bims-paceca Biomed News
on Patient-centred care
Issue of 2022‒05‒08
twenty-one papers selected by
Rob Penfold
Queensland Health
  1. Using Health Literacy Tools to Develop and Evaluate Patient Education Material.
  2. Kidney Health for All: Bridging the Gap in Kidney Health Education and Literacy.
  3. Factors influencing cancer patients' experiences of care in the USA, United Kingdom, and Canada: A systematic review.
  4. Bridging the gap between respiratory research and health literacy: an interactive web-based platform.
  5. Improving Health Literacy Knowledge, Behaviors, and Confidence with Interactive Training.
  6. Improving transitional care communication for older Australians from hospital to home: Co-design of the TRANSITION tool.
  7. Shared Access to Patient Portals for Older Adults: Implications for Privacy and Digital Health Equity.
  8. Enhancing Medical Communication and Care Through Professional Medical Interpreters.
  9. Who is at the centre of what? A scoping review of the conceptualisation of 'centredness' in healthcare.
  10. Nothing about me without me: a scoping review of how illness experiences inform simulated participants' encounters in health profession education.
  11. The Impact of Patient Access to Their Electronic Health Record on Medication Management Safety: A Narrative Review.
  12. Artificial intelligence for older people receiving long-term care: a systematic review of acceptability and effectiveness studies.
  13. 'Guiding Lights for effective workplace cultures': enhancing the care environment for staff and patients in older people's care settings.
  14. A Narrative Review of Medical Interpretation Services and their Effect on the Quality of Health Care.
  15. How should decision aids be developed, and which patient outcomes should be assessed?
  16. We have to set the bar higher: towards consumer leadership, beyond engagement or involvement.
  17. A Systematic Review on Improving the Family Experience After Consent for Deceased Organ Donation.
  18. Determinants of Laypersons' Trust in Medical Decision Aids: Randomized Controlled Trial.
  19. The Patient Perspective on Telemedicine.
  20. A quality improvement approach to develop an educational initiative for an age-friendly health system.
  21. Facilitators and barriers in using comics to support family caregivers of patients receiving palliative care at home: A qualitative study.
  1. J Nurs Educ. 2022 May;61(5): 283
    Using Health Literacy Tools to Develop and Evaluate Patient Education Material.
    Sheryl K House.
      
    DOI:  https://doi.org/10.3928/01484834-20220303-11
  2. Iran J Kidney Dis. 2022 Mar;16(2): 69-78
    Kidney Health for All: Bridging the Gap in Kidney Health Education and Literacy.
    Robyn G Langham, Kamyar Kalantar-Zadeh, Ann Bonner, Alessandro Balducci, Li-Li Hsiao, Latha A Kumaraswami, Paul Laffin, Vassilios Liakopoulos, Gamal Saadi, Ekamol Tantisattamo, Ifeoma Ulasi, Siu-Fai Lui, For The World Kidney Day Joint Steering.
      The high burden of kidney disease, global disparities in kidney care and poor outcomes of kidney failure bring a concomitant growing burden to persons affected, their families and caregivers and the community at large. Health literacy is the degree to which persons and organizations have or equitably enable individuals to have the ability to find, understand and use information and services to make informed health-related decisions and actions for themselves and others. Rather than viewing health literacy as a patient deficit, improving health literacy largely rests with health care providers communicating and educating effectively in codesigned partnership with those with kidney disease. For kidney policymakers, health literacy provides the imperative to shift organizations to a culture that places the person at the center of health care. The growing capability of and access to technology provides new opportunities to enhance education and awareness of kidney disease for all stakeholders. Advances in telecommunication, including social media platforms, can be leveraged to enhance individuals' and providers' education; The World Kidney Day declares 2022 as the year of "Kidney Health for All" to promote global teamwork in advancing strategies in bridging the gap in kidney health education and literacy. Kidney organizations should work toward shifting the patient-deficit health literacy narrative to that of being the responsibility of health care providers and health policymakers. By engaging in and supporting kidney health-centered policymaking, community health planning and health literacy approaches for all, the kidney communities strive to prevent kidney diseases and enable living well with kidney disease.  DOI: 10.52547/ijkd.7040.
