Analysis and mapping the research landscape on patient-centred care in the context of chronic disease management.

RATIONALE: Patient-centred care has emerged as a transformative approach in managing chronic diseases, aiming to actively involve patients in their healthcare decisions. AIMS AND OBJECTIVES: This study was conducted to analyse and map the research landscape on patient-centred care in the context of chronic disease management. METHODS: This study used Scopus to retrieve the relevant articles. The analysis focused on the growth pattern, highly cited articles, randomised clinical trials, patients and providers perspectives, facilitators and barriers, frequent author keywords, emerging topics, and prolific countries and journals in the field. RESULTS: In total, 926 research articles met the inclusion criteria. There was a notable increase in the number of publications over time. Cancer had the highest number of articles (n = 379, 40.9%), followed by diabetes mellitus, and mental health and psychiatric conditions. Studies on patient-centred care in diabetic patients received the highest number of citations. The results identified 52 randomised controlled trials that covered four major themes: patient-centred care for diabetes management, shared decision-making in mental health and primary care, shared decision-making in cancer care, and economic evaluation and cost-effectiveness. The study identified 51 studies that examined the impact of tools such as computer-based systems, decision aids, smartphone apps, and online tools to improve patient-centred outcomes. A map of author keywords showed that renal dialysis, HIV, and atrial fibrillation were the most recent topics in the field. Researchers from the United States contributed to more than half of the retrieved publications. The top active journals included "Patient Education and Counselling" and "Health Expectations". CONCLUSION: This study provides valuable insights into the research landscape of patient-centred care within the context of chronic diseases. The current study provided a comprehensive overview of the research landscape on patient-centred care, which can empower patients by raising their awareness about clinical experiences and outcomes.

Informal caregivers' experiences of support from a tailored primary healthcare unit for older adults - A focus group study.

BACKGROUND: Informal caregivers are an essential part of health and social care systems worldwide. As such, they may need professional support. AIM: The aim of this study was to describe informal caregivers' experiences and need for support from a tailored primary health care (PHC) unit. METHODS: This is a qualitative descriptive study using data collected from five semi-structured focus group discussions with a purposeful sample of 16 informal caregivers of older relatives. Respondents were recruited from a tailored PHC unit for people aged 75 years or older in a region in central Sweden. The data were analysed by qualitative content analysis with an abductive approach, based on the principles of the patient- and family-centred care framework. RESULTS: The overarching theme was 'Striving for partnership'. The findings indicate that informal caregivers to some extent felt supported by the healthcare professionals. However, the caregivers expressed a need to be further acknowledged by the professionals in order to participate in the care of their older relatives in the way they wanted. Moreover, insufficient information regarding the older adult's health condition and care provided by the professionals had a negative impact on the caregiver's participation in care. CONCLUSIONS: Informal caregivers have unmet needs for support and strive for a partnership with the PHC professionals. PHC professionals should be more attentive and invite informal caregivers to participate in the care of the older adult in order to meet their support needs and build an equal partnership. The patient- and family-centred care framework may be of guidance when providing care for older adults in a PHC context.

How Patient-Centred Are Inhaler Device Choices? A Survey of Canadian Prescribers.

Background: The choice of inhaler device type can play a crucial role in managing asthma and chronic obstructive pulmonary disease (COPD). With various devices available, differences in choice and application may lead to confusion for both prescribers and patients. Furthermore, improper use of a device may lead to suboptimal or inadequate treatment. Objectives: The primary objective was to identify factors that prescribers consider when selecting an inhaler device for a patient. The secondary objective was to evaluate the rankings of these factors, including identification of which factors had greater importance and frequency for prescribers' choice of inhaler device for patients. Methods: A 10-question online survey was developed and distributed in late 2021 to prescribers (physicians, nurse practitioners, and pharmacists) in western Canada in an outpatient setting. Prescribers were asked to use their own words to describe the factors they considered important and were then asked to rank the stated factors in order of importance for 2 scenarios: an 83-year-old woman with COPD and a 21-year-old man with asthma. The results were examined qualitatively and quantitatively. Recurring themes were identified, and each response was categorized on the basis of its corresponding theme. Results: In all, 82 respondents completed the survey (yielding a total of 164 responses across the 2 scenarios). Overall, prescriber experience (84/164, 51%), cost (84/164, 51%), patient ease of use (59/164, 36%), and other patient considerations (49/164, 30%) were the factors most frequently mentioned. The prescriber's experience was most often mentioned as a factor for scenario 1 (COPD), whereas cost was most often mentioned for scenario 2 (asthma). In both scenarios, prescriber experience was the highest-ranked factor. Conclusions: When determining the appropriate type of inhaler device, respondents frequently prioritized their own experience, as well as cost and ease of use. However, many respondents ranked prescriber experience higher than all other factors.

