Personalized Experiences to Inform Improved Communication for Minorities With Life Limiting Illness
2021년 1월 29일 업데이트: University of Colorado, Denver
The purpose of this research is to develop patient-centered palliative care interventions to improve patient-provider communication and Quality of Life (QoL) of ethnic and racial minority patients living with life-limiting illnesses.
Eliciting personal experiences is an effective way for patients to communicate their cultural values and beliefs.
This study will assess how to integrate the patients' personal experience narratives into the electronic health record (EHR).
The primary hypothesis is that the implementation of a patient-centered intervention to elicit personal experiences that are included in the EHR will improve patient-provider communication and patients' QoL.
연구 개요
상태
완전한
상세 설명
Racial and ethnic minority patients with a Life Limiting Illnes (LLI) in the United States are underserved in many ways, including quality of palliative care.
Specific disparities have been reported in palliative care for minority patients, including sub-optimal patient-provider communication and resulting lower QoL.
A potential approach to improve communication is to elicit patients' personal narratives that address their cultural or spiritual values and beliefs, and include them in the EHR.
The objective of this observational study is to assess the feasibility and efficacy of a palliative care nursing intervention designed to 1) identify barriers and facilitators for eliciting and recording relevant narratives from the perspectives of the key stakeholders: minority patients with LLI; 2) to conduct usability testing, applying a user-system-environment evaluation process to determine essential requirements for integration of the patient-centered narratives into the EHR; and 3) identify barriers and facilitators of integration of the patient's narrative into daily workflow from the perspectives of key stakeholders: acute care bedside nurse.
연구 유형
관찰
등록 (실제)
38
연락처 및 위치
이 섹션에서는 연구를 수행하는 사람들의 연락처 정보와 이 연구가 수행되는 장소에 대한 정보를 제공합니다.
연구 장소
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Colorado
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Aurora, Colorado, 미국, 80045
- University Of Colorado Hospital
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참여기준
연구원은 적격성 기준이라는 특정 설명에 맞는 사람을 찾습니다. 이러한 기준의 몇 가지 예는 개인의 일반적인 건강 상태 또는 이전 치료입니다.
자격 기준
공부할 수 있는 나이
18년 이상 (성인, 고령자)
건강한 자원 봉사자를 받아들입니다
예
연구 대상 성별
모두
샘플링 방법
비확률 샘플
연구 인구
Inpatient population description:
Patient's on inpatient with the following diagnoses:
- COPD
- Heart Failure
- Cancer
Nurse patient population:
Bedside nurses who are involved in the care of a patient who is participating in the storytelling intervention with the diagnoses listed above.
설명
Inclusion Criteria: Patients
- 18 years of age or older
- able to read English
- capable of giving informed consent
- self-identifying as part of a racial or ethnic minority
diagnosed with at least one LLI. The operational definition of LLI eligible for this study includes the following diagnoses:
- metastatic solid cancer or inoperable lung cancer;
- COPD with FEV1 values < 35% predicted or oxygen dependence;
- New York Heart Association Class III or IV heart failure (CHF).
Inclusion criteria: Nurse
- 18 years of age or older
- Confirm verbally that they were involved in the care of a patient who is participating in the storytelling intervention
공부 계획
이 섹션에서는 연구 설계 방법과 연구가 측정하는 내용을 포함하여 연구 계획에 대한 세부 정보를 제공합니다.
연구는 어떻게 설계됩니까?
디자인 세부사항
코호트 및 개입
그룹/코호트 |
개입 / 치료 |
|---|---|
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Inpatient Participants
Patients admitted to University of Colorado Hospital with at least one of the following diagnoses:
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The storytelling intervention consists of an audio-recorded interview with each patient participant prompted the participant to share their story with questions such as: tell me about your illness, tell me how your illness has affected your emotions, relationships, and spirituality.
The interview transcripts will be used to co-create a 1 page patient story using these criteria:1) written in the first person; 2) nonjudgmental; 3) captures the participant's voice; 4) accurately reflects content of the interview; and 5) non-labeling.
Once the story has been approved by the participant, I will upload it to the EHR.