  3. EClinicalMedicine. 2022 May;47 101405
    Factors influencing cancer patients' experiences of care in the USA, United Kingdom, and Canada: A systematic review.
    Saleh A Alessy, Mohammed Alhajji, Janette Rawlinson, Matthew Baker, Elizabeth A Davies.
      The extent to which individual and structural factors influence cancer patients' reports of their experiences are not yet well understood. We sought to identify which groups of patients consistently report poorer experiences and whether structural care factors might also be associated with better or worse reports. We conducted a systematic review of literature in PubMed and Web of Science with the date of last search as 27th of February 2022 following PRISMA guidelines. We focused on studies from three established population-based surveys datasets and instruments. After screening 303 references, 54 studies met the inclusion criteria. Overall, being from an ethnic minority group, having a more deprived socioeconomic status, poorer general or mental health status, being diagnosed with poor prognosis cancers, presenting to care through an emergency route, and having delayed treatment were consistently associated with poorer cancer care experiences. Conversely being diagnosed with earlier stage disease, perceiving communication as effective, positive patient-provider relationships, and receiving treatment with respect were overall associated with better reports of cancer care experiences. Improvement efforts aimed at delivering better experiences of patient-centred care need to take account much more explicitly patients' differing characteristics, prognoses, and trajectories they take through their care journeys.
    Keywords:  Cancer; Patient experience; Quality of care
    DOI:  https://doi.org/10.1016/j.eclinm.2022.101405
  4. BMJ Simul Technol Enhanc Learn. 2021 ;7(3): 163-166
    Bridging the gap between respiratory research and health literacy: an interactive web-based platform.
    Kelly Burrowes, Haribalan Kumar, Alys Clark, Taco de Wolff, Merryn Tawhai.
      Many patients with respiratory disease lack an understanding of basic respiratory physiology and the changes occurring in their lungs due to disease. Describing how the lungs work using realistic 3D visualisation of lung structure and function will improve communication of complicated concepts, resulting in improved health literacy. We developed a web-based platform, using anatomically realistic 3D lung models, to create an interactive visualisation tool to improve health literacy for patients with respiratory disease. A small amount of non-identifying personal information including gender, age, weight, height and smoking history can be used to customise the visualisation to an individual user. 3D computer modelling was used to create a web-based application that helps people understand how their lungs work in health and disease. The web-based application includes pages describing and visualising how the lungs work and the changes that occur during asthma and damage that smoking may be doing to their lungs. The application is freely available and located at https://sites.bioeng.auckland.ac.nz/silo6/lung_new/. This application bridges the gap between computational modelling and patient education, giving a visually compelling view into the patient's body that cannot be provided with any existing tools, hence providing a novel platform for enhancing patient-clinician interaction.
    Keywords:  Advanced Airway; Simulation Based Education; Technology/Devices/Software
    DOI:  https://doi.org/10.1136/bmjstel-2020-000678
  5. Health Lit Res Pract. 2022 Apr;6(2): e113-e120
    Improving Health Literacy Knowledge, Behaviors, and Confidence with Interactive Training.
    Cori Gibson, Danielle Smith, Andrea K Morrison.
      BACKGROUND: Ensuring that health care professionals are knowledgeable about the influence limited health literacy has on health outcomes and how to apply health literate strategies is crucial to transform quality and safety in care settings. Although many organizational efforts to address health literacy have focused on hospital settings, few have focused on primary care. The designation of a patient-centered medical home requires the need to address integrating health literacy and the training needs of primary care settings. Brief description of activity: An interactive health literacy training intervention was developed, implemented, and evaluated for 25 primary care clinics. This included an online educational module, in-person application activities, and a sustainability plan to continue skill building, reinforce behaviors, and support practice.IMPLEMENTATION: Using a descriptive pre- and post-training design, three survey measures were used to rate health literacy knowledge, behaviors, and confidence levels of more than 475 primary care staff. A pre-training survey was completed prior to completion of an interactive online health literacy module and attendance at an in-person training session which followed. A post-training survey was then completed. Sustainment activities, including lunch and learns, and reinforcement activities by clinic leaders, were initiated to promote use of the strategies in practice. A 1-year follow-up survey was then administered to measure sustainability.
