Sheltering under a shield of love—A phenomenological–hermeneutic study of relatives' experiences in an acute neurological ward

Abstract

Aim To investigate the lived experience of being a relative to a patient admitted to an acute neurological ward to bring knowledge of what is essential to them. Design The study takes a phenomenological–hermeneutic approach. Methods Data were gathered through six individual semi‐structured interviews with relatives from an acute neurological ward. A three‐levelled analysis and interpretation inspired by Paul Ricoeur's philosophy was applied. Results Two main themes were identified: To make yourself strong while feeling vulnerable inside and To live in a changed everyday life. Within these themes, the connection between the relatives and the patients appeared to be a relationship of love. In this relationship, the relatives experience existential vulnerability. The lives of relatives undergo a difficult upheaval, which is challenged by deep emotional feelings. However, to be able to be there for their loved ones they are sheltering under a shield of love.

Caring from a distance: how a COVID-19 visitor ban affects relatives when a loved one is admitted to a neurological or neurosurgical ward

“…All relatives found it extremely challenging not to be allowed to set foot in the hospital, leaving them in an emotional vacuum, or as one described it, ‘feeling checkmate’. In a recent study, Hesselvig et al illuminate how relatives of neurological patients struggle with unmet emotional needs even before the COVID-19 restrictions ( Hesselvig et al, 2020 ).…”

“…Depending on the severity of a neurological disease (herein used to collectively refer to neurology and neurosurgery) or brain injury, patients may suffer from various disabilities, including paralysis in one side of the body, speech problems (aphasia), poor balance, swallowing problems, fatigue, difficulty remembering, thinking, and solving problems and altered personality ( Langhorne et al, 2011 ). The complexity of neurological disease means that patients may endure hospitalisation and daily life with physical, cognitive, communicative, behavioural or psychosocial limitations ( Ates et al, 2018 ; Hesselvig et al, 2020 ). For this reason, some of the patient's preconditions for entering a collaboration, will be weakened to such an extent that they cannot participate in decisions about their treatment, rehabilitation and future.…”

“…A Danish study from 2020 concludes that relatives are emotionally vulnerable due to their loving relationship with a patient in acute neurology. It further describes how it is still essential for the relatives to go ‘all the way’ to be a strong and resourceful support for the patient ( Hesselvig et al, 2020 ). However, the poor health of caregivers will most likely affect the quality of the care they provide, thus affecting the health care outcomes of the patient ( Norup, 2018 ).…”

Feeling all alone in the world – experiences of patients with a neurological disease during a COVID‐19 visitor ban: An interview study

“…Another obstacle for the most severely affected patients was that nurses sometimes confiscated their telephones – apparently to protect them. Studies have claimed that relatives of neurological patients play a statistically significant role because the patients are often seriously ill and may suffer additional physical, cognitive, communicative, behavioural or psychosocial limitations (Ates et al, 2018 ; Hesselvig et al, 2020 ). Because of these complex circumstances, a lack of communication seems very unfortunate for both patients and their loved ones.…”

“…Despite therapeutic advances, neurologic disorders are still considered severe due to the high associated mortality rate (Wiśniewski, 2020 ) and the risk of repercussions in the form of physical, cognitive, communicative, behavioural and psychosocial difficulties (Ates et al, 2018 ; Hesselvig et al, 2020 ).…”