bims-paceca Biomed News
on Patient-centred care
Issue of 2022–06–19
nineteen papers selected by
Rob Penfold, Queensland Health
  1. When are shared decisions false choices?
  2. Stakeholder involvement in care transition planning for older adults and the factors guiding their decision-making: a scoping review.
  3. Abandon Informed Consent in Favor of Probability-Based, Shared Decision-Making Following the Wishes of a Reasonable Person.
  4. Understanding the Current Landscape of Direct-to-Consumer Health Literacy Interventions.
  5. Comparing shared decision making using a paper and digital consent process. A multi-site, single centre study in a trauma and orthopaedic department.
  6. Health Literacy in Primary Care: Reflections and Suggestions for Physicians, Researchers, and Administrators.
  7. Communicating decisions about care with patients and companions in emergency department consultations.
  8. Understanding the Current Landscape of Health Literacy Interventions within Health Systems.
  9. Methods to elicit and evaluate the attainment of patient goals in older adults: A scoping review.
  10. Rural Access and Usage of Patient Portals: A 2019 Health Information National Trends Survey Analysis.
  11. Development of a workflow process mapping protocol to inform the implementation of regional patient navigation programs in breast oncology.
  12. Patient comprehension of breast pathology report terminology: The need for patient-centered resources.
  13. The use of digital stories as a health promotion intervention: a scoping review.
  14. Articulation of postsurgical patient discharges: coordinating care transitions from hospital to home.
  15. Applying Agile Methodology to Reengineer the Delivery of Person-Centered Care in a Nursing Home: A Case Study.
  16. Broadening the diversity of consumers engaged in guidelines: a scoping review.
  17. Establishing an enduring co-production platform in Aboriginal health.
  18. Interventions improving well-being of adult cancer patients' caregivers: A systematic review.
  19. Healthcare in the hand: Patients' use of handheld technology in video consultations with their general practitioner.
  1. CMAJ. 2022 Jun 13. 194(23): E817-E818
    When are shared decisions false choices?
    Greg Basky.
      
    DOI:  https://doi.org/10.1503/cmaj.1096003
  2. BMJ Open. 2022 Jun 13. 12(6): e059446
    Stakeholder involvement in care transition planning for older adults and the factors guiding their decision-making: a scoping review.
    Sarah Carbone, Kristina Marie Kokorelias, Whitney Berta, Susan Law, Kerry Kuluski.
       OBJECTIVE: To synthesise the existing literature on care transition planning from the perspectives of older adults, caregivers and health professionals and to identify the factors that may influence these stakeholders' transition decision-making processes.
    DESIGN: A scoping review guided by Arksey and O'Malley's six-step framework. A comprehensive search strategy was conducted on 7 January 2021 to identify articles in five databases (MEDLINE, Embase, CINAHL Plus, PsycINFO and AgeLine). Records were included when they described care transition planning in an institutional setting from the perspectives of the care triad (older adults, caregivers and health professionals). No date or study design restrictions were imposed.
    SETTING: This review explored care transitions involving older adults from an institutional care setting to any other institutional or non-institutional care setting. Institutional care settings include communal facilities where individuals dwell for short or extended periods of time and have access to healthcare services.
    PARTICIPANTS: Older adults (aged 65 or older), caregivers and health professionals.
    RESULTS: 39 records were included. Stakeholder involvement in transition planning varied across the studies. Transition decisions were largely made by health professionals, with limited or unclear involvement from older adults and caregivers. Seven factors appeared to guide transition planning across the stakeholder groups: (a) institutional priorities and requirements; (b) resources; (c) knowledge; (d) risk; (e) group structure and dynamic; (f) health and support needs; and (g) personality preferences and beliefs. Factors were described at microlevels, mesolevels and macrolevels.
    CONCLUSIONS: This review explored stakeholder involvement in transition planning and identified seven factors that appear to influence transition decision-making. These factors may be useful in advancing the delivery of person and family-centred care by determining how individual-level, group-level and system-level values guide decision-making. Further research is needed to understand how various stakeholder groups balance these factors during transition planning in different health contexts.