    RESULTS: The interactive training intervention improved primary care staff's knowledge, behaviors, and confidence in using health literacy strategies with patients and families. Common barriers and facilitators around the use of these strategies were also identified.
    LESSONS LEARNED: Careful consideration should be taken when developing health literacy training to ensure it will be effective, efficient, and sustainable. Using elements that facilitate the transfer of training to practice will help improve success. Addressing barriers and promoting facilitators, as well as integrating and connecting health literacy strategies with existing organizational goals and initiatives offer additional ways to reinforce and sustain the practice change. [HLRP: Health Literacy Research and Practice. 2022;6(2):e113-e120.] Plain Language Summary: Clinic staff can improve how they provide information and education to children and families. Interactive training about health literacy led clinic staff to (1) know more about health literacy, (2) use health literacy strategies more, and (3) feel more confident using health literacy strategies. Training over time, supporting staff, and connecting to organizational goals are important for sustainment.
    DOI:  https://doi.org/10.3928/24748307-20220420-01
  6. Health Soc Care Community. 2022 May 04.
    Improving transitional care communication for older Australians from hospital to home: Co-design of the TRANSITION tool.
    Jacqueline Allen, Alison M Hutchinson, Rhonda Brown, Patricia M Livingston.
      This study aimed to develop and evaluate a communication tool to guide transitional care for older patients. Using experience-based co-design, a communication tool resulted from the triangulation of data collected from three study phases. From 2015 to 2016, semi-structured interviews and co-design focus groups were undertaken with older patients, carers and healthcare practitioners across acute, rehabilitation and community settings. The evaluation phase, conducted in 2017-2018, involved use of the communication tool by healthcare practitioners in a multidisciplinary care team with older patients in acute care and semi-structured interviews with healthcare practitioners about the acceptability and feasibility of the tool. A total of 103 patients, carers and healthcare practitioners took part. In semi-structured interviews, patients and carers reported needing to become independent in care transitions, which was supported by discussing the transitional care plan with healthcare practitioners. Interviews with healthcare practitioners identified that their need for fast and safe care transitions was supported by team discussion and by engaging patients and carers in their transitional care plan. Co-design focus group participants identified principles guiding transitional care including patient-centred communication. Data collected from semi-structured interviews and co-design focus groups were used to develop a prototype communication tool to guide conversations about discharge care between healthcare practitioners and older patients. Following use, healthcare practitioners reported that the communication tool was feasible and acceptable although some nurses perceived that transitional care was not their role. The communication tool provides an evidence-based resource for ward nurses to support transitional care continuity in multidisciplinary models.
    Keywords:  co-design; communication; older adults; qualitative methods; transitional care
    DOI:  https://doi.org/10.1111/hsc.13816
  7. JMIR Aging. 2022 May 04. 5(2): e34628
    Shared Access to Patient Portals for Older Adults: Implications for Privacy and Digital Health Equity.
    Jennifer L Wolff, Vadim Dukhanin, Julia G Burgdorf, Catherine M DesRoches.
      Growing reliance on the patient portal as a mainstream modality in health system interactions necessitates prioritizing digital health equity through systems-level strategies that acknowledge and support all persons. Older adults with physical, cognitive, sensory, and socioeconomic vulnerabilities often rely on the involvement of family and friends in managing their health, but the role of these care partners in health information technology is largely undefined and poorly understood. This viewpoint article discusses challenges and opportunities of systematic engagement of care partners through shared access to the patient portal that have been amplified in the context of the COVID-19 outbreak and recent implementation of federal information blocking rules to promote information transparency alongside broader shifts toward care delivery innovation and population aging. We describe implementation considerations and the promise of granular, role-based privacy controls in addressing the nuanced and dynamic nature of individual information sharing preferences and fostering person- and family-centered care delivery.
