Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals' perceptions and experiences

被引:4
|
作者
Norbaeck, Kajsa [1 ]
Hoeglund, Anna T. [1 ]
Godskesen, Tove [1 ,2 ]
Frygner-Holm, Sara [1 ,3 ]
机构
[1] Ctr Res Ethics & Bioeth, Dept Publ Hlth & Caring Sci, Box 564, S-75122 Uppsala, Sweden
[2] Marie Cederschiold Univ, Palliat Res Ctr, Dept Hlth Care Sci, Box 11189, S-10061 Stockholm, Sweden
[3] Dept Womens & Childrens Hlth, Physiotherapy & Behav Med, Box 593, S-75124 Uppsala, Sweden
关键词
Paediatric oncology; Ethics; Research recruitment; Informed consent; Assent; Shared decision-making; Ethical challenges; Healthcare professionals; Qualitative research; CHILDHOOD-CANCER; DECISION-MAKING; ADOLESCENTS; PARTICIPATION; CHALLENGES; ISSUES;
D O I
10.1186/s12910-023-00901-4
中图分类号
B82 [伦理学(道德学)];
学科分类号
摘要
BackgroundResearch is crucial to improve treatment, survival and quality of life for children with cancer. However, recruitment of children for research raises ethical challenges. The aim of this study was to explore and describe ethical values and challenges related to the recruitment of children with cancer for research, from the perspectives and experiences of healthcare professionals in the Swedish context. Another aim was to explore their perceptions of research ethics competence in recruiting children for research.MethodsAn explorative qualitative study using semi-structured interviews with key informants. Seven physicians and ten nurses were interviewed. Interviews were analysed using inductive qualitative content analysis.ResultsThe respondents' ethical challenges and values in recruitment mainly concerned establishing relationships and trust, meeting informational needs, acknowledging vulnerability, and balancing roles and interests. Ensuring ethical competence was raised as important, and interpersonal and communicative skills were highlighted.ConclusionThis study provides empirical insight into recruitment of children with cancer, from the perspectives of healthcare professionals. It also contributes to the understanding of recruitment as a relational process, where aspects of vulnerability, trust and relationship building are important, alongside meeting informational needs. The results provide knowledge on the complexities raised by paediatric research and underpin the importance of building research ethics competence to ensure that the rights and interests of children with cancer are protected in research.
引用
收藏
页数:13
相关论文
共 50 条
  • [31] Ethical concerns regarding guidelines for the conduct of clinical research on children
    Edwards, SD
    McNamee, MJ
    JOURNAL OF MEDICAL ETHICS, 2005, 31 (06) : 351 - 354
  • [32] Recruiting and consenting into a peripartum trial in an emergency setting: a qualitative study of the experiences and views of women and healthcare professionals
    Julia Lawton
    Claire Snowdon
    Susan Morrow
    Jane E. Norman
    Fiona C. Denison
    Nina Hallowell
    Trials, 17
  • [33] Recruiting and consenting into a peripartum trial in an emergency setting: a qualitative study of the experiences and views of women and healthcare professionals
    Lawton, Julia
    Snowdon, Claire
    Morrow, Susan
    Norman, Jane E.
    Denison, Fiona C.
    Hallowell, Nina
    TRIALS, 2016, 17
  • [34] Exploring healthcare professionals' experiences with informal family cancer caregiving
    Santerre-Theil, Ariane
    Brown, Tyler L.
    Korner, Annett
    Loiselle, Carmen G.
    SUPPORTIVE CARE IN CANCER, 2022, 30 (09) : 7745 - 7754
  • [35] Exploring healthcare professionals’ experiences with informal family cancer caregiving
    Ariane Santerre-Theil
    Tyler L. Brown
    Annett Körner
    Carmen G. Loiselle
    Supportive Care in Cancer, 2022, 30 : 7745 - 7754
  • [36] Exploring healthcare professionals' experiences when communicating with pregnant women about stillbirth
    Rutherford, Emily
    Sanchez, Tamara Escanuela
    O'Donoghue, Keelin
    BJOG-AN INTERNATIONAL JOURNAL OF OBSTETRICS AND GYNAECOLOGY, 2023, 130 : 31 - 32
  • [37] Researchers' Perceptions of the Ethical Implications of Pharmacogenomics Research with Children
    Avard, D.
    Silverstein, T.
    Sillon, G.
    Joly, Y.
    PUBLIC HEALTH GENOMICS, 2009, 12 (03) : 191 - 201
  • [38] The perceptions of families with children having chronic diseases and their relationships with healthcare professionals
    Rigotti Baltor, Marja Rany
    Keller de Matos, Ana Paula
    Wernet, Monika
    Liston Andrade Ferreira, Noeli Marchioro
    Dupas, Giselle
    REVISTA DA ESCOLA DE ENFERMAGEM DA USP, 2013, 47 (04) : 808 - 814
  • [39] Public perceptions of artificial intelligence in healthcare: ethical concerns and opportunities for patient-centered care
    Witkowski, Kaila
    Okhai, Ratna
    Neely, Stephen R.
    BMC MEDICAL ETHICS, 2024, 25 (01):
  • [40] Healthcare Professionals' Views of the Experiences of Children With Cancer and Their Families Living in Tasmania: An Interpretive-Descriptive Study
    Hammersley, Jessica
    Ford, Karen
    Campbell, Steven
    COMPREHENSIVE CHILD AND ADOLESCENT NURSING-BUILDNG EVIDENCE FOR PRACTICE, 2018, 41 (03): : 181 - 198