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Table 2 Identified psychosocial facilitators and barriers to research participation, mapped to the Theoretical Domains Framework (TDF) and tested recruitment interventions

From: Why do patients take part in research? An overview of systematic reviews of psychosocial barriers and facilitators

Identified theme

Systematic reviews reporting the theme

Domain (components) of the TDF (from Cane et al., 2012) [14]

Interventions which probably affect recruitment to research (from Treweek et al., 2018) [8]

Interventions shown not to affect recruitment to research, or with uncertain effects (from Treweek et al., 2018) [8]

Facilitators

 Personal benefit (including therapeutic benefits; closer monitoring; access to new treatments; gaining knowledge of own health)

Reported in 20 SRs:

Dhalla, 2014; Fayter, 2007; Fisher, 2011; Forcina, 2018; Grand, 2012; Gregersen, 2019; Hughes-Morley, 2015; Liljas, 2017; Limkakeng, 2013a; Limkakeng, 2013b; McCann, 2007; McCann, 2013; Martinsen, 2016; Nalubega, 2015; Nielsen, 2019; Nievaard, 2004; Nobile, 2013; Quay, 2017; Tromp, 2016; van der Zande, 2018

Optimism (Reflective Motivation)

Mentioning scarcity of trial places

Positive framing of potential treatment benefits

Patient preference trial design

 Altruism (including benefits to science; helping others)

Reported in 18 SRs:

Dhalla, 2014; Fayter 2007; Fisher 2011; Forcina, 2018; Gregersen, 2019; Hughes-Morley 2015; Limkakeng, 2013a; Limkakeng, 2013b; Martinsen, 2016; McCann, 2007; McCann, 2013; Nalubega, 2015; Nobile, 2013; Nielsen, 2019; Nievaard, 2004; Quay, 2017; Tromp, 2016; van der Zande, 2018

Beliefs about consequences (Reflective Motivation)

  

 Confidence or trust in the physician or the research

Reported in 13 SRs:

Crane, 2017; Grand, 2012; Gregersen, 2019; Hughes-Morley, 2015; Liljas, 2017; Limkakeng, 2013a; Limkakeng, 2013b; Martinsen, 2016; McCann, 2007; McCann, 2013; Nielsen, 2019; Nievaard, 2004; Nobile, 2013

Reinforcement (Automatic Motivation)

Endorsements of previous participants

 

 Low burden or convenient research

Reported in 4 SRs:

Limkakeng, 2013a; Nobile, 2013; Tromp, 2016; van der Zande, 2018

Belief about consequences (Reflective Motivation)

Social or Professional Role & Identity (Reflective or Automatic Motivation)

Opt-out consent method

Two-stage randomisation method (may increase perceived inconvenience to the participant)

 Financial benefit or incentives

Reported in 3 SRs:

Limkakeng, 2013a; Nalubega, 2015; Tromp, 2016

Goals (Reflective Motivation)

Financial incentives

 

Barriers

 Fear and perceived risk (to health, of experimental treatment or adverse effects; to personal consequences)

Reported in 14 SRs:

Dhalla 2013; Forcina, 2018; Fisher 2011; Grand, 2012; Hughes-Morley, 2015; Martinsen, 2016; McCann, 2013; Nalubega, 2015; Nielsen, 2019; Nievaard, 2004; Quay, 2017; Tromp, 2016; van der Zande, 2018; Woodall, 2010

Belief about consequences (Reflective Motivation)

Emphasising pain in information (−)

Emphasising risk in information

 Practical difficulties (including additional procedures or appointments; transport; costs; work or caring responsibilities)

Reported in 13 SRs:

Fayter, 2007; Forcina, 2018; Glover, 2015; Grand, 2012; Hughes-Morley, 2015; Liljas, 2017; Martinsen, 2016; McCann, 2007; Prescott, 1999; Quay, 2017; Tromp, 2016; van Der Zande, 2018; Woodall, 2010

 

Financial incentives

Internet-based data collection

(−)

Two-stage randomisation method (may increase practical demand)

Email (not postal) invitations

 Distrust of research or researchers (particularly amongst ethnic minorities)

Reported in 10 SRs:

Glover, 2015; Hughes-Morley, 2015; Limkakeng, 2013a; Limkakeng, 2013b; McCann, 2007; Nalubega, 2015; Quay, 2017; Tromp, 2016; van der Zande, 2018; Woodall, 2010

   

 Aversion to randomisation

Reported in 7 SRs:

Forcina, 2018; Hughes-Morley, 2015; McCann, 2007; McCann, 2013; Nievaard, 2004; Tromp, 2016; van der Zande, 2018

Environmental context and resources (Physical Opportunity)

Open trial design

Cluster trial design

 Treatment preferences (for specific therapy; against placebo)

Reported in 5 SRs:

Fayter, 2007; Grand, 2012; McCann, 2007; Prescott, 1999; Tromp, 2016

Reinforcement (Automatic Motivation)

Open trial design

Patient preference trial design

 Stigma associated with health condition

Reported in 5 SRs:

Dhalla, 2013; Hughes-Morley, 2015; Nalubega, 2015; Woodall, 2010; Quay, 2017

Social influences (Social Opportunity)

  

 Uncertainty (particularly in relation to trials; its links to randomisation)

Reported in 4 SRs:

Fayter, 2007; Fisher 2011; Nievaard, 2004; Prescott, 1999

Belief about consequences (Reflective Motivation)

 

Patient preference trial design

 Personal health

Reported in 4 SRs:

Hughes-Morley, 2015; Liljas, 2017; Limkakeng, 2013b; Woodall, 2010

Emotion (Automatic Motivation)

  

 Desire for choice

Reported in 3 SRs:

Grand 2012; Fisher 2011; Tromp 2016

Goals (Reflective Motivation)

 

Patient preference trial design

Factors reported as facilitators and barriers

 

Belief about consequences (Reflective Motivation)

  

 Influence of physician, family or friends

Reported in 11 SRs:

Fayter 2007; Forcina, 2018; Hughes-Morley, 2015; Gad 2018; Gregersen, 2019; Liljas, 2017; Limkakeng, 2013a; Nielsen, 2019; Prescott 1999; Tromp, 2016; van der Zande, 2018

Belief about consequences (Reflective Motivation)

Endorsements of previous participants

 

 Information quality and participant’s knowledge of the research

Reported in 5 SRs:

Crane, 2017; Fayter 2007; Forcina, 2018; Glover, 2015; Gregerson, 2019

Social influences (Social Opportunity)

Enclosing questionnaire on study method

Researcher reading out information (?)

Easy-to-read consent form

Optimising information through user testing or user feedback

Brief patient information leaflet

Providing information by phone

Providing information by video (?)

Providing audio record of recruitment discussion (?)

Providing booklet on trial methods (?)

Total or discretionary information disclosure (?)

Educational package on study

  1. Key: (−) negative effect on recruitment, (?) uncertain effect on recruitment