A Mixed-Method Examination of Emerging and Young Adult Cancer Caregivers’ Experiences during the COVID-19 Pandemic

Abstract

Advanced cancer caregivers in emerging and young adulthood (EYACs; ages 18–35) are an understudied yet vulnerable caregiving population. The COVID-19 pandemic created new challenges for advanced cancer caregivers but also created unique contexts from which caregivers sometimes benefited. To understand how the pandemic may have positively and negatively impacted their caregiving and bereavement experiences, we examined EYACs’ experiences of caring for and losing a parent with advanced cancer during the pandemic in comparison to those of EYACs with a parent who died outside the context of the pandemic. Eligible EYACs completed an online survey and semi-structured interview. Quantitative analyses compared responses for pre-pandemic EYACS (n = 14) and pandemic EYACs (n = 26). A thematic analysis of the interview transcripts of pandemic EYACS (n = 14) was conducted. Pandemic EYACs experienced non-significant but higher communal coping, benefit finding, negative emotional experiences, and caregiver strain than pre-pandemic EYACs. Thematic analysis revealed that the pandemic negatively affected EYACs’ caregiving efficacy, personal well-being, interpersonal dynamics, and bereavement; shifts to remote work and schooling were reported as benefits. The findings can inform the design of resources to support EYACs whose parents died during the pandemic and who are navigating the healthcare system today.

“I have never felt so alone and vulnerable” – A qualitative study of bereaved people’s experiences of end-of-life cancer care during the Covid-19 pandemic

“…As in other pandemic caregiver studies, inability to accompany patients to appointments and be included in important medical consultations negatively impacted caregiver perceived e cacy (23,24,26), and caused feelings of sadness, guilt and regret. These emotions related not only to their inability to offer emotional support, but also practical support in terms of keeping check on the care and treatment provided, with caregivers left feeling helpless and experiencing loss of control, particularly when mistakes or poor treatment occurred.…”

“…While some positive caregiver experiences have been observed relating to enhanced family-time and coping (22)(23)(24)(25), the small number of studies available have more commonly reported negative experiences amongst current (24)(25)(26) and bereaved (22,23) caregivers. These include reduced social support for family caregivers (22,24), detrimental impacts on caregiver wellbeing, quality of life and perceived e cacy (23)(24)(25)(26)(27) and concerns over the quality of care and treatment provided to the patient and the infection risks posed by COVID-19 (23,24). The need for families to have a clear understanding of their family member's condition and declining health, stay connected with them in the nal weeks/days of life and have the opportunity for nal contact before they died has also been described (27) .…”