertaken by spouses or daughters/sons of people with cancer and usually share the same home [22,23,25,26,27,28,30,32,33,34,35,36,37,38,39].”

    From Quality of Life in Caregivers of Cancer Patients: A Literature Review (2023) · cites this paper as [22]

    The Results (Participants, Table 1; page unavailable) show that 14 of the 16 caregivers were partners/spouses or sons, supporting the pattern in this sample. The study concerns caregivers of patients with advanced cancer receiving end-of-life care in Brazil, so it does not establish that this is usually the case for adults with cancer generally. (LLM, conf=0.82)

    Experimental — accuracy not yet measured

  • Care provision by caregivers of adults with cancer causes emotional and psychological problems, including distress, stress, high anxiety, and depression.

    “Most of the studies [22,23,25,26,27,28,29,30,33,34,35,36,38,40,41,42,43,44,45,46,47,48,49,50,51,52] have referenced the emotional and psychological problems suffered by caregivers, describing feelings of distress, stress, high levels of anxiety, and even depression.”

    From Quality of Life in Caregivers of Cancer Patients: A Literature Review (2023) · cites this paper as [22]

    The Background reports substantial distress during caregiving and says family caregivers may experience anxiety and depressive symptoms. The Results > Findings also describe emotional distress, particularly when patients’ symptoms were poorly controlled. Our copy does not establish high levels of anxiety or depression as a diagnosis, and does not specifically describe stress. (LLM, conf=0.84)

    Experimental — accuracy not yet measured

  • Ten studies did not describe average age.

    “However, it must be highlighted that 10 studies did not describe average age [22,23,24,25,26,27,28,29,30,31].”

    From Quality of Life in Caregivers of Cancer Patients: A Literature Review (2023) · cites this paper as [22]

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Research works printed but not linked: 34