    Keywords:  geriatric medicine; health policy; health services administration & management; quality in health care
    DOI:  https://doi.org/10.1136/bmjopen-2021-059446
  3. J Patient Exp. 2022 ;9 23743735221106599
    Abandon Informed Consent in Favor of Probability-Based, Shared Decision-Making Following the Wishes of a Reasonable Person.
    John T James.
      Legally and ethically physicians must provide information to patients so they may make an informed decision about invasive procedures. The problem is who decides what information to provide. Is it the reasonable patient or the reasonable physician? Individual patients and individual physicians may differ from the norm on what is reasonable. This problem may be solved by shared decision-making in which the preferences of the patient and the probability-based knowledge of the physician are used to co-produce an optimal choice. Currently, patients are seldom prepared to engage in shared decision-making, and vestiges of meaningless "informed consent" are common. The present case study illustrates how "reasonable person" survey data may be used by a patient to engage in probability-based, shared decision-making with a surgeon planning to perform a laminectomy. Recommendations include probability-based, shared decision-making training for patients and physicians and improved documentation to facilitate learning.
    Keywords:  informed consent; probability of harm; reasonable patient; shared decision-making
    DOI:  https://doi.org/10.1177/23743735221106599
  4. Perspect Health Inf Manag. 2022 ;19(Spring): 1e
    Understanding the Current Landscape of Direct-to-Consumer Health Literacy Interventions.
    Michael Truong, Susan H Fenton.
      
  5. Surgeon. 2022 Jun 10. pii: S1479-666X(22)00087-7. [Epub ahead of print]
    Comparing shared decision making using a paper and digital consent process. A multi-site, single centre study in a trauma and orthopaedic department.
    Rory Dyke, Edward St-John, Hemina Shah, Joseph Walker, Dafydd Loughran, Raymond Anakwe, Dinesh Nathwani.
       INTRODUCTION: The importance of shared decision making (SDM) for informed consent has been emphasised in the updated regulatory guidelines. Errors of completion, legibility and omission have been associated with paper-based consent forms. We introduced a digital consent process and compared it against a paper-based process for quality and patient reported involvement in shared decision making.
    METHODS: 223 patients were included in this multi-site, single centre study. Patient consent documentation was by either a paper consent form or the Concentric digital consent platform. Consent forms were assessed for errors of legibility, completion and accuracy of content. Core risks for 20 orthopaedic operations were pre-defined by a Delphi round of experts and forms analysed for omission of these risks. SDM was determined via the 'collaboRATE Top Score', a validated measure for gold-standard SDM.
    RESULTS: 72% (n = 78/109) of paper consent forms contained ≥1 error compared to 0% (n = 0/114) of digital forms (P < 0.0001). Core risks were unintentionally omitted in 63% (n = 68/109) of paper-forms compared to less than 2% (n = 2/114) of digital consent forms (P < 0.0001). 72% (n = 82/114) of patients giving consent digitally reported gold-standard SDM compared to 28% (n = 31/109) with paper consent (P < 0.001).
    CONCLUSION: Implementation of a digital consent process has been shown to reduce both error rate and the omission of core risks on consent forms whilst increasing the quality of SDM. This novel finding suggests that using digital consent can improve both the quality of informed consent and the patient experience of SDM.
    Keywords:  Consent; Digital consent; Digital healthcare; Electronic healthcare records; Montgomery; Shared decision making; Surgery; Trauma and orthopaedic surgery; eConsent
    DOI:  https://doi.org/10.1016/j.surge.2022.05.004
  6. Am J Lifestyle Med. 2022 May-Jun;16(3):16(3): 408-411
    Health Literacy in Primary Care: Reflections and Suggestions for Physicians, Researchers, and Administrators.
    Anne Sprogell, Allison R Casola, Amy Cunningham.
