Good morning everyone, so Lisa and I are going to talk you through this session.
So, Lisa I will start by talking about a background to patient experiences work
and introduce you to some of the work that has been done in the UK, and in the second
part of this presentation I will talk more specifically about our work in Kenya with
regards to understanding the experiences of mothers of hospitalized sick newborns.
So, I hand over to Lisa. Thank you, Dorothy, good morning everybody.
Dorothy if you could click onto the next slide please.
Great, thank you, so the idea of this session is for Dorothy and I to give you an overview of some
of the approaches to patient experiences research that we have done and that we're engaged with,
testing through a project called RESPECT which Dorothy is going to give you a little bit more
detail about a bit later on in the presentation. So we've just had a really interesting insight
into one way of capturing patient experiences, and thinking about the ways that they can feed into
improving the quality of healthcare delivery and healthcare systems,
and I want to give you some insights into another approach.
So patient experiences can reflect the range of introductions that patients have with the care
system all the way along their care pathway as we've just heard, and as Sassy mentioned in her
opening talk, they are now considered to be an integral component of healthcare quality.
There are many different aspects of healthcare delivery that patients value highly when they seek
care and when they receive care, and some obvious examples that I'm sure we'll all be familiar
with just through our own lives, are getting timely appointments, getting easy access to
information about their health condition and their projected care pathway and their treatment plan,
and perhaps most importantly in this list, good communication with healthcare providers.
So that's a flavour of what's important about the patient experience.
And it's increasingly understood that a rich understanding of patient experiences
is a key component of moving towards patient-centred care which, as you know, is
one of the things that we are particularly and increasingly focused on in high quality care,
and there is a growing evidence base that suggests that patient-centred organizations - so
organizations that have genuinely built their care provision on patient-centred care
and understanding the perspectives of patients - can have multiple effects including improving
staff experience, staff morale and retention that I know is a real issue in Kenya and it's also a
very pressing issue here in the UK as well. And patient-centred organizations can also
report shorter lengths of stay which obviously has all sorts of consequences for both the economics
of the healthcare provider itself, but also the experiences of patients and their families.
So, people's experiences can help us appreciate what's working well, what needs to change and
how to go about making those improvements. In the book that Sassy mentioned in her first
slide, edited by Sue Ziebland and others, there are a range of different approaches to capturing
patient experiences that are detailed and some of them are our focus groups,
we've heard about the process mapping, and the approach that Dorothy and I have been using
is doing in-depth interviews with our patients about their experiences of health and illness,
or in particular, in Dorothy's case, interviewing mothers with experiences of having preterm birth.
And using patient experience data that is rigorously analysed and written,
you know high quality data that's carefully collected and rigorously analysed, can help
inform practice and health system change and improvement in low- and middle-income countries.
There has been a developing evidence base for these impacts in high-income countries and
Dorothy and I and others are very keen to develop the evidence base for demonstrating
the impact that these can also have in low- and middle-income countries.
And one of the key things that we think is important is that evidence generated
to improve care can also be used in other healthcare improvement settings,
so it's not just data that can be used to improve care in one hospital in Nairobi,
but can actually be used to improve care at scale. So Dorothy's going to talk more about the work
that we have been doing in Kenya that builds on her doctoral research, but one study that
I just wanted to mention before I hand back over to Dorothy is work that's been done in
high-income countries to gain insights into the experiences of parents who have neonates admitted
to the neonatal intensive care unit, and through a rich understanding of those parent experiences
we've been able to develop a more personalized care for sick newborns
that are genuinely meeting the needs of families. So, this study mentioned here, which is the Poppy
Study - Parents of Premature Babies in the UK - the results from this study that was led by Sophie
Staniszewska contributed to an understanding of parent needs and what they value, which in
particular was clear information, receiving emotional support, and practical guidance
and encouragement in caring for their baby. So I'm going to hand over now to Dorothy who's
going to give you a bit more detail about the work that she and I have been undertaking in Kenya.
Thank you. In this second part of the presentation
I will focus more on what's been happening in Kenya with regards to patient experiences.
Our work primarily focuses on newborn care within hospitals in the Kenyan setting,
so the first set of qualitative work that we conducted - and this was part of my DPhil study -
was in looking at the experiences and perceptions of mothers with hospitalised sick newborns across
two hospitals in Nairobi with a focus on one public hospital and a faith-based hospital.
