Existential Concerns of Children and Young People with Life-limiting or Life-threatening Conditions

C-POS

Research output: Contribution to conference typesAbstractpeer-review

Abstract

Background: Whilst evidence suggests that children and young people (CYP) with life-limiting or life-threatening conditions (LLLTC) have existential concerns, it is a research area often unexplored, partly due to ethical challenges. Existential concerns can be more difficult for health and social care professionals to elicit in comparison to physical, psychological, or social concerns.

Aim: To explore how CYP with LLLTC conceptualise and express existential concerns.

Methods: Semi-structured qualitative interviews with purposively sampled CYP with LLLTC (aged 5-17) from 9 UK inpatient and outpatient sites. Verbatim transcripts were analysed using framework approach, using inductive and deductive coding in NVivo.

Results: 26 CYP with a range of LLLTC (6 cancer/20 non-cancer) were interviewed. Themes included: uncertainty of the future, determination to live life to the fullest, and meaning of life. CYP often faced uncertainty due to the unpredictability of their LLLTC. They faced internal conflict over accepting the possibility or actuality of death whilst simultaneously wanting to fight to keep going and survive. Being able to live life to the fullest by taking part in activities they enjoy was very important and made life meaningful. Concerns around uncertainty and unpredictability were more commonly described by CYP with cancer, gastrointestinal, congenital, or metabolic conditions than those with neurological or respiratory conditions.

Conclusion / Discussion: Addressing existential concerns is essential for a CYP-centred approach to paediatric palliative care. Despite the challenging topic, this research has identified several existential concerns of CYP with LLLTC. Assessment, management, and care planning must involve and enable CYP to identify goals and concerns most important to them. Working with CYP to set achievable goals for the future offers one way to support a meaningful life.

Funding: EU Horizon 2020
Original languageEnglish
Publication statusPublished - 2021
Event17th World Congress of the European Association for Palliative Care 2021 - Virtual
Duration: 6 Oct 20218 Oct 2021

Conference

Conference17th World Congress of the European Association for Palliative Care 2021
Period6/10/20218/10/2021

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