Skip to main content
SpringerLink
Log in

Including Vulnerable Groups in Health Research

  • Chapter
  • First Online:
Using Naturally Occurring Data in Qualitative Health Research

Abstract

Commonly, health research involves participants who may be considered vulnerable in some way, by virtue of their illness or health status, their age, or some other factor. Recruiting participants who are considered vulnerable has been the subject of much critical discussion, in terms of ensuring those voices are not excluded, but also in terms of ethics and protection. However, the notion of ‘vulnerability’ is contentious, and there has been some debate regarding which populations ought to be classified in this way. When including these groups in naturally occurring data collection, these issues are also relevant and important. Thus, the focus for the chapter is on this concept of vulnerability in qualitative health research, and the role that gatekeepers play in protecting them.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 69.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Hardcover Book
USD 89.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  • Alderson, P. (2004). Ethics. In S. Fraser, V. Lewis, S. Ding, M. Kellett, & C. Robinson (Eds.), Doing research with children and young people (pp. 97–112). London: Sage.

    Google Scholar 

  • Appleton, J. (1994). The concept of vulnerability in relation to Child Protection: Health visitors’ perceptions. Journal of Advanced Nursing, 20, 1132–1140.

    Article  CAS  Google Scholar 

  • Bielby, P. (2008). Competence and vulnerability in biomedical research. New York, NY: Springer.

    Book  Google Scholar 

  • Bo Paludan, M., & Popplewell, R. (2013). Praxis Note 65: Turning voice into action. A discussion of three action research studies conducted by the Danish Children and Youth Network and their learning outcomes. Oxford: International NGO Training and Research Centre (INTRAC).

    Google Scholar 

  • Castro-Gilliard, A. (2017). Pregnant women as “vulnerable populations”: The cost and a possible solution. Retrieved March 9, 2018, from http://www.vabioethics.com/content/2017/10/2/pregnant-women-as-vulnerable-populations-the-cost-and-a-possible-solution

  • Cemlyn, S. (2000). From neglect to partnership? Challenges for social services in promoting the welfare of traveller children. Child Abuse Review, 9, 349–363.

    Article  Google Scholar 

  • Coyne, I. (2010). Accessing children as research participants: examining the role of gatekeepers. Child: Care, Health and Development, 36(4), 452–454.

    CAS  Google Scholar 

  • Dervin, F. (2016). Discourses of othering. In J. Tracy (Ed.), The international encyclopedia of social interaction (pp. 43–55). London: Palgrave Pivot.

    Google Scholar 

  • Emmel, N., Hughes, K., Greenhalgh, J., & Sales, A. (2007). Accessing socially excluded people—Trust and the gatekeeper in the researcher-participant relationship. Sociological Research Online, 12(2). Retrieved from http://www.socresonline.org.uk/12/2/emmel.html https://doi.org/10.5153/sro.1512

    Article  Google Scholar 

  • Fazel, S., Hayes, A., Bartellas, K., Clerici, M., & Trestman, R. (2016). The mental health of prisoners: A review of prevalence, adverse outcomes and interventions. Lancet Psychiatry, 3(9), 871–881.

    Article  Google Scholar 

  • Freeman, M., & Mathison, S. (2009). Researching children’s experiences. New York, NY: The Guildford Press.

    Google Scholar 

  • Goward, P., Repper, J., Appleton, L., & Hagan, T. (2006). Crossing boundaries. Identifying and meeting the mental health needs of gypsies and travellers. Journal of Mental Health, 15(3), 315–327.

    Article  Google Scholar 

  • Heath, S., Charles, V., Crow, G., & Wiles, R. (2004). Informed consent, gatekeepers & go-betweens. Paper presented at ‘The Ethics & Social Relations of Research’ conference (Sixth international conference on social science methodology). Amsterdam.

    Google Scholar 

  • Heath, S., Charles, V., Crow, G., & Wiles, R. (2007). Informed consent, gatekeepers and go-betweens: Negotiating consent in child and youth-oriented institutions. British Educational Research Journal, 33(3), 403–417.

    Article  Google Scholar 

  • Jansson, D. (2005). Race, power, and internal orientalism in the US: Reflections on Edward Said and the responsibilities of intellectuals. The Arab World Geographer, 8(1–2), 32–45.

    Google Scholar 

  • Krugman, S., & Shapiro, S. (1971). Experiments at the Willowbrook State School. The Lancet, 297(7706), 966–967.

    Article  Google Scholar 

  • Lawrie, B. (1983). Travelling families in East London—Adapting health visiting methods to a minority group. Health Visitor, 56, 26–28.

    CAS  PubMed  Google Scholar 

  • Levine, C., Fadden, R., Grady, C., Hammerschmidt, D., Eckenwiler, L., Sugarman, J., & Consortium to Examine Clinical Research Ethics. (2004). The limitations of ‘vulnerability’ as a protection for human research participants. American Journal of Bioethics, 4, 44–49.

    Article  Google Scholar 

  • Liamputtong, P. (2007). Researching the vulnerable: A guide to sensitive research methods. London: Sage.

