Background Young adults with life-limiting or life-threatening conditions (LLTCs) are ordinarily extremely challenged in terms of health and wellbeing and especially vulnerable to social isolation and exclusion (Johnson & Hodgson, 2018; Knighting K, Bray L, Downing J, et al., 2018). Society’s response to COVID-19 poses an additional threat to this group who are at risk of being further left behind, creating long-lasting consequences for their mental wellbeing.
Aims To examine the unintended consequences of (COVID-19) epidemic-control decisions on young adults with LLTCs to (a) understand the needs of this group (b) develop guidance and support and, (c) determine how consequences could be mitigated.
Methods This inclusive research project, underpinned by an interpretive qualitative framework (Denzin, 2003) draws on the principles of co-design (Nind, 2014). Research participants were recruited using purposive and theoretical sampling using a variety of methods including advertising for participants, existing networks and snowballing. During July-September 2020, in-depth interviews were conducted via video-conference with 28 young adults aged 18-40. Data were analysed iteratively using constructivist Grounded Theory Method (cGTM) (Charmaz, 2006) and using the qualitative software analysis package QSR NVivo.
Results Participants experienced a decline in mental wellbeing with those with pre-existing mental health issues showing the most significant decline; in these cases, participants spoke about suicidal ideation, depression and anxiety and an increased need for medication and therapy. Many participants described a ‘rollercoaster’ of emotions and said that they had felt ‘petrified’ ‘overwhelmed, ‘worried’ and ‘forgotten’. Key themes included (a) the constant management of risk to avoid (physical) harm from COVID-19 while protecting mental health (b) the desire to ‘keep busy’ as a means of ‘thinking less’ in order stay mentally well (c) a re-evaluation of what matters in life.
Conclusion Main learning points: (1) acknowledgement that although people with LLTCs are typically isolated and excluded that the pandemic has magnified and exacerbated this; (2) the need for regular communication; (3) enhanced mental health support.
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