Lost and changed meaning in life of people with Long Covid: a qualitative study

Figures & data

Table I. Dimensions of meaning in life, derived from Baumeister (1991), Derkx et al. (2020), Hupkens et al. (2018), Martela and Steger (2016).

Dimension	Meaning
Purpose	Having goals to strive for in life, which one’s current activities can be connected to. Having direction, external goals, inner fulfilment.
Moral worth, values and justification	Having underlying values and evaluating one’s actions positively, one’s goals as morally worthwhile.
Self-worth	Valuing and accepting oneself and being valued by others for who you are and what you do.
Control, efficacy, competence	Feeling competent, feeling influence over one’s life, feeling like one’s choices and actions matter – even if one objectively knows that one has little control over life.
Coherence, comprehension	Sensing coherence and order in life, understanding one’s life. Understanding how events and experiences make sense in the larger story of one’s life. This includes a coherent life narrative.
Connectedness	Feeling connected to others and/or something other/bigger than oneself. Feeling part of something valuable.
Excitement, wonder, curiosity	Feeling excitement, wonder or curiosity. Feeling engaged and motivated rather than purely experiencing the monotony of life.

Table II. Participants.

Participant	Gender	Age	Occupation	Long Covid
				Start of illness	Current status
Anne (NL)	Female	21	Student	January 2022	Mostly housebound*
Bianca (NL)	Female	56	Professor	April 2020	Reduced activities, some recovery
Claire (NL)	Female	20	Nursing student, healthcare worker	November 2021	Mostly recovered
Demi (NL)	Female	20	Student, self-employed	March 2021	Some recovery*
Eric (NL)	Male	23	Student, parttime job	September 2020	Reduced activities, delayed studies, some recovery*
Frances (NL)	Female	21	Student, parttime job	March 2021	Mostly housebound
Gwen (NL)	Female	41	Teacher, sports instructor, consultant	March 2021	Quit teaching job, severely reduced activities as a consultant, on indefinite leave as a sports instructor*
Hugo (USA)	Male	36	Police officer	February 2020	Medically retiring, reduced activities, needs assistance leaving the house*
Miles (USA)	Male	29	Independent journalist	February 2020	Disabled by LC*
Joe (GB-SCT)	Male	36	Self-employed software engineer	March 2020	Significant recovery but continued daily impact*

* = Participants’ own descriptions.

Table III. Sources of meaning.

Connections	Interests, activities, joy	Illness-related	Influence and orientation
Relationships with supportive loved ones	(Small) joys, improvements, accomplishments	Advocating	Independence and freedom
Giving love	Hobbies	Researching illness	Control
Helping others	Work	Knowledge/answers and comprehension regarding illness	Setting goals and making plans
Contacting fellow patients	Studies and learning about areas of interest	Seeking treatment	Purpose
Connecting with natural surroundings	Passion for projects	Learning from the illness experience	Focusing on the present
Sense of self	Philosophy	Gaining something positive from the negative experience	Hope
Religion		Contacting fellow patients	Optimism

Table IV. Findings compared with dimensions of meaning in life (Derkx et al., 2020).

Purpose	Moral worth	Self-worth	Control
Patients mentioned advocating and/or helping others as their purpose.	Patients saw loving and caring for others as the right and most important thing to do (even though this is difficult due to illness or hard to accept when all else is lost).	Patients struggled with not being able to perform and achieve and be there for others.	Patients struggled to understand life while lacking control over their illness.
Coherence/ comprehension	Connectedness	Excitement/wonder/curiosity
Patients sought an explanation for their illness (situational meaning derived from global meaning) or had to adjust their understanding of life (global meaning) (Park, 2016).	Patients needed the support and understanding of others and patients find good relationships more important than ever.	Patients held onto their passions, interests, and (small) joys.

Baumeister, R. F. (1991). Meanings of life. Guilford Press.

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Derkx, P., Bos, P., Laceulle, H., & Machielse, A. (2020). Meaning in life and the experience of older people. International Journal of Ageing & Later Life, 14(1), 37–66. https://doi.org/10.3384/ijal.1652-8670.19467

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Hupkens, S., Machielse, A., Goumans, M., & Derkx, P. (2018). Meaning in life of older persons: An integrative literature review. Nursing Ethics, 25(8), 973–991. https://doi.org/10.1177/0969733016680122

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Martela, F., & Steger, M. F. (2016). The three meanings of meaning in life: Distinguishing coherence, purpose, and significance. The Journal of Positive Psychology, 11(5), 531–545. https://doi.org/10.1080/17439760.2015.1137623

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Park, C. L. (2016). Meaning making in the context of disasters. Journal of Clinical Psychology, 72(12), 1234–1246. https://doi.org/10.1002/jclp.22270

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Data availability statement

The authors confirm that the data supporting the findings of this study are available within the article according to FAIR principles (Findability, Accessibility, Interoperability, and Reusability).