    Keywords:  aging; care delivery; care partners; cognition; elderly; elderly care; electronic health record; health equity; health informatics; health services; health system; older adults; patient portal; proxy
    DOI:  https://doi.org/10.2196/34628
  8. Mayo Clin Proc. 2022 May;pii: S0025-6196(22)00043-X. [Epub ahead of print]97(5): 820-825
    Enhancing Medical Communication and Care Through Professional Medical Interpreters.
    Salma Iftikhar.
      
    DOI:  https://doi.org/10.1016/j.mayocp.2022.01.013
  9. BMJ Open. 2022 May 02. 12(5): e059400
    Who is at the centre of what? A scoping review of the conceptualisation of 'centredness' in healthcare.
    Elizabeth Ann Sturgiss, Annette Peart, Lauralie Richard, Lauren Ball, Liesbeth Hunik, Tze Lin Chai, Steven Lau, Danny Vadasz, Grant Russell, Moira Stewart.
      OBJECTIVES: We aimed to identify the core elements of centredness in healthcare literature. Our overall research question is: How has centredness been represented within the health literature published between 1990 and 2019?METHODS: A scoping review across five databases (Medline (Ovid), PsycINFO, CINAHL, Embase (Ovid) and Scopus; August 2019) to identify all peer-reviewed literature published since 1990 that focused on the concept of centredness in any healthcare discipline or setting. Screening occurred in duplicate by a multidisciplinary, multinational team. The team met regularly to iteratively develop and refine a coding template that was used in analysis and discuss the interpretations of centredness reported in the literature.
    RESULTS: A total of 23 006 title and abstracts, and 499 full-text articles were screened. A total of 159 articles were included in the review. Most articles were from the USA, and nursing was the disciplinary perspective most represented. We identified nine elements of centredness: Sharing power; Sharing responsibility; Therapeutic relationship/bond/alliance; Patient as a person; Biopsychosocial; Provider as a person; Co-ordinated care; Access; Continuity of care. There was little variation in the concept of centredness no matter the preceding word (eg, patient-/person-/client-), healthcare setting or disciplinary lens. Improving health outcomes was the most common justification for pursuing centredness as a concept, and respect was the predominant driving value of the research efforts. The patient perspective was rarely included in the papers (15% of papers).
    CONCLUSIONS: Centredness is consistently conceptualised, regardless of the preceding word, disciplinary lens or nation of origin. Further research should focus on centring the patient perspective and prioritise research that considers more diverse cultural perspectives.
    Keywords:  EDUCATION & TRAINING (see Medical Education & Training); ETHICS (see Medical Ethics); PREVENTIVE MEDICINE; PRIMARY CARE; Quality in health care
    DOI:  https://doi.org/10.1136/bmjopen-2021-059400
  10. BMJ Simul Technol Enhanc Learn. 2021 ;7(6): 611-616
    Nothing about me without me: a scoping review of how illness experiences inform simulated participants' encounters in health profession education.
    Linda Ní Chianáin, Richard Fallis, Jenny Johnston, Nancy McNaughton, Gerard Gormley.
      Background: Person-centred simulation in health professions education requires involvement of the person with illness experience.Objective: To investigated how real illness experiences inform simulated participants' (SP) portrayals in simulation education using a scoping review to map literature.
    Study selection: Arksey and O'Malley's framework was used to search, select, chart and analyse data with the assistance of personal and public involvement. MEDLINE, Embase, CINAHL, Scopus and Web of Science databases were searched. A final consultation exercise was conducted using results.
    Findings: 37 articles were within scope. Reporting and training of SPs are inconsistent. SPs were actors, volunteers or the person with the illness experience. Real illness experience was commonly drawn on in communication interactions. People with illness experience could be directly involved in various ways, such as through conversation with an SP, or indirectly, such as a recording of heart sounds. The impact on the learner was rarely considered.
    Conclusion: Authentic illness experiences help create meaningful person-centred simulation education. Patients and SPs may both require support when sharing or portraying illness experience. Patients' voices profoundly enrich the educational contributions made by SPs.
    Keywords:  patient involvement; simulated patient; simulation-based education
    DOI:  https://doi.org/10.1136/bmjstel-2021-000886
  11. Saudi Pharm J. 2022 Mar;30(3): 185-194
    The Impact of Patient Access to Their Electronic Health Record on Medication Management Safety: A Narrative Review.