      As the healthcare system evolves, it is becoming more complicated for physicians and patients. Patients might have had one doctor in the past, but now are likely to regularly see several specialists along with their primary care physician. Patients can access their health records online, which increases transparency and accountability, but adds more information they have to interpret. This is the concept of health literacy-the ability to obtain, process, and act upon information regarding one's health. This article will characterize health literacy in primary care and provide three areas that primary care physicians and researchers can direct their focus in order to increase health literacy among patients: community engagement, trainee education, and examination of personal bias.
    Keywords:  health literacy; patient engagement; prevention; primary care
    DOI:  https://doi.org/10.1177/15598276211041283
  7. Health Expect. 2022 Jun 17.
    Communicating decisions about care with patients and companions in emergency department consultations.
    Silvie Cooper, Fiona Stevenson.
       INTRODUCTION: This paper explores doctor-patient and companion communication about care decisions in a UK emergency department (ED). Doctors interface between patients and healthcare systems and facilitate access to care across a range of encounters, drawing on information and authority to make and communicate clinical care decisions.
    MATERIALS AND METHODS: We explored characteristics of communication through ethnographic observation of 16 video-recorded case studies of ED consultations (average length: 1 h) collected over 6 months. Companions were present in 10 cases. We conducted a framework analysis to understand the roles of doctors, consultants, patients and companions in relaying ED care decisions.
    FINDINGS: We present two cases to reflect companion roles and their effect on the consultation. The urgency for care and scarcity of resources means clinicians justify decisions and strategize to move patients along ED pathways.
    DISCUSSION: Everyday care interactions between patients and doctors are goal-oriented and companions participate by providing case information, querying decisions and advocating for care. Our findings reflect how doctors justify decisions made in communicating the next steps in ways that characterize the clinical encounter.
    CONCLUSION: By exploring everyday interactions our study contributes to a growing understanding of patient-clinician and companion communication in the ED.
    PATIENT OR PUBLIC CONTRIBUTION: Patients and caregivers voluntarily participated in data collection and consented to video recordings being conducted of ED consultations between them and junior doctors. There was extensive consultation with all grades of staff about the acceptability of the work and the best way to conduct it to minimize the impact on patients and staff. Through this manuscript, we have demonstrated the presence and important role of companions. On reflection it would have been valuable to have included patients and companions in discussions about the work; however, this project was conducted with very limited funding and no resources were committed to patient and public involvement. Given the setting and scope of the study, it was not feasible to involve patients or members of the public in other stages of the research or preparation of the manuscript. We recognize this as a potential limitation of the work.
    Keywords:  decision-making; emergency department; junior doctors; patient communication; triadic communication
    DOI:  https://doi.org/10.1111/hex.13519
  8. Perspect Health Inf Manag. 2022 ;19(Spring): 1h
    Understanding the Current Landscape of Health Literacy Interventions within Health Systems.
    Michael Truong, Susan H Fenton.
      
  9. Patient Educ Couns. 2022 Jun 06. pii: S0738-3991(22)00262-2. [Epub ahead of print]
    Methods to elicit and evaluate the attainment of patient goals in older adults: A scoping review.
    Amber Damiaens, Evelien Maes, Hanne Van Roosbroek, Ann Van Hecke, Veerle Foulon.
       OBJECTIVE: This scoping review aimed to identify patient goal elicitation and evaluation methods for older adults, and to investigate which methods can be used in medication optimization interventions for nursing home residents (NHRs).
    METHODS: The Arksey and O'Malley framework guided the review. A search was launched in PubMed, Embase, CINAHL, and Web of Science. Reference selection and data extraction were performed by three independent reviewers, followed by team discussions to solve discrepancies. Inductive thematic analysis was applied to synthesize the data. Included papers were reconsidered to identify methods for medication optimization interventions for NHRs.
    RESULTS: Ninety-six references, encompassing 38 elicitation and 12 evaluation methods, were included. Elicitation methods differed in structure, content, and patient involvement levels. Qualitative and quantitative methods were found to assess goal attainment. Five elicitation and three evaluation methods were developed for NHRs, but none of these contained a medication-related assessment.
    CONCLUSION: A variety of goal elicitation and evaluation methods for older adults was found, but none for medication optimization interventions in NHRs.
