Patient perspectives of recovery from myalgic encephalomyelitis/chronic fatigue syndrome: An interpretive description study.

AIMS AND OBJECTIVES: Myalgic encephalomyelitis (ME), also called chronic fatigue syndrome (CFS), is characterised by persistent fatigue, postexertional malaise, and cognitive dysfunction. It is a complex, long-term, and debilitating illness without widely effective treatments. This study describes the treatment choices and experiences of ME/CFS patients who have experienced variable levels of recovery. METHOD: Interpretive description study consisting of semi-structured qualitative interviews with 33 people who met the US Centers for Disease Control (2015) diagnostic criteria for ME/CFS and report recovery or symptom improvement. RESULTS: Twenty-six participants endorsed partial recovery, and seven reported full recovery from ME/CFS. Participants reported expending significant time and energy to identify, implement, and adapt therapeutic interventions, often without the guidance of a medical practitioner. They formulated individualised treatment plans reflecting their understanding of their illness and personal resources. Most fully recovered participants attributed their success to mind-body approaches. CONCLUSION: Patients with ME/CFS describe independently constructing and managing treatment plans, due to a lack of health system support. Stigmatised and dismissive responses from clinicians precipitated disengagement from the medical system and prompted use of other forms of treatment.

How do perceptions of Covid-19 risk impact pregnancy-related health decisions? A convergent parallel mixed-methods study protocol.

INTRODUCTION: Pregnant people have a higher risk of severe COVID-19 disease. They have been disproportionately impacted by COVID-19 infection control policies, which exacerbated conditions resulting in intimate partner violence, healthcare access, and mental health distress. This project examines the impact of accumulated individual health decisions and describes how perinatal care and health outcomes changed during the COVID-19 pandemic. OBJECTIVES: Quantitative strand: Describe differences between 2019, 2021, and 2022 birth groups related to maternal vaccination, perinatal care, and mental health care. Examine the differential impacts on racialized and low-income pregnant people.Qualitative strand: Understand how pregnant people's perceptions of COVID-19 risk influenced their decision-making about vaccination, perinatal care, social support, and mental health. METHODS AND ANALYSIS: This is a Canadian convergent parallel mixed-methods study. The quantitative strand uses a retrospective cohort design to assess birth group differences in rates of Tdap and COVID-19 vaccination, gestational diabetes screening, length of post-partum hospital stay, and onset of depression, anxiety, and adjustment disorder, using administrative data from ICES, formerly the Institute for Clinical Evaluative Sciences (Ontario) and PopulationData BC (PopData) (British Columbia). Differences by socioeconomic and ethnocultural status will also be examined. The qualitative strand employs qualitative description to interview people who gave birth between May 2020- December 2021 about their COVID-19 risk perception and health decision-making process. Data integration will occur during design and interpretation. ETHICS AND DISSEMINATION: This study received ethical approval from McMaster University and the University of British Columbia. Findings will be disseminated via manuscripts, presentations, and patient-facing infographics. TRIAL REGISTRATION: Registration: Clinicaltrials.gov registration number: NCT05663762.

Optimising the educational value of indirect patient care.

INTRODUCTION: Indirect patient care activities (IPCA) such as documentation, reviewing investigations and filling out forms require an increasing amount of physician time. While an essential part of patient care, rising rates of IPCA work correspond with increases in physician burnout and job dissatisfaction. It is not known how best to prepare residents in IPCA-heavy specialties (e.g. family medicine) for this aspect of their career. This study investigates how educators and residency programmes can optimise IPCA work during residency to best prepare residents for future practice. METHODS: Using Constructivist Grounded Theory, we conducted focus groups and individual interviews with 42 clinicians (19 family medicine residents, 16 family physicians in the first 5 years of practice and 7 family physician educators). All participants were connected to one family medicine residency programme. We analysed interview data iteratively, using a staged approach to constant comparative analysis. RESULTS: While residents, early career physicians and educators perceived the educational value of IPCAs differently, they all reported IPCAs as a necessary weight that family physicians carry throughout their career. Some residents described IPCAs as a burden, creating inequities in workload and interfering with other learning and personal opportunities. In contrast, educators conceptualised IPCAs as an opportunity to build and develop the skills required to carry the weight of IPCAs throughout their career. We make specific recommendations for helping residents recognise this educational opportunity, such as clarifying expectations, navigating equity, understanding purpose and maintaining consistency when teaching IPCAs. CONCLUSION: IPCAs are a key competency for many medical residents but require explicit pedagogical attention. If the educational opportunities are not made explicit, residents may miss the opportunity to develop strategies for practice management, professional boundaries, and administrative efficiencies.