Contexte: Le choix du type d'inhalateur peut jouer un rôle crucial dans la gestion de l'asthme et de la maladie pulmonaire obstructive chronique (MPOC). Étant donné la diversité des dispositifs disponibles, les différences de choix et d'application peuvent prêter à confusion tant pour les prescripteurs que pour les patients. De plus, la mauvaise utilisation d'un appareil peut conduire à un traitement sous-optimal ou inadéquat. Objectifs: L'objectif principal consistait à identifier les facteurs pris en compte par les prescripteurs lors de la sélection de l'inhalateur pour un patient. L'objectif secondaire consistait à évaluer le classement de ces facteurs, notamment l'identification des facteurs les plus importants et des inhalateurs les plus fréquemment choisis par les prescripteurs. Méthodes: Un sondage en ligne de 10 questions a été préparé et distribué fin 2021 aux prescripteurs (médecins, infirmières praticiennes et pharmaciens) de l'ouest du Canada en milieu ambulatoire. Les prescripteurs devaient, dans leurs propres mots, décrire les facteurs qui leur semblaient importants avant de les classer par ordre d'importance dans le cadre de deux scénarios : une femme de 83 ans atteinte de MPOC et un homme de 21 ans avec de l'asthme. Les résultats ont fait l'objet d'un examen qualitatif et quantitatif. Des thèmes récurrents ont été identifiés et chaque réponse a été catégorisée en fonction du thème correspondant. Résultats: Au total, 82 répondants ont répondu au sondage (total de 164 réponses dans les 2 scénarios). Dans l'ensemble, l'expérience du prescripteur (84/164, 51 %), le coût (84/164, 51 %), la facilité d'utilisation pour le patient (59/164, 36 %) et d'autres considérations en rapport avec le patient (49/164, 30 %) étaient les facteurs déterminants les plus fréquemment mentionnés. Pour le scénario 1 (MPOC), l'expérience du prescripteur était le facteur le plus souvent mentionné, alors que le coût l'était pour le scénario 2 (asthme). Dans les deux scénarios, l'expérience du prescripteur était le facteur le plus important. Conclusions: Lors de la détermination du type d'inhalateur approprié, les répondants ont souvent donné la priorité à leur expérience personnelle, ainsi qu'au coût et à la facilité d'utilisation. Cependant, de nombreux répondants ont accordé une note plus élevée à l'expérience du prescripteur qu'à d'autres facteurs.

Medicine in the marketplace: clinician and patient views on commercial influences on assisted reproductive technology.

RESEARCH QUESTION: What are the views and experiences of patient and expert stakeholders on the positive and negative impacts of commercial influences on the provision of assisted reproductive technology (ART) services, and what are their suggestions for governance reforms? DESIGN: Semi-structured interviews were conducted with 31 ART industry experts from across Australia and New Zealand and 25 patients undergoing ART from metropolitan and regional Australia, between September 2020 and September 2021. Data were analysed using thematic analysis. RESULTS: Expert and patient participants considered that commercial forces influence the provision of ART in a number of positive ways - increasing sustainability, ensuring consistency in standards and providing patients with greater choice. Participants also considered commercial forces to have a number of negative impacts, including increased costs to government and patients; the excessive use of interventions that lack sufficient evidence to be considered part of standard care; inadequately informed consent (particularly with regard to financial information); and threats to patient-provider relationships and patient-centred care. Participants varied in whether they believed that professional self-regulation is sufficient. While recognizing the benefits of commercial investment in healthcare, many considered that regulatory reforms, as well as organizational cultural initiatives, are needed as means to ensure the primacy of patient well-being. CONCLUSIONS: The views expressed in this study should be systematically and critically examined to derive insights into how best to govern ART. These insights may also inform the design and delivery of other types of healthcare that are provided in the private sector.

