Living with COVID-19 in the community during the first wave of the pandemic: Lessons from patients for healthcare providers and policy makers

This qualitative descriptive study explores patients’ experiences of living with COVID-19, in the community, during the early stages of the pandemic. Between October 2020 and April 2021, fifteen semi-structured, video-recorded interviews were conducted, via Zoom, with participants in five Canadian provinces. Participants self-identified as having had a confirmed or suspected case of COVID-19. The constant comparative method was used to produce a thematic analysis of findings. Key findings include 1) PCR tests were not widely available in Canada, during the first wave, so many participants lacked a confirmed diagnosis and, subsequently, encountered challenges accessing specialist medical care; 2) Rapidly changing protocols around testing also impacted return to work as employers’ requirements were sometimes misaligned with public health guidelines; 3) Participants often found public health measures to be illogical, inconsistent, or sub-optimally implemented, and frequently perceived them as politically motivated rather than evidence-based; 4) some individuals with persistent symptoms had difficulty gaining acknowledgement and support for what is now more widely acknowledged to be long-COVID; and 5) The view that healthcare providers need a more nuanced approach to patients who lack a confirmed diagnosis or present with hard-to-explain symptoms was widely shared. There is the need for greater responsiveness to the lived experiences of patients with COVID-19, especially those with persistent symptoms, in developing clinical pathways and social supports. Experience Framework This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework. (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens

Considerations for Dietary Assessment in the Canadian Partnership for Tomorrow Project

Dietary factors are leading contributors to chronic disease and mortality globally and in Canada (1–3), and have been recognized as modifiable risk factors for certain cancers (4). However, much remains to be learned about how dietary factors interact with other modifiable and nonmodifiable exposures and physiologic variables to influence disease risk in humans (5,6). Information collected from large prospective cohorts plays an important role in furthering our understanding of diet-disease relationships (7,8). To advance knowledge on how to promote health and prevent disease, it is critically important to use robust tools for collecting dietary information from participants in such cohorts (9). This guide is intended to be utilized by researchers designing nutritional epidemiological research and in particular, to guide the implementation of dietary assessment tools within the CPTP cohorts. The aim is to provide guidance on method selection, data collection, and analyses of dietary data, as well as stimulate discussions of harmonization of methods across cohorts to advance the evidence base. Because objective measures such as biomarkers of diet are currently few, burdensome, costly, and limited in the information they provide about the types of foods and beverages people consume (5,6), researchers typically rely upon self-report tools. However, it has long been recognized that self-reported dietary data are affected by error, including systematic error or bias (9,10), leading some commentators to suggest that research should no longer rely on selfreport approaches (11,12). However, much work has been conducted to better understand and address error in self-report dietary intake data (9,10). Such work has informed the development of novel technology-enabled tools to allow collection of the least-biased data possible, as well as the development of rigorous statistical approaches to mitigate the effects of error (13–16). Based on what is known about sources and types of error in data captured using different types of tools, it has been recommended that a combination of tools may be the optimal way forward for cohort studies. Specifically, multiple 24-hour recalls (24HRs), administered in combination with a food frequency questionnaire (FFQ), may allow researchers to leverage the strengths of each instrument (10,14,17). Data from 24HRs provide comprehensive detail on intake and measure consumption with less bias than FFQs. On the other hand, FFQs measure intake over a longer period (e.g. past month or year) (18–20), meaning they are better able to capture intake of foods and beverages that may be consumed more episodically (e.g., whole grains, dark-green vegetables) but that may be important to diet-disease relationships. The availability of weband mobile device-based dietary assessment tools for use in Canada and emerging statistical techniques to analyze the resulting data makes this multiple-tool scenario a realistic consideration for Alberta’s Tomorrow Project (21), other cohorts within the Canadian Partnership for Tomorrow Project (CPTP) (22), and other health-related studies. With comprehensive and standardized measurement of dietary exposures across cohorts, the identification of promising strategies to reduce diet-related disease risk among Canadians can be furthered (9)

