Enhancing Assent and Treatment Outcomes: A Case Study on Responding to Aversive Ambient Auditory Stimuli for an Autistic Adult

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Enhancing Assent and Treatment Outcomes: A Case Study on Responding to Aversive Ambient Auditory Stimuli for an Autistic Adult

Original Article

Faris R. Kronfli, J. Stephanie Gonzalez, Malchijah T. Williams, Timothy R. Vollmer

Journal of Developmental and Physical Disabilities, 3 September 2024

Abstract

We explored assent procedures to promote assent and treatment effectiveness for an autistic adult. The objective, at the request of the participant, was to evaluate an innovative approach to (a) identify aversive auditory stimuli and (b) teach Steven, a 19-year-old male, appropriate responses in the presence of these stimuli without directly exposing him to the stimuli. The results suggest that the procedures effectively identified auditory stimuli for assessment and taught the participant to avoid the aversive stimuli appropriately (that is, in ways that were not dangerous). Through the implementation of this novel approach, assent and treatment effectiveness were enhanced for the autistic individual.

Communication Strategies in Negotiating Autonomy and Consent for Persons with Dementia (PWD)

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Communication Strategies in Negotiating Autonomy and Consent for Persons with Dementia (PWD)

Josephine Misaro, Jimoh J. Braimoh, Josephine Akuamoah Boateng

International Journal of Enhanced Research in Medicines & Dental Care (IJERMDC), August 2024

Open Access

Abstract

Objectives

The aim of this study is to explore the communication strategies deployed by administrators and staff in Assisted Living communities in negotiating sexual autonomy. Furthermore, the study investigates outcomes and effectiveness of such strategies in maintaining independence and freedom for Persons With Dementia (PWD)’s sexual and intimacy desires.

Method

This research relies on thematic qualitative design using interviews for collecting data. Semi-structured interviews with administrators and staff from 7 assisted living communities were analyzed based on how PWDs are communicated with and the outcomes.

Results

The findings revealed that some communication strategies, namely, Watchful Oversight/Oversurveillance, Redirecting, and Reporting ensure safety but often compromise residents’ autonomy and well-being. Formal policies on sexual rights and comprehensive staff training could foster a more supportive and inclusive environment.

Discussion

This research is important because it emphasizes the unique communication strategies that support the autonomy and dignity of PWD. It was evident from the findings that while the communication strategies of Oversight/Oversurveillance, Redirecting, and Reporting ensure safety and compliance, they often compromise residents’ autonomy and well-being. Balancing these strategies with empathy, formal policies on sexual rights, and comprehensive staff training is crucial for a supportive and respectful environment in AL communities.

Application of Standard Informed Consent Procedure Amongst Practicing Anesthetists in Tertiary Care Hospitals of Karachi

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Application of Standard Informed Consent Procedure Amongst Practicing Anesthetists in Tertiary Care Hospitals of Karachi
Asif Hassan, Mahendar Wanwari, Adeel ur Rehman, Tarique Aziz, Kashif Naeem, Fahad
Journal of Health and Rehabilitation Research, 4 August 2024
Abstract
Background
Informed consent is a critical component of anesthesia practice, ensuring patient autonomy and safety. However, variability in the application of consent procedures among anesthetists may impact patient understanding and care quality.
Objective
To evaluate the application of standard informed consent procedures among practicing anesthetists in tertiary care hospitals in Karachi.
Methods
A cross-sectional study was conducted from February 15, 2021, to August 14, 2021, across five tertiary care hospitals in Karachi. A total of 112 anesthetists, including consultants and residents with at least two years of experience, were recruited through consecutive sampling. Data were collected using a custom-made 16-item questionnaire. Responses were scored from 0 to 64, with scores ≥32 considered acceptable. Data were analyzed using SPSS version 25, employing descriptive statistics and Chi-square tests for comparisons.
Results
The mean age of participants was 34.04 ± 8.15 years, with 5.43 ± 5.9 years of experience. Compliance with consent standards was 99.11%, with 111 out of 112 participants scoring ≥32. No significant differences were observed across age, gender, or qualification (p > 0.05).
Conclusion
Anesthetists in Karachi showed high adherence to informed consent standards, though enhancements in risk disclosure are recommended to further improve patient care.

Pitfalls of the green transition: Towards a genuine understanding of the right to free, prior and informed consent of the Indigenous peoples

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Pitfalls of the green transition: Towards a genuine understanding of the right to free, prior and informed consent of the Indigenous peoples
Yuko Osakada
Polar Science, 6 September 2024
Abstract
This article examines the changes required to make the green transition more inclusive and sustainable from an international human rights perspective. Indigenous peoples have been challenging the ways in which this transition is taking place, using the phrase “green colonialism.” Although, in many countries, it has become common to consult Indigenous peoples to reach an agreement before licensing the establishment of green energy facilities, previous studies that dealt with the Sámi’s struggle against the green transition have revealed that asymmetric power relationship between Indigenous peoples, sovereign states and business enterprises contributed to disguised dialogues and/or agreements among them. Therefore, this article concludes that a genuine transition from the obligation to consult Indigenous peoples to their right to free, prior, and informed consent (FPIC) is crucial when establishing green energy facilities that might affect them. In doing so, this article emphasizes that the meaning of the right to FPIC for Indigenous peoples should be understood correctly from an international human rights perspective. In particular, it argues that the right to FPIC should be ensured not only before the project affecting Indigenous peoples is licensed, but also at all stages of implementing the project with participatory monitoring.