    PRACTICE IMPLICATIONS: A holistic approach seems important to integrate patient goals into medication optimization interventions, not limiting goal elicitation to a medication-related assessment. Also, the choice of assessor seems important to obtain patient goals.
    Keywords:  Elderly; Goal-oriented care; Medication optimization; Nursing homes; Patient goals; Person-centered care
    DOI:  https://doi.org/10.1016/j.pec.2022.06.002
  10. Perspect Health Inf Manag. 2022 ;19(Spring): 1j
    Rural Access and Usage of Patient Portals: A 2019 Health Information National Trends Survey Analysis.
    Grishma P Bhavsar, Ashley S Robertson, Dalton Pena.
      To examine differences in rural and urban respondents' use of and access to patient portals in the United States, this study used the 2019 National Cancer Institute's Health Information National Trends Survey (HINTS) 5, Cycle 3. A cross-sectional secondary data analysis utilizing jackknife weighting procedures was used to generalize the findings to be nationally representative. Despite similar rates of providers maintaining an electronic medical record system, adjusted analyses found that rural respondents had lower odds of being offered access to a patient portal by their healthcare provider (OR: 0.60; 95 percent CI: 0.39-0.91) and accessing their patient portals in the last 12 months (OR: 0.62; 95 percent CI: 0.43-0.91) when compared to their urban counterparts. Additional research is needed to determine effective strategies for overcoming geographic and structural barriers to adoption of this technology by rural residents.
    Keywords:  disparity; patient portal; rural; technology
  11. Cancer. 2022 Jul 01. 128 Suppl 13 2649-2658
    Development of a workflow process mapping protocol to inform the implementation of regional patient navigation programs in breast oncology.
    Translating Research Into Practice (TRIP) Consortium
       BACKGROUND: Implementing city-wide patient navigation processes that support patients across the continuum of cancer care is impeded by a lack of standardized tools to integrate workflows and reduce gaps in care. The authors present an actionable workflow process mapping protocol for navigation process planning and improvement based on methods developed for the Translating Research Into Practice study.
    METHODS: Key stakeholders at each study site were identified through existing community partnerships, and data on each site's navigation processes were collected using mixed methods through a series of team meetings. The authors used Health Quality Ontario's Quality Improvement Guide, service design principles, and key stakeholder input to map the collected data onto a template structured according to the case-management model.
    RESULTS: Data collection and process mapping exercises resulted in a 10-step protocol that includes: 1) workflow mapping procedures to guide data collection on the series of activities performed by health care personnel that comprise a patient's navigation experience, 2) a site survey to assess program characteristics, 3) a semistructured interview guide to assess care coordination workflows, 4) a site-level swim lane workflow process mapping template, and 5) a regional high-level process mapping template to aggregate data from multiple site-level process maps.
    CONCLUSIONS: This iterative, participatory approach to data collection and process mapping can be used by improvement teams to streamline care coordination, ultimately improving the design and delivery of an evidence-based navigation model that spans multiple treatment modalities and multiple health systems in a metropolitan area. This protocol is presented as an actionable toolkit so the work may be replicated to support other quality-improvement initiatives and efforts to design truly patient-centered breast cancer treatment experiences.
    LAY SUMMARY: Evidence-based patient navigation in breast cancer care requires the integration of services through each phase of cancer treatment. The Translating Research Into Practice study aims to implement patient navigation for patients with breast cancer who are at risk for delays and are seeking care across 6 health systems in Boston, Massachusetts. The authors designed a 10-step protocol outlining procedures and tools that support a systematic assessment for health systems that want to implement breast cancer patient navigation services for patients who are at risk for treatment delays.
    Keywords:  breast cancer; health equity; implementation science; patient navigation; quality improvement
    DOI:  https://doi.org/10.1002/cncr.33944
  12. Surgery. 2022 Jun 14. pii: S0039-6060(22)00329-4. [Epub ahead of print]
    Patient comprehension of breast pathology report terminology: The need for patient-centered resources.
