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To explore oncology nursing advance care planning practices and understand how to better support nurses in conducting advance care planning with patients and their families.
Qualitative interpretive descriptive methodology.
Semi-structured, individual telephone or Zoom interviews with 19 oncology nurses in a Western province of Canada between May and August 2022. Interviews were audio-recorded, transcribed, de-identified, and analysed using inductive, thematic, and constant comparative techniques.
Oncology nurses highlighted several factors affecting their ability to engage in advance care planning, including (1) uncertainties related to the nursing role in advance care planning, such as how and when a nurse ought to engage; (2) the educational, experiential, and training environment; and (3) structural barriers, such as a lack of time, space, and privacy; models of care that inhibit nurses from developing longitudinal relationships with their patients; and team dynamics that affect advance care planning interdisciplinary collaboration.
To create environments that support oncology nurses to conduct advance care planning, the findings suggest uncertainties be addressed through a clear and cohesive organisational approach to advance care planning and ongoing, integrated educational opportunities. Further, service delivery models may need to be restructured such that nurses have dedicated time and space for nurse-led advance care planning and opportunities to develop trusting relationships with both patients and their interdisciplinary colleagues.
Oncology nurses recognised the value of advance care planning in supporting patient-centred care and shared decision making, yet they reported limited engagement in advance care planning in their practice. To support oncology nurses in conducting advance care planning, healthcare leaders may address (1) advance care planning-related uncertainties and (2) structural barriers that prevent nurses from engaging in advance care planning with patients and their families. Findings may guide modifications to care models, enhancing support for oncology nurses in conducting advance care planning.
We selected and adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ) as the most applicable guideline.
No patient or public contribution.
To develop and validate the End-of-Life Care Assessment Tool for Dementia (EoLC-ATD).
A methodological study with multiple phases.
Five sub-studies comprising: a review of 90 validated dementia measures to compile an item bank of advanced dementia symptoms; focus groups with registered nurses on advanced dementia symptom identification and relevance of item bank inclusions; Delphi surveys with dementia experts seeking consensus on the EoLC-ATD constructs and items; pilot testing of the EoLC-ATD; and field testing of the EoLC-ATD in persons with dementia.
The item-bank included 180 symptoms, most of which focus group nurses (n = 17) identified as occurring in advanced dementia. Delphi surveys with dementia experts (n = 31) achieved 70% consensus for 25 of 26 EoLC-ATD items. Pilot testing of the EoLC-ATD by two nurses in eight persons with dementia showed good agreement for six constructs (Cohen's Kappa 0.856–0.927) and 26 items (Cronbach's alpha 77.0). An ‘other sympto’ item was included following RN recommendation. The 27-item EoLC-ATD field tested by 17 nurses in persons with dementia (n = 113) accurately identified advanced dementia symptoms (Cronbach's alpha 77.0, p < 0.001). Mortality at 180 days after baseline EoLC-ATD was significant (p < 0.001, area under the ROC curve p = 0.769).
The EoLC-ATD accurately and reliably identified symptoms of advanced dementia.
The EoLC-ATD provides registered nurses with a single measure of advanced dementia symptoms that will help in identifying symptom-responsive palliative care requirements.
The EoLC-ATD will address the current lack of a validated dementia symptom measure for use by aged care home registered nurses to identify unique palliative and end-of-life care needs according to presenting symptoms in persons living with advanced dementia.
STROBE Statement for cohort and mixed methods studies.
An eight-member Expert Advisory Group, which provided guidance and advice throughout the study, was composed of three carers of persons living with dementia, two dementia care clinicians, a dementia care clinical educator, and two dementia clinician researchers.
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