The long shadow of childhood cancer: a qualitative study on insurance hardship among survivors of childhood cancer.
Childhood cancer
Discrimination
Insurance hardship
Long-term late effects
Qualitative research
Survivorship
Switzerland
Universal health coverage
Unmet needs
Journal
BMC health services research
ISSN: 1472-6963
Titre abrégé: BMC Health Serv Res
Pays: England
ID NLM: 101088677
Informations de publication
Date de publication:
25 May 2021
25 May 2021
Historique:
received:
26
11
2020
accepted:
23
04
2021
entrez:
26
5
2021
pubmed:
27
5
2021
medline:
28
5
2021
Statut:
epublish
Résumé
The long-term consequences of childhood cancer have received increasing attention due to the growing number of survivors over the past decades. However, insurance hardships of survivors are mostly unknown. This study explored qualitatively, in a sample of childhood cancer survivors (CCS), (i) the experiences and needs of CCS living in Switzerland with a special focus on hardships related to insurance; and (ii) the views of insurance and law experts with experience on childhood cancer. Semi-structured interviews were conducted with 28 childhood cancer survivors and 3 experts (one legal expert, two insurance experts). Data was analysed using qualitative content analysis. Three key themes emerged from the interviews with the CCS: 1) experiences with insurance, 2) perception of discrimination, and 3) needs and barriers for support. The interviewed experts provided further detailed clarification of CCS' concerns. Our findings indicated that some CCS can move past their cancer history, while others continue to face hardships. CCS reported confusion about the opportunities and services within the social security system and most relied on their personal contacts for guidance. Finally, CCS expressed a strong need for socio-economic and legal support for social insurance questions, especially related to disability insurance. With the growing population of CCS, it is essential to further assess the interplay between medical and psychosocial health and socio-economic hardship. Supportive psychosocial services should aim to ameliorate insurance hardships. Better understanding of the relationship between childhood cancer and insurance hardships during survivorship will inform efforts to improve long-term financial security and health outcomes for survivors. We call for the public, lawmakers, researchers, insurers, and patient organizations to come together and discuss future perspectives to avoid the risk of discrimination for cancer survivors.
Sections du résumé
BACKGROUND
BACKGROUND
The long-term consequences of childhood cancer have received increasing attention due to the growing number of survivors over the past decades. However, insurance hardships of survivors are mostly unknown. This study explored qualitatively, in a sample of childhood cancer survivors (CCS), (i) the experiences and needs of CCS living in Switzerland with a special focus on hardships related to insurance; and (ii) the views of insurance and law experts with experience on childhood cancer.
METHODS
METHODS
Semi-structured interviews were conducted with 28 childhood cancer survivors and 3 experts (one legal expert, two insurance experts). Data was analysed using qualitative content analysis.
RESULTS
RESULTS
Three key themes emerged from the interviews with the CCS: 1) experiences with insurance, 2) perception of discrimination, and 3) needs and barriers for support. The interviewed experts provided further detailed clarification of CCS' concerns. Our findings indicated that some CCS can move past their cancer history, while others continue to face hardships. CCS reported confusion about the opportunities and services within the social security system and most relied on their personal contacts for guidance. Finally, CCS expressed a strong need for socio-economic and legal support for social insurance questions, especially related to disability insurance.
CONCLUSIONS
CONCLUSIONS
With the growing population of CCS, it is essential to further assess the interplay between medical and psychosocial health and socio-economic hardship. Supportive psychosocial services should aim to ameliorate insurance hardships. Better understanding of the relationship between childhood cancer and insurance hardships during survivorship will inform efforts to improve long-term financial security and health outcomes for survivors. We call for the public, lawmakers, researchers, insurers, and patient organizations to come together and discuss future perspectives to avoid the risk of discrimination for cancer survivors.
