DisparitiesinpalliativecareforminoritieswithLLIexistbecauseofgapsinknowledgearound patientcenteredpsychological,social,andspiritualpalliativecareinterventions. Patient- centeredpalliativecarecommunicationinterventionsmustbeinformedbytheperspectivesof patients whoarelivingeachdaywithLLI.Storytellinginterventionsareaneffectivewayto communicateapatient?sculturalvaluesandbeliefs.Yet,thereisalackofresearchabout howtoefficientlyandeffectivelyintegratethepatient?sstoryintotheEHR.Thecentral hypothesisofthisproposalisthattheimplementationofapatient-centeredstorytelling interventionwithminoritypatientswillresultinimprovedpatient-providercommunication.For theK99Phase,specificaim1istoidentifybarriersandfacilitatorsforthestorytelling interventionfromtheperspectivesofthekeystakeholders-minoritypatientswithLLI and acutecarebedsidenurses-throughpatientandnurseexitinterviews;?andfieldanalysisof EHRinterfaceuseandend-usersurveysofthenurses.
Specificaim2 istoconductusability testing,applyingauser-task-system-environmentevaluationprocesstodetermineessential requirementsforintegrationanduseofthepatient-centeredstoryintotheEHR,fromthe perspectiveofanimportantend-user:theacutecarebedsidenurse.FortheR00Phase, specificaim1istoestablishacceptability,feasibility,andpotentialeffect sizeofthepatient- centeredstorytellinginterventionforhospitalizedminoritypatientswithLLI.
Specificaim2 is tocomparetheeffectsofthestorytelling interventiontousualcarefortheprimaryoutcomeof qualityofcommunicationandforsecondaryoutcomesofanxiety,depressionand psychosocialillnessimpact.TheexpectedoutcomeofK99 phasewillbetherefinementofa storytellingintervention.TheexpectedoutcomesofR00phase willbecompletionofaproof- of-conceptstudyofthestorytellingintervention.Thisproposalwillbuildaprogramofpatient- centeredresearchwithracialandethnicminoritypopulationsandprovidethefoundation forfutureR01applicationsfordeveloping,testing,andtailoringpatient-centered communicationinterventionstoimproveQoLforminoritypatientslivingwithLLI.
The proposed research is relevant to public health because disparities in palliative care for minorities with life limiting illness exist due to lack of integration of culturally sensitive psychological, social and spiritual care interventions. Patient-centered communication interventions that are integrated into the electronic health record creates possibilities of incorporating the psychological, social and spiritual values and beliefs of the minority patient with life limiting illness. Outcomes from this work will provide incremental development and testing of a patient-centered communication intervention in palliative care that take into account the perspectives of an ethnoculturally diverse group of minorities living with life limiting illness.
| Coats, Heather Lea (2017) African American elders' psychological-social-spiritual cultural experiences across serious illness: an integrative literature review through a palliative care lens. Ann Palliat Med 6:253-269 |
