Personalized Experiences to Inform Improved Communication for Minorities With Life Limiting Illness
2021年1月29日 更新者：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.
調査の概要
状態
完了
詳細な説明
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.
研究の種類
観察的
入学 (実際)
38
連絡先と場所
このセクションには、調査を実施する担当者の連絡先の詳細と、この調査が実施されている場所に関する情報が記載されています。
研究場所
-
-
Colorado
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Aurora、Colorado、アメリカ、80045
- University Of Colorado Hospital
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参加基準
研究者は、適格基準と呼ばれる特定の説明に適合する人を探します。これらの基準のいくつかの例は、人の一般的な健康状態または以前の治療です。
適格基準
就学可能な年齢
18年歳以上 (大人、高齢者)
健康ボランティアの受け入れ
はい
受講資格のある性別
全て
サンプリング方法
非確率サンプル
調査対象母集団
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.
説明
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
研究計画
このセクションでは、研究がどのように設計され、研究が何を測定しているかなど、研究計画の詳細を提供します。
研究はどのように設計されていますか？
デザインの詳細
コホートと介入
グループ/コホート |
介入・治療 |
|---|---|
|
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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この研究は何を測定していますか？
主要な結果の測定
結果測定 |
メジャーの説明 |
時間枠 |
|---|---|---|
|
Number of Completed Exit Interviews From Patients on Feasibility of Their Use of Their Narrative Integrated Into EHR
時間枠：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.
|
1-2 weeks
|
その他の成果指標
結果測定 |
メジャーの説明 |
時間枠 |
|---|---|---|
|
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.
時間枠：1-2 weeks
|
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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協力者と研究者
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出版物と役立つリンク
研究に関する情報を入力する責任者は、自発的にこれらの出版物を提供します。これらは、研究に関連するあらゆるものに関するものである可能性があります。
研究記録日
これらの日付は、ClinicalTrials.gov への研究記録と要約結果の提出の進捗状況を追跡します。研究記録と報告された結果は、国立医学図書館 (NLM) によって審査され、公開 Web サイトに掲載される前に、特定の品質管理基準を満たしていることが確認されます。
主要日程の研究
研究開始 (実際)
2017年11月15日
一次修了 (実際)
2018年11月30日
研究の完了 (実際)
2018年11月30日
試験登録日
最初に提出
2017年12月8日
QC基準を満たした最初の提出物
2017年12月28日
最初の投稿 (実際)
2018年1月5日
学習記録の更新
投稿された最後の更新 (実際)
2021年2月18日
QC基準を満たした最後の更新が送信されました
2021年1月29日
最終確認日
2021年1月1日
詳しくは
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