Disparities?in?palliative?care?for?minorities?with?LLI?exist?because?of?gaps?in?knowledge?around? patient?centered?psychological,?social,?and?spiritual?palliative?care?interventions.? Patient-? centered?palliative?care?communication?interventions?must?be?informed?by?the?perspectives?of? patients? who?are?living?each?day?with?LLI.?Storytelling?interventions?are?an?effective?way?to? communicate?a?patient?s?cultural?values?and?beliefs.?Yet,?there?is?a?lack?of?research?about? how?to?efficiently?and?effectively?integrate?the?patient?s?story?into?the?EHR.?The?central? hypothesis?of?this?proposal?is?that?the?implementation?of?a?patient-?centered?storytelling? intervention?with?minority?patients?will?result?in?improved?patient-?provider?communication.?For? the?K99?Phase,?specific?aim?1?is?to?identify?barriers?and?facilitators?for?the?storytelling? intervention?from?the?perspectives?of?the?key?stakeholders-?minority?patients?with?LLI? and? acute?care?bedside?nurses-?through?patient?and?nurse?exit?interviews;??and?field?analysis?of? EHR?interface?use?and?end-?user?surveys?of?the?nurses.?Specific?aim?2?is?to?conduct?usability? testing,?applying?a?user-?task-?system-?environment?evaluation?process?to?determine?essential? requirements?for?integration?and?use?of?the?patient-?centered?story?into?the?EHR,?from?the? perspective?of?an?important?end-?user:?the?acute?care?bedside?nurse.?For?the?R00?Phase,? specific?aim?1?is?to?establish?acceptability,?feasibility,?and?potential?effect? size?of?the?patient-? centered?storytelling?intervention?for?hospitalized?minority?patients?with?LLI.?Specific?aim?2?is? to?compare?the?effects?of?the?storytelling? intervention?to?usual?care?for?the?primary?outcome?of? quality?of?communication?and?for?secondary?outcomes?of?anxiety,?depression?and? psychosocial?illness?impact.?The?expected?outcome?of?K99? phase?will?be?the?refinement?of?a? storytelling?intervention.?The?expected?outcomes?of?R00?phase? will?be?completion?of?a?proof-? of-?concept?study?of?the?storytelling?intervention.?This?proposal?will?build?a?program?of?patient-? centered?research?with?racial?and?ethnic?minority?populations?and?provide?the?foundation? for?future?R01?applications?for?developing,?testing,?and?tailoring?patient-?centered? communication?interventions?to?improve?QoL?for?minority?patients?living?with?LLI.? ?

R00NR016686

2017-09-15

2022-07-31