Trans-Inclusive Communication and Self-Perceived Barriers to It, as Reported by Doctors-A Mixed-Methods Survey in Germany.

The majority of transgender and gender-nonconforming people (TGNC) report negative experiences with doctors in the healthcare system. As there is little knowledge about the communication behaviour of doctors towards TGNC, this survey aimed to assess the self-reported trans-inclusive communication of doctors and their willingness to communicate trans-inclusively, as well as their self-perceived barriers to it. A mixed-methods survey was applied for this. Firstly, we measured self-reported trans-inclusive communication behaviour based on the CommTrans questionnaire. Based on this, the overall willingness, as well as self-perceived barriers (qualitative) to communication, were assessed. In total, N = 57 doctors took part in the survey. Most participants reported not introducing themselves using pronouns (79.4%). Of these, 61.4% said that they would not be able to do this in the future either. Perceived barriers were classified into the following eight categories: necessity, sample-dependency, habit, structural barriers in practice, uncertainties in dealing with the topic, limits of patient-centredness, gender as a binary concept, and transphobia. In summary, doctors in Germany show different degrees of trans-inclusive communication. It is likely that this has a negative effect on TGNC, their health and access to the healthcare system.

Type 1 diabetes care delivery in Yaoundé, Cameroon: Social and political representations.

BACKGROUND:  Increasing chronic diseases challenges the health systems of low- and middle-income countries, including Cameroon. Type 1 diabetes (T1D), among the most common chronic diseases in children, poses particular care delivery challenges. AIM:  We examined social representations of patients' roles and implementation of T1D care among political decision-makers, healthcare providers and patients within families. SETTING:  The study was conducted in Yaoundé, Cameroon. METHODS:  Eighty-two individuals were included in the study. The authors conducted semi-structured interviews with policy makers (n = 5), healthcare professionals (n = 7) and patients 'parents (n = 20). Questionnaires were administered to paediatric patients with T1D (n = 50). The authors also observed care delivery at a referral hospital and at a T1D-focused non-governmental organisation over 15 days. Data were analysed using thematic content analysis and descriptive statistics. RESULTS:  Cameroonian health policy portrays patients with T1D as passive recipients of care. While many practitioners recognised the complex social and economic determinants of adherence to T1D care, in practice interactions focused on specific biomedical issues and offered brief guidance. Cultural barriers and policy implementation challenges prevent patients and their families from being fully active participants in care. Parents and children prefer an ongoing relationship with a single clinician and interactions with other patients and families. CONCLUSION:  Patients and families mobilise experience and lay knowledge to complement biomedical knowledge, but top-down policy and clinical practice limit their active engagement in T1D care.Contribution: Children with T1D and their families, policy makers, healthcare professionals, and civil society have new opportunities to contribute to person-centred care, as advocated by the Sustainable Development Goals.

Untangling the perception of value in value-based healthcare - an interview study.

PURPOSE: Value-based health care (VBHC) argues that health-care needs to re-focus to maximise value creation, defining value as the quota when dividing the outcomes important for the patient, by the cost for health care to deliver such outcomes. This study aims to explore the perception of value among different stakeholders involved in the process of implementing VBHC at a Swedish hospital to support leaders to be more efficient and effective when developing health care. DESIGN/METHODOLOGY/APPROACH: Participants comprised 19 clinicians and non-clinicians involved in the implementation of VBHC. Semi-structured interviews were conducted and content analysis was performed. FINDINGS: The clinicians described value as a dynamic concept, dependent on the patient and the clinical setting, stating that improving outcomes was more important than containing costs. The value for non-clinicians appeared more driven by the interplay between the outcome and the cost. Non-clinicians related VBHC to a strategic framework for governance or for monitoring different continuous improvement processes, while clinicians appreciated VBHC, as they perceived its introduction as an opportunity to focus more on outcomes for patients and less on cost containment. ORIGINALITY/VALUE: There is variation in how clinicians and non-clinicians perceive the key concept of value when implementing VBHC. Clinicians focus on increasing treatment efficacy and improving medical outcomes but have a limited focus on cost and what patients consider most valuable. If the concept of value is defined primarily by clinicians' own assumptions, there is a clear risk that the foundational premise of VBHC, to understand what outcomes patients value in their specific situation in relation to the cost to produce such outcome, will fail. Health-care leaders need to ensure that patients and the non-clinicians' perception of value, is integrated with the clinical perception, if VBHC is to deliver on its promise.

