"Like not having an arm": a qualitative study of the impact of visitor restrictions on cancer care during the COVID-19 pandemic.
COVID-19
Caregivers
Decision-making
Perioperative period
Qualitative methods
Upper gastrointestinal cancer
Journal
Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer
ISSN: 1433-7339
Titre abrégé: Support Care Cancer
Pays: Germany
ID NLM: 9302957
Informations de publication
Date de publication:
16 Apr 2024
16 Apr 2024
Historique:
received:
29
11
2023
accepted:
29
03
2024
medline:
16
4
2024
pubmed:
16
4
2024
entrez:
15
4
2024
Statut:
epublish
Résumé
Visitor restriction policies to prevent the spread of COVID-19 among patients and clinicians were widespread during the pandemic, resulting in the exclusion of caregivers at key points of cancer care and treatment decision-making. The aim of this study was to explore how visitor restrictions impacted cancer treatment decision-making and care from patient and physician perspectives. Sixty-seven interviews, including 48 cancer patients and 19 cancer and palliative care physicians from four academic cancer centers in the USA between August 2020 and July 2021. Visitor restrictions that prevented caregivers from participating in clinic appointments and perioperative hospital care created challenges in cancer care that spanned three domains: practical, social, and informational. We identified eight themes that characterized challenges within the three domains across all three groups, and that these challenges had negative emotional and psychological consequences for both groups. Physicians perceived that patients' negative experiences due to lack of support through the physical presence of caregivers may have worsened patient outcomes. Our data demonstrate the tripartite structure of the therapeutic relationship in cancer care with caregivers providing critical support in the decision-making and care process to both patients and physicians. Caregiver absences led to practical, psychosocial, and informational burdens on both groups, and likely increased the risk of burnout among physicians. Our findings suggest that the quality of cancer care can be enhanced by engaging caregivers and promoting their physical presence during clinical encounters.
Identifiants
pubmed: 38622350
doi: 10.1007/s00520-024-08473-8
pii: 10.1007/s00520-024-08473-8
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
288Subventions
Organisme : Patient-Centered Outcomes Research Institute
ID : IHS-1609-36518
Pays : United States
Organisme : Patient-Centered Outcomes Research Institute
ID : IHS-1609-36518
Pays : United States
Organisme : Patient-Centered Outcomes Research Institute
ID : IHS-1609-36518
Pays : United States
Organisme : Patient-Centered Outcomes Research Institute
ID : IHS-1609-36518
Pays : United States
Organisme : Patient-Centered Outcomes Research Institute
ID : IHS-1609-36518
Pays : United States
Organisme : Patient-Centered Outcomes Research Institute
ID : IHS-1609-36518
Pays : United States
Organisme : Patient-Centered Outcomes Research Institute
ID : IHS-1609-36518
Pays : United States
Organisme : Patient-Centered Outcomes Research Institute
ID : IHS-1609-36518
Pays : United States
Informations de copyright
© 2024. The Author(s).
Références
Jaswaney R, Davis A, Cadigan RJ, Waltz M, Brassfield ER, Forcier B et al (2022) Hospital policies during COVID-19: an analysis of visitor restrictions. J Public Heal Manag Pract [Internet] 28(1):E299–306. Available from: https://journals.lww.com/ https://doi.org/10.1097/PHH.0000000000001320
Yeh JC, Subbiah IM, Dhawan N, Thompson BW, Hildner Z, Jawed A et al (2021) Visitation policies at NCI-designated comprehensive cancer centers during the COVID-19 pandemic. Support Care Cancer [Internet] 29(9):4895–8. Available from: https://link.springer.com/ https://doi.org/10.1007/s00520-021-06183-z
Buchbinder N, Dumesnil C, Pinquier D, Merle V, Filhon B, Schneider P et al (2011) Pandemic A/H1N1/2009 influenza in a paediatric haematology and oncology unit: successful management of a sudden outbreak. J Hosp Infect [Internet] 79(2):155–60. Available from: https://linkinghub.elsevier.com/retrieve/pii/S0195670111001964 . Accessed 5 Apr 2024