    Alexandra Verosky, Laura D Leonard, Christopher Quinn, Sudheer Vemuru, Emily Warncke, Ben Himelhoch, Victoria Huynh, Dulcy Wolverton, Kshama Jaiswal, Gretchen Ahrendt, Sharon Sams, Chen-Tan Lin, Ethan Cumbler, Richard Schulick, Sarah E Tevis.
       BACKGROUND: As health care continues to evolve toward information transparency, an increasing number of patients have access to their medical records, including result reports that were not originally designed to be patient-facing. Previous studies have demonstrated that patients have poor understanding of medical terminology. However, patient comprehension of terminology specific to breast pathology reports has not been well studied. We assessed patient understanding of common medical terms found in breast pathology reports.
    METHODS: A survey was administered electronically to patients scheduled for a screening mammogram within a multisite health care system. Participants were asked to objectively define and interpret 8 medical terms common to breast biopsy pathology reports. Patient perception of the utility of various educational tools was also assessed. Demographic information including health literacy, education level, previous cancer diagnosis, and primary language was collected.
    RESULTS: In total, 527 patients completed the survey. Terms including "malignant" and "benign" were the most correctly defined at 80% and 73%, respectively, whereas only 1% correctly defined "high grade." Factors including race/ethnicity and education level were correlated with more correct scores. Patients preferred educational tools that were specific to their diagnosis and available at the time they were reviewing their results.
    CONCLUSION: Patient comprehension of common medical terminology is poor. Potential assumptions of understanding based on patient factors including education, past medical history, and occupation are misinformed. With the newly mandated immediate release of information to patients, there is a pressing need to develop and integrate educational tools to support patients through all aspects of their care.
    DOI:  https://doi.org/10.1016/j.surg.2022.05.007
  13. BMC Public Health. 2022 Jun 14. 22(1): 1180
    The use of digital stories as a health promotion intervention: a scoping review.
    Abby M Lohr, Jhenitza P Raygoza Tapia, Elizabeth Salerno Valdez, Leslie C Hassett, Aline C Gubrium, Alice Fiddian-Green, Linda Larkey, Irene G Sia, Mark L Wieland.
       BACKGROUND: It is challenging to develop health promotion interventions created in collaboration with communities affected by inequities that focus beyond individual behavior change. One potential solution is interventions that use digital stories (DS). Digital storytelling (DST) is an opportunity for reflection, connection with others, and the elevation of voices often absent from daily discourse. Consequently, public health researchers and practitioners frequently employ the DST workshop process to develop messaging that promotes health and highlights concerns in partnership with historically marginalized communities. With participants' permission, DS can reach beyond the storytellers through behavior or attitude change interventions for health promotion among communities who share the targeted health concern. Our goal was to synthesize the literature describing interventions that use DS for health promotion to identify gaps.
    METHODS: We conducted a scoping review. Our inclusion criteria were articles that: 1) described empirical research; 2) used DS that were developed using the StoryCenter DST method; 3) assessed an intervention that used DS to address the health promotion of viewers (individuals, families, community, and/or society) impacted by the targeted health issue 4) were written in English or Spanish. To synthesize the results of the included studies, we mapped them to the health determinants in the National Institute of Minority Health and Health Disparities (NIMHD) research framework. We assessed the number of occurrences of each determinant described in the results of each article.
    RESULTS: Ten articles met the eligibility criteria. All the included articles highlighted health equity issues. Our mapping of the articles with definitive results to the NIMHD research framework indicates that interventions that use DS addressed 17 out of 20 health determinants. All mapped interventions influenced intentions to change health behaviors (NIMHD level/domain: Individual/Behavioral), increased health literacy (Individual/Health Care System), and/or stimulated conversations that addressed community norms (Community/Sociocultural Environment).
    CONCLUSIONS: Interventions that use DS appear to positively affect the health promotion of participants across a range of health issues and determinants. Future research is needed in the Interpersonal, Community, and Societal levels and within the Biological, Physical/Built Environment, and Sociocultural Environment domains.