    Ghadah Assiri.
      Introduction: As the American's Federal Health Insurance Portability and Accountability Act (HIPAA) stated that patients should be allowed to review their medical records, and as information technology is ever more widely used by healthcare professionals and patients, providing patients with online access to their own medical records through a patient portal is becoming increasingly popular. Previous research has been done regarding the impact on the quality and safety of patients' care, rather than explicitly on medication safety, when providing those patients with access to their electronic health records (EHRs).Aim: This narrative review aims to summarise the results from previous studies on the impact on medication management safety concepts of adult patients accessing information contained in their own EHRs.
    Result: A total of 24 studies were included in this review. The most two commonly studied measures of safety in medication management were: (a) medication adherence and (b) patient-reported experience. Other measures, such as: discrepancies, medication errors, appropriateness and Adverse Drug Events (ADEs) were the least studied.
    Conclusion: The results suggest that providing patients with access to their EHRs can improve medication management safety. Patients pointed out improvements to the safety of their medications and perceived stronger medication control. The data from these studies lay the foundation for future research.
    Keywords:  ACOVE, Assessing Care Of Vulnerable Elders; ADE, Adverse Drug Events; CI, Confidence Interval; EHR, Electronic Health Record; Electronic health record; Electronic medical records; HIPAA, American’s Federal Health Insurance Portability and Accountability Act; HIV/AIDS, Human Immunodeficiency Virus/ Acquired Immunodeficiency Syndrome; LMR, Longitudinal Medical Record; MHV, MyHealtheVet; OR, Odds Ratio; OTC, over-the-counter; PAERS, Patient Access to Electronic Records System; PCP, Primary Care Physician; PDC, Proportion of Days Covered; PG, Patient Gateway; PHR, Personal Health Record; Patient access and medication management; Patient participation; RCT, Randomised Controlled Trial; RR, Relative Risk; SPARO, System Providing Access to Records Online; UK, United Kingdom; USA, United States of America; VA, Veterans Affairs; WDS, WellDoc System
    DOI:  https://doi.org/10.1016/j.jsps.2022.01.001
  12. Lancet Healthy Longev. 2022 Apr;3(4): e286-e297
    Artificial intelligence for older people receiving long-term care: a systematic review of acceptability and effectiveness studies.
    Kate Loveys, Matthew Prina, Chloe Axford, Òscar Ristol Domènec, William Weng, Elizabeth Broadbent, Sameer Pujari, Hyobum Jang, Zee A Han, Jotheeswaran Amuthavalli Thiyagarajan.
      Artificial intelligence (AI)-enhanced interventions show promise for improving the delivery of long-term care (LTC) services for older people. However, the research field is developmental and has yet to be systematically synthesised. This systematic review aimed to synthesise the literature on the acceptability and effectiveness of AI-enhanced interventions for older people receiving LTC services. We conducted a systematic search that identified 2720 records from Embase, Ovid, Global Health, PsycINFO, and Web of Science. 31 articles were included in the review that evaluated AI-enhanced social robots (n=22), environmental sensors (n=6), and wearable sensors (n=5) with older people receiving LTC services across 15 controlled and 14 non-controlled trials in high-income countries. Risk of bias was evaluated using the RoB 2, RoB 2 CRT, and ROBINS-I tools. Overall, AI-enhanced interventions were found to be somewhat acceptable to users with mixed evidence for their effectiveness across different health outcomes. The included studies were found to have high risk of bias which reduced confidence in the results. AI-enhanced interventions are promising innovations that could reshape the landscape of LTC globally. However, more trials are required to support their widespread implementation. Pathways are needed to support more high-quality trials, including in low-income and middle-income countries.
    DOI:  https://doi.org/10.1016/S2666-7568(22)00034-4
  13. Nurs Older People. 2022 May 04.
    'Guiding Lights for effective workplace cultures': enhancing the care environment for staff and patients in older people's care settings.
    Jonathan Webster, Kate Sanders, Shaun Cardiff, Kim Manley.
