ArticlePDF Available

Adding to the knowledge on Patient and Public Involvement: Reflections from an experience of co-research with carers of people with dementia

Authors:

Abstract

Background. Patient and Public Involvement (PPI) in research ensures that publicly funded research reflects the priorities of the people who will be affected by its results. Co-research, a branch of PPI, is equal partnership between academic researchers and members of the public, who steer and conduct research together. Objectives. To propose a model for good practice in co-researching with carers of people with dementia, by reporting and synthesising the personal reflections of the academic and lay researchers around the methodological issues, benefits and challenges of co-research. Design. An academic researcher and two lay-researchers with lived experience of caring with someone with dementia collaborated in all stages of a qualitative research study, including development of the research protocol and topic guide, data collection, analysis and synthesis, and dissemination of findings. Throughout the study, the academic and lay researchers annotated reflections of their experience in personal diaries. Data from the diaries were synthesised and mapped out in a model for good practice in co-research. Results. Co-research yielded benefits for all those involved and on research outputs. There were practicalities and challenges that required extra resources, in order to make the involvement of lay researchers meaningful and effective. Discussion. The model for good practice illustrates overarching and stage-specific guidelines, which can inform researchers and members of the public wishing to undertake good practice in co-research.
Health Expectations. 2020;00:1–16.
|
  1wileyonlinelibrary.com/journal/hex
Received: 11 October 2019 
|
  Revised: 6 February 2020 
|
  Accepted: 28 Februar y 2020
DOI : 10.1111/h ex.130 49
ORIGINAL RESEARCH PAPER
Adding to the knowledge on Patient and Public Involvement:
Reflections from an experience of co-research with carers of
people with dementia
Claudio Di Lorito PhD, Research fellow1| Maureen Godfrey BA Hons, Patient and Public
Involvement representative1| Marianne Dunlop Dip, Patient and Public Involvement
representative1| Alessandro Bosco PhD, Research fellow2| Kristian Pollock PhD, Professor3|
Veronika van der Wardt PhD, Senior Research fellow4| Rowan H. Harwood MD, Professor3
1Division of Rehabilitation, Ageing and Wellbeing, School of Medicine, University of Nottingham, Queen's Medical Centre, Nottingham, UK
2Division of Psychiatry and Applied psychology, School of Medicine, University of Nottingham, Nottingham, UK
3School of Health Sciences, Queen's Medical Centre, University of Nottingham, Nottingham, UK
4WissenschaftlicheMitarbeiterin, ZentrumfürMethodenwissenschaften und GesundheitsforschungAbteilungfürAllgemeinmedizin, Präventive und
Rehabilitative Medizin, Philipps-Universität Marburg, Marburg, Deutschland
This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium,
provided the original work is properly cited.
© 2020 The Authors Health Expectations published by John Wiley & Sons Ltd
Correspondence
Claudio Di Lorito, Room B109, School
of Medicine, Queen’s Medical centre,
Nottingham NG7 2UH, UK.
Email: claudio.dilorito1@nottingham.ac.uk
Funding information
This work presents independent research
funded by the UK National Institute
for Health Research (NIHR) under its
Programme Grants for Applied Research
funding scheme (RP-PG-0614-20007). The
views expressed are those of the authors
and not necessarily those of the NHS, the
NIHR or the Depar tment of Health and
Social Care.
Abstract
Background: Patient and Public Involvement (PPI) in research ensures that publicly
funded research reflects the priorities of the people who will be affected by its re-
sults. Co-research, a branch of PPI, is equal partnership between academic research-
ers and members of the public, who steer and conduct research together.
Objectives: To propose a model for good practice in co-researching with carers of
people with dementia, by reporting and synthesizing the personal reflections of the
academic and lay researchers around the methodological issues, benefits, and chal-
lenges of co-research.
Design: An academic researcher and two lay researchers with lived experience of caring
with someone with dementia collaborated in all stages of a qualitative research study,
including development of the research protocol and topic guide, data collection, analysis
and synthesis, and dissemination of findings. Throughout the study, the academic and lay
researchers annotated reflections of their experience in personal diaries. Data from the
diaries were synthesized and mapped out in a model for good practice in co-research.
Results: Co-research yielded benefits for all those involved and on research outputs.
There were practicalities and challenges that required extra resources, in order to
make the involvement of lay researchers meaningful and effective.
Discussion: The model for good practice illustrates overarching and stage-specific
guidelines, which can inform researchers and members of the public wishing to un-
dertake good practice in co-research.
2 
|
   DI LORITO eT aL.