Ensuring safe and equitable discharge: a quality improvement initiative for individuals with hypertensive disorders of pregnancy.

OBJECTIVE: To improve timely and equitable access to postpartum blood pressure (BP) monitoring in individuals with hypertensive disorders of pregnancy (HDP). METHODS: A quality improvement initiative was implemented at a large academic medical centre in the USA for postpartum individuals with HDP. The primary aim was to increase completed BP checks within 7 days of hospital discharge from 40% to 70% in people with HDP in 6 months. Secondary aims included improving rates of scheduled visits, completed visits within 3 days for severe HDP and unattended visits. The balancing measure was readmission rate. Statistical process control charts were used, and data were stratified by race and ethnicity. Direct feedback from birthing individuals was obtained through phone interviews with a focus on black birthing people after a racial disparity was noted in unattended visits. RESULTS: Statistically significant improvements were noted across all measures. Completed and scheduled visits within 7 days of discharge improved from 40% to 76% and 61% to 90%, respectively. Completed visits within 3 days for individuals with severe HDP improved from 9% to 49%. The unattended visit rate was 26% at baseline with non-Hispanic black individuals 2.3 times more likely to experience an unattended visit than non-Hispanic white counterparts. The unattended visit rate decreased to 15% overall with an elimination of disparity. A need for BP devices at discharge and enhanced education for black individuals was identified through patient feedback. CONCLUSION: Timely follow-up of postpartum individuals with HDP is challenging and requires modification to our care delivery. A hospital-level quality improvement initiative using birthing individual and frontline feedback is illustrated to improve equitable, person-centred care.

Insights and recommendations for working collaboratively and improving care in Alzheimer's disease: Learnings from the Finding Alzheimer's Solutions Together (F.A.S.T.) Council.

BACKGROUND: Collaborations between patient organisations (POs) and the pharmaceutical industry can help identify and address the unmet needs of people living with a disease. In Alzheimer's disease (AD), the scale and complexity of the current unmet needs call for a broad and cross-sectoral collaboration, including people living with Alzheimer's (PLWA), their care partners and the wider research community. OBJECTIVE: This study aimed to describe learnings from the Finding Alzheimer's Solutions Together (F.A.S.T.) Council, a collaboration between POs and Roche, convened to better understand the unmet needs of PLWA and their care partners. RESULTS: 1. Learnings from the collaboration, including clarifying objectives and members' expectations upfront, and establishing a set of guiding values and engagement principles. 2. Insights and recommendations for improving care in AD, including a wide range of unmet needs and potential solutions, systematically captured throughout the PLWA journey. These have resulted in several published reports and other outcomes, including (1) 'Portraits of care', highlighting the role of care partners, and the impact of coronavirus disease 2019 on care; (2) Clinical trial guidebook, recommending how PLWA and care partner experience can be incorporated into trial design; (3) 'Commitments Catalogue', highlighting progress by governmental organisations in achieving their commitments; and (4) a report to guide policy on improving diversity, equity and inclusion in clinical trials. CONCLUSIONS: Close collaboration between POs and the pharmaceutical industry in AD can enable effective research, in which PLWA and care partners are engaged as 'experts through experience' to help identify key unmet needs and co-create solutions with the wider AD research community. This paper and the work undertaken by the F.A.S.T. Council may act as a blueprint for meaningful collaboration between POs and the pharmaceutical industry. PATIENT OR PUBLIC CONTRIBUTION: The paper reports the collaboration between POs, the F.A.S.T. Council and Roche to progress towards a future in which PLWA can live fulfilling lives with their disease managed well. CLINICAL TRIAL REGISTRATION: Not applicable.

