A qualitative study exploring how patient engagement activities were sustained or adapted in Canadian healthcare organizations during the COVID-19 pandemic.

BACKGROUND: The COVID-19 pandemic caused disruptions across healthcare systems globally exposing the precarious state of patient engagement across all levels of healthcare. While evidence is emerging to describe how engagement was affected across various settings, insights about how some organizations at the policy and practice level of healthcare were able to sustain or adapt patient engagement activities is lacking. OBJECTIVE: This paper addresses the following research question: "How were healthcare, government, and patient partner organizations able to sustain or adapt patient engagement activities during the COVID-19 pandemic?" METHODS: A qualitative descriptive study was conducted to understand how patient engagement activities were maintained or adapted in a variety of healthcare, government, and patient partner organizations in Canada throughout the pandemic. This analysis was part of a larger qualitative, multiple case study where one-to-one interviews were conducted with organizational leaders, managers and patient partners. RESULTS: The following themes were identified as key aspects of maintaining or adapting patient engagement activities: 1) having an embedded organizational culture of patient engagement; 2) adapting patient engagement activities to focus on COVID-19 response efforts; 3) having patient partners who exercised leadership and advocacy to support patient care and experiences during the pandemic; and 4) leveraging virtual technology as a communication tool to engage patient partners. CONCLUSION: This paper highlights important insights that may be useful to other health care organizations on how to sustain or adapt patient engagement activities during a healthcare crisis. Having patient engagement embedded within an organization's culture supported by, but not limited to, infrastructure, resources, investments in dedicated staff and patient partner leadership, and communication strategies and tools enabled continued patient engagement activities during the pandemic.

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.

Caring for Older People during and beyond the COVID-19 Pandemic: Experiences of Residential Health Care Workers.

Older people and health care workers in residential care homes are particularly vulnerable to the adverse impacts of the COVID-19 pandemic. As COVID-19 has been spreading around the world for more than two years, the nature of care delivery has been substantially transformed. This study aims at understanding the long-term and ongoing impacts of COVID-19 on the delivery of care in residential care homes. It investigates how the delivery of care has been transformed by the COVID-19 pandemic and how health care workers adapted to these changes from the perspectives of frontline health care workers. Semi-structured interviews were conducted from February to December 2021 with a purposive sample of 30 health care workers from six residential care homes in Hong Kong. Thematic analysis identified three themes, including (1) enhancing infection prevention and control measures; (2) maintaining the psychosocial wellbeing of residents; and (3) developing resilience. Discussions and implications were drawn from these findings.

TOwards enhancing Paediatric Intensive Care for Children with Medical Complexity (ToPIC CMC): a mixed-methods study protocol using Experience-based Co-design.

INTRODUCTION: Advances in medical technology and postoperative care have led to increased survival of children with medical complexity (CMC). Parents of CMC develop substantial caregiver expertise and familiarity with paediatric intensive care unit (PICU) staff and treatment procedures which may give rise to tensions regarding respective roles, caretaking preferences, treatment goals and expected outcomes. A therapeutic alliance built through strong partnerships constitutes the foundation of patient and family-centred care (PFCC), contributing to improvements in experiences and outcomes. Yet acute care settings continue to struggle with integrating PFCC into practice. This study aims to enhance PFCC for CMC in the PICU using an innovative approach to integrated knowledge translation. METHODS: A mixed-method concurrent triangulation design will be used to develop, implement and evaluate PFCC practice changes for CMC in the PICU. Qualitative data will be collected using an Experience-based Co-design (EBCD) approach. Parents, CMC and staff will reflect on their PICU care experiences (stages 1 and 2), identify priorities for improvement (stage 3), devise strategies to implement changes (stage 4), evaluate practice changes and study process, and disseminate findings (stage 5). The quantitative arm will consist of a prepractice and postpractice change evaluation, compared with a control site. Analysis of qualitative and quantitative data will provide insights regarding the impact of PICU practice changes on PFCC. ETHICS AND DISSEMINATION: The McGill University Health Centre Research Ethics Board (Ref. #2019-5021) and the Hospital for Sick Children Research Ethics Board (Ref. #1000063801) approved the study. Knowledge users and researchers will be engaged as partners throughout the study as per our participatory approach. Knowledge products will include a short film featuring themes and video/audio clips from the interviews, recommendations for improvements in care, and presentations for healthcare leaders and clinical teams, in addition to traditional academic outputs such as conference presentations and publications.

