Experiences, understandings and support needs of family carers of older patients with delirium: a descriptive mixed methods study in a hospital delirium unit

Abstract

Delirium is common in older patients. Little is known of support needs of families of older hospital patients with delirium. To inform nursing practice, we sought to describe families' experiences, understanding of delirium and delirium care, and support needs. Descriptive mixed methods. Review of questionnaire items used with families of people with terminal delirium informed development of a new questionnaire to evaluate the support needs in our study population. In a tertiary hospital delirium unit, we recruited 17 family carers of older patients with (non-terminal) delirium to respond to this questionnaire. Twelve participants (11 female) also took part in interviews addressing the study's aims. Descriptive statistics were calculated and thematic analysis was undertaken. From the survey, key family issues included distress about the patient's condition, worries about future care, and a need for more information about how the patient might feel and how families could support the patient. Themes from interviews included The admission experience, Worries and concerns, Feeling supported, and The discharge experience. Limited understanding of delirium underpinned all themes. Families experienced shock and sadness at the change in the patient; they were reassured by the specialist care but needed more information about delirium, its effects and outcomes, and how they could help with care. Meeting long-term postdischarge needs was a key concern. In this study, families with a hospitalised older relative who had delirium described a distressing experience and needs for informational support. Further research is needed outside of delirium-specific units and in samples including a greater proportion of male relatives. Nurses should work within the interdisciplinary team to ensure a planned, sensitive and timely approach to informing the patient's family about delirium and its implications for their relative, recognising the family carer's role and likely distress.