Relatives’ experiences of encountering the older person with acute confusional state: experiencing unfamiliarity in a familiar person

Abstract

Aims and objectives. The aim was to understand the lived experience of close relatives encountering older persons with acute confusional state. Background. Little is known about relatives of patients with acute confusional state and their experiences while encountering a family member exhibiting acute confusional state. Design. A descriptive phenomenological research approach was used. Methods. Data were collected by interviewing 10 close relatives of older people with acute confusional state at two hospital wards. Results. Relatives experience the encounter as encountering a familiar person who has suddenly become unfamiliar, struggling to separate the familiar from the unfamiliar and trying to understand the causes of acute confusional state and the behaviour of the person. Six constituents illuminate the phenomenon: ‘change in the other person’, ‘rapid and unexpected changes’, ‘experiencing insecurity in the encounter’, ‘trusting or mistrusting the other person’, ‘experiencing loss’ and ‘experiencing exposure’. Relevance to clinical practice. It is important for professional carers to support relatives on how to encounter the person with acute confusional state, and to co‐operate with relatives to gain knowledge about the unique person behind the acute confusional state. Conclusion. Relatives’ difficulties in dealing with strong emotions evoked within the encounter, experiencing limitation and lack of trust is essential knowledge for professional carers in all care settings.

The delirium experience: what is the effect on patients, relatives and staff and what can be done to modify this?

“…Similar findings are reported by another study examining the relatives of patients with advanced cancer who described their experiences as 'stressful', 'terrible', 'frustrating' and 'scary' (Cohen et al, 2009). Relatives in this work reported feelings of 'loss', 'mistrust' and 'insecurity' when dealing with the unfamiliar behaviour of a familiar person with an acute confusional state (Stenwall et al, 2008b). Although it can be difficult to disentangle the distress related to the observation of delirium and the distress related to terminal illness, the findings of these studies are substantiated by other qualitative work using a descriptive phenomenological approach in non-terminal patients (Stenwall et al, 2008b).…”

“…This distress was reported in relation to 'guilt', 'anxiety and worry', 'helplessness' and 'exhaustion' (Namba et al, 2007). Although it can be difficult to disentangle the distress related to the observation of delirium and the distress related to terminal illness, the findings of these studies are substantiated by other qualitative work using a descriptive phenomenological approach in non-terminal patients (Stenwall et al, 2008b). Notably though, those who had expected 'confusion' found the experience less distressing.…”

“…A psychoeducational intervention involving nurse-led discussion and a brochure explaining delirium was evaluated using a before and after study. The importance of 'treating the patient as before' was also highlighted by Stenwall et al (2008b) who concluded that the relative's knowledge of the patient should inform the style of communication used and should be tailored to the individual patient encounter. The families receiving the intervention felt more equipped to make decisions than those receiving 'usual care', and overall, participants felt that family caregivers should be proactively educated about delirium (Gagnon et al, 2002).…”

Reflexivity and exploring the meaning of delirium through media depictions: Methodological insights from a phenomenological study

“…Family members are particularly impacted because these changes are sudden, unanticipated, and uncharacteristic for their older person; their behaviors are suddenly out of character and might seem bizarre. Indeed, they seem to inhabit a different reality (Stenwall et al, ; Day & Higgins, ,b). The changes family members encounter appear from “nowhere” and render their loved one “unfamiliar”, “absent”, or “lost” (Andersson et al, ; Stenwall et al, ; Day & Higgins, ,b).…”

Delirium Related Distress Experienced by Patients, Caregivers and Nursing Staff in a Medical Intensive Care Unit (Icu)

“…Feelings of loss, insecurity and mistrust have been reported when a loved one experiences an acute confusional state. 10 These emotions are not only more prevalent than previously thought, but also much more severe than even the suffering experienced by the patients themselves.…”