'Never once was I thinking the c-word': Parent perspectives on the facilitators and barriers to getting a childhood cancer diagnosis.
Qualitative research
diagnosis of cancer
paediatric
personal narratives
physician-patient relationship
translational research
Journal
Journal of clinical nursing
ISSN: 1365-2702
Titre abrégé: J Clin Nurs
Pays: England
ID NLM: 9207302
Informations de publication
Date de publication:
Jul 2023
Jul 2023
Historique:
revised:
08
08
2022
received:
02
05
2022
accepted:
11
08
2022
medline:
8
6
2023
pubmed:
6
9
2022
entrez:
5
9
2022
Statut:
ppublish
Résumé
To describe the facilitators and barriers of getting from 'something's not right' to a childhood cancer diagnosis from the perspective of parents living in the United States of America. It is common for families to experience long trajectories from when they first notice symptoms to receiving a childhood cancer diagnosis. Understanding this trajectory within the social and cultural contexts of the United States healthcare system is the first step in developing strategies for reducing this timeframe and mitigating some of the psychosocial impact for parents in receiving a childhood cancer diagnosis. This study examines the interpretations and meanings parents attributed to their child's symptoms, their decisions regarding seeking medical care, interactions with healthcare providers and the time course of events. An inductive qualitative inquiry. In-depth, semi-structured interviews with 55 participants representing 39 unique cases of childhood cancer were conducted. Data were analysed using an inductive thematic approach. COREQ guidelines were followed. Participants described multiple barriers and facilitators in their path to receiving a childhood cancer diagnosis. Facilitators included noticing something 'wasn't right' and physician in agreement that symptoms were unusual; acute symptoms requiring action; advocating for a diagnosis; and obtaining a second opinion. Barriers included parents having to interpret symptoms in the context of daily life; physician dismissiveness even when symptoms persisted; and not feeling they could question their physician's assessment. Families experience multiple facilitators and barriers in their trajectory to receiving a childhood cancer diagnosis. Understanding the path to diagnosis from the parent perspective may increase opportunities for shared decision-making. Clinician educational modules that include family perspectives may improve patient/parent-provider relationships. Participants described their family's cancer journey through narrative storytelling. Participants had the opportunity to review and make edits to their transcript.
Sections du résumé
AIMS AND OBJECTIVES
OBJECTIVE
To describe the facilitators and barriers of getting from 'something's not right' to a childhood cancer diagnosis from the perspective of parents living in the United States of America.
BACKGROUND
BACKGROUND
It is common for families to experience long trajectories from when they first notice symptoms to receiving a childhood cancer diagnosis. Understanding this trajectory within the social and cultural contexts of the United States healthcare system is the first step in developing strategies for reducing this timeframe and mitigating some of the psychosocial impact for parents in receiving a childhood cancer diagnosis. This study examines the interpretations and meanings parents attributed to their child's symptoms, their decisions regarding seeking medical care, interactions with healthcare providers and the time course of events.
DESIGN
METHODS
An inductive qualitative inquiry.
METHODS
METHODS
In-depth, semi-structured interviews with 55 participants representing 39 unique cases of childhood cancer were conducted. Data were analysed using an inductive thematic approach. COREQ guidelines were followed.
RESULTS
RESULTS
Participants described multiple barriers and facilitators in their path to receiving a childhood cancer diagnosis. Facilitators included noticing something 'wasn't right' and physician in agreement that symptoms were unusual; acute symptoms requiring action; advocating for a diagnosis; and obtaining a second opinion. Barriers included parents having to interpret symptoms in the context of daily life; physician dismissiveness even when symptoms persisted; and not feeling they could question their physician's assessment.
CONCLUSION
CONCLUSIONS
Families experience multiple facilitators and barriers in their trajectory to receiving a childhood cancer diagnosis.
RELEVANCE TO CLINICAL PRACTICE
CONCLUSIONS
Understanding the path to diagnosis from the parent perspective may increase opportunities for shared decision-making. Clinician educational modules that include family perspectives may improve patient/parent-provider relationships.
PARTICIPANT CONTRIBUTION
UNASSIGNED
Participants described their family's cancer journey through narrative storytelling. Participants had the opportunity to review and make edits to their transcript.