The Provision of Assistance Does Not Substantially Impact the Accuracy of 24-Hour Dietary Recalls Completed Using the Automated Self-Administered 24-H Dietary Assessment Tool Among Women With Low Incomes

Background: Evidence is lacking informing the use of the Automated Self-Administered 24-h Dietary Assessment Tool (ASA24) with populations characterized by low income. Objective: This study was conducted among women with low incomes to evaluate the accuracy of ASA24 recalls completed independently and with assistance. Methods: Three hundred and two women, aged ≥18 y and with incomes below the Supplemental Nutrition Assistance Program thresholds, served themselves from a buffet; amounts taken as well as plate waste were unobtrusively weighed to enable calculation of true intake for 3 meals. The following day, women completed ASA24-2016 independently (n = 148) or with assistance from a trained paraprofessional in a small group (n = 154). Regression modeling examined differences by condition in agreement between true and reported foods; energy, nutrient, and food group intakes; and portion sizes. Results: Participants who completed ASA24 independently and those who received assistance reported matches for 71.9% and 73.5% (P = 0.56) of items truly consumed, respectively. Exclusions (consumed but not reported) were highest for lunch (at which participants consumed approximately 2 times the number of distinct foods and beverages compared with breakfast and dinner). Commonly excluded foods were additions to main dishes (e.g., tomatoes in salad). On average, excluded foods contributed 43.6 g (46.2 kcal) and 40.1 g (43.2 kcal) among those in the independent and assisted conditions, respectively. Gaps between true and reported intake were different between conditions for folate and iron. Within conditions, significant gaps were observed for protein, vitamin D, and meat (both conditions); vitamin A, iron, and magnesium (independent); and folate, calcium, and vegetables (assisted). For foods and beverages for which matches were reported, no difference in the gap between true and reported portion sizes was observed by condition (P = 0.22). Conclusions: ASA24 performed relatively well among women with low incomes; however, accuracy was somewhat lower than previously observed among adults with a range of incomes. The provision of assistance did not significantly impact accuracy

Negotiation of collective and individual candidacy for long Covid healthcare in the early phases of the Covid-19 pandemic: Validated, diverted and rejected candidacy

This analysis of people's accounts of establishing their need and experiences of healthcare for long Covid (LC) symptoms draws on interview data from five countries (UK, US, Netherlands, Canada, Australia) during the first ~18 months of the Covid-19 pandemic when LC was an emerging, sometimes contested, condition with scant scientific or lay knowledge to guide patients and professionals in their sense-making of often bewildering constellations of symptoms. We extend the construct of candidacy to explore positive and (more often) negative experiences that patients reported in their quest to understand their symptoms and seek appropriate care. Candidacy usually considers how individuals negotiate healthcare access. We argue a crucial step preceding individual claims to candidacy is recognition of their condition through generation of collective candidacy. “Vanguard patients” collectively identified, named and fought for recognition of long Covid in the context of limited scientific knowledge and no established treatment pathways. This process was technologically accelerated via social media use. Patients commonly experienced “rejected” candidacy (feeling disbelieved, discounted/uncounted and abandoned, and that their suffering was invisible to the medical gaze and society). Patients who felt their candidacy was “validated” had more positive experiences; they appreciated being believed and recognition of their changed lives/bodies and uncertain futures. More positive healthcare encounters were described as a process of “co-experting” through which patient and healthcare professional collaborated in a joint quest towards a pathway to recovery. The findings underpin the importance of believing and learning from patient experience, particularly vanguard patients with new and emerging illnesses

Negotiation of collective and individual candidacy for long Covid healthcare in the early phases of the Covid-19 pandemic: Validated, diverted and rejected candidacy

