"We're drowning and we're alone": a qualitative study of the lived experience of people experiencing persistent post-COVID-19 symptoms.

BACKGROUND: The "long tail" of the COVID-19 pandemic will be reflected in disabling symptoms that persist, fluctuate or recur for extended periods for an estimated 20%-30% of those who had a SARS-CoV-2 infection; development of effective interventions to address these symptoms must account for the realities faced by these patients. We sought to describe the lived experience of patients living with persistent post-COVID-19 symptoms. METHODS: We conducted a qualitative study, using interpretive description, of the lived experiences of adults experiencing persistent post-COVID-19 symptoms. We collected data from in-depth, semistructured virtual focus groups in February and March 2022. We used thematic analysis to analyze the data and met with several participants twice for respondent validation. RESULTS: The study included 41 participants (28 females) from across Canada with a mean age of 47.9 years and mean time since initial SARS-CoV-2 infection of 15.8 months. Four overarching themes were identified: the unique burdens of living with persistent post-COVID-19 symptoms; the complex nature of patient work in managing symptoms and seeking treatment during recovery; erosion of trust in the health care system; and the process of adaptation, which included taking charge and transformed self-identity. INTERPRETATION: Living with persistent post-COVID-19 symptoms within a health care system ill-equipped to provide needed resources profoundly challenges the ability of survivors to restore their well-being. Whereas policy and practice increasingly emphasize the importance of self-management within the context of post-COVID-19 symptoms, new investments that enhance services and support patient capacity are required to promote better outcomes for patients, the health care system and society.

Top 10 research priorities for people with obstructive sleep apnoea, families and clinicians: James Lind Alliance Priority Setting Partnership.

Obstructive sleep apnoea (OSA) is associated with significant comorbidity, preventable accidents and reduced quality of life. Little is known about the research priorities of patients with OSA, family members and clinicians. A James Lind Alliance research priority setting partnership was conducted. An initial survey (690 respondents who generated 1110 questions), a prioritisation survey (250 respondents), and a final workshop were used to identify the top 10 research priorities. Consensus was achieved on the top-ranked research priorities. Our results will inform the efforts of funders, researchers and policy-makers to align directly with stakeholder priorities related to OSA.

Palliative care as an emerging role for respiratory health professionals: Findings from a cross-sectional, exploratory Canadian survey.

INTRODUCTION: Respiratory Health Professionals (RHPs) with specialty training in the management of asthma and COPD, often care for patients with advanced respiratory disease, who have less access to palliative care than patients with similar disease burden. The aims of this study were to: (i) explore the current and desired roles of RHPs in terms of palliative care and (ii) examine barriers to discussions with patients about palliative care. METHODS: An online survey addressing the aims of this study was developed and pilot tested. The survey was distributed nationally using the database of the Lung Association's RESPTREC respiratory educator training program. Descriptive statistics were performed. RESULTS: A total of 123 completed surveys were returned, with respiratory therapists comprising the largest group of respondents. The majority indicated that end-of-life care was less than optimal for patients with advanced respiratory illnesses and agreed that palliative care should be a role of RHPs. Patient- and family-related barriers to having end-of-life discussions included: difficulty accepting prognosis, limitations and complications, and lack of capacity. For providers, the most important barriers were: lack of training, uncertainty about prognosis, and lack of time. The health care system barriers of concern were increasing demand for palliative care services and limited accessibility of palliative care for those with advanced respiratory diseases and difficulties in accurate prognostication for these conditions. DISCUSSION: Incorporating a more defined role in palliative care was generally seen as a desirable evolution of the RHP role. A number of strategies to mitigate identified barriers to discussions with the patient are described. Better alignment of the services required with the needs of patients with advanced respiratory disease can be addressed in a number of ways. CONCLUSIONS: As RHP roles continue to evolve, consideration should be given to the ways in which RHPs can contribute to improving the quality of care for patients with advanced respiratory disease. Building collaborations with RHPs, palliative care, and other existing health programs can ensure high quality of care. Creating and taking advantage of learning opportunities to build skills and comfort in using a palliative approach will benefit respiratory patients.