What was the impact of the first wave of COVID-19 on the delivery of care to children and adults with congenital heart disease? A qualitative study using online forums
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Abstract
Globally, healthcare systems have been stretched to the limit by the COVID-19 pandemic. Significant changes have had to be made to the way in which non-COVID-19-related care has been delivered. Our objective was to understand, from the perspective of patients with a chronic, life-long condition (congenital heart disease, CHD) and their parents/carers, the impact of COVID-19 on the delivery of care, how changes were communicated and whether healthcare providers should do anything differently in a subsequent wave of COVID-19 infections.
Design and setting
Qualitative study involving a series of asynchronous discussion forums set up and moderated by three patient charities via their Facebook pages.
Participants
Patients with CHD and parents/carers of patients with CHD.
Main outcome measures
Qualitative responses to questions posted on the discussion forums.
Results
The forums ran over a 6-week period and involved 109 participants. Following thematic analysis, we identified three themes and 10 subthemes related to individual condition-related factors, patient-related factors and health professional/centre factors that may have influenced how patients and parents/carers experienced changes to service delivery as a result of COVID-19. Specifically, respondents reported high levels of disruption to the delivery of care, inconsistent advice and messaging and variable communication from health professionals, with examples of both excellent and very poor experiences of care reported. Uncertainty about follow-up and factors related to the complexity and stability of their condition contributed to anxiety and stress.
Conclusions
The importance of clear, consistent communication cannot be over-estimated. Our findings, while collected in relation to patients with CHD, are not necessarily specific to this population and we believe that they reflect the experiences of many thousands of people with life-long conditions in the UK. Recommendations related to communication, service delivery and support during the pandemic may improve patients’ experience of care and, potentially, their outcomes.
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SciScore for 10.1101/2021.01.13.21249447: (What is this?)
Please note, not all rigor criteria are appropriate for all manuscripts.
Table 1: Rigor
Institutional Review Board Statement IRB: Ethical considerations: The Research Ethics Committee confirmed that ethical approval was not required because the forums were managed by the charities. Randomization not detected. Blinding not detected. Power Analysis not detected. Sex as a biological variable not detected. Table 2: Resources
No key resources detected.
Results from OddPub: We did not detect open data. We also did not detect open code. Researchers are encouraged to share open data when possible (see Nature blog).
Results from LimitationRecognizer: We detected the following sentences addressing limitations in the study:Limitations: Although we specifically chose a method of data collection to increase …
SciScore for 10.1101/2021.01.13.21249447: (What is this?)
Please note, not all rigor criteria are appropriate for all manuscripts.
Table 1: Rigor
Institutional Review Board Statement IRB: Ethical considerations: The Research Ethics Committee confirmed that ethical approval was not required because the forums were managed by the charities. Randomization not detected. Blinding not detected. Power Analysis not detected. Sex as a biological variable not detected. Table 2: Resources
No key resources detected.
Results from OddPub: We did not detect open data. We also did not detect open code. Researchers are encouraged to share open data when possible (see Nature blog).
Results from LimitationRecognizer: We detected the following sentences addressing limitations in the study:Limitations: Although we specifically chose a method of data collection to increase the accessibility of the research to potential participants and did achieve good diversity in terms of where participants lived and their specialist centre, participants did not reflect a broad range of ethnic groups or gender. This may be of particular salience in light of the growing body of evidence that people from black Asian and minority ethnic (BAME) groups have been disproportionately affected by COVID-19, including experiencing higher rates of mortality due to COVID-19.(12) Even if this is not shown to be the case for patients with CHD, such knowledge is likely to contribute to higher levels of anxiety in BAME individuals and may drive greater social isolation and disengagement with health care, which is an important consideration for specialist centres and the wider health service. The lack of participation from BAME groups reflects a recognised problem that they are less likely to engage with, and participate in, research than their white British counterparts (13) and speaks to the need for targeted strategies to involve, recruit and retain BAME individuals in research projects. Charities (not limited to those who moderated the discussion forums in this research) were identified as having a vital role in providing support and information to patients and families during the first wave of COVID-19 and at times were the only perceived source of information and support. This also highli...
Results from TrialIdentifier: No clinical trial numbers were referenced.
Results from Barzooka: We did not find any issues relating to the usage of bar graphs.
Results from JetFighter: We did not find any issues relating to colormaps.
Results from rtransparent:- Thank you for including a conflict of interest statement. Authors are encouraged to include this statement when submitting to a journal.
- Thank you for including a funding statement. Authors are encouraged to include this statement when submitting to a journal.
- No protocol registration statement was detected.
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