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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.
Wray, Jo; Pagel, Christina; Chester, Adrian H; Kennedy, Fiona; Crowe, Sonya.
  • Wray J; Heart and Lung Directorate, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK Jo.Wray@gosh.nhs.uk.
  • Pagel C; Research Department of Children's Cardiovascular Diseases, Institute of Cardiovascular Science, University College London, London, UK.
  • Chester AH; Clinical Operational Research Unit, Department of Mathematics, University College London, London, UK.
  • Kennedy F; Heart Valve Research Group, The Magdi Yacoub Institute, Heart Science Centre, Harefield, UK.
  • Crowe S; Myocardial Function, National Heart and Lung Institute, Imperial College London, London, UK.
BMJ Open ; 11(9): e049006, 2021 09 30.
Article in English | MEDLINE | ID: covidwho-1443595
ABSTRACT

OBJECTIVES:

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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Full text: Available Collection: International databases Database: MEDLINE Main subject: COVID-19 / Heart Defects, Congenital Type of study: Cohort study / Experimental Studies / Prognostic study / Qualitative research Limits: Adult / Child / Humans Language: English Journal: BMJ Open Year: 2021 Document Type: Article Affiliation country: Bmjopen-2021-049006

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Full text: Available Collection: International databases Database: MEDLINE Main subject: COVID-19 / Heart Defects, Congenital Type of study: Cohort study / Experimental Studies / Prognostic study / Qualitative research Limits: Adult / Child / Humans Language: English Journal: BMJ Open Year: 2021 Document Type: Article Affiliation country: Bmjopen-2021-049006