Table 7 PPEET results: Barriers to patient engagement (PE)
From: Lessons learned in measuring patient engagement in a Canada-wide childhood disability network
Theme n = number of utterances | Subtheme n = number of utterances % of Theme | Sub-subtheme n = number of utterances % of Sub-subtheme | Description | PAG utterances n (%) | RES utterances n (%) | COMM utterances n (%) | Total utterances n (%) |
|---|---|---|---|---|---|---|---|
Barriers to PE N = 54 | Ambiguity in goals N = 1 (1.9) | Refers to ambiguous goals and how to potentially overcome | 0 | 0 | 1 | 1 | |
Total | 0 (0.0) | 0 (0.0) | 1 (100.0) | 1 (100.0) | |||
Availabilities of PP N = 2 (3.7) | Refers to being more transparent from the beginning for planning the expected time and type of engagement | 0 | 2 | 0 | 2 | ||
Total | 0 (0.0) | 2 (100.0) | 0 (0.0) | 2 (100.0) | |||
Compensation issues N = 1 (1.9) | Refers to an administrative issue that came up when reimbursing a PAG | 0 | 1 | 0 | 1 | ||
Total | 0 (0.0) | 1 (100.0) | 0 (0.0) | 1 (100.0) | |||
Complexity of protocols and research steps N = 2 (3.7) | Refers to lack of transparency surrounding the type of knowledge needed to be a PAG (expectations) | 0 | 1 | 1 | 2 | ||
Total | 0 (0.0) | 1 (50.0) | 1 (50.0) | 2 (100.0) | |||
Concurrent commitments impending engagement N = 2 (3.7) | Refers to not being able to reach all voices perhaps due to too many commitments | 0 | 2 | 0 | 2 | ||
Total | 0 (0.0) | 2 (100.0) | 0 (0.0) | 2 (100.0) | |||
Deciding what perspectives from PP are to be incorporated and how N = 4 (7.4) | Refers to the challenges of knowing what to incorporate and touches upon methods taken to alleviate (ex: discussions, outlines and documenting everything) | 0 | 3 | 1 | 4 | ||
Total | 0 (0.0) | 3 (75.0) | 1 (25.0) | 4 (100.0) | |||
Difficulty understanding the science involved and the research process N = 1 (1.9) | Refers to challenges with understanding concretely goals and timelines, behind the science discussions | 1 | 0 | 0 | 1 | ||
Total | 1 (100.0) | 0 (0.0) | 0 (0.0) | 1 (100.0) | |||
Engagement as challenge N = 2 (3.7) | Refers to challenges engaging everyone at the same time | 0 | 0 | 2 | 2 | ||
Total | 0 (0.0) | 0 (0.0) | 2 (100.0) | 2 (100.0) | |||
Group homogeneity N = 8 (14.8) | Refers to similar voices being heard, all participants mostly being parents, lack of minority voices | 0 | 5 | 3 | 8 | ||
Total | 0 (0.0) | 5 (62.5) | 3 (37.5) | 8 (100.0) | |||
Keep up with engagement over long periods of time N = 2 (3.7) | Refers to engagement dropping off as the study progresses and scheduling difficulties | 0 | 2 | 0 | 2 | ||
Total | 0 (0.0) | 2 (100.0) | 0 (0.0) | 2 (100.0) | |||
Lack of clarity re roles N = 5 (9.3) | Refers to PAG’s not knowing what their research is being useful for, or just not understanding their role/context | 1 | 0 | 4 | 5 | ||
Total | 1 (20.0) | 0 (0.0) | 4 (80.0) | 5 (100.0) | |||
Lack of F2F meetings N = 1 (1.9) | Refers to not meeting in person | 1 | 0 | 0 | 1 | ||
Total | 1 (100.0) | 0 (0.0) | 0 (0.0) | 1 (100.0) | |||
Lack of meetings or PP presence in meetings N = 3 (5.6) | Refers to not seeing PP during some meetings, but also brings up lack of meetings in general, so no opportunity to see PP | 0 | 0 | 3 | 3 | ||
Total | 0 (0.0) | 0 (0.0) | 3 (100.0) | 3 (100.0) | |||