Let the records speak: an exploration of rehabilitation services offered in primary healthcare, Johannesburg metropolitan district.

BACKGROUND: Primary healthcare in South Africa aims to transform the national health system by emphasising community-based care and preventive strategies. However, rehabilitation services, particularly for individuals with disabilities and chronic non-communicable diseases, are often overlooked in primary healthcare. This study aimed to investigate the provision of primary healthcare rehabilitation services in the Johannesburg Metropolitan District by exploring client sociodemographics and variations in services provided by rehabilitation professionals. METHODS: A retrospective review of clinic rehabilitation records from 2011 to 2020 was conducted at nine provincially funded community health centres (CHCs) offering rehabilitation services. Stratified sampling facilitated record selection based on rehabilitation service type and year. A specifically designed data extraction tool captured demographics, disabilities, rehabilitation received, and referral sources. Descriptive analysis used means, standard deviations, and frequencies. RESULTS: The findings show a diverse client population with a wide age range, with a significant proportion falling into the < 5 years and 30-49 years age groups. Neuromusculoskeletal and movement-related disabilities were most prevalent, affecting approximately two-thirds of clients. Referral sources were often undocumented, and inconsistent discharge information with no record of patient follow up, highlighted the need for improved documentation practices. Clinic visits were the primary service delivery mode, followed by limited home visits and outreach services. Occupational therapy and physiotherapy were the most used services. Speech and language therapy services were underused, and some CHCs lacked audiology services. There were variations in the number of individual and group sessions provided by the different rehabilitation services, and there were age- and disability-specific differences in service use. CONCLUSION: This study offers insights into rehabilitation service provision in the Johannesburg Metropolitan District and enhances our understanding of rehabilitation services in primary healthcare settings. It underscores the importance of a multidisciplinary rehabilitation team to address diverse rehabilitation needs, improving documentation and discharge practices, expanding service delivery models, and reducing disparities in service use. The findings inform strategies for optimising service delivery, workforce, resource allocation, and intersectoral collaboration to ultimately enhance the quality and accessibility of integrated rehabilitation services.

Facing the digital frontier: exploring user acceptance of electronic health records in an urban, rural and remote setting in the Philippines.

OBJECTIVES: A thorough understanding of user needs and behavioural intent-to-use underpins the development of a responsive health information system. This study aimed to examine health workers' intent-to-use an electronic health record (EHR) system in an urban, rural and remote setting in the Philippines. METHODS: Following the Unified Theory of Acceptance and Use of Technology framework, user acceptance and the factors influencing intent-to-use the EHR were examined through a self-administered questionnaire. A total of 128 EHR users, comprising physicians, nurses, midwives, barangay health workers and administrative staff, were surveyed. Median scores for each domain were compared across the sites using the Kruskal-Wallis test. Ridge regression analysis was used to identify factors associated with behavioural intent-to-use. RESULTS: Over 94% of users across all sites reported their intent-to-use the EHR in the near future. Of the seven predictor variables examined, only self-efficacy was found to be significantly associated with behavioural intent-to-use. Intent-to-use the EHR increased by 31% (p=0.007) for each unit increase in self-efficacy score among participants. DISCUSSION: Acceptance was high across the three sites, with self-efficacy being a predictor of intent-to-use the technology. This suggests that users are more likely to adopt an EHR if they believe they have the capacity to successfully navigate the technology and perform their designated tasks with it. CONCLUSION: Co-producing interventions with primary care providers is crucial in sustaining EHR systems. Rather than developing a technology based on the surveillance needs of policymakers, an EHR developed from the grassroots was shown to be well-received by end-users.

Advances in Human-Centered Care to Address Contemporary Unmet Needs in Chronic Dialysis.

