Research with vulnerable families caring for children with life-limiting conditions

Qual Health Res. 2010 Apr;20(4):496-505. doi: 10.1177/1049732309356097. Epub 2009 Dec 3.


Methodological challenges associated with sensitive research, such as research with vulnerable families, have been well described, but there are few examples of how such challenges have been addressed in specific projects. To help address this gap, we describe how we designed and conducted a qualitative study of 91 members of 29 families caring for children or young people with life-limiting conditions. Although some issues associated with researching sensitive topics were anticipated, others were encountered that were not expected. We discuss insights gained from this study in relation to factors that influence effectiveness of recruitment, the quality of data collection, and the safety of participants and researchers.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Aged
  • Caregivers / psychology
  • Child
  • Child Welfare*
  • Family*
  • Female
  • Humans
  • Interviews as Topic
  • Male
  • Middle Aged
  • Terminally Ill*
  • Vulnerable Populations*
  • Young Adult