Children's voices on their values and moral dilemmas when being cared and treated for cancer- a qualitative interview study.
Childhood cancer care
Children
Ethics
Moral dilemmas
Qualitative
Values
Journal
BMC medical ethics
ISSN: 1472-6939
Titre abrégé: BMC Med Ethics
Pays: England
ID NLM: 101088680
Informations de publication
Date de publication:
26 Jun 2024
26 Jun 2024
Historique:
received:
25
03
2024
accepted:
18
06
2024
medline:
27
6
2024
pubmed:
27
6
2024
entrez:
26
6
2024
Statut:
epublish
Résumé
Childhood cancers affect about 350 children every year in Sweden and are life-threatening diseases. During the treatment period, situations arise that can become morally challenging for the child. When knowing children's values and morally challenging situations in childhood cancer care, targeted ethics support could be developed and used in care. To explore children's values and moral dilemmas when undergoing cancer treatment. This is a qualitative study based on empirical data. The data collection was conducted through three focus group interviews and six individual interviews with children between 10 and 18 years (n = 16). A content analysis methodology was used to generate themes. Children who were/have been treated for cancer at three childhood cancer centres in Sweden were invited to participate. The study was approved by the Swedish Ethical Review Authority. The children's participation was based on voluntariness and consent/assent. During the analysis, five themes of values emerged: Personal relationships, Bodily ease and identity, Feeling in control and being involved, Positive distractions and Right care that is needed. Their moral dilemmas were thematized into: Should I consider others or not? Should I rest or not? and Should I refuse treatment or not? Children undergoing cancer treatment want to have personal relationships with healthcare professionals. Their moral dilemmas were about questioning their own physical and psychological well-being against their expectations, the values of others and the treatment required. Further research is needed to understand how to deal with moral dilemmas in children undergoing cancer treatment.
Sections du résumé
BACKGROUND
BACKGROUND
Childhood cancers affect about 350 children every year in Sweden and are life-threatening diseases. During the treatment period, situations arise that can become morally challenging for the child. When knowing children's values and morally challenging situations in childhood cancer care, targeted ethics support could be developed and used in care.
AIM
OBJECTIVE
To explore children's values and moral dilemmas when undergoing cancer treatment.
METHODS
METHODS
This is a qualitative study based on empirical data. The data collection was conducted through three focus group interviews and six individual interviews with children between 10 and 18 years (n = 16). A content analysis methodology was used to generate themes. Children who were/have been treated for cancer at three childhood cancer centres in Sweden were invited to participate. The study was approved by the Swedish Ethical Review Authority. The children's participation was based on voluntariness and consent/assent.
FINDINGS
RESULTS
During the analysis, five themes of values emerged: Personal relationships, Bodily ease and identity, Feeling in control and being involved, Positive distractions and Right care that is needed. Their moral dilemmas were thematized into: Should I consider others or not? Should I rest or not? and Should I refuse treatment or not?
CONCLUSION
CONCLUSIONS
Children undergoing cancer treatment want to have personal relationships with healthcare professionals. Their moral dilemmas were about questioning their own physical and psychological well-being against their expectations, the values of others and the treatment required. Further research is needed to understand how to deal with moral dilemmas in children undergoing cancer treatment.
Identifiants
pubmed: 38926715
doi: 10.1186/s12910-024-01075-3
pii: 10.1186/s12910-024-01075-3
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
75Informations de copyright
© 2024. The Author(s).
Références
National Board of Health and Welfare. National Board of Health and Welfare 2020. Stockholm, Sweden: The National Board of Health and Welfare [Socialstyrelsen].
Lam CG, Howard SC, Bouffet E, et al. Science and health for all children with cancer. Science. 2019;363:1182–6.
doi: 10.1126/science.aaw4892
Socialstyrelsen. National Cancer Register, https://www.socialstyrelsen.se/en/statistics-and-data/registers/national-cancer-register/ (accessed 13 august 2023).
Mant J, Kirby A, Cox KJ, et al. Children’s experiences of being diagnosed with cancer at the early stages of treatment; an interpretive phenomenological analysis. Clin Child Psychol Psychiatry. 2019;24:3–18.
doi: 10.1177/1359104518788400
Sisk B, Kang TI, Goldstein R, DuBois JM, Mack JW. Decisional burden among parents of children with cancer. Cancer. 2019;125(8):1365–72.
doi: 10.1002/cncr.31939
Ruhe KM, Badarau DO, Brazzola P, Hengartner H, Elger BS, Wangmo T, et al. Participation in pediatric oncology: views of child and adolescent patients. Psychooncology. 2016;25(9):1036–42. https://doi.org/10.1002/pon.4053 .
doi: 10.1002/pon.4053
Nilsson S, Eriksson A, Sörman A, et al. Children’s and adolescents’ experiences of living with cancer. Nurs Child Young People. 2021;33:10–6.
