Can a decision aid given to surrogate decision-makers for people with dementia improve outcomes for both the patient and the carer?

2021 ◽  
Author(s):  
Karen Pettersen ◽  
Christopher Bunt
Keyword(s):  
Decision Aid ◽  
Decision Makers ◽  
People With Dementia ◽  
Surrogate Decision Makers ◽  
Surrogate Decision

scholarly journals Impact of a Decision Aid on Surrogate Decision-Makers' Perceptions of Feeding Options for Patients With Dementia

2013 ◽  
Vol 14 (2) ◽  
pp. 114-118 ◽  
Author(s):  
E. Amanda Snyder ◽  
Anthony J. Caprio ◽  
Kathryn Wessell ◽  
Feng Chang Lin ◽  
Laura C. Hanson
Keyword(s):  
Decision Aid ◽  
Decision Makers ◽  
Surrogate Decision Makers ◽  
Surrogate Decision

Abstract 12789: Development of the Tool to EMPOwer Surrogate Decision Makers of Comatose Survivors of Cardiac Arrest

Circulation ◽  
2021 ◽  
Vol 144 (Suppl_2) ◽  
Author(s):  
Sarah M Perman ◽  
Bonnie J Siry-Bove ◽  
Benjamin Abella ◽  
Stacie L Daugherty ◽  
Edward Havranek ◽  
...  
Keyword(s):  
Decision Making ◽  
Cardiac Arrest ◽  
Decision Aid ◽  
Reading Level ◽  
Decision Makers ◽  
Structured Interviews ◽  
Patient Decision ◽  
Surrogate Decision Makers ◽  
Surrogate Decision ◽  
Grade Reading Level

Introduction: Surrogate decision makers (SDMs) for comatose survivors of cardiac arrest are often charged with making time-sensitive complex decisions with regard to life-sustaining therapies in a sudden critical illness. We describe the development of a decision aid for SDMs of comatose survivors of cardiac arrest. Methods: Applying recommendations from the International Patient Decision Aid Standards, we developed this decision aid iteratively with the purpose to educate families on post-arrest care and evidence based decision-making. We obtained feedback from stakeholders, including surrogate decision makers, patients, caregivers, nurses and physicians, in focus groups and semi-structured interviews. Results: Informed by interviews with SDMs and the AHA Guidelines, we designed a prototype of the decision aid. Each iteration resulted in a refined version of the aid (Figure). Step 1 included feedback from the Shared Decision-Making Core at the Adult and Child Consortium on Outcomes Research and Delivery Science (ACCORDS). Step 2 incorporated feedback from the ACCORDS Community Engagement Stakeholder group. Step 3 consisted of 10 semi-structured interviews with informal caregivers and patient pairs within the Advanced Heart Failure or Seniors clinics. The document was then reviewed by a team of expert cardiac arrest stakeholders. The aid includes key definitions, a timeline of post-arrest care, factors that support decisions to discontinue or pursue life sustaining therapies, commonly asked questions and an illustration of a patient undergoing post-arrest treatment. The decision aid, entitled T ool to EMPO wer (TEMPO) Surrogate Decision Makers, is written at a 7 th grade reading level. Conclusions: Through a robust iterative process, we designed a decision aid for SDMs of comatose survivors of cardiac arrest. The aid is intended to support the decision to pursue or forego further life-sustaining therapy and to be informative about post-arrest care.

scholarly journals Development and Evaluation of Decision Aid for Family Surrogate Decision Makers of Patients with Acute Kidney Injury Requiring Renal Replacement Therapy (RRT) in ICU: A Study Protocol

2020 ◽  
Author(s):  
Miao Zheng ◽  
Changlin Yin ◽  
Ying Cao ◽  
Yonghui Zhang ◽  
Kuoliang Zhang ◽  
...  
Keyword(s):  
Decision Making ◽  
Acute Kidney Injury ◽  
Renal Replacement Therapy ◽  
Replacement Therapy ◽  
Decision Aid ◽  
Kidney Injury ◽  
Decision Makers ◽  
User Centered Design ◽  
Surrogate Decision Makers ◽  
Surrogate Decision

Abstract Background Shared decision-making is endorsed by guidelines in both acute kidney injury and critical care medicine. However, there is still a huge need for effective interventions, especially focusing on decisions in renal replacement therapy for ICU patients with acute kidney injury. Decision aid is an evidence-based support to achieve shared decision-making for better decision quality, which not only enhances knowledge of treatment options but also matches patients’ preferences and values.Objectives To develop and evaluate a decision aid for family surrogate decision makers of ICU patients with acute kidney injury who are requiring renal replacement therapy, following a systematic and rigorous process.Methods We will follow the systematic development process combined with user-centered design, to develop and evaluate the decision aid in three phases: (1) development of a decision aid based on extensive literature reviews, key stakeholders’ interviews, evidence synthesis and drafting prototype; (2) alpha-testing (“near-live” usability) during simulated clinical encounters to test the comprehensibility, acceptability and usability; (3) beta-testing (“live” usability) to examine the feasibility in the clinical context. User-testing will be conducted for the iterative revision of the decision aid. The IPDASi (v4.0) will be used for the qualitative assessment.Discussion This study may help family surrogate decision makers make renal replacement treatment decisions that match with their loved one’s preferences and values in ICU context, while helping user-centered design integrate into this complex medical decision making.Trial registration number Chinese Clinical Trial registry (ChiCTR2000031613).

