A frequently used feature of electronic patient portals is the viewing of test results. Research on patient portals is abundant and offers evidence to help portal implementers make policy and ...practice decisions. In contrast, no comparable comprehensive summary of research addresses the direct release of and patient access to test results. This scoping review aims to analyze and synthesize published research focused on patient and health care provider perspectives on the direct release of laboratory, imaging, and radiology results to patients via web portals. PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines were followed. Searches were conducted in CINAHL, MEDLINE, and other databases. Citations were screened in Covidence using the inclusion and exclusion criteria. Primary studies that focused on patient and health care provider perspectives on patient access to laboratory and imaging results via web portals were included. An updated search was conducted up to August 2023. Our review included 27 articles—20 examining patient views, 3 examining provider views, and 4 examining both patient and provider views. Data extraction and inductive data analysis were informed by sensitizing concepts from sociomaterial perspectives, and 15 themes were generated. Patient perspectives (24 papers) were synthesized using nine themes: (1) patterns of use and patient characteristics; (2) emotional response when viewing the results and uncertainty about their implications; (3) understanding test results; (4) preferences for mode and timing of result release; (5). information seeking and patients’ actions motivated by viewing results via a portal; (6) contemplating changes in behavior and managing own health; (7) benefits of accessing test results via a portal; (8) limitations of accessing test results via a portal; and (9) suggestions for portal improvement. Health care provider perspectives (7 papers) were synthetized into six themes: (1) providers’ view of benefits of patient access to results via the portal; (2) effects on health care provider workload; (3) concerns about patient anxiety; (4) timing of result release into the patient portal; (5) the method of result release into the patient portal: manual versus automatic release; and (6) the effects of hospital health information technology system on patient quality outcomes. The timing of the release of test results emerged as a particularly important topic. In some countries, the policy context may motivate immediate release of most tests directly into patient portals. However, our findings aim to make policy makers, health administrators, and other stakeholders aware of factors to consider when making decisions about the timing of result release. This review is sensitive to the characteristics of patient populations and portal technology and can inform result release framework policies. The findings are timely, as patient portals have become more common internationally.
Medical anthropology has existed since the early 1960s, and the encounters of ethnography in health research are recent. We will trace key historical markers and highlight several ethnographic ...studies in health research in this article. In particular, we are interested how aspects of classic ethnographic work have been taken up, and how the use has changed over time, as ethnographies, such as focused ethnographies and other forms of ethnography, have developed in health research. Understandings of culture have shifted and led to redefinitions of culture, and some key elements of ethnographic research have been lost. Ethnographies conducted in health research often do not focus on culture from a broader perspective; instead, the focus is on single health-related issues. Health researchers appear to spend less time in the field, time spent in the field is regarded as less important, and the importance of the context of field notes is underestimated.
Neonatal Abstinence Syndrome (NAS), a problem common in newborns exposed to substances in-utero, is an emerging health concern. In traditional models of care, infants with NAS are routinely separated ...from their mothers and admitted to the Neonatal Intensive Care Unit (NICU) with long, expensive length of stay (LOS). Research shows a rooming-in approach (keeping mothers and infants together in hospital) with referral support is a safe and effective model of care in managing NAS. The model's key components are facilitating 24-h care by mothers on post-partum or pediatric units with support for breastfeeding, transition home, and access to Opioid Dependency Programs (ODP). This study will implement the rooming-in approach at eight hospitals across one Canadian Province; support practice and culture shift; identify and test the essential elements for effective implementation; and assess the implementation's impact/outcomes.
A stepped wedge cluster randomized trial will be used to evaluate the implementation of an evidence-based rooming-in approach in the postpartum period for infants born to mothers who report opioid use during pregnancy. Baseline data will be collected and compared to post-implementation data. Six-month assessment of maternal and child health and an economic evaluation of cost savings will be conducted. Additionally, barriers and facilitators of the rooming-in model of care within the unique context of each site and across sites will be explored pre-, during, and post-implementation using theory-informed surveys, interviews, and focus groups with care teams and parents. A formative evaluation will examine the complex contextual factors and conditions that influence readiness and sustainability and inform the design of tailored interventions to facilitate capacity building for effective implementation.