doi: 10.7748/ncyp.2020.e1304
Darcy L, Knutsson S, Huus K, et al. The everyday life of the young child shortly after receiving a cancer diagnosis, from both children’s and parent’s perspectives. Cancer Nurs. 2014;37:445–56.
doi: 10.1097/NCC.0000000000000114
Kim Y, Lee KS, Koh KN. Difficulties faced by long-term childhood cancer survivors: a qualitative study. Eur J Oncol Nurs. 2018;36:129–34.
doi: 10.1016/j.ejon.2018.08.003
Molewijk B, Zadelhoff Ev, Lendemeijer B, Widdershoven GAM. Implementing moral case deliberation in Dutch health care; improving moral competency of professionals and the quality of care. In Bioethica Forum 2008. pp.57–65.
Rachels J, Rachels S. The elements of moral philosophy. Mcgraw Hill Higher Education; 2019.
Thompson IE. Nursing ethics. Edinburgh: Churchill Livingstone Elsevier; 2006.
Johnson L-M, Church CL, Metzger M, et al. Ethics Consultation in Pediatrics: long-term experience from a Pediatric Oncology Center. Am J Bioeth. 2015;15:3–17.
doi: 10.1080/15265161.2015.1021965
Schröder Håkansson A, Pergert P, Abrahamsson J, Stenmarker M. Balancing values and obligations when obtaining informed consent: Healthcare professionals’ experiences in Swedish paediatric oncology. Acta Paediatr. 2019.
Alahmad G, Al-Kamli H, Alzahrani H. Ethical challenges of Pediatric Cancer Care: interviews with nurses in Saudi Arabia. Cancer Control. 2020;27:1–8.
doi: 10.1177/1073274820917210
de Vries MC, Houtlosser M, Wit JM, et al. Ethical issues at the interface of clinical care and research practice in pediatric oncology: a narrative review of parents’ and physicians’ experiences. BMC Med Ethics. 2011;12:18–18.
doi: 10.1186/1472-6939-12-18
Odeniyi F, Nathanson PG, Schall TE, et al. Communication challenges of oncologists and intensivists Caring for Pediatric Oncology patients: a qualitative study. J Pain Symptom Manage. 2017;54:909–15.
doi: 10.1016/j.jpainsymman.2017.06.013
Bartholdson C, Lützén K, Blomgren K, et al. Experiences of ethical issues when caring for children with cancer. Cancer Nurs. 2015;38:125–32.
doi: 10.1097/NCC.0000000000000130
Weiner C, Pergert P, Castor A, et al. Difficult situations and moral questions raised during moral case deliberations in Swedish childhood cancer care – A qualitative nationwide study. Eur J Oncol Nurs. 2022;60:102189.
doi: 10.1016/j.ejon.2022.102189
Stevens PE, Pletsch PK. Ethical issues of informed consent: mothers’ experiences enrolling their children in bone marrow transplantation research. Cancer Nurs. 2002;25:81–7.
doi: 10.1097/00002820-200204000-00001
Alahmad G. Informed consent in Pediatric Oncology: a systematic review of qualitative literature. Cancer Control. 2018;25(1):1073274818773720.
doi: 10.1177/1073274818773720
Weiner C, Pergert P, Castor A, Molewijk B, Bartholdson C. Sheltering in chaos: parents’ experiences when facing moral challenges in childhood cancer care. Ethics & Behavior.1–14.
Quinn GP, Murphy D, Knapp C, et al. Who decides? Decision making and fertility preservation in teens with cancer: a review of the literature. J Adolesc Health. 2011;49:337–46.
doi: 10.1016/j.jadohealth.2011.01.005
Burns KC, Hoefgen H, Strine A, et al. Fertility preservation options in pediatric and adolescent patients with cancer. Cancer. 2018;124:1867–76.
doi: 10.1002/cncr.31255
Hinds PS, Oakes L, Furman W, et al. End-of-life decision making by adolescents, parents, and healthcare providers in pediatric oncology: research to evidence-based practice guidelines. Cancer Nurs. 2001;24:122–34. quiz 135 – 126.
doi: 10.1097/00002820-200104000-00007
Smith LE, Maybach AM, Feldman A, et al. Parent and child preferences and styles of Communication about Cancer diagnoses and Treatment. J Pediatr Oncol Nurs. 2019;36:390–401.
doi: 10.1177/1043454219859235
SFS. In: Sweden, GOo, editors. Convention on the rights of the child. Stockholm: Government Offices of Sweden; 2018. p. 1197.
Graneheim U, Lindgren B-M, Lundman B. Methodological challenges in qualitative content analysis: a discussion paper. Nurse Educ Today. 2017;56:29–34.
doi: 10.1016/j.nedt.2017.06.002
Lindgren B-M, Lundman B, Graneheim U. Abstraction and interpretation during the qualitative content analysis process. Int J Nurs Stud Adv. 2020;108:103632.
doi: 10.1016/j.ijnurstu.2020.103632
Graneheim U, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today. 2004;24:105–12.
doi: 10.1016/j.nedt.2003.10.001
Polit DF, Beck CT. Nursing Research. Generating and assessing evidence for nursing practice. Philadelphia: Wolters Kluwer Health/Lippincott Williams & Wilkins; 2017.