    Keywords:  Digital storytelling; Health disparities; Health equity; Health promotion; Scoping review; Storytelling
    DOI:  https://doi.org/10.1186/s12889-022-13595-x
  14. J Am Med Inform Assoc. 2022 Jun 17. pii: ocac099. [Epub ahead of print]
    Articulation of postsurgical patient discharges: coordinating care transitions from hospital to home.
    Joanna Abraham, Madhumitha Kandasamy, Ashley Huggins.
       BACKGROUND: Cardiac surgery patients are at high risk for readmissions after hospital discharge- few of these readmissions are preventable by mitigating barriers underlying discharge care transitions. An in-depth evaluation of the nuances underpinning the discharge process and the use of tools to support the process, along with insights on patient and clinician experiences, can inform the design of evidence-based strategies to reduce preventable readmissions.
    OBJECTIVE: The study objectives are 3-fold: elucidate perceived factors affecting the postsurgical discharge care transitions of cardiac surgery patients going home; highlight differences among clinician and patient perceptions of the postsurgical discharge experiences, and ascertain the impact of these transitions on patient recovery at home.
    METHODS: We conducted a prospective multi-stakeholder study using mixed methods, including general observations, patient shadowing, chart reviews, clinician interviews, and follow-up telephone patient and caregiver surveys/interviews. We followed thematic and content analyses.
    FINDINGS: Participants included 49 patients, 6 caregivers, and 27 clinicians. We identified interdependencies between the predischarge preparation, discharge education, and postdischarge follow-up care phases that must be coordinated for effective discharge care transitions. We identified several factors that could lead to fragmented discharges, including limited preoperative preparation, ill-defined discharge education, and postoperative plans. To address these, clinicians often performed behind-the-scenes work, including offering informal preoperative preparation, tailoring discharge education, and personalizing postdischarge follow-up plans. As a result, majority of patients reported high satisfaction with care transitions and their positive impact on their home recovery.
    DISCUSSION AND CONCLUSIONS: Articulation work by clinicians (ie, behind the scenes work) is critical for ensuring safety, care continuity, and overall patient experience during care transitions. We discuss key evidence-based considerations for re-engineering postsurgical discharge workflows and re-designing discharge interventions.
    Keywords:  cardiac operation; coordination; postoperative; qualitative; readmission; surgeries
    DOI:  https://doi.org/10.1093/jamia/ocac099
  15. J Am Med Dir Assoc. 2022 Jun 14. pii: S1525-8610(22)00404-2. [Epub ahead of print]
    Applying Agile Methodology to Reengineer the Delivery of Person-Centered Care in a Nursing Home: A Case Study.
    Katherine M Abbott, Andrea Hulshult, Karen Eshraghi, Alexandra Heppner, Victoria Crumbie, Allison R Heid, Caroline Madrigal, Abby Spector, Kimberly Van Haitsma.
      Nursing home (NH) providers would benefit from adopting evidence-based measures for gathering and utilizing resident preference information in their daily care activities. However, providers face barriers when implementing assessment tools used to promote person-centered care (PCC). Although Agile methodology is not commonly used in NH settings, this case study shows how it can be used to achieve the goal of delivering preference-based, PCC, within a large NH. We present a road map for breaking down care processes, prioritizing, and implementing iterative plan, do, study, act cycles using Agile methodology to enhance group collaboration on quality improvement cycles, to achieve our goal of providing preference-based PCC. We first determined if care plans reflected each resident's important preferences, developed a method for tracking whether residents attended activities that matched their preferences, and determined if residents were satisfied that their preferences were being met. These efforts had positive effects throughout the NH particularly when COVID-19 limited visitors and significantly modified staff workflow. Specifically, Agile processes helped staff to know how to honor preferences during quarantines which necessitated a shift to individualized (and not group) approaches for meeting preferences for social contact, comfort, and belonging. The ready availability of preference-based reporting was critical to quickly informing new staff on how to meet residents' most important preferences. Based on lessons learned, we describe a developmental approach that other providers can consider for adoption. Implications of this work are discussed in terms of the need for provider training in Agile methodologies to support iterative improvements, the need for policies that reimburse providers for their efforts, and additional research around workflow processes.