Identifiants
pubmed: 36059140
doi: 10.1111/jocn.16511
pmc: PMC9984568
mid: NIHMS1845404
doi:
Types de publication
Journal Article
Langues
eng
Pagination
3981-3994Subventions
Organisme : NCATS NIH HHS
ID : UL1 TR002369
Pays : United States
Organisme : NCATS NIH HHS
ID : UL1TR002369
Pays : United States
Organisme : NCATS NIH HHS
ID : UL1TR002369
Pays : United States
Informations de copyright
© 2022 The Authors. Journal of Clinical Nursing published by John Wiley & Sons Ltd.
Références
Cancer. 2007 Aug 15;110(4):703-13
pubmed: 17620277
JNCI Cancer Spectr. 2019 Jun;3(2):pkz032
pubmed: 31259303
Pediatrics. 2002 Mar;109(3):E45
pubmed: 11875173
Pediatr Blood Cancer. 2011 Sep;57(3):392-7
pubmed: 21384539
BMJ Open. 2014 Feb 18;4(2):e004640
pubmed: 24549167
Health Soc Work. 2022 Jan 31;47(1):28-35
pubmed: 34878136
Lancet Oncol. 2012 Oct;13(10):e445-59
pubmed: 23026830
N Engl J Med. 2018 Dec 20;379(25):2468-2475
pubmed: 30575483
Acta Paediatr. 2012 Jun;101(6):655-62
pubmed: 22313319
J Surg Res. 2017 Nov;219:43-49
pubmed: 29078908
Rev Gaucha Enferm. 2018 Oct 18;39:e20180004
pubmed: 30365758
BMC Public Health. 2019 Dec 2;19(1):1613
pubmed: 31791308
Endocrinol Diabetes Metab. 2017 Dec 18;1(1):e00008
pubmed: 30815545
BMJ Open. 2013 Dec 03;3(12):e004068
pubmed: 24302510
J Pediatr Oncol Nurs. 2003 Nov-Dec;20(6):301-13
pubmed: 14738162
J Pediatr Hematol Oncol. 2021 Nov 1;43(8):e1244-e1246
pubmed: 34010931
J Health Serv Res Policy. 2021 Apr;26(2):133-140
pubmed: 32969297
J Clin Transl Sci. 2021 Jul 21;5(1):e155
pubmed: 34527294
Lancet. 2001 Mar 3;357(9257):670-4
pubmed: 11247550
BMC Health Serv Res. 2020 Oct 22;20(1):969
pubmed: 33092610
Br J Cancer. 2015 Jan 6;112(1):20-3
pubmed: 25268376
Br J Cancer. 2004 May 17;90(10):1882-4
pubmed: 15138465
J Adv Nurs. 1997 Sep;26(3):623-30
pubmed: 9378886
J Gen Intern Med. 2022 Apr;37(Suppl 1):118-122
pubmed: 35349029
Med Educ. 2006 May;40(5):405-14
pubmed: 16635119
Br J Gen Pract. 2013 Jan;63(606):e22-9
pubmed: 23336454
JAMA Pediatr. 2020 Apr 1;174(4):350-357
pubmed: 31961428
BMJ Paediatr Open. 2021 Nov 11;5(1):e001078
pubmed: 34805556
Lancet Reg Health Eur. 2021 Oct;9:100188
pubmed: 34514453
South Med J. 2020 May;113(5):224-231
pubmed: 32358617
J Clin Nurs. 2017 Dec;26(23-24):4325-4334
pubmed: 28178370
J Clin Oncol. 2014 Jun 20;32(18):1935-40
pubmed: 24841977
J Oncol Pract. 2019 Mar;15(3):e219-e229
pubmed: 30702962
Arch Dis Child. 2015 Jul;100(7):623-9
pubmed: 25552262
Br J Gen Pract. 2012 Jul;62(600):e458-65
pubmed: 22781993
PLoS One. 2017 Sep 6;12(9):e0181970
pubmed: 28877170
Pediatr Diabetes. 2014 Dec;15(8):591-8
pubmed: 24552497
Acad Med. 2020 Jan;95(1):72-76
pubmed: 31348061