1 | INTRODUCTION
Patient and Public Involvement (PPI) is involvement in research of
members of the public who have lived experience of the phenome-
non under investigation. In PPI, research is carried out ‘with’ or ‘by’
members of the public, as opposed to ‘to’, ‘about’, and ‘forthem.1
PPI is grounded in the principle of ‘knowledge by experience’, as op-
posed to ‘knowledge by expertise’, which deconstructs the notion
of hierarchical knowledge, passed by academic experts to lay mem-
bers.2,3 Knowledge, through a PPI perspecti ve , is co-built by ‘exper ts
by training’ and ‘experts by experience’.4 PPI has gained momentum
in several countries and many funders, such as the United Kingdom
National Institute of Health Research (NIHR) require that PPI plans
are included in social and health care research grants.
There are different forms of PPI.5 These range from consultation,
where members of the public provide research input (eg evaluating re-
search proposals) through inclusion in advisory committees, to leading
the whole research cycle by members of the public.6 Collaboration, or
co-research, lies in the middle of the ‘spectrum’, and indicates equal
partnership between academic researchers and members of the pub-
lic, who steer and conduct research together.6 Ideally, co-research
occurs in all stages of the research cycle, including the development
of study design and questions, research materials, data collection and
analysis, and report and dissemination of findings.7
In dementia research, lay researchers can be people living with
the condition who have the ability to undertake a research role, as
well as carer (henceforth defined ‘carers’).6 Co-research enables
people with lived experience of dementia to have a voice in iden-
tifying research priorities and direct the research process.8 This re-
sponds to the call for research to be qualified, ethical, and relevant
to the primary stakeholders.9 Co-res earch is also concerne d with eq-
uitability (ie redistributing power in the research process) and chal-
lenges the power in the hands of the experts-by-training, typical of
academic-led research.10
Compared to other vulnerable populations, such as people
with Intellectual Disability,11 co-research in dementia is still limited
practice. However, recent publications have evidenced benefits for
academic researchers, research participants, lay researchers with
dementia, and the public.8,12
There is a growing emphasis on co-research in dementia, as
demonstrated by the recent release of a special issue on the topic
in the journal ‘Dementia’. However, there is currently only a handful
of empirical studies based on co-research with carers of people with
dementia13-15 and only a couple have reported on methodological is-
sues.16,17 Given the challenges of involving people with deteriorating
cognition in research and that the method of co-research is still in its
evolutionary stage, it is timely to experiment with different types of
collaborators with lived experience of dementia. It is also crucial to
recognize the central role that carers have in the production and de-
livery of care18 and the burden that a caring role may generate,19 to
the point that carers have been defined ‘the invisible patients’.20 This
renders carers experts-by-experience and requires that their voices
are represented in research that affects their lives.
The present study was co-produced with PPI members with lived
experience of dementia. It is ethically grounded in the Alzheimer
Europe Strategic Plan 2016-2020,21 and the Prime Minister's second
Challenge on Dementia,22 aiming to ensure partnership in research,
policy development, and service design between researchers, people
with dementia and their carers, funders, and society. It aims to pro-
pose a mode l for goo d pra ctice in co-researching with care rs of people
with dementia, by reporting and synthesizing the personal reflections
of the academic and lay researchers around the methodological is-
sues, benefits, and challenges of an experiment of co-research within
the context of a large randomized controlled trial (RCT).
2 | METHODS
This study adheres to the consolidated criteria for reporting quali-
tative research (COREQ) checklist (Appendix 1).23 It is based on
an experiment of co-research with carers of people with dementia
embedded in the Promoting Activity, Independence and Stability in
Early Dementia (PrAISED) RCT. The PrAISED was designed to pro-
mote activity and independence among people with mild dementia
or mild cognitive impairment (Figure 1).24 Embedded in the PPI of
PrAISED, co-research occurred in the context of the process evalu-
ation,25 a sub-study aiming to investigate the experience of the par-
ticipants with dementia and their carers (Figure 1).
2.1 | Setting
This section describes how co-research was set up and carried out
throughout the stages of the research cycle identified by Mockford
et al.17
2.1.1 | Thinking and planning
The experiment of co-research was not initially considered/ costed in
the PrAISED proposal/protocol. When the main author (CDL) joined
PrAISED in 2018 to lead on the process evaluation package, having
previous exper ience of co-re searching, he proposed to embed an ex-
periment of co-research in the process evaluation package. CDL was
able to utilize the financial and staff resources of the PrAISED RCT
to set up and carry out co-research.
KEYWORDS
carers, co-research, dementia, patient and public involvement (PPI), qualitative research
  
|
 3
DI LORITO eT a L.