  1. [1]Radbruch L De Lima L Knaul F Redefining palliative care: a new consensus-based definition J Pain Symptom Manage 2020 60 754 764 10.1016/j.jpainsymman.2020.04.027 32387576 PMC8096724 · DOI
  2. [2]Stajduhar KI Burdens of family caregiving at the end of life Clin Invest Med 2013 36 121 126 10.25011/cim.v36i3.19722 23739665 · DOI
  3. [3]Delalibera M Coelho A Frade P Barbosa A Leal I Caregiving and bereavement in palliative care: a cross-cultural study between Brazil and Portugal Transcult Psychiatry 2020 57 445 454 10.1177/1363461520909596 32216543 · DOI
  4. [4]Best M Aldridge L Butow P Olver I Webster F Conceptual analysis of suffering in cancer: a systematic review Psychooncology 2015 24 977 986 10.1002/pon.3795 25754062 · DOI
  5. [5]Braun M Hales S Gilad L Mikulicer M Rydall A Rodin G Caregiving styles and attachment orientations in couples facing advanced cancer: caregiving style and attachment orientations in couples facing cancer Psychooncology 2012 21 935 943 10.1002/pon.1988 21544898 · DOI
  6. [6]Coelho A de Brito M Teixeira P Frade P Barros L Barbosa A Family caregivers’ anticipatory grief: a conceptual framework for understanding its multiple challenges Qual Health Res 2020 30 693 703 10.1177/1049732319873330 31526106 · DOI
  7. [7]Nissim R Hales S Zimmermann C Deckert A Edwards B Rodin G Supporting family caregivers of advanced cancer patients: a focus group study Fam Relat 2017 66 867 879 10.1111/fare.12291 · DOI
  8. [8]Valentino TCO Paiva CE Hui D de Oliveira MA Paiva BSR Impact of palliative care on quality of end-of-life care among Brazilian patients with advanced cancers J Pain Symptom Manage 2019 59 39 48 10.1016/j.jpainsymman.2019.08.021 31449844 · DOI
  9. [9]Applebaum AJ Kryza-Lacombe M Buthorn J DeRosa A Corner G Diamond EL Existential distress among caregivers of patients with brain tumors: a review of the literature Neurooncol Pract 2016 3 232 244 10.1093/nop/npv060 31385976 PMC6657396 · DOI
  10. [10]Melin-Johansson C Henoch I Strang S Browall M Living in the presence of death: an integrative literature review of relatives’ important existential concerns when caring for a severely ill family member Open Nurs J 2012 6 1 12 10.2174/1874434601206010001 22371820 PMC3282885 · DOI
  11. [12]Lalani N Duggleby W Olson J Spirituality among family caregivers in palliative care: an integrative literature review Int J Palliat Nurs 2018 24 80 91 10.12968/ijpn.2018.24.2.80 29469645 · DOI
  12. [13]Lalani N Duggleby W Olson J Rise above: experiences of spirituality among family caregivers caring for their dying family member in a hospice setting in Pakistan J Hosp Palliat Nurs 2019 21 422 429 10.1097/NJH.0000000000000584 31318734 · DOI
  13. [14]Puchalski CM Vitillo R Hull SK Reller N Improving the spiritual dimension of whole person care: reaching national and international consensus J Palliat Med 2014 17 642 656 10.1089/jpm.2014.9427 24842136 PMC4038982 · DOI · Paper page
  14. [15]Weathers E McCarthy G Coffey A Concept analysis of spirituality: an evolutionary approach Nurs Forum 2016 51 79 96 10.1111/nuf.12128 25644366 · DOI
  15. [16]Vachon M Fillion L Achille M A conceptual analysis of spirituality at the end of life J Palliat Med 2009 12 53 59 10.1089/jpm.2008.0189 19284263 · DOI · Paper page
  16. [17]Best M Leget C Goodhead A Paal P An EAPC white paper on multi-disciplinary education for spiritual care in palliative care BMC Palliat Care 2020 19 9 10.1186/s12904-019-0508-4 31941486 PMC6964109 · DOI
  17. [18]Colosimo K Nissim R Pos AE Hales S Zimmermann C Rodin G “Double awareness” in psychotherapy for patients living with advanced cancer J Psychother Integr 2018 28 125 140 10.1037/int000007819 · DOI
  18. [19]Rodin G Zimmermann C Psychoanalytic reflections on mortality: a reconsideration J Am Acad Psychoanal Dyn Psychiatry 2008 36 181 196 10.1521/jaap.2008.36.1.181.20 18399753 · DOI
  19. [20]Benites AC Rodin G Leite ACAB Nascimento LC Dos Santos MA The experience of spirituality in family caregivers of adult and elderly cancer patients receiving palliative care: a meta-synthesis Euro J Cancer Care 2021 30 e13424 10.1111/ecc.13424 33547680 · DOI
  20. [21]Peat G Rodriguez A Smith J Interpretive phenomenological analysis applied to healthcare research Evid Based Nurs 2019 22 7 10.1136/ebnurs-2018-103017 30504450 · DOI
  21. [23]Larkin M Watts S Clifton E Giving voice and making sense in interpretative phenomenological analysis Qual Res Psychol 2006 3 102 120 10.1191/1478088706qp062oa · DOI
  22. [24]Tombolato MA Santos MA Análise Fenomenológica Interpretativa (AFI): fundamentos básicos e aplicações em pesquisa Rev Abordagem Gestal 2020 26 293 304 10.18065/2020v26n3.5 · DOI
  23. [25]Tong A Sainsbury P Craig J Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups Int J Qual Health Care 2007 19 349 357 10.1093/intqhc/mzm042 17872937 · DOI · Paper page
  24. [26]Smith JA Qualitative psychology: a practical guide to research methods 2015 London SAGE
  25. [27]Yardley L Dilemmas in qualitative health research Psychol Health 2000 15 215 228 10.1080/08870440008400302 · DOI · Paper page
  26. [28]Arian M Younesi SJ Khanjani MS Explaining the experiences and consequences of care among family caregivers of patients with cancer in the terminal phase: a qualitative research Int J Cancer Manag 2017 10 e10753 10.5812/ijcm.10753 · DOI
  27. [29]Paiva BSR Carvalho AL Lucchetti G Barroso EM Paiva CE “Oh, yeah, I’m getting closer to god”: spirituality and religiousness of family caregivers of cancer patients undergoing palliative care Support Care Cancer 2015 23 2383 2389 10.1007/s00520-015-2604-1 25591628 · DOI
  28. [30]Totman J Pistrang N Smith S Hennessey S Martin J ‘You only have one chance to get it right’: a qualitative study of relatives’ experiences of caring at home for a family member with terminal cancer Palliat Med 2015 29 496 507 10.1177/0269216314566840 25634637 · DOI
  29. [31]Lima CPdL Machado MdA Cuidadores Principais Ante a Experiência da Morte: Seus Sentidos e Significados Psicol Ciênc Prof 2018 38 88 101 10.1590/1982-3703002642015 · DOI
  30. [32]Vachon M “It made me more human”: existential journeys of family caregivers from prognosis notification until after the death of a loved one J Palliat Med 2020 23 1613 1618 10.1089/jpm.2019.0689 32343649 · DOI
  31. [33]Maiko S Johns SA Helft PR Slaven JE Cottingham AH Torke AM Spiritual experiences of adults with advanced cancer in outpatient clinical settings J Pain Symptom Manage 2019 57 576 586 10.1016/j.jpainsymman.2018.11.026 30528539 PMC6382574 · DOI
  32. [34]Sutherland N The meaning of being in transition to end-of-life care for female partners of spouses with cancer Palliat Support Care 2009 7 423 433 10.1017/S1478951509990435 19939305 · DOI
  33. [35]Juarez G Branin JJ Rosales M The cancer caregiving experience of caregivers of Mexican ancestry Hisp Health Care Int 2014 12 120 129 10.1891/1540-4153.12.3.120 25239208 · DOI
  34. [36]Hales S Chiu A Husain A Braun M Rydall A Gagliese L Zimmermann C Rodin G The quality of dying and death in cancer and its relationship to palliative care and place of death J Pain Symptom Manage 2014 48 839 851 10.1016/j.jpainsymman.2013.12.240 24703943 · DOI

