Valoración de aspectos éticos y metodológicos en un estudio cualitativo con personas usuarias de Oncología Pediátrica

  1. María J. Escudero Carretero 12
  2. Noelia García Toyos 1
  3. Amelia I. Martín Barato 1
  4. Ainhoa Ruiz Azarola 1
  5. Olivia Pérez Corral 1
  6. Mª Ángeles Prieto Rodríguez 12
  7. Amets Suess Schwend 12
  1. 1 Escuela Andaluza de Salud Pública, Granad
  2. 2 Centro de Investigación Biomédica en Red sobre Epidemiología Y Salud Pública
    info

    Centro de Investigación Biomédica en Red sobre Epidemiología Y Salud Pública

    Madrid, España

    ROR https://ror.org/050q0kv47

Revista:
Empiria: Revista de metodología de ciencias sociales

ISSN: 1139-5737

Any de publicació: 2017

Número: 36

Pàgines: 149-176

Tipus: Article

DOI: 10.5944/EMPIRIA.36.2017.17863 DIALNET GOOGLE SCHOLAR lock_openDialnet editor

Altres publicacions en: Empiria: Revista de metodología de ciencias sociales

Resum

Background: In the context of a qualitative research with health care users in Paediatric Oncology and their family members, a self-assessment tool regarding ethical and methodological aspects of the study has been designed and implemented. Methods: Qualitative research with health care users in Paediatric Oncology and companions, in four hospitals from the Andalusian Public Healthcare System. Development and implementation of a self-assessment tool. Descriptive, semantic and pragmatic content analysis and triangulation conducted by the research team. Outcomes: The members of the research team highlight: 1. The usefulness of a cartoon-style Informed Consent form in a qualitative study with children, within a broader approach to research ethics, 2. The favourable assessment of the creative techniques, stressing the need for a differentiated application, and 3. The importance of reflecting on the experience of the research process. Conclusions: The application of a self-assessment tool is identified as a useful tool for evaluating ethical, methodological and self-reflective aspects in a qualitative study conducted with minors.

