An international survey of allied health & nursing professionals during the COVID-19 pandemic: Perspectives on facilitators of & barriers to care.

BACKGROUND: Allied health and nursing professionals (AHNP) are integral members of transplant teams. During the COVID-19 pandemic, they were required to adapt to changes in their clinical practices. The goal of the present study was to describe AHNP perceptions concerning the impact of the pandemic on their roles, practice, and resource allocation. METHODS: An online survey was distributed globally via email by the International Pediatric Transplant Association to AHNP at transplant centers from September to December 2020. Responses to open-ended questions were collected using an electronic database. Using a thematic analysis approach, coding was conducted by three independent coders who identified patterns in responses, and discrepancies were resolved through discussion. RESULTS: The majority of respondents (n = 119) were from North America (78%), with many other countries represented (e.g., the United Kingdom, Europe, Australia, New Zealand, South Africa, and Central and South America). Four main categories of impacts were identified: (1) workflow changes, (2) the quality of the work environment, (3) patient care, and (4) resources. CONCLUSIONS: Participants indicated that the pandemic heightened existing barriers and resource challenges frequently experienced by AHNP; however, the value of team connections and opportunities afforded by technology were also highlighted. Virtual care was seen as increasing healthcare access but concerns about the quality and consistency of care were also expressed. A notable gap in participant responses was identified; the vast majority did not identify any personal challenges connected with the pandemic (e.g., caring for children while working remotely, personal stress) which likely further impacted their experiences.

The Feasibility and Acceptability of Remote Videoconference Use of the Brief Developmental Assessment Tool for Young Children with Congenital Heart Disease.

Background: Young children with congenital heart disease (CHD) are at heightened risk of developmental delay. The outbreak of COVID-19 and the ensuing lockdowns presented an opportunity to test the feasibility of using a short neurodevelopmental assessment tool-the Brief Developmental Assessment (BDA)-remotely via new technologies. Methods: We tested the feasibility and acceptability of remote testing of the tool's 6 domains of development with 30 children younger than 5 years with CHD and 10 healthy controls. Results: Despite some technical issues, parents largely responded positively to the use of the remote assessment as opposed to traditional face-to-face appointments, citing the beneficial saving of time, money, and childcare. Conclusions: The acceptability of the remote use of the BDA for the developmental screening of children with CHD will allow for the possibility of increased screening for more children and earlier identification of developmental problems, both during and after COVID-19 restrictions.

The impact of restrictions to visiting in paediatric intensive care during the COVID-19 pandemic.

BACKGROUND: Restrictions to hospital visiting were mandated during the COVID-19 pandemic, with variability in the degree of restriction imposed. At times, paediatric intensive care units (ICU) restricted visiting to one parent/carer. Views of parents/carers and ICU staff about changes in the visiting policy are not well understood. DESIGN: Service evaluation involving questionnaire survey incorporating rating scales and free-text comments. SETTING: Inner-city specialist children's hospital. PARTICIPANTS: Parents/carers of children on ICU between December 2020-March 2021 and staff who were working on ICU during May-June 2021. MEASUREMENTS AND RESULTS: Parents and staff on ICU were invited to complete a questionnaire focusing on their experience of being or working on ICU. Quantitative data were analysed descriptively and free-text comments were thematically analysed. Completed questionnaires were received from 81/103 (79%) parents/carers and 217/550 (39%) staff. The majority of parents (n = 60;77%) and staff (n = 191;89%) understood the need for the one-parent visiting policy but acknowledged it was a source of considerable stress. More staff than parents agreed it was appropriate other relatives/friends visiting was not permitted (Z = 3.715;p < .001). There was no association between parents' satisfaction with their child's care and views about the visiting policy. However, staff were more likely to report an impact on their ability to deliver family centred care if they disagreed with the policy. CONCLUSION: The COVID-19 visiting policy had a clear impact on parents and staff. In the event of any future threat to open-access visiting to children in hospital, the potentially damaging effect on children, parents, and staff must be considered. RELEVANCE TO CLINICAL PRACTICE: Visiting policies need to take account of parents being partners in their child's care, rather than purely visitors to the unit where their child is being cared for. Visiting for two carers should always be facilitated, including during a crisis such as a pandemic.

Research behind a webcam: an exploration of virtual interviewing with children and young people.

BACKGROUND: Societal use of digital technology rapidly increased during the COVID-19 pandemic. Face-to-face services converted to online provision where possible. This affected many nurse researchers. AIM: To explore conducting research interviews online with children and young people (CYP) about sensitive topics. DISCUSSION: This article considers digital inclusion, as well as ethical issues surrounding safety, support and consent, along with choosing tools for collecting data. It also presents a discussion of physical proximity in qualitative interviews with this population and its role in data quality. The authors investigate benefits in the context of researchers' personal experiences. They acknowledge the disadvantages of conducting interviews online and discuss ways to mitigate these. CONCLUSION: The advantages for researchers include cost-effectiveness, time-efficiency and greater geographical reach of participants. However, CYP's perspectives are unknown and the specific ethical issues of using this method with CYP need careful consideration. IMPLICATIONS FOR PRACTICE: More research is needed to examine virtual interviews from the perspectives of CYP as participants. Virtual acquisition of consent and assent should be investigated to standardise good research practices.

What Arts-and-Health Practices Teach Us About Participation, Re-presentation, and Risk.

This article explores the implications of risk in arts-and-health collaborations that represent illness narratives for the purpose of engaging the public. Based on an artist's, bioengineer's, and health psychologist's reflections from pediatric and adult group workshop practice settings, this article canvasses 8 dimensions of risk that deserve ethical attention.

