Abstract
The COVID-19 pandemic greatly affected the caregiving for individuals with chronic illnesses in the hospital, long-term and community care settings. Family and informal caregivers play an essential role in assisting their relatives with chronic illness in their self-management and rehabilitation. The role of family and informal caregivers is particularly more prominent for individuals with neurological chronic illnesses because of the greater physical, intellectual, communicative and therefore the behavioural dependency of these individuals.
While caring for their sick relatives, family and informal caregivers navigate the intricate health care and community systems and strive to ensure a balance in their own care and care of their loved ones. The COVID-19 pandemic aggravated the tensions and exhaustion of family and informal caregivers in visiting their loved ones in clinical settings and sustaining quality care of the relatives in home and community settings. The healthcare settings had to impose restrictions on family visitation for the benefit of patients, families and healthcare professionals. This paper addressed an important aspect of family visitation, namely the visitor ban and how it affected the relatives of individuals with neurological illnesses.
The authors conducted a robust study with many strengths such as a reasonable and purposive sample, robust data analysis, incorporating reflexivity, thick description of study methods and themes. The relatives of individuals with neurological illnesses recognised that the visitor ban was needed to protect their loved ones from getting infected with COVID-19 and inadvertently also eased the visitation stress of the family members. Nevertheless, the relatives also shared that they experienced worries about the condition of their loved ones, evoking feelings of anxiety and frustration. Despite the importance of the visitor ban, the relatives expected that structured measures could have been in place to allow them to receive regular updates on their loved ones’ care, health and recovery.
One noteworthy finding is the relatives’ deep desire to be involved in the recovery process and the role of nurses in facilitating them by providing information about the health status of their loved ones. However, the relatives noted that some nurses were cold and non-supportive and uncaring, which increased their frustration and anxiety. The notion of distant caring emerged from the data which referred to the use of virtual technology to engage in the caregiving process. However, this distant care was contingent upon the readiness of health care professionals and organisations. Unavailability of resources and effective measures to facilitate this distant care aggravated the stress and worries of the relatives.
The findings bring into attention the role of health care organisations in instituting procedures to facilitate timely and continuous interaction of family and informal caregivers, and their loved ones in the hospitals during crisis (e.g. epidemics and pandemics). Health care organisations and professionals should develop collaborative and innovative solutions to combat the challenges associated with visitor bans and other restrictions which may be needed during global and institutional health crisis. The findings also remind the international health care community how global crisis can impact the interpersonal relationship among patients, families and the health care professionals. Therefore, this study serves as a call for a greater attention to enhance the communication, virtual care and relationships among patients, families and health care professionals during crisis.
Footnotes