A scoping review of patient engagement activities during COVID-19: More consultation, less partnership.

BACKGROUND: The COVID-19 pandemic has had a devastating impact on healthcare systems and care delivery, changing the context for patient and family engagement activities. Given the critical contribution of such activities in achieving health system quality goals, we undertook to address the question: What is known about work that has been done on patient engagement activities during the pandemic? OBJECTIVE: To examine peer-reviewed and grey literature to identify the range of patient engagement activities, broadly defined (inclusive of engagement to support clinical care to partnerships in decision-making), occurring within health systems internationally during the first six months of the COVID-19 pandemic, as well as key barriers and facilitators for sustaining patient engagement activities during the pandemic. METHODS: The following databases were searched: Medline, Embase and LitCOVID; a search for grey literature focused on the websites of professional organizations. Articles were required to be specific to COVID-19, describe patient engagement activities, involve a healthcare organization and be published from March 2020 to September 2020. Data were extracted and managed using Microsoft Excel. A content analysis of findings was conducted. RESULTS: Twenty-nine articles were included. Few examples of more genuine partnership with patients were identified (such as co-design and organizational level decision making); most activities related to clinical level interactions (e.g. virtual consultations, remote appointments, family visits using technology and community outreach). Technology was leveraged in almost all reported studies to interact or connect with patients and families. Five main descriptive categories were identified: (1) Engagement through Virtual Care; (2) Engagement through Other Technology; (3) Engagement for Service Improvements/ Recommendations; (4) Factors Impacting Patient Engagement; and (5) Lessons Learned though Patient Engagement. CONCLUSIONS: Evidence of how healthcare systems and organizations stayed connected to patients and families during the pandemic was identified; the majority of activities involved direct care consultations via technology. Since this review was conducted over the first six months of the pandemic, more work is needed to unpack the spectrum of patient engagement activities, including how they may evolve over time and to explore the barriers and facilitators for sustaining activities during major disruptions like pandemics.

How digital health solutions align with the roles and functions that support hospital to home transitions for older adults: a rapid review study protocol.

INTRODUCTION: Older adults may experience challenges during the hospital to home transitions that could be mitigated by digital health solutions. However, to promote adoption in practice and realise benefits, there is a need to specify how digital health solutions contribute to hospital to home transitions, particularly pertinent in this era of social distancing. This rapid review will: (1) elucidate the various roles and functions that have been developed to support hospital to home transitions of care, (2) identify existing digital health solutions that support hospital to home transitions of care, (3) identify gaps and new opportunities where digital health solutions can support these roles and functions and (4) create recommendations that will inform the design and structure of future digital health interventions that support hospital to home transitions for older adults (eg, the pre-trial results of the Digital Bridge intervention; ClinicalTrials.gov Identifier: NCT04287192). METHODS AND ANALYSIS: A two-phase rapid review will be conducted to meet identified aims. In phase 1, a selective literature review will be used to generate a conceptual map of the roles and functions of individuals that support hospital to home transitions for older adults. In phase 2, a search on MEDLINE, EMBASE and CINAHL will identify literature on digital health solutions that support hospital to home transitions. The ways in which digital health solutions can support the roles and functions that facilitate these transitions will then be mapped in the analysis and generation of findings. ETHICS AND DISSEMINATION: This protocol is a review of the literature and does not involve human subjects, and therefore, does not require ethics approval. This review will permit the identification of gaps and new opportunities for digital processes and platforms that enable care transitions and can help inform the design and implementation of future digital health interventions. Review findings will be disseminated through publications and presentations to key stakeholders.