Identifiants
pubmed: 34034742
doi: 10.1186/s12913-021-06543-9
pii: 10.1186/s12913-021-06543-9
pmc: PMC8152348
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
503Subventions
Organisme : Cancer Research Switzerland
ID : KFS-3955-08-2016
Organisme : Cancer Research Switzerland
ID : HSR-4080-44-2016
Références
JAMA. 2013 Jun 12;309(22):2371-2381
pubmed: 23757085
J Clin Oncol. 2010 Apr 1;28(10):1740-8
pubmed: 20194864
Am Soc Clin Oncol Educ Book. 2014;:205-13
pubmed: 24857078
Mol Oncol. 2019 Mar;13(3):624-635
pubmed: 30552794
Health Expect. 2018 Oct;21(5):858-869
pubmed: 29654652
BMC Public Health. 2020 Nov 3;20(1):1641
pubmed: 33143668
J Natl Cancer Inst. 2015 Mar 13;107(6):djv057
pubmed: 25770148
PLoS One. 2016 Mar 18;11(3):e0151966
pubmed: 26990301
J Cancer Surviv. 2018 Aug;12(4):528-536
pubmed: 29658062
Qual Health Res. 2011 Aug;21(8):1033-40
pubmed: 21447805
J Cancer Surviv. 2017 Aug;11(4):431-437
pubmed: 28130711
J Clin Oncol. 2018 Jul 20;36(21):2198-2205
pubmed: 29874136
Br J Cancer. 2013 Apr 16;108(7):1525-33
pubmed: 23481179
JAMA Intern Med. 2017 Dec 1;177(12):1855-1858
pubmed: 28973059
J Natl Cancer Inst. 2019 Feb 1;111(2):105-106
pubmed: 30085202
J Natl Cancer Inst. 2019 Feb 1;111(2):189-200
pubmed: 30085213
Pediatr Blood Cancer. 2017 Aug;64(8):
pubmed: 28266129
Int J Cancer. 2017 Jan 1;140(1):62-74
pubmed: 27632765
Psychooncology. 2016 Aug;25(8):933-41
pubmed: 26592199
JAMA Oncol. 2018 May 1;4(5):707-711
pubmed: 29049517
Int J Health Policy Manag. 2018 Mar 06;7(8):746-754
pubmed: 30078295
Eur J Cancer. 2012 Sep;48(13):2037-42
pubmed: 22196035
Psychooncology. 2013 Mar;22(3):708-14
pubmed: 22213575
J Pediatr Oncol Nurs. 2019 Jan/Feb;36(1):6-16
pubmed: 30798687
Qual Life Res. 2016 Apr;25(4):997-1005
pubmed: 26395276
Eur J Cancer. 2016 Sep;65:150-5
pubmed: 27498140
J Occup Rehabil. 2019 Mar;29(1):72-90
pubmed: 29524032
Psychooncology. 2021 Apr;30(4):485-492
pubmed: 33217089
Pediatr Blood Cancer. 2020 Mar;67(3):e28093
pubmed: 31762180
Pediatr Blood Cancer. 2015 Dec;62 Suppl 5:S619-31
pubmed: 26700920
Eur J Cancer Care (Engl). 2020 Jul;29(4):e13235
pubmed: 32215988
Psychiatr Rehabil J. 2020 Mar;43(1):72-75
pubmed: 31841014
Lancet Oncol. 2016 Oct;17(10):1354-1356
pubmed: 27733259
J Clin Oncol. 2017 Oct 20;35(30):3474-3481
pubmed: 28817372
Soc Sci Med. 2017 Oct;190:181-189
pubmed: 28865254
Cancer. 2017 Mar 1;123(5):869-878
pubmed: 27859009
Dtsch Arztebl Int. 2017 Nov 24;114(47):805-812
pubmed: 29229046
PLoS One. 2015 May 22;10(5):e0124290
pubmed: 26001046
Pediatr Blood Cancer. 2017 Oct;64(10):
pubmed: 28453181