Advances in the treatment of kidney failure with chronic dialysis have stagnated over the past three decades, with over 50% of patients still managed by conventional in-hospital haemodialysis. In parallel, the demands of chronic dialysis medical care have changed and evolved due to a growing population that has higher frailty and multimorbidity. Thus, the gap between the needs of kidney failure patients and the healthcare capability to provide effective overall management has widened. To address this problem, healthcare policy has increasingly aligned towards a human-centred approach. The paradigm shift of human-centred approach places patients at the forefront of decision-making processes, ensuring that specific needs are understood and prioritised. Integration of human-centred approaches with patient care has been shown to improve satisfaction and quality of life. The aim of this narrative is to evaluate the current clinical challenges for managing kidney failure for dialysis providers; summarise current experiences and unmet needs of chronic dialysis patients; and finally emphasise how human-centred care has advanced chronic dialysis care. Specific incremental advances include implementation of renal supportive care; home-assisted dialysis; hybrid dialysis; refinements to dialysis methods; whereas emerging advances include portable and wearable dialysis devices and the potential for the integration of artificial intelligence in clinical practice.

Implementing a ward-level intervention to improve nursing handover communication with a focus on bedside handover-A qualitative study.

AIM: To improve the effectiveness of nursing clinical handover through a qualitative, tailored communication intervention. DESIGN: A multisite before and after intervention using qualitative ethnography combined with discourse analysis of nursing handover interactions. METHODS: We implemented a tailored ward-based intervention to redesign nursing handover practice with co-constructed recommendations for organisational and cultural change on seven wards across three affiliated metropolitan hospitals between February 2020 and November 2022. The intervention was informed by pre-implementation interviews and focus groups with nursing, medical and allied health staff and patients (n = 151) and observed and/or audio-recorded handover events (n = 233). Post-intervention we conducted interviews and focus groups (n = 79) and observed and/or audio-recorded handover events (n = 129) to qualitatively evaluate impact. RESULTS: Our translational approach resulted in substantial changes post-intervention. Nurses conducted more shift-to-shift handovers at the bedside, with greater patient interaction and better structured and more comprehensive information transfer, supported by revised handover documentation. Redesigned group handovers were focused and efficient, communicating critical patient information. CONCLUSION: Contextualised training combined with changes to ward-level systemic factors impeding communication results in improved nursing handovers. Practice change requires strong executive leadership and project governance, combined with effective ward-level leadership, collaboration and mentoring. The speed and degree of change post-intervention demonstrates the power of interdisciplinary collaborative research between hospital executive, ward leadership and communication specialists. RELEVANCE TO CLINICAL PRACTICE: Nurses are more likely to conduct efficient group handovers and informative, patient-centred bedside handovers in line with policy when they understand the value of handover and have practical strategies to support communication. Communication training should be combined with broader ward-level changes to handover practice tailored to the ward context. A multilevel approach results in more effective practice change. REPORTING METHOD: We adhered to the COREQ guidelines. PATIENT OR PUBLIC CONTRIBUTION: We interviewed patients on study wards pre and post intervention.

Family perspectives on provider conversations about housing needs for children with medical complexity.

BACKGROUND: Children with medical complexity (CMC) have unique, and often unmet, housing needs that place them at risk for housing insecurity and poor health outcomes. Yet, little is known about how families with CMC discuss their housing needs with healthcare providers. We sought to understand: (1) how housing is currently discussed between CMC caregivers and healthcare providers, and (2) how CMC caregivers want such conversations to occur. METHODS: From August to November 2020, we conducted semi-structured interviews with parents/guardians of CMC (<26 years old) in Maryland as part of a larger study to understand their housing experience. Four questions on communication with providers about housing were developed a priori and included in this analysis. Qualitative content analysis was applied to interview transcripts. RESULTS: Among 31 completed interviews, most participants were female (90%), lived in single-family homes (68%) and were from a mix of neighbourhood types (urban 19%, suburban 58%, rural 22%). Their children ranged in age from 6 months to 22 years, had a mix of insurance types (public 65%, private 29%, both 6%) and nearly all required medical equipment or technology. Four themes emerged: (1) Current housing conversations are rare and superficial, (2) Ideal housing conversations would result in thoughtful care plans and concrete supports, (3) Frequency and initiation of housing conversations are best tailored to family preferences and (4) Value of housing conversations are limited by lack of provider knowledge and time. CONCLUSIONS: Conversations about housing needs for CMC happen in limited ways with healthcare providers, despite a desire on the part of their caregivers. Such conversations can give meaningful insights into the family's specific housing challenges, allowing providers to appropriately tailor care plans and referrals. Future work is needed to capture provider perspectives, design CMC-specific housing screeners and develop interdisciplinary referral strategies.