Mukhopadhyay A, Tambyah P, Singh K, Lim T, Lee KH (2004) SARS in a hospital visitor and her intensivist. J Hosp Infect [Internet] 56(3):249–50. Available from: https://linkinghub.elsevier.com/retrieve/pii/S0195670103005000 . Accessed 5 Apr 2024
Iness AN, Abaricia JO, Sawadogo W, Iness CM, Duesberg M, Cyrus J et al (2022) The effect of hospital visitor policies on patients, their visitors, and health care providers during the COVID-19 pandemic: a systematic review. Am J Med [Internet] 135(10):1158–1167.e3. Available from: https://linkinghub.elsevier.com/retrieve/pii/S0002934322003382 . Accessed 5 Apr 2024
Tolbert E, Bowie J, Snyder C, Bantug E, Smith K (2018) A qualitative exploration of the experiences, needs, and roles of caregivers during and after cancer treatment: “that’s what I say. I’m a relative survivor.” J Cancer Surviv [Internet] 12(1):134–44. Available from: http://link.springer.com/ https://doi.org/10.1007/s11764-017-0652-x
Alewine C, Ahmad M, Shea R (2021) Caregiver exclusion in the age of COVID: fighting cancer with half the team. J Clin Oncol [Internet] 39(15):1687–8. Available from: https://ascopubs.org/doi/ https://doi.org/10.1200/JCO.21.00126
Bouras G, Markar SR, Burns EM, Huddy JR, Bottle A, Athanasiou T et al (2017) The psychological impact of symptoms related to esophagogastric cancer resection presenting in primary care: a national linked database study. Eur J Surg Oncol [Internet] 43(2):454–60. Available from: https://linkinghub.elsevier.com/retrieve/pii/S0748798316309489 . Accessed 5 Apr 2024
Kneuertz PJ, Pitt HA, Bilimoria KY, Smiley JP, Cohen ME, Ko CY et al (2012) Risk of morbidity and mortality following hepato-pancreato-biliary surgery. J Gastrointest Surg [Internet] 16(9):1727–35. Available from: https://linkinghub.elsevier.com/retrieve/pii/S1091255X23041859 . Accessed 5 Apr 2024
Raymond M, Simonetta MA (2024) Patient-reported outcomes: the unmet needs of the gastrointestinal cancer community. J Clin Oncol [Internet] 42(3_suppl):731–731. Available from: https://ascopubs.org/doi/ https://doi.org/10.1200/JCO.2024.42.3_suppl.731
Lee JY, Jang Y, Kim S, Hyung WJ (2020) Uncertainty and unmet care needs before and after surgery in patients with gastric cancer: a survey study. Nurs Health Sci [Internet] 22(2):427–35. Available from: https://onlinelibrary.wiley.com/doi/ https://doi.org/10.1111/nhs.12677
Litzelman K (2019) Caregiver well-being and the quality of cancer care. Semin Oncol Nurs [Internet] 35(4):348–53. Available from: https://linkinghub.elsevier.com/retrieve/pii/S0749208119300816 . Accessed 5 Apr 2024
Ullgren H, Tsitsi T, Papastavrou E, Charalambous A (2018) How family caregivers of cancer patients manage symptoms at home: a systematic review. Int J Nurs Stud [Internet] 85:68–79. Available from: https://linkinghub.elsevier.com/retrieve/pii/S0020748918301160 . Accessed 5 Apr 2024
Harrison R, Raman M, Walpola RL, Chauhan A, Sansom-Daly UM (2021) Preparing for partnerships in cancer care: an explorative analysis of the role of family-based caregivers. BMC Health Serv Res [Internet] 21(1):620. Available from: https://bmchealthservres.biomedcentral.com/articles/ https://doi.org/10.1186/s12913-021-06611-0
Hugelius K, Harada N, Marutani M (2021) Consequences of visiting restrictions during the COVID‐19 pandemic: an integrative review. Int J Nurs Stud [Internet] 121:104000. Available from: https://linkinghub.elsevier.com/retrieve/pii/S0020748921001474 . Accessed 5 Apr 2024
Palinkas LA, Horwitz SM, Green CA, Wisdom JP, Duan N, Hoagwood K (2015) Purposeful sampling for qualitative data collection and analysis in mixed method implementation research. Adm Policy Ment Heal Ment Heal Serv Res 42(5):533–544
doi: 10.1007/s10488-013-0528-y
Hennink MM, Kaiser BN, Marconi VC (2017) Code saturation versus meaning saturation: how many interviews are enough? Qual Health Res 27(4):591–608
doi: 10.1177/1049732316665344
pubmed: 27670770
