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

Abstract

PurposeThe 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.DesignA phenomenological approach underpinned use of an asynchronous online forum method, in collaboration with a patient support group. Data were evaluated using thematic analysis.ResultsThe 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.ConclusionsParents’ 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.

Impacts of health care service changes implemented due to COVID‐19 on children and young people with long‐term disability: A mapping review

“…Several studies collected information on satisfaction with telehealth appointments, finding that both parent carers and health care professionals had confidence in the remote contact and the clinical evaluations undertaken via telehealth 18,30,43 . Parent carers reported finding telehealth appointments helpful and effective and were supportive of video consultations continuing beyond the pandemic, 18,32,43,44 seeing benefits of saving time and travel to the hospital and waiting rooms and avoiding the challenges related to bringing their child to an outpatient appointment 29,37,44,45 …”

“…18,30,43 Parent carers reported finding telehealth appointments helpful and effective and were supportive of video consultations continuing beyond the pandemic, 18,32,43,44 seeing benefits of saving time and travel to the hospital and waiting rooms and avoiding the challenges related to bringing their child to an outpatient appointment. 29,37,44,45 Some of the negative evaluations of telehealth from both parent carers and health care professionals was the absence of the physical examination 32,37,44 (e.g. measures of weight and height, evaluation of motor development) and some found it less personal and hard to build rapport.…”

Caring for People with Rare Diseases: A Systematic Review of the Challenges of, and Strategies for Dealing with, COVID-19

“…The geographical distribution of data in the studied material showed a prevalence of research in continental Europe, with 61.1% of the total yield of studies coming from this region. Of these ten documents, five were from England [9,10,14,23,24], three were from Italy [5,7,11], two were from Germany [8,25], and one was from Norway [13]. After Europe, two articles were from North America [12,18], one was from Asia (Hong Kong) [26], one was from the Asia-Pacific region [17] (based on data from Australia, Hong Kong, India, Japan, China, Malaysia, New Zealand, the Philippines, Singapore, and Taiwan), one was from South America (Brazil) [6], and, finally, there was one that took a broad global perspective [19].…”

“…We searched the Google Scholar, PubMed, and Scopus databases using 'COVID-19', 'rare diseases', and 'psychology' as keywords, which yielded 217 articles in Google Scholar, 11 in Scopus, and 7 in PubMed. Many of the selected articles examined the impact of COVID-19 on loneliness [5][6][7][8], social isolation [7,9,10], depressive moods [6][7][8]10], distress [7,8,11,12], and anxiety [7][8][9][10]13] in patients with RDs, the people involved with them, and the psychological burden the disease imposed [8,14]. Loneliness and social isolation, although different, are often connected and are already an important social problem, which the pandemic exacerbated [15], especially for the most fragile people in society.…”

COVID-19 and children with congenital anomalies: a European survey of parents’ experiences of healthcare services

“…Disruptions to the healthcare services of children with CAs were found to cause anxiety for parents,20 and fear that their child’s health may be negatively affected 22. Corcerns about SARS-CoV-2 infection were also common among parents,23 24 which coupled with reductions in other communicable infections during the pandemic,25 26 resulted in fewer visits to clinics25 27 and emergency departments26 28 in 2020. Parents reported a lack of support from healthcare professionals, including the absence of specific COVID-19-related guidance for children 22 29…”