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. 2022 Jun;7(3):100476.
doi: 10.1016/j.esmoop.2022.100476. Epub 2022 May 6.

A qualitative study on the challenges health care professionals face when caring for adolescents and young adults with an uncertain and/or poor cancer prognosis

V W G Burgers  1 , M J van den Bent  2 , A-S E Darlington  3 , A E Gualthérie van Weezel  4 , A Compter  5 , J M Tromp  6 , R I Lalisang  7 , M C M Kouwenhoven  8 , L Dirven  9 , N C G L Harthoorn  10 , C A Troost-Heijboer  10 , O Husson  11 , W T A van der Graaf  12
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A qualitative study on the challenges health care professionals face when caring for adolescents and young adults with an uncertain and/or poor cancer prognosis

V W G Burgers et al. ESMO Open. 2022 Jun.

Abstract

Background: Adolescents and young adults (AYAs, aged 18-39 years) with advanced cancer have an increased life expectancy due to improvements and refinements in cancer therapies, resulting in a growing group of AYAs living with an uncertain and/or poor cancer prognosis (UPCP). To date, no studies have examined the difficulties of health care professionals (HCPs) providing care to AYAs with a UPCP. This study aimed to understand the challenges in daily clinical practice experienced by HCPs from different disciplines who provide palliative as well as general care to AYAs with a UPCP.

Methods: HCPs from a variety of backgrounds (e.g. clinical nurse specialists, medical oncologists, neurologists psychologists) were invited for a semi-structured interview. The interviews were transcribed verbatim and analysed using reflexive thematic analysis. Two AYA patients were actively involved as research partners to increase the relevance of the study design and to optimise interpretation of results.

Results: Forty-nine HCPs were interviewed. Overall, we found that the threat of premature death within this young patient group increased emotional impact on HCPs and evoked a feeling of unfairness, which was an extra motivation for HCPs to provide the most optimal care possible. We generated four key themes: (i) emotional confrontation (e.g. feeling helplessness and experiencing a greater sense of empathy), (ii) questioning own professional attitude and skills, (iii) navigating uncertainty (e.g. discussing prognosis and end of life) and (iv) obstacles in the health care organisation (e.g. lack of knowledge and clarity about responsibilities).

Conclusions: HCPs experienced unique emotional and practical challenges when providing care to AYAs with a UPCP. The results from this study highlight the need to develop an education module for HCPs treating AYAs with UPCP to increase their own well-being and optimise the delivery of person- and age-adjusted care.

Keywords: adolescents and young adults; health care professionals; palliative care; poor or uncertain cancer prognosis; qualitative research.

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Conflict of interest statement

Disclosure The authors have declared no conflicts of interest.

Figures

Figure 1
Figure 1
Representation of themes and sub-themes of the challenges of HCPs delivering care to AYAs with a UPCP. AYA, adults and young adults; HCPs, health care professionals; UPCP, uncertain and/or poor cancer prognosis.
See this image and copyright information in PMC

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