      While much attention has been given to organisational culture, there has been less focus on workplace culture. Yet workplace culture strongly influences the way care is delivered, received and experienced. An effective workplace culture is crucial for the well-being of individual staff members and teams as well as for patients' experiences and outcomes of care. This article describes the 'Guiding Lights for effective workplace cultures' which were developed by the authors and provide a framework to assist in understanding and promoting effective workplace cultures and creating environments where staff and patients feel safe and valued. There are four Guiding Lights: 'collective leadership', 'living shared values', 'safe, critical, creative learning environments' and 'change for good that makes a difference'. Each one articulates what good workplace cultures are through descriptors and intermediate outcomes and together produce a set of ultimate outcomes. The Guiding Lights provide nurses working in older people's care settings with an opportunity to learn from, and celebrate, what is going well in their workplaces and to consider areas that require further development.
    Keywords:  leadership; leadership models; older people; organisational culture; practice development; professional; professional development; professional issues; shared leadership; ward environment
    DOI:  https://doi.org/10.7748/nop.2022.e1377
  14. South Med J. 2022 May;115(5): 317-321
    A Narrative Review of Medical Interpretation Services and their Effect on the Quality of Health Care.
    Stacie A Schlange, Angela L Palmer-Wackerly, Virginia Chaidez.
      Half of the foreign-born population in the United States speaks English "less than very well." The extant literature suggests that low-English-proficient (LEP) patients experience poorer healthcare outcomes than do language-concordant patients. It remains unclear which methods of interpreter services are best for communicating effectively and achieving positive health outcomes for LEP patients. This review examines interpretation methods to compare their effectiveness and frequency of use and identifies the remaining gaps in our knowledge. The evidence suggests that any type of professional language service is superior to untrained interpreting and vastly better than not using an interpreter at all. Even with this knowledge, use of interpreter services is unacceptably low and gaps remain. Further research is needed to isolate and examine different methods of interpretation and measure objective health outcomes. In addition, education is needed for interpreters and healthcare providers to ensure the most effective communicative strategies for LEP patients.
    DOI:  https://doi.org/10.14423/SMJ.0000000000001392
  15. Cancer. 2022 May 04.
    How should decision aids be developed, and which patient outcomes should be assessed?
    Michael A Diefenbach, Suzanne M Miller.
      
    DOI:  https://doi.org/10.1002/cncr.34247
  16. Aust Health Rev. 2022 May 05.
    We have to set the bar higher: towards consumer leadership, beyond engagement or involvement.
    Brett Scholz.
      Understanding of the benefits of consumer-led health policy, practice, research and education has been developing for decades. However, barriers to genuine, non-tokenistic consumer leadership remain across the health sector. While recent calls to align Australian consumer engagement practices with those in the UK and elsewhere may sound progressive, doing so would be problematic for three reasons. First, Australia has been at the forefront of consumer leadership scholarship and advocacy for decades, and we should not ignore the work consumers and allies have done in improving our health systems. Second, although there have been positive outcomes from consumer engagement and inclusion practices (as often required in other jurisdictions), they are open to tokenism and continue to position consumers' experiential expertise as 'lesser' compared to other health sector stakeholders' knowledge. Last, compared to consumer leadership, engagement or inclusion are 'lower bars' for health professionals to aim for. If we settle for engagement or inclusion in cases where consumer leadership would have been possible, then we lose not only our position at the forefront of consumer leadership, but also the expertise of consumers. Three propositions are provided: (1) we should support consumer-led development policy for consumer leadership in health, (2) we should ensure consumer leadership in oversight over as well as conduct of health and medical research, (3) we should encourage honest claims about the extent to which projects or initiatives are led by or with consumers.
    DOI:  https://doi.org/10.1071/AH22022
  17. Prog Transplant. 2022 May 02. 15269248221087429
    A Systematic Review on Improving the Family Experience After Consent for Deceased Organ Donation.
    Sonja Bjelland, Krista Jones.
