Caregiver perceptions and experiences of paediatric emergency department attendance during the COVID-19 pandemic: A mixed-methods study.

BACKGROUND: During the early stages of the COVID-19 pandemic, concerns were raised about reduced attendance at hospitals, particularly in paediatric emergency departments, which could result in preventable poorer outcomes and late presentations among children requiring emergency care. We aimed to investigate the impact of COVID-19 on health-seeking behaviour and decision-making processes of caregivers presenting to paediatric emergency services at a National Health Service (NHS) Trust in London. MATERIALS AND METHODS: We conducted a mixed-methods study (survey and semi-structured interviews) across two hospital sites between November-December 2020. Data from each study were collected concurrently followed by data comparison. RESULTS: Overall, 100 caregivers participated in our study; 80 completed the survey only, two completed the interview only and 18 completed both. Our quantitative study found that almost two-thirds (63%, n = 62) of caregivers attended the department within two days of their child becoming ill. Our qualitative study identified three major themes which were underpinned by concepts of trust, safety and uncertainty and were assessed in relation to the temporal nature of the pandemic and the caregivers' journey to care. We found most caregivers balanced their concerns of COVID-19 and a perceived "overwhelmed" NHS by speaking to trusted sources, predominantly general practitioners (GPs). CONCLUSION: Caregivers have adapted their health-seeking behaviour throughout the pandemic as new information and guidance have been released. We identified several factors affecting decisions to attend; some existed before the pandemic (e.g., concerns for child's health) whilst others were due to the pandemic (e.g., perceived risks of transmission when accessing healthcare services). We recommend trusted medical professionals, particularly GPs, continue to provide reassurance to caregivers to seek emergency paediatric care when required. Communicating the hospital safety procedures and the importance of early intervention to caregivers could additionally provide reassurance to those concerned about the risks of accessing the hospital environment.

A qualitative study of the quality of life of children receiving intravenous nutrition at home.

OBJECTIVES: To discover the views of children with severe intestinal failure treated with intravenous nutrition from early life and who remained heavily dependent on treatment throughout childhood. METHODS: Seven children ages 7 to 17 years (mean 13 years) were interviewed. The diagnoses were enteropathy in 3, extreme short gut in 1, complex (associated mucosal inflammation and dysmotitlity) in 2, and intestinal pseudo-obstruction in 1. They were treated with intravenous nutrition overnight at home that was administered by trained parents using the simplest possible system. The children were individually questioned about their lifestyle and health. Transcripts were analysed using interpretive phenomenological analysis. RESULTS: Children coped well with life with intravenous nutrition (apart from septicaemia in 2 cases), but were troubled when complications of the underlying disease persisted (eg, nocturnal disturbance, stool frequency, abdominal pain). Children were aware that life was restricted (eg, fewer sleepovers with friends, fewer late nights out). There was a high level of family functioning. Older children wished to take care of themselves. The burdens of life with intravenous nutrition appear to be less significant for these children than living with the effects of chronic illness. There was resilience and acceptance in the face of illness-related demands. CONCLUSIONS: This study has found that despite the problems they may face, it is possible for children fed intravenously at home to develop a level of resilience, maintain a positive outlook, and cope well with illness-related demands even when they have had virtually lifelong severe intestinal failure. Families can continue to function well.