Lack of PI engagement N = 1 (1.9) | Refers to not seeing engagement from the core research group during meetings | 1 | 0 | 0 | 1 | ||
Total | 1 (100.0) | 0 (0.0) | 0 (0.0) | 1 (100.0) | |||
Linguistic, social and cultural differences N = 1 (1.9) | Refers to the reasons why some PPs may not participate in the meetings to their full extent | 0 | 1 | 0 | 1 | ||
Total | 0 (0.0) | 1 (100.0) | 0 (0.0) | 1 (100.0) | |||
Managing PP expectations vs. feasibility in incorporating feedback N = 2 (3.7) | Refers to the challenges of incorporating feedback and also setting limits re how much can efficiently be incorporated | 0 | 2 | 0 | 2 | ||
Total | 0 (0.0) | 2 (100.0) | 0 (0.0) | 2 (100.0) | |||
Newsletters hard to navigate N = 1 (1.9) | Refers to challenges with newsletters | 1 | 0 | 0 | 1 | ||
Total | 1 (100.0) | 0 (0.0) | 0 (0.0) | 1 (100.0) | |||
Pandemic related issues N = 1 (1.9) | Refers to being more sensitive with regard to reaching out the PPs during pandemic vs how you would reach out in the past | 0 | 1 | 0 | 1 | ||
Total | 0 (0.0) | 1 (100.0) | 0 (0.0) | 1 (100.0) | |||
PE is time consuming N = 1 (1.9) | Refers to the length of time it takes to increase PP engagement | 0 | 1 | 0 | 1 | ||
Total | 0 (0.0) | 1 (100.0) | 0 (0.0) | 1 (100.0) | |||
PIs too focused on individual research projects N = 1 (1.9) | Refers to lack of engagement from PI/research team and how it can negatively affect PE/effective PE | 0 | 0 | 1 | 1 | ||
Total | 0 (0.0) | 0 (0.0) | 1 (100.0) | 1 (100.0) | |||
Planning ahead for resources needed to do engagement N = 1 (1.9) | Refers to the expectation that PE can be done immediately, but really needs investing time and energy to do well | 0 | 1 | 0 | 1 | ||
Total | 0 (0.0) | 1 (100.0) | 0 (0.0) | 1 (100.0) | |||
Possibly overwhelming PP with tasks N = 1 (1.9) | Refers to how PAGs participation is currently solicited and how to change that for the future | 0 | 1 | 0 | 1 | ||
Total | 0 (0.0) | 1 (100.0) | 0 (0.0) | 1 (100.0) | |||
Project related technical difficulties N = 1 (1.9) | Refers to gaps in communication with PAGs when things go wrong or get delayed with research | 0 | 1 | 0 | 1 | ||
Total | 0 (0.0) | 1 (100.0) | 0 (0.0) | 1 (100.0) | |||
Scheduling and organizing meetings that suit everyone’s availabilities N = 4 (7.4) | Refers to the overall difficulties that have arisen with scheduling and solutions like rotation lunch times or offering multiple locations/times | 0 | 4 | 0 | 4 | ||
Total | 0 (0.0) | 4 (100.0) | 0 (0.0) | 4 (100.0) | |||
Struggle to establish formal relationships with PP N = 1 (1.9) | Refers to relationships with PP and RES mostly informal, less engagement when reaching out formally | 0 | 1 | 0 | 1 | ||
Total | 0 (0.0) | 1 (100.0) | 0 (0.0) | 1 (100.0) | |||
Time zones and different locations N = 2 (3.7) | Refers to logistical challenges when meetings include PAGs from across Canada | 1 | 1 | 0 | 2 | ||
Total | 1 (50.0) | 1 (50.0) | 0 (0.0) | 2 (100.0) | |||
Transition in project phases and its impacts on engagement N = 2 (3.7) | Refers to potential measures to take as a way of better planning for changes in engagement levels throughout the project | 0 | 2 | 0 | 2 | ||
0 (0.0) | 2 (100.0) | 0 (0.0) | 2 (100.0) | ||||
Grand total | 6 (11.1) | 32 (59.3) | 16 (29.6) | 54 (100.0) |