Electronic Surgical Consent Delivery Via Patient Portal to Improve Perioperative Efficiency

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Electronic Surgical Consent Delivery Via Patient Portal to Improve Perioperative Efficiency
Original Investigation
Karen Trang, Hannah C. Decker, Andrew Gonzalez, Logan Pierce, Amy M. Shui, Genevieve B. Melton-Meaux, Elizabeth C. Wick
JAMA Surgery, 11 September 2024
Abstract
Importance
Many health systems use electronic consent (eConsent) for surgery, but few have used surgical consent functionality in the patient portal (PP). Incorporating the PP into the consent process could potentially improve efficiency by letting patients independently review and sign their eConsent before the day of surgery.
Objective
To evaluate the association of eConsent delivery via the PP with operational efficiency and patient engagement.
Design, Setting, and Participants
This mixed-methods study consisted of a retrospective quantitative analysis (February 8 to August 8, 2023) and a qualitative analysis of semistructured patient interviews (December 1, 2023, to January 31, 2024) of adult surgical patients in a health system that implemented surgical eConsent. Statistical analysis was performed between September 1, 2023, and June 6, 2024.
Main Outcomes and Measures
Patient demographics, efficiency metrics (first-start case delays), and PP access logs were analyzed from electronic health records. Qualitative outcomes included thematic analysis from semistructured patient interviews.
Results
In the PP-eligible cohort of 7672 unique patients, 8478 surgical eConsents were generated (median [IQR] age, 58 [43-70] years; 4611 [54.4%] women), of which 5318 (62.7%) were signed on hospital iPads and 3160 (37.3%) through the PP. For all adult patients who signed an eConsent using the PP, patients waited a median (IQR) of 105 (17-528) minutes to view their eConsent after it was electronically pushed to their PP. eConsents signed on the same day of surgery were associated with more first-start delays (odds ratio, 1.59; 95% CI, 1.37-1.83; P < .001). Themes that emerged from patient interviews included having a favorable experience with the PP, openness to eConsent, skimming the consent form, and the importance of the discussion with the surgeon.
Conclusions and Relevance
These findings suggest that eConsent incorporating PP functionality may reduce surgical delays and staff burden by allowing patients to review and sign before the day of surgery. Most patients spent minimal time engaging with their consent form, emphasizing the importance of surgeon-patient trust and an informed consent discussion. Additional studies are needed to understand patient perceptions of eConsent, PP, and barriers to increased uptake.

Systematic Review and Meta-Analysis of Interactive multimedia Interventions used in the Informed Consent Process

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Systematic Review and Meta-Analysis of Interactive multimedia Interventions used in the Informed Consent Process
Joshua Michael Clements, Jake Simon Clements, Mike Clarke, Stephen Kirk
British Journal of Surgery, 9 September 2024
Abstract
Aim
The use of digital technology to improve the informed consent process has increased over the past decade. A wide range of multimedia modalities are now available. This review aimed to assess the impact of interactive multimedia interventions on the informed consent process.
Methods
This was a subgroup analysis of a larger systematic review and meta-analysis conducted in accordance with a predefined protocol registered on PROSPERO (CRD42023380406). Five databases were searched using pre-defined search criterion in December 2022 for randomised trials of interactive multimedia interventions designed to improve the informed consent process. Adults >18 years undergoing invasive interventions with the capacity to consent were included. The Cochrane Risk of Bias (RoB) tool was used to assess study quality. Standardised mean difference for continuous variables and risk ratios for dichotomous variables were used to assess effect. Meta-analyses were performed in RevMan5.
Results
21 studies (22 interventions arms) with 2090 participants were included. All studies involved patients undergoing informed consent in an elective hospital setting for various surgical, cardiological and radiological procedures. Statistically significant improvement in immediate (SMD 0.40, 95% CI 0.18 to 0.62, I2=55%) and short-term knowledge (SMD 0.47, 95% CI 0.16 to 0.79, I2=45%) were demonstrated. No statistically significant differences were found for long term knowledge, generalised anxiety, satisfaction with the consent process or length of consultation.
Conclusions
Interactive multimedia interventions improve immediate and short-term knowledge in patients undergoing invasive interventions and could be considered as an adjunct to enhance patient knowledge during the informed consent process.