Apart from that we also wanted to understand what roles do mothers play within the newborn unit
and in doing this we were able to apply three main approaches, the first one being a non-participant
observation - we were able to conduct over 600 hours of observations within the newborn unit
and this covered both day and night shifts and weekdays and also weekend shifts,
and this approach was very useful in terms of enabling us to get detailed understanding of the
context within which care is provided across the two sectors, with an understanding that
these two sectors have got different funding approaches, different structures,
different staffing and different processes. We were also able to observe the roles that
the mothers play within their newborn units in terms of understanding what do they actually do,
at what point do they actually take on the roles such as feeding, bathing the babies,
and also understand how are they actually prepared to take on these roles.
Of importance was also to be able to understand the interactions, not just
amongst the mothers but also between the mothers and the staff across the two hospital settings.
The second approach that we used was in-depth interviews at the point of discharge.
We were able to interview a total of 40 mothers across the two hospitals, that
is 20 in each hospital, and this was important in terms of enabling us to follow up on issues
that we were observing within the new-born unit during the non-participant observation phase,
and by interviewing the mothers they were able to talk about what roles they played
and the perceptions about their involvement in care
and some of the fears and concerns that they had while inside the new-born unit.
The last method that we used was the storytelling or narrative interview where we were able to
visit a subset of mothers two to three weeks post-discharge in their homes, and what we saw
was, in terms of methodological approaches, in terms of the value, that having storytelling
exercises with the mothers in an environment where they're more relaxed post-discharge,
outside the hospital setting played, in terms of their ability to openly talk about not just the
positives but also the negatives in terms of how they were treated within the hospital setting.
So this is a lesson that we continue to carry
forward as we continue engaging with patient experiences research in Kenya.
A key output of the qualitative work was us piloting the video recording
of narrative interviews with mothers which is an approach that Lisa and colleagues at
the Health Experiences Research Group at Oxford have used over the years, but this is something
that we wanted to test, whether it could be acceptable and would be something that would
work within our Kenyan setting, So we're able to interview a couple
of mothers and produce a pilot trigger film here in Kenya and it's accessible on this link.
So, the current work which is building on from the
initial qualitative work and my DPhil work, is what we call the RESPECT Study,
and what we want to do is collect additional narrative interviews with mothers of preterm
babies and explore how we can actually use these experiences to improve care.
So, we are aiming to, we've been interviewing mothers across
public hospitals, and also some who we have recruited through support groups within Nairobi,
basically to identify what are their needs and how can mothers be supported within newborn units
and one of the key issues that is emerging from the narrative interviews that we've
conducted so far is the need for adequate and timely information for the mothers.
So, how are we going to incorporate mothers’ voices, or the experiences of the mothers,
into quality improvement strategies? What we propose to do in the RESPECT Study
is to adopt the experience-based co-design approach where we will incorporate the narratives
of the mothers into quality improvement strategies and experience-based co-design
is an approach that enables staff and patients to co-design, basically come together, work together
in a participatory manner to come up with interventions that can improve care quality.
So the first step is setting up the study which involves a lot of engagement with the hospitals
and the mothers and the staff, engaging with the staff, and it's powerful that we are working
closely with the colleagues one of who, Sassy, who is working with the nurses and also able
to learn about the nurses’ experiences. What Lisa and I are focusing on is the
patient experiences, so talking to mothers and video recording their narratives and then
having a series of co-design workshops where we bring together mothers and nurses
in different workshop settings where we'll be able to share some of the key touch points emerging
from the narrative interviews that we've been conducting in phase one of the RESPECT Study and
produce short video clips which we'll share with the mothers and the nurses to get their feedback
about the key emerging themes or key emerging issues of interest that we are identifying from
the stories of the mothers, and from that together design audio-visual training materials and also
information and educational materials that can support mothers
who have sick newborns or premature babies within our hospital settings in Nairobi.
The next step would be to be able to test some of the audio-visual training materials and the
information support materials that will be co-designed by the mothers and the nurses
in two hospitals in Nairobi and then we'll be able to also evaluate that using
both qualitative and quantitative approaches. So before the rollout of or the testing of the
material that we'll have developed, we are going to be able to have a baseline data collection,
where we interview the mothers, administer questionnaires to the nursing staff and then
go in and implement or pilot the intervention that will be co-designed by the mothers and the nurses,
and after that have a final phase where we do a post-implementation assessment of the
intervention that will be developed. So that is a plan that we hope
to undertake with experienced physical design sometime in the early, the first quarter of 2022.