    Book  Google Scholar 

  • Lund, A., & Engelsrud, G. (2008). “I am not that old”: Inter-personal experiences of thriving and threats at a senior centre. Ageing and Society, 28(5), 675–692.

    Article  Google Scholar 

  • Mander, R. (1992). Seeking approval for research access: The gatekeeper’s role in facilitating a study of the care of the relinquishing mother. Journal of Advanced Nursing, 17, 1460–1464.

    Article  CAS  Google Scholar 

  • McCaffery, J. (2009). Gypsies and Travellers: Literacy, discourse and communicative practices. Compare, 39(5), 643–657.

    Article  Google Scholar 

  • Nickel, P. (2006). Vulnerable populations in research: The case of the seriously ill. Theoretical Medicine and Bioethics, 27(3), 245–264.

    Article  Google Scholar 

  • Nordentoft, H., & Kappel, N. (2011). Vulnerable participants in health research: Methodological and ethical challenges. Journal of Social Work Practice, 25(3), 365–376.

    Article  Google Scholar 

  • O’Reilly, M., Ronzoni, P., & Dogra, N. (2013). Research with children: Theory and practice. London: Sage.

    Google Scholar 

  • Peroni, L., & Timmer, A. (2013). Vulnerable groups: The promise of an emerging concept in European Human Rights Convention law. International Journal Constitutional Law, 11(4), 1056–1071.

    Article  Google Scholar 

  • Piercy, H., & Hargate, M. (2004). Social research on the under-16s: A consideration of the issues from a UK perspective. Journal of Child Health Care, 8(4), 253–263.

    Article  Google Scholar 

  • Reel, K. (2011). Clinical considerations for allied professionals on research ethics—Vulnerable research participant populations: Ensuring ethical recruitment and enrolment. Heart Rhythm, 8(6), 947–950.

    Article  Google Scholar 

  • Rogers, W., & Lange, M. (2013). Rethinking the vulnerability of minority populations in research. American Journal of Public Health, 103(12), 2141–2146.

    Article  Google Scholar 

  • Rogers, W., Mackenzie, C., & Dodds, S. (2012). Why bioethics needs a concept of vulnerability. International Journal of Fem Approaches Bioethics, 5(2), 11–38.

    Article  Google Scholar 

  • Ruof, M. (2004). Vulnerability, vulnerable populations, and policy. Kennedy Institute of Ethics Journal, 14(4), 411–425.

    Article  Google Scholar 

  • Shepard, M., & Mahon, M. (2002). Vulnerable families: Research findings and methodological challenges. Journal of Family Nursing, 8(4), 309–314.

    Article  Google Scholar 

  • Shivayogi, P. (2013). Vulnerable population and methods for their safeguard. Perspectives Clinical Research, 4(1), 53–57.

    Article  Google Scholar 

  • Smith, D., & Ruston, A. (2013). ‘If you feel that nobody wants you you’ll withdraw into your own’: Gypsies/Travellers, networks and healthcare utilisation. Sociology of Health & Illness, 35(8), 1196–1210.

    Article  Google Scholar 

  • Spiers, J. (2000). New perspectives on vulnerability using emic and etic approaches. Journal of Advanced Nursing, 31(3), 715–721.

    Article  CAS  Google Scholar 

  • Strong, T., & Zeman, D. (2005). Othering’ and ‘selving’ in therapeutic dialogue. European Journal of Psychotherapy, Counselling and Health, 7(4), 245–261.

    Article  Google Scholar 

  • Tisdall, E., & Davis, J. (2004). Making a difference? Bringing children’s and young people’s views into policy-making. Children and Society, 18, 131–142.

    Article  Google Scholar 

  • van der Zande, I., van der Graaf, R., Oudijk, M., & van Delden, J. (2017). Vulnerability of pregnant women in clinical research. Journal of Medical Ethics, 43(10), 657–663.

    Article  Google Scholar 

  • World Medical Association. (2008, October). WMA Declaration of Helsinki—Ethical principles for medical research involving human subjects—59th WMA General Assembly. Seoul, Korea.

    Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Department of Social and Political Science, University of Chester, Chester, Cheshire, UK

    Nikki Kiyimba

  2. School of Education, Indiana University, Bloomington, IN, USA

    Jessica Nina Lester

  3. The Greenwood Institute of Child Health, University of Leicester, Leicester, Leicestershire, UK

    Michelle O’Reilly

Authors
  1. Nikki Kiyimba
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Jessica Nina Lester
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Michelle O’Reilly
    View author publications

    You can also search for this author in PubMed Google Scholar

Rights and permissions

Reprints and permissions

Copyright information

© 2019 Springer International Publishing AG, part of Springer Nature

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Kiyimba, N., Lester, J.N., O’Reilly, M. (2019). Including Vulnerable Groups in Health Research. In: Using Naturally Occurring Data in Qualitative Health Research. Springer, Cham. https://doi.org/10.1007/978-3-319-94839-3_9

Download citation

  • DOI: https://doi.org/10.1007/978-3-319-94839-3_9

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-319-94838-6

  • Online ISBN: 978-3-319-94839-3

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics

Search

Navigation