Referències bibliogràfiques

  • AMEZCUA, M. y A. GÁLVEZ TORO (2002): “Los modos de análisis en investigación cualitativa en salud: Perspectiva crítica y reflexiones en voz alta”, Rev Esp Salud Pública, 76(5), pp. 423-436.
  • ÅNGSTRÖM-BRÄNNSTRÖM, C., A. NORBERG y L. JANSSON (2008): “Narratives of Children with Chronic Illness about Being Comforted”, Journal of Pediatric Nursing, 23(4), pp. 310-316.
  • BARRIO-CANTALEJO, I.M. y P. SIMÓN-LORDA (2006): “Problemas éticos de la investigación cualitativa”, Medicina Clínica, 126(11), pp. 418-423.
  • BEECHER, H.K (1966): “Ethics and Clinical Research”, New England Journal of Medicine, 274, pp. 1354-1360.
  • CANNELLA G.S. e Y.S. LINCOLN (2007): “Predatory vs. Dialogic Ethics Constructing an Illusion or Ethical Practice as the Core of Research Methods”, Qualitative Inquiry, 13(3), pp. 315-335.
  • CARTER, B. y K. FORD (2013): “Researching children’s health experiences: The place for participatory, child-centered, arts-based approaches”, Research in Nursing & Health, 36(1), pp. 95-107.
  • CARTER, B. (2009): “Ticket box for child? The ethical positioning of children as vulnerable, researchers as barbarians and reviewers as overly cautious”, International Journal of Nursing Studies, 46, pp. 858-864.
  • CHEN, D.T. y L.L. SHEPERD (2009): “When, Why and How to Conduct Research in Child and Adolescent Psychiatry: Practical and Ethical Considerations”, Psychiatr Clin, 32, pp. 361-380.
  • COAD, J, G. PLUMRIDGE y A. METCALFE (2009): “Involving children and young people in the development of art-based research tools”, Nurse Researcher, 16(4), pp. 56-64.
  • CONDE, F. y C.P. ANDRÉS (1995): “La investigación cualitativa en Salud Pública”, Rev Esp Salud Pública, 69, pp. 145-149.
  • CORPORACIÓ PARC TAULÍ, Comité de Ética Asistencial (2003): Orientaciones para evaluar la capacidad, Sabadell, Corporació Parc Taulí.
  • CURTIS, K., K. LIABO, H. ROBERTS y M. BARKER (2004): “Consulted but not heard: a qualitative study of young people’s views of their local health service”, Health Expectations, 7(2), pp. 149-156.
  • DE ABAJO, F.J. (1997): “Investigación clínica en niños: fundamentación y requisitos éticos”, Rev Esp Pediatr, 53, pp. 134-150.
  • DUNCAN, R.E., S.E. DREWA, J. HODGSON y S.M. SAWYER (2009): “Is my mum going to hear this? Methodological and ethical challenges in qualitative health research with young people”, Social Science & Medicine, 69, pp. 1691-1699.
  • EINARSDOTTIR, J. (2005): “Playschool in pictures: children’s photographs as a research method”, Early Child Development and Care, 175(6), pp. 523-541.
  • FINLEY, S. (2011): “Arts-Based Inquiry”, en The Sage Handbook for Qualitative Research, London, Sage Publications, pp. 681-594.
  • GALENDE DOMÍNGUEZ, I. (2012): “Ética e investigación clínica en Pediatría”, Pediatr Integral, XVI(4), pp. 342.e1-342.e.8.
  • GIBSON, F., S. ALDISS, M. MORSTMAN, S. KUMPUNEN y A. RICHARDSON (2010): “Children and young people’s experiences of cancer care: A qualitative research study using participatory methods”, International Journal of Nursing Studies, 47, pp. 1397-1407.
  • GOLDBY, S. (1971): “Experiments at the Willowbrook State School”, Lancet, pp. 749.
  • GONZÁLEZ-CARRIÓN, P. (2005): “Experiencias y necesidades percibidas por los niños y adolescentes con cáncer y por sus familias”, Nure Investigación, 16, pp. 1-15.
  • GONZÁLEZ-GIL, T. (2007): “Las marionetas como recurso para la realización de entrevistas en profundidad con niños preescolares”, Enferm Clinic, 17(4), pp. 211216.
  • JOHNSON, J.C. y S.C. WELL (2011): “Elicitation Techniques for Interviewing”, en Handbook of Interview Research, Thousand Oaks, London, New Delhi, Sage Publications, pp. 491-514.
  • KNOWLES, J.G. y A.L. COLE, eds. (2008): Handbook of the Arts in Qualitative Research. Perspectives, Methodologies, Examples, and Issues, Thousand Oaks, SAGE Publications.
  • KONDO, K. y U. SJÖBERG (2012): “Children’s Perspectives through the Camera Lens. Reflections on Meaning-making Processes and Participatory Research”, Nordicom Review, 33(1), pp. 3-18.