Public perception of participation in low-risk clinical trials in critical care using waived consent: a Canadian national survey.

PURPOSE: The acceptability of waiver of consent for participation in clinical research in intensive care unit (ICU) settings is uncertain. We sought to survey the Canadian public to assess levels of support, comfort, and acceptability for waived consent for low-risk clinical trials. METHODS: We performed a prospective cross-sectional survey of the Canadian public aged 18 yr or older. The survey was conducted by Ipsos between 19 and 23 November 2020. The survey content was derived from a literature review and in consultation with a patient and family partnership committee. The survey focused on attitudes and beliefs on waived consent for participation in low-risk clinical trials in ICU settings. The survey contained 35 items focused on sociodemographics, general health status, participation in medical research, and levels of support and comfort with research and with waived consent. The survey used a case study of a low-risk clinical trial intervention in ICU patients. Analysis was descriptive. RESULTS: We included 2,000 participants, 38% of whom reported experience with ICU and 16% with medical research. Participation in medical research was more common among those with postsecondary education, those with chronic disease, and those who were employed in health care. Most (80%) would support a model of waived consent for low-risk clinical trials, citing medical benefits (36%) and low perceived risk (34%). Most (77%) were comfortable with personally participating in a low-risk clinical trial. Most (80%) believed waived consent approaches were acceptable. Half (52%) believed the waived consent process should provide information about the research and include the option of opting out. When asked whether participants should always give full informed consent, regardless of the practicality or level of risk, 74% and 72% agreed, respectively. CONCLUSIONS: There is public support for models of waived consent for participation in low-risk pragmatic clinical trials in ICU settings in Canada; however, this is not universal. This information can inform and guide education, ethics, policy, and legal discussion on consent models.

RéSUMé: OBJECTIF: L'acceptabilité de la renonciation au consentement pour la participation à la recherche clinique à l'unité de soins intensifs (USI) est incertaine. Nous avons cherché à sonder la population canadienne afin d'évaluer les niveaux de soutien, de confort et d'acceptabilité de la renonciation au consentement pour les études cliniques à faible risque. MéTHODE: Nous avons réalisé un sondage transversal prospectif auprès de la population canadienne âgée de 18 ans et plus. Le sondage a été réalisé par Ipsos entre le 19 et le 23 novembre 2020. Le contenu du sondage a été élaboré à partir d'une revue de la littérature et en consultation avec un comité de partenariat composé de patient·es et de familles. Le sondage portait sur les attitudes et les croyances à l'égard de la renonciation au consentement pour participer à des études cliniques à faible risque dans les unités de soins intensifs. Le sondage comportait 35 questions axées sur les données sociodémographiques, l'état de santé général, la participation à la recherche médicale et les niveaux de soutien et de confort à l'égard de la recherche et de la renonciation au consentement. Le sondage s'est appuyé sur une étude de cas d'une intervention d'étude clinique à faible risque chez des patient·es des soins intensifs. L'analyse était descriptive. RéSULTATS: Nous avons inclus 2000 personnes, dont 38 % ont déclaré avoir eu des expériences en soins intensifs et 16 % en recherche médicale. La participation à la recherche médicale était plus fréquente chez les personnes ayant fait des études postsecondaires, celles atteintes de maladies chroniques et celles qui travaillaient dans le domaine des soins de santé. La plupart d'entre elles (80 %) appuieraient un modèle de renonciation au consentement pour les études cliniques à faible risque, citant les avantages médicaux (36 %) et le faible risque perçu (34 %). La majorité des personnes répondantes (77 %) étaient à l'aise à l'idée de participer personnellement à une étude clinique à faible risque. La plupart d'entre elles (80 %) croyaient que les approches fondées sur la renonciation au consentement étaient acceptables. La moitié (52 %) estimaient que le processus de renonciation au consentement devrait fournir des renseignements sur la recherche et inclure la possibilité de se retirer. Lorsqu'on leur a demandé si les participant·es devraient toujours donner un consentement éclairé complet, quel que soit l'aspect pratique ou le niveau de risque, 74 % et 72 % ont répondu par l'affirmative, respectivement. CONCLUSION: Il y a un appui public pour les modèles de renonciation au consentement quant à la participation à des études cliniques pragmatiques à faible risque dans les unités de soins intensifs au Canada; cet appui n'est toutefois pas universel. Ces renseignements peuvent éclairer et orienter l'éducation, l'éthique, les politiques et les discussions juridiques sur les modèles de consentement.