Buprenorphine/naloxone access for people with opioid use disorder in correctional facilities: taking steps to support knowledge translation.

People with opioid use disorders are overrepresented in correctional facilities, and are at high risk of opioid overdose. Despite the fact that buprenorphine/naloxone is the first line treatment for people with opioid use disorder, there are often institutional, clinical, and logistical barriers to buprenorphine/naloxone initiation in correctional facilities. Guided by the knowledge-to-action framework, this knowledge translation project focused on synthesizing knowledge and developing a tool for buprenorphine/naloxone initiation that was tailored to correctional facilities, including jails. This information and tool can be used to support buprenorphine/naloxone access for people in correctional facilities, in parallel with other efforts to address barriers to treatment initiation in correctional facilities.

Competing priorities: a qualitative study of how women make and enact decisions about weight gain in pregnancy.

BACKGROUND: Despite ample clinical evidence that gaining excess weight in pregnancy results in negative health outcomes for women and infants, more than half of women in Western industrialized nations gain in excess of national guidelines. The influence of socio-demographic factors and weight gain is well-established but not causal; the influence of psychological factors may explain some of this variation. METHODS: This is the qualitative portion of an explanatory sequential mixed-methods study designed to identify predictive psychological factors of excess gestational weight gain (QUAN) and then explain the relevance of those factors (qual). For this portion of the study, we used a qualitative descriptive approach to elicit 39 pregnant women's perspectives of gestational weight gain, specifically inquiring about factors determined as relevant to excess gestational weight gain by our previous predictive study. Women were interviewed in the latter half of their third trimester. Data were analyzed using a combination of unconstrained deductive content analysis to describe the findings relevant to the predictive factors and a staged inductive content analytic approach to examine the data without a focus on the predictive factors. RESULTS: Very few participants consistently made deliberate choices relevant to weight gain; most behaviour relevant to weight gain happened with in-the-moment decisions. These in-the-moment decisions were influenced by priorities, hunger, a consideration of the consequence of the decision, and accommodation of pregnancy-related discomfort. They were informed by the foundational information a woman had available to her, including previous experience and interactions with health care providers. The foundational information women used to make these decisions was often incomplete. While women were aware of the guidelines related to gestational weight gain, they consistently mis-applied them due to incorrect understanding of their own BMI. Only one woman was aware that weight gain was linked to maternal and infant health outcomes. CONCLUSIONS: There is an important role for prenatal providers to provide the foundational information to positively influence in-the-moment decisions. Understanding how weight gain guidelines apply to one's own pre-pregnancy BMI and comprehending the well-established link between gestational weight gain and health outcomes may help women prioritize healthy weight gain amongst many competing factors.

Expanding the 3 Wishes Project for compassionate end-of-life care: a qualitative evaluation of local adaptations.

BACKGROUND: The 3 Wishes Project (3WP) is an end-of-life program that honors the dignity of dying patients by fostering meaningful connections among patients, families, and clinicians. Since 2013, it has become embedded in the culture of end-of-life care in over 20 ICUs across North America. The purpose of the current study is to describe the variation in implementation of 3WP across sites, in order to ascertain which factors facilitated multicenter implementation, which factors remain consistent across sites, and which may be adapted to suit local needs. METHODS: Using the methodology of qualitative description, we collected interview and focus group data from 85 clinicians who participated in the successful initiation and sustainment of 3WP in 9 ICUs. We describe the transition between different models of 3WP implementation, from core clinical program to the incorporation of various research activities. We describe various sources of financial and in-kind resources accessed to support the program. RESULTS: Beyond sharing a common goal of improving end-of-life care, sites varied considerably in organizational context, staff complement, and resources. Despite these differences, the program was successfully implemented at each site and eventually evolved from a clinical or research intervention to a general approach to end-of-life care. Key to this success was flexibility and the empowerment of frontline staff to tailor the program to address identified needs with available resources. This adaptability was fueled by cross-pollination of ideas within and outside of each site, resulting in the establishment of a network of like-minded individuals with a shared purpose. CONCLUSIONS: The successful initiation and sustainment of 3WP relied on local adaptations to suit organizational needs and resources. The semi-structured nature of the program facilitated these adaptations, encouraged creative and important ways of relating within local clinical cultures, and reinforced the main tenet of the program: meaningful human connection at the end of life. Local adaptations also encouraged a team approach to care, supplementing the typical patient-clinician dyad by explicitly empowering the healthcare team to collectively recognize and respond to the needs of dying patients, families, and each other. TRIAL REGISTRATION: NCT04147169 , retrospectively registered with clinicaltrials.gov on October 31, 2019.

Building organizational compassion among teams delivering end-of-life care in the intensive care unit: The 3 Wishes Project.

