A qualitative investigation of reasoning behind decisions to decline participation in a research intervention: A study-within-a-trial

J Health Psychol. 2023 Mar;28(4):374-387. doi: 10.1177/13591053211037736. Epub 2021 Aug 6.

Abstract

The current study-within-a-trial explored individuals' decisions to decline participation in research trialling a chronic illness-focused therapy (i.e. multiple sclerosis). Four themes were identified from seven semi-structured interviews with participation decliners and were confirmed by the host trial's Patient & Public Involvement (PPI) panel: acknowledgement of the value of research; 'fit' of the study; misinterpretation of participant information; and 'ignorance is bliss' - discussed in light of theory and research. This study-within-a-trial extends research on trial recruitment and participation decline; while also suggesting that PPI can be utilised in both a practical and impactful manner.

Keywords: cognitive occupation-based programme for people living with multiple sclerosis (COB-MS); decliner; patient & public involvement; recruitment; study-within-a-trial.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Humans
  • Multiple Sclerosis* / therapy
  • Patient Participation
  • Problem Solving*
  • Qualitative Research