The co-research team was made up of an academic researcher
and two lay researchers. The academic researcher was a Research
Fellow from the PrAISED team with expertise in qualitative research
(CDL, referred to as ‘academic researcher’). The lay researchers were
two PPI collaborators ((MG and MD, referred to as ‘lay researchers’)
with lived experience of caring for someone with dementia. The
lay researchers had previously collaborated in the PrAISED RCT
study design (eg designing the therapy programme and developing
research documents) and study management. Both PPI representa-
tives sat on the Trial Management Committee and one (MG) was also
a study co-applicant.
Given their previous PPI roles at the University of Nottingham,
their knowledge and expertise in PrAISED, their different back-
ground and skillset, their experience in dementia care and research,
and their personal aspirations, the lay researchers were identified as
the most suitable collaborators for co-research. No formal recruit-
ment was undertaken. The academic researcher approached the lay
researchers with a proposal and the lay researchers accepted the
invitation to collaborate. While the academic researcher had publi-
cations around co-research11,12 and the lay researcher s had taken on
previous PPI roles, none had previous experience of co-researching.
The co-researchers’ role was not pre-imposed by the academic
team, but it was co-designed by the lay and academic researchers
through discussions around the tasks that the lay researchers felt
most comfortable undertaking. It was agreed that they would be
involved in all stages of the process evaluation research cycle, in-
cluding designing the study protocol, developing the topic guide,
collecting and analysing data, and disseminating research findings.
This would ensure a genuine partnership in areas of research (eg
data analysis) which have been traditionally ‘academia-dominated’.26
Being one of the co-applicants in the PrAISED RCT, lay researcher
MG was involved in budget planning allocated for PPI contribution,
which was based on INVOLVE guidelines.27 It was agree d tha t the lay
researchers would be compensated for their time spent working on
the process evaluation in any of the stages of the study.
In relation to ethics, while the approval received for the PrAISED
RCT covered the process evaluation sub-study too, we were unsure
whether involvement of PPI members as lay researchers required
further ethics approval. As prescribed in the Alzheimer Europe's
pamphlet on PPI,8 the academic team liaised with the Head of
Volunteering at the University of Nottingham for advice. Governance
advice from the sponsor was that the lay researchers would not need
further ethics approval, as they would see participants together with
the academic researcher. The experiment of co-research was there-
fore part of the ethics approval received by the PrAISED study (Ref.:
18/YH/0059. ISRCTN Registration Number: 15320670).
In relation to protocol design, the main author of the manuscript
(CDL) developed a draft, which was passed to all co-authors (includ-
ing the lay researchers) to comment and provide feedback on con-
tent and language. The lay researchers’ input was crucial in ensuring
that the study was empowering for the participants with dementia.
For example, although it was initially envisioned that the qualitative
interviews would be conducted with the carers and the participants
with dementia separately, the lay researchers suggested that asking
to the participant with dementia about their preference would be a
more ethical approach.
The development of the interview schedule also involved a col-
laborative effort. The topic guide consisted of open-ended ques-
tions, designed to stimulate reflection in the participants about the
factors that had contributed to their experience in the PrAISED
FIGURE 1 PrAISED activities. *Includes informant and participant-reported measures on sociodemographics, medical history,
medications, frailty, mobility, personality, cognition, quality of living, health, disability, falls efficacy, mood/ affect, activities of daily living,
muscle strength, physical activity, static and dynamic balance, carer strain, and carer's health. **Receives physical exercises, functional
activities (eg shopping), physical activity promotion; risk enablement; environmental assessment, community engagement and provision of
information. #Includes qualitative interviews with participants with dementia and their carers at month six ad 12 of the intervention
4 
|
   DI LORITO eT aL.
RCT (Appendix 2). The academic researcher developed a tentative
version of the topic guide, which was then discussed and edited in
a meeting with the lay researchers. This meeting ensured that the
interview questions were relevant, meaningful, and jargon-free for
participants with dementia. It was found that the terminology and
structure of some of the questions was difficult to understand. For
example, the concept of control was deemed to be too abstract. The
question ‘How much control do you feel you had in developing the
programme of physical activity?’ was therefore changed into ‘How
much were you able to decide what to do in PrAISED?’
2.1.2| Preparing
As per the NIHR guidance on co-producing a research project,28
some preparatory training sessions were undertaken to enable the
lay researchers to undertake their role in co-research.8
The needs of lay researchers were carefully evaluated and dis-
cussed. The lay researchers were asked to think about the role and
reflect on which aspects they might find challenging and which
specific skills they believed they should develop/boost. Having
been PPI members in various research projects in the University of
Nottingham, the lay researchers felt confident to fulfil most of the
duties that their role included. The lay researchers had previously
been trained in data analysis, through a two-day course delivered by
the University of Nottingham research staff. The training consisted
in an introductory session and workshop on qualitative data analysis.