This analysis of people's accounts of establishing their need and experiences of healthcare for long Covid (LC) symptoms draws on interview data from five countries (UK, US, Netherlands, Canada, Australia) during the first ~18 months of the Covid-19 pandemic when LC was an emerging, sometimes contested, condition with scant scientific or lay knowledge to guide patients and professionals in their sense-making of often bewildering constellations of symptoms. We extend the construct of candidacy to explore positive and (more often) negative experiences that patients reported in their quest to understand their symptoms and seek appropriate care. Candidacy usually considers how individuals negotiate healthcare access. We argue a crucial step preceding individual claims to candidacy is recognition of their condition through generation of collective candidacy. “Vanguard patients” collectively identified, named and fought for recognition of long Covid in the context of limited scientific knowledge and no established treatment pathways. This process was technologically accelerated via social media use. Patients commonly experienced “rejected” candidacy (feeling disbelieved, discounted/uncounted and abandoned, and that their suffering was invisible to the medical gaze and society). Patients who felt their candidacy was “validated” had more positive experiences; they appreciated being believed and recognition of their changed lives/bodies and uncertain futures. More positive healthcare encounters were described as a process of “co-experting” through which patient and healthcare professional collaborated in a joint quest towards a pathway to recovery. The findings underpin the importance of believing and learning from patient experience, particularly vanguard patients with new and emerging illnesses

The use of patient experience data for quality improvement in hospitals: A scoping review

In this paper we identified what was reported in the literature on qualitative and quantitative approaches used to capture and improve patient experiences in a hospital setting. For inclusion, articles were required to describe an embedded strategy for capturing patient experiences that was used to inform quality improvement in a hospital setting. Articles also had to be published in English between January 2004 and December 2020. Six databases (MEDLINE, EMBASE, PsycINFO, CINAHL, Health and Psychosocial Instruments and Cochrane Library) and grey literature (relevant hospital and government websites) were searched. All articles were screened by two reviewers and any disagreements were resolved through consensus. Data were extracted from the included articles using a study-specific form in Microsoft Excel and synthesized using descriptive qualitative and quantitative approaches. Thirty articles were included in this scoping review. Patient experience data were captured through a variety of methods including surveys, focus groups, patient complaints and informal feedback, with the majority using formal, paper-based surveys. A wide range of quality improvement initiatives were implemented as a result of hospitals’ patient experience data, but there was limited contextual information regarding the hospital settings and population characteristics. Initiatives implemented by a dedicated and multidisciplinary quality improvement team (nurses, administrators, physicians, etc.) generally demonstrated positive outcomes. We conclude that more work is needed to better understand how best to capture and use patient experience data for quality improvement, the contexts in which initiatives are successful and how to integrate patients and families in the ongoing implementation and evaluation processes. Experience Framework This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework. (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens

A qualitative study exploring hospital-based team dynamics in discharge planning for patients experiencing delayed care transitions in Ontario, Canada

Abstract Background In attempt to improve continuity of patient care and reduce length of stay, hospitals have placed an increased focus on reducing delayed discharges through discharge planning. Several benefits and challenges to team-based approaches for discharge planning have been identified. Despite this, professional hierarchies and power dynamics are common challenges experienced by healthcare providers who are trying to work as a team when dealing with delayed discharges. The objective of this study was to explore what was working well with formal care team-based discharge processes, as well as challenges experienced, in order to outline how teams can function to better support transitions for patients experiencing a delayed discharge.  Methods We conducted a descriptive qualitative study with hospital-based healthcare providers, managers and organizational leaders who had experience with delayed discharges. Participants were recruited from two diverse health regions in Ontario, Canada. In-depth, semi-structured interviews were conducted in-person, by telephone or teleconference between December 2019 and October 2020. All interviews were recorded and transcribed. A codebook was developed by the research team and applied to all transcripts. Data were analyzed inductively, as well as deductively through directed content analysis. Results We organized our findings into three main categories – (1) collaboration with physicians makes a difference; (2) leadership should meaningfully engage with frontline providers and (3) partnerships across sectors are critical. Regular physician engagement, as equal members of the team, was recommended to improve consistent communication, relationship building between providers, accessibility, and in-person communication. Participants highlighted the need for a dedicated senior leader who ensured members of the team were treated as equals and advocated for the team. Improved partnerships across sectors included the enhanced integration of community-based providers into discharge planning by placing more focus on collaborative practice, combined discharge planning meetings, and having embedded and physically accessible care coordinators in the hospital. Conclusions Team-based approaches for delayed discharge can offer benefits. However, to optimize how teams function in supporting these processes, it is important to consistently collaborate with physicians, ensure senior leadership engage with and seek feedback from frontline providers through co-design, and actively integrate the community sector in discharge planning

