Title: What are the experiences and support needs of district nurses caring for terminally ill people with delirium at home? A qualitative study
Funder: Marie Curie

Abstract: Background Delirium is a serious and distressing neuropsychiatric condition,1-4 which is common across all palliative care settings.5 Many people with terminal illness want to remain at home, and increasing numbers are predicted to die there in the future.13, 14 District nurses, in partnership with specialist palliative care services, are important in supporting people with palliative care needs, to remain at home.15-17 Detecting and managing delirium can be complex.6-11 A recent study by Marie Curie found a lack of delirium awareness amongst community healthcare professionals, which meant that diagnosis and/or treatment could potentially be delayed.12 Aim: To understand how delirium is assessed and managed by District nurses, and the support they need to do this well. Methods Design: A qualitative study. Participants: Fifteen to twenty District nurses from a variety of settings (General Practices and Out-of-Hours services). Data Collection: Virtual or face-to-face semi-structured interviews will be conducted with District nurses, either individually or in small groups. Questions will explore understanding of the term ‘delirium’, assessment of delirium, including awareness and use of screening tools, and their experience of delirium management. District nurses will be asked to identify areas of delirium care requiring improvement or additional support. Data Analysis: Interviews will be transcribed verbatim and anonymized. Data will be analysed using a framework approach. Implications The findings will contribute to our understanding of delirium assessment and management by District nurses, and the support they need to do this well. They will inform Marie Curie on the type of resources and support interventions that could be developed for District nurses, to improve delirium care for terminally ill people and their families. More broadly, our study will develop our partnership working with community healthcare professionals, and enhance the care we together provide to those cared for at home, as end-of-life approaches.

Lay abstract: Delirium is a serious and distressing condition, which commonly affects people with terminal illness. It usually develops over hours to days, and can cause confusion, memory problems, changes in concentration, perception (may develop hallucinations) and consciousness (people can become agitated or drowsy and withdrawn). It is important to detect delirium early, as it increases the person’s chance of recovery, leading to more quality time with their loved ones. When a person has only hours or days to live, their delirium is less likely to be reversible, but early detection is still beneficial, as it helps healthcare professionals know how they can best support the person and their family. Many people with terminal illness want to remain at home, and increasing numbers are predicted to die there in the future. District nurses, as part of the primary care team, in partnership with specialist palliative care services, are important in supporting people with terminal illness to remain at home. We know that detecting and treating delirium can be complex, particularly in the community. At Marie Curie hospice in Edinburgh, we recently published a study that described some of the challenges of caring for people who developed delirium at home. There was a lack of awareness about delirium amongst community health professionals, which could lead to the diagnosis being missed or treatment delayed. Our study will interview fifteen to twenty District nurses, individually or in small groups, about their experience of caring for people with delirium. The information from the interviews will help us understand how delirium is assessed and managed by District nurses, and the support they need to do this well. The findings may guide Marie Curie to develop resources for District nurses, which may include information leaflets or education, to improve delirium care for terminally ill people and their families.

Research activity codes: 7.2 END OF LIFE CARE;7.1 INDIVIDUAL CARE NEEDS;7.3 MANAGEMENT AND DECISION MAKING
Health categories: MENTAL HEALTH