The primary expected outcome is reduced NICU LOS. Secondary expected outcomes include decreased rates of pharmacological management of NAS and child apprehension, increased maternal ODP participation, and improved 6-month outcomes for mothers and infants. Moreover, the NASCENT program will generate the detailed, multi-site evidence needed to accelerate the uptake, scale, and spread of this evidence-based intervention throughout Alberta, leading to more appropriate and effective care and use of healthcare resources.
ClinicalTrials.gov, NCT0522662. Registered February 4
, 2022.
Composing Lives in Transition: A Narrative Inquiry into the Experiences of Early School Leavers is structured around ten narrative accounts, each one offering glimpses into the lives of early school ...leavers from different backgrounds. Framed by the puzzling question of why someone would want to leave school early, the authors worked alongside youths from culturally and socially diverse backgrounds in order to understand their experiences and motivations in more depth. In doing so, however, the research team learnt that the stories are also as much about how early school leaving shaped their lives after they left education. By looking across the accounts provided in the book, paying particular attention to place, temporality and personal and social dimensions, the authors were able to identify resonant threads that enabled them to reframe a narrative reconceptualization of the phenomenon of early school leaving.
Although it is well established that family-centered education is critical to managing childhood asthma, the information needs of parents of children with asthma are not being met through current ...educational approaches. Patient-driven educational materials that leverage the power of the storytelling and the arts show promise in communicating health information and assisting in illness self-management. However, such arts-based knowledge translation approaches are in their infancy, and little is known about how to develop such tools for parents. This paper reports on the development of "My Asthma Diary" - an innovative knowledge translation tool based on rigorous research evidence and tailored to parents' asthma-related information needs.
We used a multi-stage process to develop four eBook prototypes of "My Asthma Diary." We conducted formative research on parents' information needs and identified high quality research evidence on childhood asthma, and used these data to inform the development of the asthma eBooks. We established interdisciplinary consulting teams with health researchers, practitioners, and artists to help iteratively create the knowledge translation tools.
We describe the iterative, transdisciplinary process of developing asthma eBooks which incorporates: (I) parents' preferences and information needs on childhood asthma, (II) quality evidence on childhood asthma and its management, and (III) the engaging and informative powers of storytelling and visual art as methods to communicate complex health information to parents. We identified four dominant methodological and procedural challenges encountered during this process: (I) working within an inter-disciplinary team, (II) quantity and ordering of information, (III) creating a composite narrative, and (IV) balancing actual and ideal management scenarios.
We describe a replicable and rigorous multi-staged approach to developing a patient-driven, creative knowledge translation tool, which can be adapted for use with different populations and contexts. We identified specific procedural and methodological challenges that others conducting comparable work should consider, particularly as creative, patient-driven knowledge translation strategies continue to emerge across health disciplines.
This paper is an examination of the methodological and theoretical perspectives of a study with an inquiry focus on the experiences and perspectives of staff who worked at an injectable opiate ...assisted (iOAT) clinic. Twenty-two staff members, including nurses, social workers, and peer support workers, were interviewed. The goal of the study was to uncover how the clinic staff provided care to the clients who attend the clinic, their perspectives on how the clinic program impacted both them and their clients, and their experiences with the program itself. This interpretive descriptive study was underpinned by critical social theory. Thematic analysis was undertaken to identify recurring, converging, and contradictory patterns of interaction, key concepts and emerging themes. In this paper we examine and discuss how the relationship between critical social theory and interpretive description enhanced the study. Examples from the study are presented to provide insight into the relationship.
HIV remains a statistically significant issue for women of childbearing age in Ghana. Nurses and midwives form the backbone of care providers for the prevention of mother‐to‐child transmission ...programmes. However, nurses and midwives receive little support to provide the emotional aspects of HIV/AIDS care.
Aim
Our aim was to build an understanding of how midwives currently embrace their experience of hope and hoping to support mothers living with HIV.
Design
This is narrative inquiry study.
