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; M J van den Bent; A-S E Darlington; A E Gualthérie van Weezel; A Compter; J M Tromp; R I Lalisang; M C M Kouwenhoven; L Dirven; N C G L Harthoorn; C A Troost-Heijboer; O Husson; W T A van der Graaf

doi:10.1016/j.esmoop.2022.100476

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, M J van den Bent, A-S E Darlington, A E Gualthérie van Weezel, A Compter, J M Tromp, R I Lalisang, M C M Kouwenhoven, L Dirven, N C G L Harthoorn, C A Troost-Heijboer, O Husson^*, W T A van der Graaf

^*Corresponding author for this work

Research output: Contribution to journal › Article › Academic › peer-review

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.

Original language	English
Article number	100476
Number of pages	9
Journal	ESMO Open
Volume	7
Issue number	3
Early online date	6 May 2022
DOIs	https://doi.org/10.1016/j.esmoop.2022.100476
Publication status	Published - Jun 2022

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Burgers, V. W. G., van den Bent, M. J., Darlington, A.-S. E., Gualthérie van Weezel, A. E., Compter, A., Tromp, J. M., Lalisang, R. I., Kouwenhoven, M. C. M., Dirven, L., Harthoorn, N. C. G. L., Troost-Heijboer, C. A., Husson, O., & van der Graaf, W. T. A. (2022). 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. ESMO Open, 7(3), Article 100476. https://doi.org/10.1016/j.esmoop.2022.100476

@article{c3224ab3a5104fdbbbdb376b13682f4e,

title = "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",

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.",

author = "Burgers, {V W G} and {van den Bent}, {M J} and Darlington, {A-S E} and {Gualth{\'e}rie van Weezel}, {A E} and A Compter and Tromp, {J M} and Lalisang, {R I} and Kouwenhoven, {M C M} and L Dirven and Harthoorn, {N C G L} and Troost-Heijboer, {C A} and O Husson and {van der Graaf}, {W T A}",

year = "2022",

month = jun,

doi = "10.1016/j.esmoop.2022.100476",

language = "English",

volume = "7",

journal = "ESMO Open",

issn = "2059-7029",

publisher = "BMJ Publishing Group",

number = "3",

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Burgers, VWG, van den Bent, MJ, Darlington, A-SE, Gualthérie van Weezel, AE, Compter, A, Tromp, JM, Lalisang, RI, Kouwenhoven, MCM, Dirven, L, Harthoorn, NCGL, Troost-Heijboer, CA, Husson, O & van der Graaf, WTA 2022, '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', ESMO Open, vol. 7, no. 3, 100476. https://doi.org/10.1016/j.esmoop.2022.100476

TY - JOUR

T1 - 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

AU - Burgers, V W G

AU - van den Bent, M J

AU - Darlington, A-S E

AU - Gualthérie van Weezel, A E

AU - Compter, A

AU - Tromp, J M

AU - Lalisang, R I

AU - Kouwenhoven, M C M

AU - Dirven, L

AU - Harthoorn, N C G L

AU - Troost-Heijboer, C A

AU - Husson, O

AU - van der Graaf, W T A

PY - 2022/6

Y1 - 2022/6

N2 - 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.

AB - 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.

U2 - 10.1016/j.esmoop.2022.100476

DO - 10.1016/j.esmoop.2022.100476

M3 - Article

C2 - 35533426

SN - 2059-7029

VL - 7

JO - ESMO Open

JF - ESMO Open

IS - 3

M1 - 100476

ER -