Abstract 13114: Effectiveness of a Novel Decision Aid for Surrogate Decision Makers of Comatose Survivors of Cardiac Arrest: A Pilot Study of the “Tool to EMPOwer Surrogate Decision Makers” (TEMPO)

Circulation ◽  
2021 ◽  
Vol 144 (Suppl_2) ◽  
Author(s):  
Sarah M Perman ◽  
Shelby Shelton ◽  
Bonnie Siry-Bove ◽  
Katherine Mayer ◽  
Dan D Matlock ◽  
...  
Keyword(s):  
Decision Making ◽  
Cardiac Arrest ◽  
Decision Aid ◽  
Tertiary Care ◽  
Decision Makers ◽  
Care Hospital ◽  
Post Intervention ◽  
Surrogate Decision Makers ◽  
Surrogate Decision ◽  
Knowledge Survey

Introduction: Surrogate decision makers (SDMs) represent critical stakeholders in decision making for comatose survivors of cardiac arrest, yet these individuals are often unprepared for decision making and unfamiliar with the complexity of post-cardiac arrest care. To that end, we created a decision aid for SDMs intended to inform and support evidence-based decision making for comatose survivors of cardiac arrest. Methods: We conducted a pilot trial to measure real world effectiveness of the Tool to EMPOwer (TEMPO) Surrogate Decision Makers, by measuring knowledge and acceptability. Individuals were enrolled who self-identified as the SDM for a comatose survivor of OHCA admitted to an academic tertiary care hospital. Participants completed a pre-intervention survey prior to the provision of TEMPO, and a post-intervention survey approximately 24 hours after exposure to the intervention. Pre-survey questions included SDM demographics and an 8-question knowledge survey. Post-intervention surveys included the same knowledge questions, the Ottawa Acceptability of Decision Aid tool, and questions to measure if SDMs shared TEMPO with others. This study was approved by the Colorado Multiple Institutional Review Board and registered at Clinicaltrials.gov (NCT03908346). Results: Twenty SDMs were enrolled between 9/1/2020 and 6/7/2021. One subject did not complete the post-intervention survey therefore 19 subject responses were analyzed for the purpose of this report. Participants were 85.0% Female, 47.4 +/- 14.8 years, and 45.0% were the spouse of the patient. In the 8-question knowledge survey, results improved from 57.2% correct to 90.8% correct after exposure to TEMPO (p<0.001). Using the Ottawa Acceptability Tool, 89.5% of participants stated TEMPO was useful in decision-making and 94.7% reported that TEMPO made their decision “easier”. Most (79.0%) participants reported they shared the DA with another family/friend in-person, while some (52.6%) reported they shared content with another person by telephone. Conclusion: Initial pilot data on the efficacy of the Tool to EMPOwer Surrogate Decision Makers of comatose survivors of cardiac arrest shows significant promise in improving knowledge and supporting decision-making.

scholarly journals Effects of a Personalized Web-Based Decision Aid for Surrogate Decision Makers of Patients With Prolonged Mechanical Ventilation

2019 ◽  
Vol 170 (5) ◽  
pp. 285 ◽  
Author(s):  
Christopher E. Cox ◽  
Douglas B. White ◽  
Catherine L. Hough ◽  
Derek M. Jones ◽  
Jeremy M. Kahn ◽  
...  
Keyword(s):  
Mechanical Ventilation ◽  
Decision Aid ◽  
Prolonged Mechanical Ventilation ◽  
Decision Makers ◽  
Web Based ◽  
Surrogate Decision Makers ◽  
Surrogate Decision

scholarly journals Development and evaluation of a decision aid for family surrogate decision-makers for patients with acute kidney injury requiring renal replacement therapy (RRT) in ICUs: a study protocol

BMJ Open ◽  
2021 ◽  
Vol 11 (2) ◽  
pp. e043385
Author(s):  
Miao Zheng ◽  
Changlin Yin ◽  
Ying Cao ◽  
Yonghui Zhang ◽  
Kuoliang Zhang ◽  
...  
Keyword(s):  
Acute Kidney Injury ◽  
Renal Replacement Therapy ◽  
Replacement Therapy ◽  
Decision Aid ◽  
Kidney Injury ◽  
Decision Makers ◽  
Shared Decision ◽  
Icu Patients ◽  
Surrogate Decision Makers ◽  
Surrogate Decision

IntroductionShared decision making is endorsed by guidelines for both acute kidney injury and critical care medicine. However, there is still a huge need for effective interventions, especially those focusing on decisions about renal replacement therapy for intensive care unit (ICU) patients with acute kidney injury. The decision aids provide evidence-based support for shared decision making, to achieve better decisions through enhanced knowledge of treatment options and treatment aligns with patients’ preferences and values. Therefore, our objectives are to develop and evaluate a decision aid systematically and rigorously for family surrogate decision makers of ICU patients with acute kidney injury who need renal replacement therapy.Methods and analysisWe will use a systematic development process that focuses on user-centred design to develop and evaluate the decision aid in three phases: (1) development of a draft prototype for the decision aid based on extensive literature reviews, interviews with key stakeholders and evidence synthesis; (2) alpha testing (‘near live’ usability) the decision aid during simulated clinical encounters to test its comprehensibility, acceptability and usability and (3) beta testing (‘live’ usability) to examine the aid’s clinical feasibility. User testing will be conducted using mixed-methods approach to support iterative revision of the decision aid. The IPDASi (V.4.0) will be used for following qualitative assessment. All interviews will be analysed by Colaizzi’s seven-step approach to qualitative analysis. The coding scheme will use to analyse user interactions. Questionnaire surveys will be analysed using paired sample t-tests when related to the before-and-after survey, otherwise using one-sample t-test.Ethics and disseminationEthical approval for this research was obtained from the Ethics Committee of the First Affiliated Hospital of Army Medical University, PLA (Ref: KY2020104). All participants will sign a formal informed consent form. The findings will be published in peer-reviewed journals and reported in appropriate meetings.Trial registration numberChiCTR2000031613.

Sign in / Sign up

Export Citation Format

Share Document