Cited by

Sorted by citations

Authors
Benites, A. C., Rodin, G., de Oliveira-Cardoso, É. A., & dos Santos, M. A.
Affiliations
University Health Network (CA)
ORCID
Venue
Supportive Care in Cancer
Publisher
Springer Science and Business Media LLC
Published
2021-11-24
Volume
30
Issue
3
Pages
2631-2638
ISSN
  • 0941-4355 (ISSN-L)
  • 1433-7339
DOI
10.1007/s00520-021-06712-w
PMC
PMC8611251
OpenAlex
W3217293683
Cited by
37
References
0
Citations by year
2026: 6 · 2025: 10 · 2024: 9 · 2023: 6 · 2022: 6
FWCI
4.55
Type
journal article
Language
en
Open access
Licence
Locations
  • Supportive Care in Cancer (publishedVersion)
  • PubMed Central (publishedVersion)
  • PubMed (publishedVersion)
Funders
  • fundação de amparo à pesquisa do estado de são paulo (2017/26542-5, 2019/02134-0)
  • conselho nacional de desenvolvimento científico e tecnológico
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
  • Social Sciences › Health › Religion, Spirituality, and Psychology
Keywords
family caregivers, advanced cancer, end-of-life care, spiritual experience, existential experience, hope, meaning-making, suffering, guilt, loneliness, caregiver-patient relationship, spiritual needs, death acceptance, Brazil
MeSH terms
Brazil, Humans, Neoplasms, Palliative Care, Quality of Life, Terminal Care, Caregivers, Spirituality

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