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A qualitative investigation of reasoning behind decisions to decline participation in a research intervention: A

Christopher P Dwyer1, Anusha Moses1, Fionnuala M Rogers1

  • 1National University of Ireland, Ireland.

Journal of Health Psychology
|August 6, 2021
PubMed

Insights

Understanding why patients decline research participation is crucial for clinical trials. Key reasons include perceived study fit, information misinterpretation, and a desire for

Area of Science:

  • Clinical research methodology
  • Patient recruitment strategies
  • Chronic illness management

Background:

  • Understanding participation decline is vital for effective clinical trial recruitment.
  • Chronic illness trials face unique recruitment challenges.
  • Patient and Public Involvement (PPI) can enhance research processes.

Purpose of the Study:

  • To explore reasons why individuals decline participation in a chronic illness therapy trial.
  • To identify key themes influencing decisions to opt-out of clinical research.
  • To assess the role of PPI in understanding participation barriers.

Main Methods:

  • A study-within-a-trial design was employed.
  • Seven semi-structured interviews were conducted with individuals who declined trial participation.
  • Thematic analysis was used to identify key decision-making factors.
  • Findings were validated by the host trial's Patient & Public Involvement (PPI) panel.

Main Results:

  • Four primary themes emerged: acknowledgement of research value, study 'fit', information misinterpretation, and 'ignorance is bliss'.
  • These themes highlight diverse patient perspectives on research participation.
  • PPI panel confirmation underscored the practical relevance of the identified themes.

Conclusions:

  • Patient decisions to decline research participation are multifactorial.
  • Addressing information clarity and study relevance can improve recruitment.
  • PPI offers a valuable mechanism for understanding and mitigating participation barriers in clinical trials.
  • This study provides insights for optimizing recruitment strategies in chronic illness research.
Keywords:
cognitive occupation-based programme for people living with multiple sclerosis (COB-MS)declinerpatient & public involvementrecruitmentstudy-within-a-trial

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