Making sense of symptoms, clinicians and systems: a qualitative evaluation of a facilitated support group for patients with medically unexplained symptoms

Abstract Objectives Health services to date have inadequately addressed the physical and mental health needs of patients with medically unexplained symptoms. This qualitative study evaluates a piloted facilitated support group (FSG) developed for patients with medically unexplained symptoms to inform recommendations and resources for this patient population. Methods Using a qualitative descriptive design, we conducted and thematically analyzed semi-structured interviews with participants (n = 8) and facilitators (n = 4) to explore their experiences of the facilitated support group. Common themes that captured strengths and challenges of the facilitated support group were identified. Results The following key themes were identified through analysis of the data: Participants described 1) feeling validated through sharing similar experiences with peers; 2) learning practical symptom management and coping strategies; and 3) gaining new perspectives for navigating conversations with PCPs. Conclusions Our findings show that a facilitated support group may provide additional forms of support and resources for patients with medically unexplained symptoms, filling a gap in currently available clinical care offered by health care professionals. Potential implications: This paper highlights lessons learned that can inform the design and delivery of future supports and resources directed toward optimizing patient care for this underserved patient population. Our findings are relevant to those who are involved in direct patient care or involved in designing and implementing self-management programs

"I think we did the best that we could in the space:" A qualitative study exploring individuals' experiences with three unconventional environments for patients with a delayed hospital discharge.

BackgroundGiven growing hospital capacity pressures, persistent delayed discharges, and ongoing efforts to improve patient flow, the use of unconventional environments (newly created or repurposed areas for patient care) is becoming increasingly common. Despite this, little is known about individuals' experiences in providing or receiving care in these environments.ObjectivesThe objectives of this study were to: (1) describe the characteristics of three unconventional environments used to care for patients experiencing a delayed discharge, and (2) explore individuals' experiences with the three unconventional environments.MethodsThis was a multi-method qualitative study of three unconventional environments in Ontario, Canada. Data were collected through semi-structured interviews and observations. Participants included patients, caregivers, healthcare providers, and clinical managers who had experience with delayed discharges. In-person observations of two environments were conducted. Interviews were transcribed and notes from the observations were recorded. Data were coded and analyzed thematically.ResultsTwenty-nine individuals participated. Three themes were identified for unconventional environments: (1) implications on the physical safety of patients; (2) implications on staffing models and continuity of care; and, (3) implications on team interactions and patient care. Participants discussed how the physical set-up of some unconventional spaces was not conducive to patient needs, especially those with cognitive impairment. Limited space made it difficult to maintain privacy and develop social relationships. However, the close proximity of team members allowed for more focused collaborations regarding patient care and contributed to staff fulfilment. A smaller, consistent care team and access to onsite physicians seemed to foster improved continuity of care.ConclusionsThere is potential to learn from multi-stakeholder perspectives in unconventional environments to improve experiences and optimize patient care. Key considerations include keeping hallways and patient rooms clear, having communal spaces for activities and socialization, co-locating team members to improve interactions and access to resources, and ensuring a consistent care team

Characteristics of the three unique environmentsⁱ.

Characteristics of the three unique environmentsi.</p