      INTRODUCTION: The demand for transplanted organs outweighs the supply and intensifies the need to improve care for donor families. Studies have shown inadequate care by hospital staff can increase posttraumatic stress disorder and complicated grief in these families but putting solutions into practice remains slow.OBJECTIVE: This systematic review identified factors that relieve or contribute to distress for deceased organ donor families in the time since the decision to donate. Additionally, it provides insights into potential improvements at public health, educational, and health system levels to address these deficiencies.
    METHODS: Search terms included organ don*, famil* or relati*, family-centered, grief, and experience*. The search covered original research articles, published in English, from 2014 to July 2021.
    RESULTS: Four key themes emerged among the studies. (a) Understanding factors that affect the emotional aftermath can help staff prevent posttraumatic stress disorder and complicated grief. (b) Improving communication by hospital staff includes: avoiding medical jargon, providing adequate audio and visual explanations, and understanding that the next of kin is struggling to comprehend the tragedy and the information they are being told. (c) End-of-life care such as memory making, bringing in palliative care resources, and parting ceremonies can assist with familial coping as well as staff interactions. (d) Families want more support in the months and years after the donation decision.
    DISCUSSION: Changes at multiple levels can improve the quality of care for families whose relative gave the gift of life, but more research and translation into practice are needed.
    Keywords:  Organ donation; brain death; communication; critical care; grief
    DOI:  https://doi.org/10.1177/15269248221087429
  18. JMIR Hum Factors. 2022 May 03. 9(2): e35219
    Determinants of Laypersons' Trust in Medical Decision Aids: Randomized Controlled Trial.
    Marvin Kopka, Malte L Schmieding, Tobias Rieger, Eileen Roesler, Felix Balzer, Markus A Feufel.
      BACKGROUND: Symptom checker apps are patient-facing decision support systems aimed at providing advice to laypersons on whether, where, and how to seek health care (disposition advice). Such advice can improve laypersons' self-assessment and ultimately improve medical outcomes. Past research has mainly focused on the accuracy of symptom checker apps' suggestions. To support decision-making, such apps need to provide not only accurate but also trustworthy advice. To date, only few studies have addressed the question of the extent to which laypersons trust symptom checker app advice or the factors that moderate their trust. Studies on general decision support systems have shown that framing automated systems (anthropomorphic or emphasizing expertise), for example, by using icons symbolizing artificial intelligence (AI), affects users' trust.OBJECTIVE: This study aims to identify the factors influencing laypersons' trust in the advice provided by symptom checker apps. Primarily, we investigated whether designs using anthropomorphic framing or framing the app as an AI increases users' trust compared with no such framing.
    METHODS: Through a web-based survey, we recruited 494 US residents with no professional medical training. The participants had to first appraise the urgency of a fictitious patient description (case vignette). Subsequently, a decision aid (mock symptom checker app) provided disposition advice contradicting the participants' appraisal, and they had to subsequently reappraise the vignette. Participants were randomized into 3 groups: 2 experimental groups using visual framing (anthropomorphic, 160/494, 32.4%, vs AI, 161/494, 32.6%) and a neutral group without such framing (173/494, 35%).
    RESULTS: Most participants (384/494, 77.7%) followed the decision aid's advice, regardless of its urgency level. Neither anthropomorphic framing (odds ratio 1.120, 95% CI 0.664-1.897) nor framing as AI (odds ratio 0.942, 95% CI 0.565-1.570) increased behavioral or subjective trust (P=.99) compared with the no-frame condition. Even participants who were extremely certain in their own decisions (ie, 100% certain) commonly changed it in favor of the symptom checker's advice (19/34, 56%). Propensity to trust and eHealth literacy were associated with increased subjective trust in the symptom checker (propensity to trust b=0.25; eHealth literacy b=0.2), whereas sociodemographic variables showed no such link with either subjective or behavioral trust.
    CONCLUSIONS: Contrary to our expectation, neither the anthropomorphic framing nor the emphasis on AI increased trust in symptom checker advice compared with that of a neutral control condition. However, independent of the interface, most participants trusted the mock app's advice, even when they were very certain of their own assessment. Thus, the question arises as to whether laypersons use such symptom checkers as substitutes rather than as aids in their own decision-making. With trust in symptom checkers already high at baseline, the benefit of symptom checkers depends on interface designs that enable users to adequately calibrate their trust levels during usage.