Experiences of siblings of children with congenital heart disease during Coronavirus disease 2019; A qualitative interview study.

PURPOSE: To explore siblings' perceptions of having a brother or sister with congenital heart disease in the UK during the COVID-19 pandemic. DESIGN AND METHODS: Siblings of children with congenital heart disease aged 8-17 years old were interviewed via video call technology between September 2020 and February 2021. We conducted reflexive thematic analysis of these interviews to generate themes. FINDINGS: Interviews took place with 17 siblings, predominantly of white ethnicity n = 15 (86%). Most siblings interviewed were first born in the family n = 15 (88%), and most children with CHD were the youngest n = 15(88%). Four themes were generated; My sibling is vulnerable, what does this mean for my family, I have a responsibility to protect my brother or sister, our family time during the pandemic and adjustment and adaptations to pandemic life. CONCLUSIONS: Siblings identified difficult aspects of the pandemic and these related to concerns about their brother's or sister's vulnerability, family impact, and keeping their sibling safe. They also identified adjustments they made to keep their family functioning throughout the COVID-19 pandemic. Despite the worry and uncertainty siblings experienced, they valued increased family cohesion which helped to mitigate some challenges of the restrictions imposed in the UK. PRACTICE IMPLICATIONS: Honest and open communication is valued by siblings. It is vital to ensure siblings receive the support they need to ensure they keep up with their schooling and social commitments as pandemic related restrictions ease.

Using a patient reported experience measure (PREM) to assess the experience of carers in paediatric intensive care during the COVID-19 pandemic

BackgroundIn April 2020, in response to the emerging COVID-19 pandemic, NHS England recommended limiting visiting to hospital inpatients, with resultant changes to our hospital policy of open visiting limiting visits to a single carer. In addition, changes to the way healthcare professionals interacted with carers had to be implemented, such as remote meetings, use of personal and protective equipment and social distancing.ObjectivesOur objective was to understand the impact of these changes on carers of children requiring intensive care during the Pandemic.MethodsA patient reported experience measure (PREM) focusing on experiences of attending the hospital and the impact of the necessary changes was developed by clinicians, family liaison nurses and the PREM team at our institution. The PREM was distributed to carers whose child was either a planned or emergency admission to the Paediatric, Neonatal or Cardiac intensive care units between December 2020 and March 2021. Quantitative and thematic analysis of responses was undertaken.ResultsTo date, 80 PREMs have been given to carers and 67 completed questionnaires have been received (76% response rate). Overall levels of satisfaction were very high, with 94% reporting that they were very or mostly satisfied with the intensive care team and the service they provided. Nearly two-thirds of the carers were concerned about catching COVID whilst on the intensive care unit but this decreased to 43% for other public areas of the hospital, such as the cafeteria.All carers understood the need for them to wear a mask but only 65% agreed that staff were able to interpret and respond appropriately to their emotions when they were wearing one. One third of respondents reported that they did not get the emotional support they needed from family or friends. Some carers found the restricted visiting policy challenging, with 24% reporting that it was not acceptable that the sole carer permitted at the bedside could not change as needed. This was supported by the qualitative comments, which indicated that whilst parents understood the rationale for the one carer policy, it caused additional distress.Loneliness and lack of physical contact were identified by parents as particularly stressful, together with the need to cope alone with complex information. Carers described being ‘fully alone’ without their partners, which affected the mental health of both parents and resulted in feelings of despair and confusion.ConclusionsOur intensive care is one of the largest paediatric units in the UK and during the pandemic we increased our capacity to accommodate intensive care patients from other paediatric units that reconfigured to treat adult patients. During the pandemic, our usual approach to carer support was challenged by visiting and communication restrictions, the impact of which may have long-term consequences. Despite these challenges, we were able to sensitively provide the high standards of care expected by patients and their families.

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.

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.

COVID-19 pandemic experiences of parents caring for children with oesophageal atresia/tracheo-oesophageal fistula.

Purpose: The COVID-19 pandemic has resulted in a global health crisis of unparalleled magnitude. The direct risk to the health of children is low. However, disease-containment measures have society-wide impacts. This study explored the pandemic experiences of parents of children with oesophageal atresia/tracheo-oesophageal fistula (OA/TOF) in the UK. Design: A phenomenological approach underpinned use of an asynchronous online forum method, in collaboration with a patient support group. Data were evaluated using thematic analysis. Results: The online forum ran between 7 November and 18 December 2020 with 109 participants.Pandemic experiences were divided into themes relating to healthcare and disease containment. Participants described positive experiences with remote healthcare but identified limitations. Delays and cancellations led to escalation of care to an emergency level, slower developmental progress and feelings of being abandoned by services. Inpatient care was perceived as safe but caring alone was emotionally and practically challenging. Disease containment themes revealed anxiety regarding health risks, 'collateral' damage to well-being because of isolation, and an impact on finances and employment. Parents described a transition from worry about direct health risks to concern about the impact of isolation on socialisation and development. A process of risk-benefit analysis led some to transition to a more 'normal life', while others continued to isolate. Benefits to their child's health from isolation were reported. Conclusions: Parents' experiences of caring for a child with OA/TOF during the pandemic were varied. Rapid adoption of telehealth has demonstrated the enormous potential of remote healthcare delivery but requires refinement to meet the needs of the individual. Future pandemic planning should aim to retain community healthcare services to avoid escalation of care to an emergency, manage chronic and developmental concerns, and support parental well-being. Accurate and consistent disease-specific information is highly valued by parents. Third sector organisations are ideally positioned to support this.