van der Walt JL (2020) Interpretivism-constructionism as a research method in the humanities and social sciences - more to it than meets the eye. Int J Philos Theol 8(1):59–68
Miles MB, Huberman AM, Saldaña J (2019) Qualitative data analysis: a methods sourcebook, 4th edn. Sage, Los Angeles, p 408
Miles MB, Huberman AM, Saldana J (2019) Qualitative data analysis: a methods sourcebook, 4th edn. Sage, Los Angeles
Zeh RD, Santry HP, Monsour C, Sumski AA, Bridges JFP, Tsung A et al (2020) Impact of visitor restriction rules on the postoperative experience of COVID-19 negative patients undergoing surgery. Surgery [Internet] 168(5):770–776. Available from: https://linkinghub.elsevier.com/retrieve/pii/S0039606020305390 . Accessed 5 Apr 2024
Shanafelt T, Ripp J, Trockel M (2020) Understanding and addressing sources of anxiety among health care professionals during the COVID-19 pandemic. JAMA [Internet] 323(21):2133. Available from: https://jamanetwork.com/journals/jama/fullarticle/2764380 . Accessed 5 Apr 2024
Riedel PL, Kreh A, Kulcar V, Lieber A, Juen B (2022) A scoping review of moral stressors, moral distress and moral injury in healthcare workers during COVID-19. Int J Environ Res Public Health [Internet] 19(3):1666. Available from: https://www.mdpi.com/1660-4601/19/3/1666 . Accessed 5 Apr 2024
Morgantini LA, Naha U, Wang H, Francavilla S, Acar Ö, Flores JM et al (2020) Factors contributing to healthcare professional burnout during the COVID-19 pandemic: a rapid turnaround global survey. Murakami M, editor. PLoS One [Internet] 15(9):e0238217. Available from: https://dx.plos.org/ https://doi.org/10.1371/journal.pone.0238217
Sanchez-Reilly S, Morrison L, Carey E, Bernacki R, O’Neill L, Kapo J et al (2013) Caring for oneself to care for others: physicians and their self-care. J Support Oncol [Internet] 11(2):75–81. Available from: http://www.mdedge.com/jcso/article/58502/caring-oneself-care-others-physicians-and-their-self-care . Accessed 5 Apr 2024
Thorne SE, Kuo M, Armstrong EA, McPherson G, Harris SR, Hislop TG (2005) ‘Being known’: patients’ perspectives of the dynamics of human connection in cancer care. Psychooncology [Internet] 14(10):887–98. Available from: https://onlinelibrary.wiley.com/doi/ https://doi.org/10.1002/pon.945
Routasalo P, Isola A (1996) The right to touch and be touched. Nurs Ethics [Internet] 3(2):165–76. Available from: http://journals.sagepub.com/doi/ https://doi.org/10.1177/096973309600300209
Cocksedge S, George B, Renwick S, Chew-Graham CA (2013) Touch in primary care consultations: qualitative investigation of doctors’ and patients’ perceptions. Br J Gen Pract [Internet] 63(609):e283–90. Available from: https://bjgp.org/lookup/doi/ https://doi.org/10.3399/bjgp13X665251
Kelly M, Svrcek C, King N, Scherpbier A, Dornan T (2020) Embodying empathy: a phenomenological study of physician touch. Med Educ [Internet] 54(5):400–7. Available from: https://onlinelibrary.wiley.com/doi/ https://doi.org/10.1111/medu.14040
Wolff JL, Roter DL (2008) Hidden in plain sight: medical visit companions as a resource for vulnerable older adults. Arch Intern Med [Internet] 168(13):1409. Available from: http://archinte.jamanetwork.com/article.aspx?doi= https://doi.org/10.1001/archinte.168.13.1409
Longacre ML, Chwistek M, Keleher C, Siemon M, Egleston BL, Collins M et al (2023) Patient-caregiver portal system in palliative oncology: assessment of usability and perceived benefit. JMIR Hum Factors [Internet] 10:e47624. Available from: https://humanfactors.jmir.org/2023/1/e47624 . Accessed 5 Apr 2024
Van Houtven CH, Hastings SN, Colón-Emeric C (2019) A path to high-quality team-based care for people with serious illness. Health Aff [Internet] 38(6):934–40. Available from: http://www.healthaffairs.org/doi/ https://doi.org/10.1377/hlthaff.2018.05486
Raj M, Stephenson AL, DePuccio MJ, Sullivan EE, Tarver W, Fleuren B et al (2023) Conceptual framework for integrating family caregivers into the health care team: a scoping review. Med Care Res Rev [Internet] 80(2):131–44. Available from: http://journals.sagepub.com/doi/ https://doi.org/10.1177/10775587221118435