    TRIAL REGISTRATION: Deutsches Register Klinischer Studien DRKS00028561; https://tinyurl.com/rv4utcfb (retrospectively registered).
    Keywords:  IT; anthropomorphism; artificial intelligence; consumer health; disposition advice; human-computer interaction; information technology; mobile phone; patient-centered care; symptom checkers; urgency assessment
    DOI:  https://doi.org/10.2196/35219
  19. Clin Liver Dis (Hoboken). 2022 Apr;19(4): 167-170
    The Patient Perspective on Telemedicine.
    Karen Hoyt, Andrew Reynolds.
      Content available: Author Audio Recording.
    DOI:  https://doi.org/10.1002/cld.1188
  20. Geriatr Nurs. 2022 May 02. pii: S0197-4572(22)00091-X. [Epub ahead of print]45 193-197
    A quality improvement approach to develop an educational initiative for an age-friendly health system.
    Sherry A Greenberg, Evelyn G Duffy, Mary E McCormack, Elizabeth Zimmermann, Anne M Pohnert, Mary A Dolansky.
      Authors describe a quality improvement approach to develop and pilot test educational materials with an aim to educate MinuteClinic providers in the provision of age-friendly care using the 4Ms Framework: What Matters, Medication, Mentation, Mobility. The team used surveys, focus groups and site visits to develop educational prototypes with Plan-Do-Study-Act iterative cycles to improve the education. Educational materials introduced providers to 4Ms assessment and evidence-based act on strategies for older adults in the convenient care setting. The education activities included an interactive orientation module comparing standard care to 4Ms care, 10 video vignettes with experts addressing gerontological topics, and 12 grand rounds presented monthly on topics applying the 4Ms with older adults. The information gained from the staff aided in the development and the iterative improvement of the materials. This article highlights the benefits of using a quality improvement approach in development of clinician education in provision of age-friendly care.
    Keywords:  Age-friendly; Convenient care; Older adults; Quality improvement
    DOI:  https://doi.org/10.1016/j.gerinurse.2022.04.009
  21. Palliat Med. 2022 May 03. 2692163221093513
    Facilitators and barriers in using comics to support family caregivers of patients receiving palliative care at home: A qualitative study.
    Maaike M Haan, Jelle Lp van Gurp, Marjan Knippenberg, Gert Olthuis.
      BACKGROUND: Family caregiving at home is highly important for people receiving palliative treatment, but also a complex experience, subject to implicit social expectations. This study empirically explored the claim that comics benefit palliative care practice, through evaluating a graphic novel's value as an aid in supportive conversations with family caregivers.AIM: To identify facilitators and barriers in using Naasten (Loved ones), a Dutch research-based graphic novel about family caregivers providing care at the end-of-life.
    DESIGN: Qualitative study, following thematic content analysis.
    PARTICIPANTS: Three focus groups with family caregiver consultants, palliative care volunteers, and healthcare professionals (total N = 23) who supported family caregivers; and individual telephone interviews with family caregivers to whom the book was presented (N = 4).
    RESULTS: Barriers and facilitators related to: (1) the family caregiver, (2) impact on the family caregiver, (3) impact on the conversation between the person who provides support and the family caregiver, (4) their relationship, and (5) the person who provides support. Naasten was reported as recognizable and supportive, and powerful in raising emotions, awareness and conversation. Barriers concerned the book's impact due to its style and guidance of a conversation, and doubts about its surplus-value.
    CONCLUSIONS: Emotionally impactful comics may support bereaved family caregivers, but should be introduced with care among current family caregivers, for example, ensuring a right fit, introduction, and follow-up-while taking into account a caregiver's individual situation, needs, abilities, and affinity with the medium. Comics are preferably used in educational settings, contributing to professional awareness and tailored support of family caregivers.
    Keywords:  Family caregivers; arts-based research; comic art; education; graphic novels as topic; informal care; palliative care
    DOI:  https://doi.org/10.1177/02692163221093513
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