The course participants were then asked to work independently on
the coding of a sampled interview excerpt before the second ses-
sion. The homework was discussed in a group format in the second
workshop. The lay researchers felt that, given the vulnerability of
the target population, training to carry out the qualitative interviews
with participants was required. A plan was then set up, which com-
prised a half-day session held by the academic researcher and at-
tended by both lay researchers.
In the first hour of the session, the academic researcher in-
troduced the concept of process evaluation and the scope of the
study in a jargon-free language and appropriate format, and then
responded to the questions that the lay researchers might have.
The following 2 hours were focused on training. It was agreed that
the aim of the training would be to make the lay researchers confi-
dence enough to be involved in the interviewing process in such a
way that it produced benefits for themselves, the participants, and
data collection. It was agreed that the academic researcher, who had
expertise in qualitatively interviewing vulnerable populations would
provide refreshers around interviewing techniques, using the inter-
view schedule, managing interactions, non-verbal communication,
sensitive topics, anonymity, and confidentiality.
In the remainder of the training session, the co-research team
arranged the practicalities of the interviews (eg transport, dates). In
accordance with good practice in co-research,8,28 ground rules, and
specific research tasks were established, based on their suitability to
the lay researchers’ skills and aspirations and to research needs. The
themes in the interview topic guide were shared between the aca-
demic and lay researchers. It was decided that, based on the concept
of ‘expert-by-training’ and ‘expert-by-experience’, the academic re-
searcher (with a psychology background) would ask questions about
personal beliefs and motivation, while the lay researchers would in-
vestigate issues related to quality of life, such as emotional support
and independence (Appendix 2).
This session was also an opportunity to build up rapport be-
tween team members. Maintenance of an open, honest, and trust-
ing relationship throughout (and beyond) the collaboration was key
to successful co-research. For example, the team created informal
safe spaces out of the research environment (eg meetings in the
lay researchers’ homes) to further develop the quality relationships
and make the meetings more accessible.29 The team agreed that the
training process would be iterative throughout the study, based on
the emerging needs of the lay researchers. This proved effective after
the lay researchers experienced a moral imperative to offer advice to
participants (eg signpost activities available in the community) who
exhibited difficulties (eg social isolation) during the interviews. In line
with Corbin and Morse,30 the co-research team felt a moral obliga-
tion to pass on information which might help alleviate participants’
emotional burden. However, In order to avoid breaching boundaries
between the scope of the interview and the intervention, and to avoid
a negative impact on data integrity, information was provided after
the interview session had ended, when appropriate (ie a decision was
made by the aca demic team on the type of information that would not
have an impact on the trial and sent to the participants by mail).
2.1.3 | Gathering
The participants with dementia in the PrAISED process evaluation
and their respective identified carer were purposively selected by
the academic researcher. This ensured that the sample was repre-
sentative of the PrAISED RCT participants in terms of gender, eth-
nicity, relationship status, geographical location, and adherence to
the exercise programme (ie low and high adherence).
The academic researcher contacted the participants through
phone to enquire on their availability to take part in the process
evaluation interviews and to confirm whether the participants
were happy to be inter viewed through co-research. None refused.
Once they had accepted to participate, the participants received
a letter with the details of the appointment and an information
sheet. The participants and their carers were interviewed (as
dyads) through qualitative semi-structured interviews in their pri-
vate home. The academic researcher carried out half the number
of the interviews alone (ie with no layresearcher). It was agreed
with the lay re searche rs that gat heri ng inter view dat a thro ugh tw o
different configurations (ie with and without the layresearcher)
would ensure easier identification of the added benefits and chal-
lenges of co-research.
In regards to the co-research interviews, the academic researcher
and the lay researcher (one per inter view) interviewed travelled to
  
|
 5
DI LORITO eT a L.
the participants’ homes together and used the time before and after
the session to brief and debrief. The debriefing was an opportunity
to discuss any aspects of the interview session that might have had
a negative impact on the emotional wellbeing of the lay researchers.
Verbal information (eg access to counselling services) and advice (eg
how to process negative accounts from participants) were provided,
when needed.
On the day of the interview, before the session commenced,
each of the co-research team members introduced themselves.