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Nurse Participants
Bedside nurses who provide care at the inpatient level for the following diseases:
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Once the patient's story is uploaded to the EHR, automatic alerts will be sent to the participant's EHR-assigned nurses.
For usability testing, nurse participants will 1) provide content expertise of the workflow processes, and 2) put the storytelling intervention through in-house usability testing to check the "strength" of EHR features and user-friendliness.
Data will be collected with exit interviews and completion of a questionnaire: the System Usability Scale which asks them to rank their satisfaction with specific elements such as: how the story is labeled and presented in the EHR, any technical navigation EHR difficulties, and use of the material.
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연구는 무엇을 측정합니까?
주요 결과 측정
결과 측정 |
측정값 설명 |
기간 |
|---|---|---|
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Number of Completed Exit Interviews From Patients on Feasibility of Their Use of Their Narrative Integrated Into EHR
기간: 1-2 weeks
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Using an observational design, this measure (exit interviews) were completed with 20 inpatient participants and 18 nurse participants.
The qualitative data from the interviews were used to define and refine the storytelling intervention.
The data collected from the exit interview is qualitative in nature and therefore does not have a numerical value.
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1-2 weeks
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기타 결과 측정
결과 측정 |
측정값 설명 |
기간 |
|---|---|---|
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Usability Assessment Via the System Usability Scale(SUS), Range of 0 to 100, With Higher Number Representing a Better Outcome SUS Scores Have a Range of 0 to 100, the Higher the Number Represents a Better Outcome.
기간: 1-2 weeks
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This study will utilize an observational design to define and refine the storytelling intervention, seeking input from the key stakeholders: providers (acute care bedside nurses).The SUS scale is a 10 item Likert scale which gives a global view of subjective assessment of usability with five item responses options from strongly agree to strongly disagree.
SUS yields a single number representing a composite measure of the overall usability of the system being studied.
Note that scores for individual items are not meaningful on their own.
To calculate the SUS score, first sum the score contributions from each item.
Each item's score contribution will range from 0 to 4. For items 1,3,5,7, and 9, the score contribution is the scale position minus 1.
For items 2,4,6,8, and 10, the contribution is 5 minus the scale position.
Multiply the sum of the scores by 2.5 to obtain the overall value of the SUS, with the higher the number, the better the outcome.
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1-2 weeks
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공동 작업자 및 조사자
여기에서 이 연구와 관련된 사람과 조직을 찾을 수 있습니다.
간행물 및 유용한 링크
연구에 대한 정보 입력을 담당하는 사람이 자발적으로 이러한 간행물을 제공합니다. 이것은 연구와 관련된 모든 것에 관한 것일 수 있습니다.
연구 기록 날짜
이 날짜는 ClinicalTrials.gov에 대한 연구 기록 및 요약 결과 제출의 진행 상황을 추적합니다. 연구 기록 및 보고된 결과는 공개 웹사이트에 게시되기 전에 특정 품질 관리 기준을 충족하는지 확인하기 위해 국립 의학 도서관(NLM)에서 검토합니다.
연구 주요 날짜
연구 시작 (실제)
2017년 11월 15일
기본 완료 (실제)
2018년 11월 30일
연구 완료 (실제)
2018년 11월 30일
연구 등록 날짜
최초 제출
2017년 12월 8일
QC 기준을 충족하는 최초 제출
2017년 12월 28일
처음 게시됨 (실제)
2018년 1월 5일
연구 기록 업데이트
마지막 업데이트 게시됨 (실제)
2021년 2월 18일
QC 기준을 충족하는 마지막 업데이트 제출
2021년 1월 29일
마지막으로 확인됨
2021년 1월 1일
추가 정보
이 정보는 변경 없이 clinicaltrials.gov 웹사이트에서 직접 가져온 것입니다. 귀하의 연구 세부 정보를 변경, 제거 또는 업데이트하도록 요청하는 경우 register@clinicaltrials.gov. 문의하십시오. 변경 사항이 clinicaltrials.gov에 구현되는 즉시 저희 웹사이트에도 자동으로 업데이트됩니다. .