    Keywords:  Person-centered care; assessment; preferences for everyday living inventory
    DOI:  https://doi.org/10.1016/j.jamda.2022.05.012
  16. BMJ Open. 2022 Jun 16. 12(6): e058326
    Broadening the diversity of consumers engaged in guidelines: a scoping review.
    Anneliese Synnot, Sophie Hill, Allison Jauré, Bronwen Merner, Kelvin Hill, Peta Bates, Alexandra Liacos, Tari Turner.
       BACKGROUND: Guideline developers are encouraged to engage patients, carers and their representatives ('consumers') from diverse backgrounds in guideline development to produce more widely applicable guidelines. However, consumers from diverse backgrounds are infrequently included in guidelines and there is scant research to support guideline developers to do this.
    OBJECTIVES: To identify principles and approaches to broaden the diversity of consumers engaged in guideline development.
    DESIGN: Scoping review and semi-structured interviews.
    METHODS: We conducted comprehensive searches to March 2020 for studies, reports and guidance documents. Inclusion criteria included the terms 'consumer' (patients, carers and their representatives), 'diversity' (defined using the PROGRESS-PLUS mnemonic) and 'consumer engagement' (the active involvement of consumers at any stage of guideline development). We also conducted four interviews with consumers and guideline developers. We used descriptive synthesis to identify themes, and summarised information about implemented approaches used to broaden diversity of consumers in guidelines.
    RESULTS: From 10 included documents, we identified eight themes. Themes covered general engagement concepts (Respectful partnerships; Recruitment; Expectations, process and review); specific concepts about guideline development group (GDG) engagement (Characteristics of guideline personnel; Consumers' role, characteristics and prominence; Preparing and supporting consumers); and other (non-GDG) approaches (Online methods; Consultations and research-based approaches). The most commonly included PROGRESS-PLUS categories were Disability, Race/culture/ethnicity/language, Place of residence and Other vulnerable (eg, 'disadvantaged groups'). Each theme included the views of both consumers and guideline developers. We found descriptions of 12 implemented engagement approaches to broaden diversity of consumers in guidelines.
    CONCLUSIONS: Relationship-building, mitigating power imbalances and meeting consumers where they are at underpin our findings. Engaging with diverse groups may require greater attention to building formal, respectful partnerships and employing inclusive engagement methods.
    Keywords:  epidemiology; protocols & guidelines; statistics & research methods
    DOI:  https://doi.org/10.1136/bmjopen-2021-058326
  17. Public Health Res Pract. 2022 Jun 15. pii: 3222212. [Epub ahead of print]32(2):
    Establishing an enduring co-production platform in Aboriginal health.
    Sandra Bailey, Deanna Kalucy, Janice Nixon, Anna Williamson, Darryl Wright, Jamie Newman, Martin McNamara, Sumithra Muthayya.
      Co‑production in Aboriginal health research builds on participatory, strength-based approaches where Aboriginal knowledge, expertise and priorities are valued and used to generate evidence to drive improvements in Aboriginal health and healthcare. The Coalition for Research to Improve Aboriginal Health (CRIAH), led by a partnership between the Aboriginal Health & Medical Research Council (AH&MRC), Sax Institute and six Aboriginal Community Controlled Health Services (ACCHSs) in NSW, has a long history of successfully co-producing evidence to guide policy and program planning. Data collected through CRIAH's first project, the Study of Environment on Aboriginal Resilience and Child Health (SEARCH), a cohort of urban Aboriginal children, has been effectively used to improve child health outcomes. An evaluation of CRIAH's co-production model highlighted trusting relationships, sharing of power, valuing Aboriginal knowledge and expertise, respectful communication, strong Aboriginal leadership, and ongoing investment and collaboration as instrumental to the success and longevity of this multidisciplinary partnership. In recent years, CRIAH's co-production platform has responded to emerging areas of need identified by participating ACCHSs. This paper highlights three initiatives driven through the co-production platform: 1) examining how local mental health service systems are working for Aboriginal children and young people and how they can be improved; 2) understanding how the cancer care system is working for older Aboriginal people to develop scalable and sustainable approaches to improving cancer care; and 3) finding effective ways to measure the impact of innovative, Aboriginal-led primary health care programs. These initiatives represent co-produced, fit-for-purpose research aimed at driving tangible improvements in Aboriginal health..
