“I have cancer during COVID; that’s a special category”: a qualitative study of head and neck cancer patient and provider experiences during the COVID-19 pandemic

Abstract

Purpose The COVID-19 pandemic has drastically changed cancer care delivery strategies. Patients with locally advanced head and neck cancer (LA-HNC) may be particularly affected by the COVID-19 pandemic, as they often undergo treatments that require daily clinic visits (e.g., radiation therapy). The goal of this study was to characterize the lived experience of LA-HNC patients and their healthcare providers during the COVID-19 pandemic. Methods LA-HNC patients who completed a full course of chemotherapy and radiation therapy during the COVID19 pandemic ( N = 20) and LA-HNC healthcare providers ( N = 13) participated in semi-structured interviews. Interviews were audio-recorded, transcribed verbatim, and analyzed for qualitative themes. Results The COVID-19 pandemic had a significant impact on patients’ overall quality of life and health care. Results were organized in four main themes: (1) increased psychological distress; (2) exacerbated social isolation; (3) added stress in clinic for patients and providers; and (4) delays in health care. Conclusions Findings highlight myriad ways LA-HNC patients and providers have been affected by the COVID-19 pandemic. Results can inform the development of supportive interventions to assist LA-HNC in managing COVID-19-related stress and unmet needs related to social isolation and in-clinic support. Supplementary Information The online version contains supplementary material available at 10.1007/s00520-021-06773-x.

Social isolation in adults with cancer: An evolutionary concept analysis

“…Cancer survivors may experience physical and functional impairments caused by their illness and treatment, thus resulting in limited social integration ( Noyes et al, 1990 ; Sandén and Hydén, 2002 ; Johansson et al, 2005 ; Lund-Nielsen et al, 2005 ; Bennett et al, 2006 ; Simonelli and Otto, 2017 ; De Blasi et al, 2018 ; Abdollahimohammad et al, 2019 ; Borgi et al, 2020 ; Stolley et al, 2020 ; Yuan et al, 2020 ; He et al, 2021 ; Kudjawu and Agyeman-Yeboah, 2021 ; Tsui and Huang, 2021 ). For instance, the complications associated with head and neck cancer, such as disfigurement, dysphagia, and speech impairment, can impair social functioning among survivors, exacerbating social isolation ( Rogers et al, 2016 ; Moore et al, 2018 ; Kirtane et al, 2022 ). For gastrointestinal cancer survivors, gastrointestinal-specific morbidities such as ostomy leakage and incontinence deter them from an active social life ( Martopullo et al, 2020 ; He et al, 2021 ).…”

“…First, it may arise from not having someone with whom to discuss cancer-related matters ( D’Agostino and Edelstein, 2013 ; Ettridge et al, 2018 ; Zhu et al, 2019 ). According to cancer survivors, their loneliness results from external avoidance and misunderstandings from others and cancer’s long-lasting impact ( Fu et al, 2013 ; Hinzey et al, 2016 ; Raque-Bogdan et al, 2019 ; Kirtane et al, 2022 ). Second, the need for special attention for individuals with several intersecting identities might be unnoticed.…”

“…Kirtane et al (2022) Physical and emotional social isolation is experienced during special circumstances (COVID-19).Takemura et al (2021)A social relationship shortfall can be quantified by social network size, diversity, or frequency of contacts. Social isolation refers to the phenomenon that an individual is automatically isolated from other people and society when they are treated negatively by the world during social interaction, resulting in negative emotions such as loneliness and helplessness, and showing negative behaviors such as avoidance and rejection.…”

Pesquisa e Extensão: Abordagem Interdisciplinar

“…Os pacientes apresentaram um alto nível de estresse durante o período, principalmente pelo fato de precisarem se isolar em suas casas, mudarem a rotina de consultas, exercícios e até de saídas rápidas como ir até o mercado. Além disso havia também o medo da superlotação dos estabelecimentos de assistência à saúde (KRUG, et al 2022;KIRTANE, et al 2022;LAMBLIN, et al 2021;MCANDEW, et al 2021;CROSETTI, et al 2021;KASSIANOS, et al 2021;PEOPLES, et al 2022).…”

“…Houve declínio no número de pacientes que compareceram às consultas de rotina e além de ter uma grande taxa de recusa dos próprios pacientes em fazer cirurgias, outro ponto preocupante foi o atraso no tratamento e em cirurgias, pois por serem pacientes com saúde frágil, as consequências da COVID-19 são potencialmente mais graves. Em um estudo realizado na Romênia foi constatado um aumento considerável na taxa de óbito nos pacientes com câncer que frequentavam a clínica e uma maior chance de precisar de intubação ou ventilação mecânica (AYDIN, et al 2022;KIRTANE, et al 2022;ILGUN, et al2021;LAMBLIN, et al2021;TRIFANESCU, et al2021;JONES, et al 2022;ASGHAR et al2022).…”