Preliminary Findings of an Adapted Nurse-Led Palliative Care Intervention.

Abstract

Context: Despite the increased number of people living with Alzheimer's disease and related dementias (PLWD), limited early palliative care interventions exist for this population. Adapting promising interventions for other progressive disease conditions may address this need. Few published studies have examined this topic using recognized adaptation frameworks. Objectives: To systematically adapt a nurse-led palliative care intervention for people with idiopathic pulmonary fibrosis and caregivers (A Program of SUPPORT™) for PLWD and caregivers before pilot/feasibility testing. Methods: The Step Framework guided the transformation of A Program of SUPPORT™ to A Program of SUPPORT-D™ (dementia). The Step Framework was modified to include key stakeholder feedback on the initial intervention adaptation using a qualitative approach with semistructured interviews conducted with 5 community support professionals (respite care leaders and staff) and 10 caregivers from the Southeastern United States. A prioritization matrix was created to analyze qualitative feedback and inform intervention refinements. Data were collected between November 2021 and March 2022. Results: The modified Step Framework was a feasible guide for intervention adaptation. Three main themes emerged: organization, terminology, and content. Eight subthemes were identified within the content theme: strategies for providing care, planning ahead, understanding the illness, resources, safety, symptom management, social support, and self-management. Moreover, all participants provided largely positive feedback for the initial adaptation including over 200 suggestions for revision. Majority of participants suggested revising existing adapted content rather than including additional new content. The prioritization matrix was very useful in guiding additional intervention refinements, incorporating suggestions deemed highly important and improving the clarity of SUPPORT-D™. Conclusion: Adapting existing interventions for use by PLWD and caregivers is a practical approach that can increase the speed of translation of applicable and effective interventions used in other populations. Early feedback, prioritized using a matrix, helped further refine the initial adaptation.