    DOI:  https://doi.org/10.17061/phrp3222212
  18. J Adv Nurs. 2022 Jun 13.
    Interventions improving well-being of adult cancer patients' caregivers: A systematic review.
    Natalia Sak-Dankosky, Paula Sherwood, Katri Vehviläinen-Julkunen, Tarja Kvist.
       AIM: The aim of this study was to determine what kind of psychosocial interventions aimed at improving the well-being of adult cancer patient caregivers were developed, and to describe the methodological characteristics and clinical effectiveness of the interventions which could be included in the nursing care plans.
    DESIGN: Systematic review DATA SOURCES: A systematic search of three databases (PubMed, CINAHL, and PsycINFO) was conducted to identify peer-reviewed papers published between years 2004-2019.
    REVIEW METHODS: The review was guided by the Joanna Briggs Institute manual for systematic reviews. Data were extracted and appraised by three reviewers using standardized checklists. Narrative synthesis was used to analyse the data.
    RESULTS: A total of 37 studies underwent analysis. Most of the studies described psychoeducational interventions, designed for patient-caregiver dyads, delivered face-to-face. There was a great variety in caregiver outcomes and measurement tools used. Even though most studies used a randomized controlled design and standardized intervention protocols, many reported problems with recruitment and attrition. Most studies reported that the intervention improved caregiver outcomes, yet the majority of them failed to report effect sizes.
    CONCLUSION: There are currently a plethora of successful interventions available for cancer patient caregivers which can be included to the nursing care plan. Psychoeducational online interventions which include a social support component may have the best potential in supporting caregivers. It is important to address specific caregiver needs at different cancer stages rather than general needs of caregivers in future interventions.
    IMPACT: This review suggests that despite a large number of different interventions which can be included in the nursing care plan to improve the support offered to caregivers, some issues should be addressed while designing an intervention study. The emphasis should be placed on reporting effect sizes, focusing on specific caregiver needs and improving recruitment, retention strategies and sustainability of caregiver interventions.
    Keywords:  behavioural; cancer; cancer caregiving; caregiver outcomes; caregivers; intervention; literature review; nursing; systematic review; well-being
    DOI:  https://doi.org/10.1111/jan.15320
  19. Digit Health. 2022 Jan-Dec;8:8 20552076221104669
    Healthcare in the hand: Patients' use of handheld technology in video consultations with their general practitioner.
    Carole Jepsen, Elle Christine Lüchau, Elisabeth Assing Hvidt, Anette Grønning.
       Objective: To analyse how the patient's use of handheld technology in video consultations with their general practitioner affects communication and the possibilities for the delivery of quality healthcare. Focusing on the visually communicated aspects of the video consultation, we present three episodes from our recordings of eight video consultations between Danish general practitioners and patients.
    Methods: Using a multimodal social semiotic framework to conduct a micro-level analysis, we present episodes from our data in which the hardware's affordance of mobility gave rise to salient events in the interactions of patients who used handheld devices to carry out their video consultations.
    Results: Patients' use of technology plays a significant role in the interactions between general practitioner and patient and is thus an important factor to consider in how practice is shaped when using handheld video consultation technology.
    Conclusions: Our findings demonstrate that the mobility of handheld devices (smartphone, tablet) can be used to augment sensing and embodiment and enhance the delivery of healthcare in video consultations. However, mobility may also disrupt the interaction. As a result, possibilities for the delivery of quality healthcare lie quite literally in the patients' hands.
    Keywords:  Video consultations; communication; general practice; healthcare delivery; mobility; multimodal social semiotics; technology; telemedicine
    DOI:  https://doi.org/10.1177/20552076221104669
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