Experiences of parents of children with rare neurogenetic conditions during the COVID-19 pandemic: an interpretative phenomenological analysis

Abstract

Background The Coronavirus disease 2019 (COVID-19) pandemic has impacted parental and child mental health and wellbeing in the UK. This study aimed to explore the experiences of parents of children with rare neurological and neurodevelopmental conditions with a known or suspected genetic cause (neurogenetic) across the first year of the pandemic in the UK. Methods Semi-structured interviews were conducted with 11 parents of children with rare neurogenetic conditions. Parents were recruited via opportunity sampling from the CoIN Study, a longitudinal quantitative study exploring the impact of the pandemic on the mental health and wellbeing of families with rare neurogenetic conditions. Interviews were analysed using Interpretative Phenomenological Analysis. Results Four main themes were identified: (1) “A varied impact on child wellbeing: from detrimental to ‘no big drama’”; (2) “Parental mental health and wellbeing: impact, changes, and coping”; (3) “'The world had shut its doors and that was that’: care and social services during the pandemic”; and (4) “Time and luck: abstract concepts central to parents’ perspectives of how they coped during the pandemic”. The majority of parents described experiencing an exacerbation of pre-pandemic challenges due to increased uncertainty and a lack of support, with a minority reporting positive effects of the pandemic on family wellbeing. Conclusions These findings offer a unique insight into the experiences parents of children with rare neurogenetic conditions across the first year of the pandemic in the UK. They highlight that the experiences of parents were not pandemic-specific, and will continue to be highly relevant in a non-pandemic context. Future support should to be tailored to the needs of families and implemented across diverse future scenarios to promote coping and positive wellbeing.

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].…”

“…Regarding RDs, nine documents approached the theme in a broad, general way [6,8,[12][13][14]17,19,25,26], while the rest focused on one or two diseases or on a specific group of diseases per publication. The RDs mentioned in the articles were hereditary haemorrhagic telangiectasia (HTT) [5], lysosomal storage disorder (LSD) [7], Batten disease [18], interstitial cystitis/bladder pain syndrome (IC/BPS) [11], osteogenesis imperfecta [10], congenital surgical diseases [25], oesophageal atresia/tracheo-oesophageal fistula (OA/TOF) [9], rare neurogenetic conditions [24], and macrocytosis [23].…”

“…The publications addressed the relationship between COVID-19 and RDs from different perspectives, choosing to focus on patients, families/relatives/caregivers (FRCs), RD organisations, and intervention issues. In particular, seven documents considered the patient's perspective [6,7,10,12,13,23,26], five focused on FRCs [8,9,14,24,25], four assessed interventions [5,11,18,19], and one examined an RD organisational perspective [17].…”

“…RD patients seemed to experience anxiety in a similar way to people without RDs, but with the aggravation of their specific circumstances. In particular, those with rare neurogenetic conditions associated with anxiety that caused autistic-like behaviour [24], and with papilledema and idiopathic intracranial hypertension, experienced a 64% anxiety increase [28]. All of the documents agreed on the importance of helping people ease their anxiety to enhance their well-being.…”

“…FRCs experienced constant concern for their loved ones during the pandemic [8,9,14], such as parents trying to avoid the premature death of children [9] and coping with a lack of stable healthcare services. Caring for people with RDs during the pandemic was extremely taxing for people despite the high resilience they exhibited, and there were cases of parents arguing about who should care for the patient and who should work [9,24].…”