‘Exhausted, emotional, at breaking point’: The mental wellbeing of young adults with shortened lives

Earle, Sarah; Blackburn, Maddie; Lizzie, Chambers; Downing, Julia; Flemming, Kate; Hale, Jamie; Marston, Hannah; O'Dell, Lindsay; Sinason, Valerie; Watts, Lucy and Whitney, Sally (2021). ‘Exhausted, emotional, at breaking point’: The mental wellbeing of young adults with shortened lives. In: Hospice UK National Conference: A New World, 3-5 Nov 2021, Liverpool, UK.

URL: https://www.hospiceuk.org/innovation-hub/courses-c...


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 1,2. 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 framework3 draws on the principles of co-design4. 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)5 and using the qualitative software analysis package QSR NVivo6.

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: Key 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.


1. Johnson M & Hodgson J (2018) Hidden Lives: tackling the social exclusion of families caring for a seriously ill child. Together for Short Lives: Bristol. http://www.togetherforshortlives.org.uk/wp-content/uploads/2018/03/180312-Report-on-Family-Survey-and-Misconceptions.pdf [accessed 11 June 2021].
2. Knighting K, Bray L, Downing J, et al. (2018) Meeting the needs of young adults with life-limiting conditions: A UK survey of current provision and future challenges for hospices. Journal of Advanced Nursing, 74: 8. https://doi.org/10.1111/jan.13702 [accessed 11 June 2021].
3. Denzin N K (2003) The practices and politics of interpretation. In N.K.Denzin &Y.S.Lincoln (Eds) Collecting and interpreting qualitative materials (2nd ed, pp. 458–498).Thousand Oaks, CA: Sage.
4. Nind M (2014) What is Inclusive Research? London: Bloomsbury Academic.
5. Charmaz K (2006) Constructing Grounded Theory: A Practical Guide through Qualitative Analysis. London: Sage.
6. QSR International Pty Ltd. (2019) NVivo (Mac Version 12) https://www.qsrinternational.com/nvivo-qualitative-data-analysis-software/home [accessed 11 June 2021].

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