Experience-based Modifications of the Bed Band ReAlised through Co-dEsign (EMBRACE).

BACKGROUND: Upper body limitations are a common disability in neurological conditions including stroke and multiple sclerosis. Care of patients with upper body limitations while in bed involves positioning techniques to maximise comfort and independence. The Bed Band is a nurse-led innovation to support people with limited mobility to maintain a comfortable position in bed, thereby promoting comfort and independence with activities of daily living. AIM: To co-design and implement adaptations to the Bed Band prototype with recommendations for user instructions towards enhanced product design and future development. METHODS: A co-design approach involving collaboration between academic and industry partners. Expert stakeholders provided feedback on the Bed Band via an online focus group before healthy volunteers tested the product in a healthcare simulation suite. Data were thematically analysed and findings sense checked by expert stakeholders who then prioritised adaptations to the Bed Band using a modified Delphi technique. RESULTS: Three themes resulted from the analysis: (1) reaction to the Bed Band; (2) potential risks and mitigation; and (3) product adaptations. Simplicity was a strength of the innovation which easily enabled positional support. Adaptations to the Bed Band informed the development of an enhanced prototype for testing in future studies. CONCLUSION: Co-design of the Bed Band prototype involving experts and healthy volunteers enabled early identification of potential risks with recommendations to mitigate them and priority adaptations. Further studies are required in hospital patients and community populations with upper mobility issues to determine the efficacy of the Bed Band and optimal duration of use.

Physicians, know thy patient.

Person-centered care is presently the standard healthcare model, which emphases shared clinical decision-making, patient autonomy and empowerment. However, many aspects of the modern-day clinical practice such as the increased reliance on medical technologies, artificial intelligence, and teleconsultation have significantly altered the quality of patient-physician communications. Moreover, many countries are facing an aging population with longer life expectancies but increasingly complex medical comorbidities, which, coupled with medical subspecialization and competing health systems, often lead to fragmentation of clinical care. In this article, I discuss what it truly means for a clinician to know a patient, which is, in fact, a highly intricate skill that is necessary to meet the high bar of person-centered care. I suggest that this can be achieved through the implementation of a holistic biopsychosocial model of clinical consultation at the physician level and fostering coordinated and continuity of care at the health systems level.

A systematic review of the effectiveness of decision making interventions on increasing perceptions of shared decision making occurring in advanced cancer consultations.

OBJECTIVE: To determine how decision making interventions for use in advanced cancer treatment consultations function and whether they increase perceptions of shared decision making (SDM) behaviours within consultations. METHODS: A systematic search of five literature databases was conducted. Evaluations of decision making interventions where participants faced active treatment decisions for stage 4 or otherwise incurable cancer were included. Intervention descriptions were coded using Behaviour Change Techniques (BCTs) to provide a narrative of how the interventions function. A narrative synthesis of interventions effect on perceptions of SDM behaviours compared to usual care was conducted. RESULTS: Four studies presenting different interventions were included. Education, training, modelling and enablement intervention functions were identified. Oncologist SDM training alone and combined with a patient communication aid demonstrated the only significant effect (p < 0.05) on SDM behaviours in advanced cancer consultations. CONCLUSION: Healthcare professional (HCP) SDM training which includes modelling and enablement functions may be effective in increasing clinician motivation, capability and opportunity to facilitate SDM in advanced cancer consultations. PRACTICE IMPLICATIONS: Implementing HCP SDM training into practice may encourage greater uptake of SDM which may lead to treatment decisions concordant with the goals of care of people with advanced cancer.