Methods
We engaged in two to three conversations with five midwives in rural settings in Ghana to understand their experiences of hope and hoping in their interactions with mothers living with HIV. Using the narrative inquiry common places of temporality, the social and personal, and space/place, we wrote narrative accounts for each participant and then searched for resonances across the narrative accounts.
Results
We highlight three emerging narrative threads that resonated across narrative accounts. The three emerging narrative threads were (1) sustaining hope by drawing on life experiences across time and place; (2) hope is sustained through a focus on relational engagement with mothers; (3) midwives embrace the possibility to learn more about hope‐focused practices.
Conclusion
The midwives began, although tentatively, to shine light on the things and events that diminished their abilities to maintain a hopeful perspective. At the same time, they became more comfortable and familiar with the notion of making hope visible and accessible in their experiences.
Impact
Since the midwives welcomed additional support to cope with the challenges they were experiencing, we imagine one day being able to make sense of how nurses and midwives engage with a narrative pedagogy of hope. Including hope‐focused practices in nursing and midwifery preservice and in‐service opportunities is important.
Patient or Public Contribution
There was no direct patient or public involvement in this study.
Narrative inquiry is both phenomenon and methodology for understanding experience. In this article, we further develop our understandings of narrative inquiry as a practice of social justice. In ...particular, we explore ways in which social justice issues can be re-framed and re-imagined, with attention to consequent action. Drawing on work alongside Kevlar, a youth who left school early, we explore our understandings. Being grounded in pragmatism and emphasizing relational understanding of experience situate narrative inquiry and call us to think narratively with stories. This allows for movement away from dominant narratives and toward openings to imagine otherwise in dynamic and interactive ways.
With the current proliferation of clinical information technologies internationally, patient portals are increasingly being adopted in health care. Research, conducted mostly in the United States, ...shows that oncology patients have a keen interest in portals to gain access to and track comprehensive personal health information. In Canada, patient portals are relatively new and research into their use and effects is currently emerging. There is a need to understand oncology patients' experiences of using eHealth tools and to ground these experiences in local sociopolitical contexts of technology implementation, while seeking to devise strategies to enhance portal benefits.
The purpose of this study was to explore the experiences of oncology patients and their family caregivers when using electronic patient portals to support their health care needs. We focused on how Alberta's unique, 2-portal context shapes experiences of early portal adopters and nonadopters, in anticipation of a province-wide rollout of a clinical information system in oncology facilities.
This qualitative descriptive study employed individual semistructured interviews and demographic surveys with 11 participants. Interviews were audio-recorded and transcribed verbatim. Data were analyzed thematically. The study was approved by the University of Alberta Human Research Ethics Board.
Participants currently living with nonactive cancer discussed an online patient portal as one among many tools (including the internet, phone, videoconferencing, print-out reports) available to make sense of their diagnosis and treatment, maintain connections with health care providers, and engage with information. In the Fall of 2020, most participants had access to 1 of 2 of Alberta's patient portals and identified ways in which this portal was supportive (or not) of their ongoing health care needs. Four major themes, reflecting the participants' broader concerns within which the portal use was occurring, were generated from the data: (1) experiencing doubt and the desire for transparency; (2) seeking to become an informed and active member of the health care team; (3) encountering complexity; and (4) emphasizing the importance of the patient-provider relationship.
Although people diagnosed with cancer and their family caregivers considered an online patient portal as beneficial, they identified several areas that limit how portals support their oncology care. Providers of health care portals are invited to recognize these limitations and work toward addressing them.
Professional identity-making is a complex life-making endeavor that is shaped by both the personal and professional knowledge landscapes in which people live and work. Using narrative inquiry, four ...midwives who had worked in diverse contexts in Ghana were purposively selected. We highlight how midwives’ experiences across time, place, and in diverse contexts shape their professional identity-making. Three main life experiences that shape professional identity-making were discovered: 1. Childhood experiences, 2. Education experiences, and 3. Professional work experiences. Midwifery education should prepare students to attend to this complex and ongoing identity development, in order to enhance midwifery practice.
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