  • MACK, R., E. GIARELLI y B.A. BERNHARDT (2009), “The Adolescent Research Participant: Strategies for Productive and Ethical Interviewing”, J Pediatr Nurs, 24(6), pp. 448-457.
  • MAH, J.K., S. TOUGH, T. FUNG, K. DOUGLAS-ENGLAND y M. VERHOEF (2006): “Adolescent quality of life and satisfaction with care”, Journal of Adolescent Health, pp. 28:607.e1-607.e7.
  • MAND, K (2012): “Giving children a ‘voice’: arts-based participatory research activities and representation”, International Journal of Social Research Methodology, 15(2), pp. 149-160.
  • MARCH, JC, MA PRIETO, F. MARTÍNEZ y C. GUERRERO (2003): KID´S Hospital: La calidad percibida por los niños y niñas de los hospitales de Andalucía, Hitos de Ciencias Económico Administrativas, 23, pp. 25-30.
  • MASON, J. y S. HOOD (2011): “Exploring issues of children as actors in social research”. Children and Youth Services Review, 33, pp. 490-495.
  • MCNIFF, S. (1998): Art-Based Research, London, Jessica Kingsley Publisher. ONU, Organización de las Naciones Unidas, Asamblea General (1989 [entrada en vigor 1990]): Convención sobre los Derechos del Niño, disponible en http://www2.ohchr. org/spanish/law/crc.htm [consulta: 20/04/2016].
  • ONU, Organización de las Naciones Unidas, Comité sobre los Derechos del Niño (2005): Observación General Nº 7 (2005): Realización de los derechos del niño en la primera infancia, disponible en http://www2.ohchr.org/english/bodies/crc/docs/ AdvanceVersions/GeneralComment7Rev1_sp.pdf [consulta: 20/04/2016].
  • ONU, Organización de las Naciones Unidas, Comité sobre los Derechos del Niño (2009): Observación General Nº 12 (2009): El derecho del niño a ser escuchado, disponible en http://www2.ohchr.org/english/bodies/crc/docs/AdvanceVersions/CRC-C-GC-12_sp.doc [consulta: 20/04/2016].
  • ONU, Organización de las Naciones Unidas, Comité sobre los Derechos del Niño (2013): Observación General Nº 15 (2013) sobre el derecho del niño al disfrute del más alto nivel posible de salud (artículo 24), disponible en: http://www2.ohchr.org/english/bodies/crc/docs/GC.15-Sp.pdf [consulta: 20/04/2016].
  • PART, S.S. y M.H. GRAYSON (2008): “Clinical research: Protection of the ‘vulnerable’?”, J Allergy Clin Immunol, 121, pp. 1103-1107.
  • PICKLER, R.H. y A.T. MARTIN (2010): “Protection of Children in Research”, J Pediatr Health Care, 24, pp. 66-68.
  • SAMMONS, H.M. y E.S. STARKEY (2011): “Ethical issues of clinical trials in children”, Paediatrics and Child Health, 22:2.
  • SHAW, C., L.-M. BRADY y C. DAVEY (2011): Guidelines for Research with Children and Young People, NCB Research Centre, London, National Children’s Bureau.
  • TEUNISSEN, T., M. VISSE, P. DE BOER y T.A. ABMA (2011): “Patient issues in health research and quality of care: an inventory and data synthesis”, Health Expectations, doi: 10.1111/j.1369-7625.2011.00718.x
  • TRELL, E.-M. y B. VAN HOVEN (2010): “Making sense of place: exploring creative and (inter)active research methods with young people”, Fennia, 188(1), pp. 91-104.
  • ULIN, P.R., E.T. ROBINSON y E.E. Tolley (2006, eds.): Investigación aplicada en salud pública. Métodos cualitativos, Washington, OPS, Organización Panamericana de la Salud.
  • ULLÁN, A.M., M.H. BELVER, I. SERRANO, J. DELGADO y M. BADÍA (2012): “Perspectives of Youths and Adults Improve the Care of Hospitalized Adolescents in Spain”, J Pediatr Health Care, 26, pp. 182-192.
  • WELLESLEY, H. y I.A. JENKINS (2012): Consent in children. Anaesthesia and Intensive Care Medicine, 13(5), pp. 240-242.
  • WILKINSON, J (2000): Children and Participation: Research, monitoring and evaluation with children and young people, London, Save the Children.
  • WOODGATE, R.L. y L. F. DEGNER (2003): “Expectations and beliefs about children’s cancer symptoms: perspectives of children with cancer and their families”, Foro de Oncol Nur, 30, pp. 479-491.
  • YBARRA, M.L., J. LANGHINRICHSEN-ROHLING, J. FRIEND y M. DIENERWEST (2009): “Impact of Asking Sensitive Questions about Violence to Children and Adolescents”, J Adolesc Health, 45(5), 499-450.