Lin B, Gutman T, Hanson CS, et al. Communication during childhood cancer: systematic review of patient perspectives. Cancer. 2020;126:701–16.
doi: 10.1002/cncr.32637
Comas Carbonell E, Mateo-Ortega D, Busquets-Alibés E. The psychological experience of pediatric oncology patients facing life-threatening situations: a systematic review with narrative synthesis. Palliat Support Care. 2021;19:733–43.
doi: 10.1017/S1478951521000031
Carlsson IM, Nygren JM, Svedberg P. Patient participation, a prerequisite for care: a grounded theory study of healthcare professionals’ perceptions of what participation means in a paediatric care context. Nurs open. 2018;5:45–52.
doi: 10.1002/nop2.106
Gilljam B-M, Arvidsson S, Nygren JM, et al. Promoting participation in healthcare situations for children with JIA: a grounded theory study. Int J Qual Stud Health Well-being. 2016;11:30518.
doi: 10.3402/qhw.v11.30518
Ventovaara P. Moral distress and ethical climate in pediatric oncology care. Stockholm: Karolinska Institutet; 2023.
Mattsson J, Forsner M, Castren M, et al. Caring for children in pediatric intensive care units: an observation study focusing on nurses’ concerns. Nurs Ethics. 2013;20:528–38.
doi: 10.1177/0969733012466000
Christensen SR, Carlsen LT. From well-known to changed everyday family life in families with childhood cancer: a grounded theory of disrupted family dynamic. Psychooncology. 2022;31:282–9.
doi: 10.1002/pon.5809
Eaton Russell C, Bouffet E, Beaton J, et al. Balancing grief and survival: experiences of children with brain tumors and their parents. J Psychosoc Oncol. 2016;34:376–99.
doi: 10.1080/07347332.2016.1212448
Weaver MS, Baker JN, Gattuso JS, et al. Adolescents’ preferences for treatment decisional involvement during their cancer. Cancer. 2015;121:4416–24.
doi: 10.1002/cncr.29663
Zwaanswijk M, Tates K, van Dulmen S, et al. Young patients’, parents’, and survivors’ communication preferences in paediatric oncology: results of online focus groups. BMC Pediatr. 2007;7:35.
doi: 10.1186/1471-2431-7-35
Coyne I, Amory A, Kiernan G, et al. Children’s participation in shared decision-making: children, adolescents, parents and healthcare professionals’ perspectives and experiences. Eur J Oncol Nurs. 2014;18:273–80.
doi: 10.1016/j.ejon.2014.01.006
Hirata M, Kobayashi K. Experiences with the end-of-life decision-making process in children with cancer, their parents, and healthcare professionals: a systematic review and meta-ethnography. J Pediatr Nurs. 2023;69:e45–64.
doi: 10.1016/j.pedn.2022.12.004
Souza RLA, Mutti CF, Santos RPD, et al. Hospitalization perceived by children and adolescents undergoing cancer treatment. Rev Gaucha Enferm. 2021;42:e20200122.
doi: 10.1590/1983-1447.2021.20200122
Jalmsell L, Lövgren M, Kreicbergs U, et al. Children with cancer share their views: tell the truth but leave room for hope. Acta Paediatr. 2016;105:1094–9.
doi: 10.1111/apa.13496
Young K, Bowers A, Bradford N. Families’ experiences of child and adolescent brain tumor: a systematic review and synthesis of qualitative research. Psychooncology. 2021;30:1643–62.
doi: 10.1002/pon.5745
Miller VA, Harris D. Measuring children’s decision-making involvement regarding chronic illness management. J Pediatr Psychol. 2012;37:292–306.
doi: 10.1093/jpepsy/jsr097
Kohlberg L. Stages of moral development. Moral Educ. 1971;1:23–92.
doi: 10.3138/9781442656758-004
Malterud K. The art and science of clinical knowledge: evidence beyond measures and numbers. Lancet. 2001;358:397–400.
doi: 10.1016/S0140-6736(01)05548-9
Moon MD, Triangulation. A method to increase validity, reliability, and Legitimation in Clinical Research. J Emerg Nurs. 2019;45:103–5.
doi: 10.1016/j.jen.2018.11.004
Halliday M, Mill D, Johnson J, et al. Let’s talk virtual! Online focus group facilitation for the modern researcher. Res Social Adm Pharm. 2021;17:2145–50.
doi: 10.1016/j.sapharm.2021.02.003
SFS. Ethical Review Act. Stockholm: Swedish Parliament. 2008:192.