Table 2 Impacts of PE on PE capacity and those involved

PE Capacity

New PE approaches or processes developed and widely replicated

And then it was decided that the PE activity process was a success that we’d start to look at doing it for other units (027 PE manager < 100)

X

X

X

Patient/Family Advisors

Satisfaction with contributions that help others

You could see the sense of pride for them as true patient partners because they knew the impact that it was going to have on the families into the NICU (022 clinician 100+)

This one [PE activity] was quite meaningful and satisfying for all the patient members who took part… I think we’re all very pleased when we saw the final version; extremely pleased with the work we had done and all contribution. So overall we felt it was a very satisfactory experience (035 patient/family < 100)

X

X

X

Feeling valued as perspectives truly heard and used

I have always felt that my contribution is valued and listened too. And taken into account when it comes to decision-making (030 patient/family 100+)

X

X

X

Learning about the complexity of healthcare

The impact on patients is that they understood more what the system is like now and they understood more of what they want out of the system. I think that was a big impact on them (040 clinician 100+)

PFA’s really get a good sense of the complexity of trying to offer any service. So they always tend to comment on how much more they appreciate the complexity of the healthcare system having been involved and engaged in, in trying to solve some of these gaps (038 corporate executive teaching)

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X

X

Feeling empowered leading to greater engagement

I think the other impact on some of the patients and families that we dealt with was empowerment. They felt empowered to be able to speak up and provide their feedback… they really became more and more engaged as time went on (040 clinicians 100+)

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X

X

Unintended: Overburdened by frequent deployment

Tiring them [patient/family advisors] out, asking too much, having to do too much when they may still be caring for a loved one that’s sick (001 PE manager < 100)

One of the things that we hear about is that sometimes we might over reach individuals. So patients mention that they might be feeling over contacted, right? So I think that is a bit of a risk; they may feel burdened (031 clinician 100+)

X

X

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Unintended:

Conflicting expectations lead to turnover

A lot of people that have come on board do not really have positive experiences, and that’s why they want to get involved. To be able to put your own issues aside and look at the greater good, some people really struggle with that and we’ve had people leave just because of that (018 patient/family 100+)

X

X

X

Staff involved in PE

Reminder of importance of listening to patients

It reinforces what really matters when it comes to healthcare and the importance of listening to patients. The importance of the patient voice; and when I say the importance of teamwork, it’s not just teamwork with staff; it’s teamwork with patients, teamwork with their families (015 patient/family teaching)

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X

X

Reminder of why they chose a healthcare career

I think for staff it’s a reminder of why they went into healthcare and the importance of teamwork … I think it reinforces why they went into healthcare (015 patient/family teaching)

It guides clinicians and staff to really think about the reason why they came to working in healthcare (028 PE manager teaching)

X

X

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Greater appreciation of PE for planning and improvement

The finished product looked quite a lot different as a consequence of patient input and feedback. So I think those involved saw that as really quite useful and a little bit eye-opening. You know I think to a degree it opened people’s eyes that patients can have some pretty useful things to say that can actually change what we do (012 clinician teaching)

I think its increased awareness around patient engagement in staff. We believe strongly enough in this process that we take the feedback that they give us which is very valuable and staff can see that. So I think it increased awareness of how important it really is (027 PE manager < 100)

X

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X

Increased openness or willingness to engage patients

Now, everybody’s mad if the patient isn’t at the committee. They’re, like, where’s the patient? Can we have the meeting without them? (001 PE manager < 100)

X

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Unintended: Frustrated if PE slows pace

Patients always slow down the process of moving towards a goal and making decisions because there’s a multitude of questions and you’re dealing with a number of people who are inexperienced … it’s the cost of doing business with patients and I’m sure that some of our professionals are frustrated by that (039 patient/family teaching)

X

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