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Table 4 Barriers and facilitators associated with participating in the practice guideline development process

From: Understanding optimal approaches to patient and caregiver engagement in the development of cancer practice guidelines: a mixed methods study

Topic Meana SD
Barriers (n = 21)
 The duration of the practice guideline development process; this can take up to two years 3.45 1.28
 Lack of available time to attend practice guideline meetings 3.57 1.25
 Financial costs associated with participating (e.g. time away from work, paying for parking) 3.38 1.32
 Difficulty finding transportation, to be able to attend practice guideline meetings (e.g. no vehicle, no driver’s license) 2.52 1.47
 No/limited access to internet and/or a telephone 2.00 1.10
 Current health status (e.g. mobility issues) 2.00 1.10
 Lack of knowledge about practice guidelines 2.81 1.21
 Lack of technical knowledge (e.g. knowledge about research) 2.50 1.36
 Lack of comfort in sharing personal thoughts and experiences within a group setting 2.20 1.20
 Lack of confidence in being able to contribute to the practice guideline development process 1.80 0.83
Facilitators (n = 21)
 Having a personal interest in the practice guideline topic 3.57 1.12
 Having a personal desire to “give back” 4.19 0.75
 Knowing that there will be a positive impact on the clinical process, related to the topic of interest 4.19 0.75
 Knowing that there will be a positive impact on your clinical outcomes (i.e. quality of life; survivorship) 4.00 0.89
 Knowing that there will be a positive impact on the clinical outcomes of others 4.38 0.74
 Being given clear expectations for involvement in the practice guideline development process 3.71 0.85
 Receiving initial training to support your involvement in the practice guideline development process 3.81 0.81
 Receiving ongoing training to support your involvement in the practice guideline development process 3.85 0.81
 Receiving support/assistance with scientific concepts and terminology 3.81 1.03
 Receiving support/encouragement from the nurses, doctors and researchers that make up the practice guideline development team 4.05 0.74
 Receiving support/encouragement from the healthcare professionals that provide your care 4.00 0.89
 Receiving reimbursement for costs associated with participating (e.g. parking costs) 3.70 1.01
  1. SD standard deviation
  2. a5-point scale (1 = strongly disagree, 5 = strongly agree)