BACKGROUND: The 3 Wishes Project is a semistructured program that improves the quality of care for patients dying in the intensive care unit by eliciting and implementing wishes. This simple intervention honors the legacy of patients and eases family grief, forging human connections between family members and clinicians. AIM: To examine how the 3 Wishes Project enables collective patterns of compassion between patients, families, clinicians, and managerial leaders in the intensive care unit. DESIGN: Using a qualitative descriptive approach, interviews and focus groups were used to collect data from family members of dying patients, clinicians, and institutional leaders. Unconstrained directed qualitative content analysis was performed using Organizational Compassion as the analytic framework. SETTING/PARTICIPANTS: Four North American intensive care units, participants were 74 family members of dying patients, 72 frontline clinicians, and 20 managerial leaders. RESULTS: The policies and processes of the 3 Wishes Project exemplify organizational compassion by supporting individuals in the intensive care unit to collectively notice, feel, and respond to suffering. As an intervention that enables and empowers clinicians to engage in acts of kindness to enhance end-of-life care, the 3 Wishes Project is particularly well situated to encourage collective responses to suffering and promote compassion between patients, family members, and clinicians. CONCLUSIONS: Examining the 3 Wishes Project through the lens of organizational compassion reveals the potential of this program to cultivate the capacity for people to collectively notice, feel, and respond to suffering. Our data document multidirectional demonstrations of compassion between clinicians and family members, forging the type of human connections that may foster resilience.

Keepsakes at the End of Life.

CONTEXT: Keepsakes are a relatively unexplored form of bereavement support that is frequently provided as part of the 3 Wishes Project (3WP). The 3WP is a palliative care intervention in which individualized wishes are implemented in the adult intensive care unit for dying patients and their families. OBJECTIVES: We aimed to characterize and enumerate the keepsakes that were created as part of the 3WP and to understand their value from the perspective of bereaved family members. METHODS: We performed a secondary analysis of family interviews during a multicenter study on the 3WP and characterized all wishes that involved keepsakes. Sixty interviews with family members regarding the 3WP were reanalyzed using qualitative analysis to identify substantive themes related to keepsakes. RESULTS: Of 730 patients, 345 (47%) received keepsakes as part of their participation in 3WP. Most keepsakes were either tangible items that served as reminders of the patient's presence (thumbprints and locks of hair) or technology-assisted items (photographs and word clouds). The median cost per keepsake wish was $8.50 (interquartile range $2.00-$25.00). Qualitative analysis revealed two major themes: keepsakes are tangible items that are highly valued by family members; and the creation of the keepsake with clinical staff is valued and viewed as a gesture of compassion. CONCLUSION: Keepsakes are common wishes that clinicians in the intensive care unit are able to provide and sometimes cocreate with families when patients are dying. Both the offering to create the keepsake and receipt of the final product are perceived by family members as helpful.

Compassionate End-of-Life Care: Mixed-Methods Multisite Evaluation of the 3 Wishes Project.

Background: The 3 Wishes Project (3WP) is an end-of-life program that aims to honor the dignity of dying patients by creating meaningful patient- and family-centered memories while promoting humanistic interprofessional care. Objective: To determine whether this palliative intervention could be successfully implemented-defined as demonstrating value, transferability, affordability, and sustainability-beyond the intensive care unit in which it was created. Design: Mixed-methods formative program evaluation. (ClinicalTrials.gov: NCT04147169). Setting: 4 North American intensive care units. Participants: Dying patients, their families, clinicians, hospital managers, and administrators. Intervention: Wishes from dying patients, family members, and clinicians were elicited and implemented. Measurements: Patient characteristics and processes of care; the number, type, and cost of each wish; and semistructured interviews and focus groups with family members, clinicians, and managers. Results: A total of 730 patients were enrolled, and 3407 wishes were elicited. Qualitative data were gathered from 75 family members, 72 clinicians, and 20 managers or hospital administrators. Value included intentional comforting of families as they honored the lives and legacies of their loved ones while inspiring compassionate clinical care. Factors promoting transferability included family appreciation and a collaborative intensive care unit culture committed to dignity-conserving end-of-life care. Staff participation evolved from passive support to professional agency. Program initiation required minimal investment for reusable materials; thereafter, the mean cost was $5.19 (SD, $17.14) per wish. Sustainability was demonstrated by the continuation of 3WP at each site after study completion. Limitation: This descriptive formative evaluation describes tertiary care center-specific experiences rather than aiming for generalizability to all jurisdictions. Conclusion: The 3WP is a transferrable, affordable, and sustainable program that provides value to dying patients, their families, clinicians, and institutions. Primary Funding Source: Greenwall Foundation.