How Making Consent Procedures More Interactive can Improve Informed Consent: An Experimental Study and Replication

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How Making Consent Procedures More Interactive can Improve Informed Consent: An Experimental Study and Replication
Research Article
Marije aan het Rot, Ineke Wessel
Journal of Empirical Research on Human Research Ethics, 28 August 2024
Open Access
Abstract
Prospective research participants do not always retain information provided during consent procedures. This may be relatively common in online research and is considered particularly problematic when the research carries risks. Clinical psychology studies using the trauma film paradigm, which aims to elicit an emotional response, provide an example. In the two studies presented here, 112–126 participants were informed they would be taking part in an online study using a variant of this paradigm. The information was provided across five digital pages using either a standard or an interactive format. In both studies, compared to the control condition, participants in the interactive condition showed more retention of information. However, this was only found for information about which they had been previously asked via the interactive format. Therefore, the impact of adding interactivity to digital study information was limited. True informed consent for an online study may require additional measures.

Global considerations for informed consent with shared decision-making in the digital age

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Global considerations for informed consent with shared decision-making in the digital age
Education
Edward Robert St John, Connor James Stewart Moore, Raghu Ram Pillarisetti, Erica Sarah Spatz
BMJ Evidence-Based Medicine, 20 September 2024
Background
Shared decision-making (SDM) is increasingly recognised as fundamental to patient-centred care and enabling patients to make voluntary, informed decisions about their health. SDM is the process whereby patients and clinicians come together to share their expertise. The patient acts as an expert of themselves, understanding their own preferences and their attitudes to risk. The clinician is an expert on the medical knowledge and scientific evidence. Together, treatment options should be explored, arriving at a treatment decision that is right for the patient and supported by the clinician. When dealing with invasive or high-risk procedures (eg, operations, chemotherapy, radiotherapy, immunotherapy), once the treatment decision has been made, the conversation turns to informed consent. This is the process of communicating and agreeing to the potential risks and benefits of the procedure, while acknowledging that there are alternative treatment options that have not been chosen. Though informed consent should be the culmination of SDM, alone it does not encapsulate the entire process. There is a distinction between decision-making and consent and this should ideally be accompanied by a period for reflection. Despite advances in SDM, the subsequent informed consent process has remained stagnant, often failing to meet ethical or legal standards of supporting meaningful patient autonomy.

Multidisciplinary Team Discussions and the Inclusion of Individualized Patient Factors May Improve Informed Consent in Sports Medicine

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Multidisciplinary Team Discussions and the Inclusion of Individualized Patient Factors May Improve Informed Consent in Sports Medicine
John Grossi, Lexi Garber, Brandon Klein, Luke Bartlett, Adam Bitterman, Randy Cohn, Nicholas Sgaglione
Arthroscopy, Sports Medicine, and Rehabilitation, 20 September 2024
Open Access
Abstract
Informed consent allows for the maintenance of patient autonomy and is essential in establishing trusting relationships between physicians and their patients. This process involves thorough discussion of the risks and alternatives, as well as the short- and long-term outcomes, of proposed treatment options. Inadequacies with informed consent can lead to inferior patient outcomes and may be subject to severe legal consequences. Individualized discussions are warranted to address the questions of these patients, whether it be the high-level athlete or the weekend warrior. This review highlights factors, identifies barriers, and proposes potential solutions to improve informed consent within orthopaedic sports medicine.

Developing a computer based standardised consent form for laparoscopic cholecystectomy

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Developing a computer based standardised consent form for laparoscopic cholecystectomy
Charles Carey, Stuart James, Gemma Richardson, Shameen Jaunoo
British Journal of Surgery, 9 September 2024
Abstract
Aims
Laparoscopic cholecystectomy is a common general surgical procedure with approximately 65,000 procedures performed per year. The consent process is imperative as serious life changing and life-threatening risks must be discussed with the patient before surgery. At our trust [East Sussex Healthcare NHS Trust], this is currently performed with a generic consent proforma which is filled in during each consent process. We aimed to streamline this process for clinicians and ensure all risks were discussed. Further, we aimed to ensure the process was more medico-legally sound with increased legibility by removing the handwritten aspect and ensure concordance with GMC and RCS informed consent guidance.
Methods
We produced a standard computerised consent form for laparoscopic cholecystectomy. This included a diagram to aid patient explanation and sections where all the key risks of the procedure could be checked off once discussed.
Results
The consent form has proven popular with clinicians and has streamlined the consent process. It has ensured legibility of the consent form for all involved and is therefore preferable from a medico-legal perspective. It also ensures consistency for all patients undergoing the same consent process.
Conclusions
Standardising the consent process using this procedure specific form has helped clinicians cover all the necessary areas with patients before surgery and should be considered for other common operations. Producing the consent form has also been an excellent educational opportunity for trainees, who can now consider all risks associated with laparoscopic cholecystectomy using a single document.