Alternatively, the academic and layresearcher answered any ques-
tions that the participants might have, and gathered consent. The
interviews were audio-recorded and continued until data saturation
was achieved. The interviews were carried out from April to August
2019. In total, the co-research team interviewed seven participants
with dementia and their carers (14 people in total). Carer partic-
ipants were five spouses, one sibling, and one child. The sessions
lasted on average 1 hour.
2.1.4 | Analysing
A professional agency transcribed the interviews verbatim. The
transcripts were not returned to participants for comments. The
transcripts were transferred onto NVivo 12.31
The lay researchers decided to which extent they felt comfort-
able being involved in data analysis and the academic team agreed on
an analysis plan. The academic researcher analysed independently
(ie without the lay researchers) the transcripts of the interview he
had carried out alone. Again, it was agreed that comparing different
configurations in data analysis (ie with and without lay researchers)
would facilitate learning points.
All the transcripts were analysed through inductive content
analysis. The academic researcher underlined relevant pieces of
text and wrote coding labels/ideas for each on the margin of each
co-research interview transcript. The co-research interview tran-
script files were also sent to lay researchers, who read them and
annotated their comments next to the text, independently of the
academic researcher's annotations. Although some of the themes
identified in the transcripts by the academic and lay researchers
were in common, the annotations of lay researchers were instru-
mental in identifying further aspects relevant to the experience
of dementia. In the example showed in Figure 2, for example, the
layresearcher identified the themes of independence and privacy
as central to the experience of physical activity in participants
with dementia.
Once merged, the academic's annotations (from both the co-re-
search and non-co-research interviews) and lay researchers’ anno-
tations (from co-research interviews) were used by the academic
researcher to generate a tentative code book, including themes
and subthemes emerging from the transcripts and their operational
definitions. The tentative code book was passed to the lay research-
ers, who gave their feedback, which was used to aid construct re-
finement. For example, the construct ‘capability’ was expanded to
include MG’s observation that 'chronic conditions, such as arthritis,
heart problems and stroke, might compound upon and mitigate capabil-
ity'. The codebook will be used by the lay researchers, who will code
two of the interview transcripts each. Inter-rater reliability between
the academic and lay researchers will be tested through Cohen's
Kappa coefficient.32
2.1.5| Writing and sharing impact
The lay researchers were involved as co-authors in all study outputs,
such as the present paper and the process evaluation protocol.25
They will also be co-authors of the upcoming main process evalu-
ation report and a motivation paper, reporting on aspects affecting
participants’ motivation to engage in the programme. The co-re-
searchers will schedule a visit to the participants to present study
findings, so that they can give feedback, once the PrAISED trial is
over (ie after month 12). The lay researchers co-presented research
outputs with the academic researcher in seminars and lectures at
the University of Nottingham, and a poster on the experience of co-
research at the 2019 Alzheimer Europe Conference in The Hague,
Netherlands.
2.1.6 | Data collection
All three co-research team members ann ot ated ref lections of their ex-
perience of co-researching in personal diaries, throughout the collab-
oration. Reflective writing has become established as a method in its
own right , as a data sour ce and a key element of qualitative rese arc h.33
It enables novel perspectives and insight on experience to emerge,
which contributes to understanding and learning about practice.34,35
Scanlon et al (2002:137)36 contend that ‘reflection enables practition-
ers to tap into knowledge gained through experiences’.
The co-research team agreed not to use any pre-imposed tem-
plate to record their reflections, as this would allow the co-re-
searchers’ subjective experience to emerge more easily. However,
to maintain consistency between the sources, each contributor re-
ceived guidance to reflect around three main areas of co-research:
methodological issues, benefits, and challenges (as per study aim).
It was agreed within the co-research team, that the personal reflec-
tions would be annotated as soon as possible after each qualitative
interview with participants, to ensure retentions of fresh memories
from the session. A sum mar y of the reflec tive pieces compiled is fe a-
tured in this study (see results).
2.1.7 | Data analysis and model generation
Once compiled, the individual reflections from each co-researcher
were collated by the academic researcher and stored safely in a
password-protected computer to ensure data confidentiality. At the
end of the co-research experience, the co-research team joined in
6 
|
   DI LORITO eT aL.
a three-hour session held in one of the lay researchers’ home (MG)
to analyse the data and co-produce a model for good practice in co-
research with carers of people with dementia.
In this session, the co-researchers individually identified and
extrapolated from their own diaries aspects they deemed as
relevant for good practice (Table 1). In a team effort, the co-re-
searchers then aggregated similar aspects reported by the dif-
ferent co-researchers and generated overall principles on how
researchers should address these aspects to pursue good practice
in co-research.
FIGURE 2 Excerpt of interview transcripts, with annotations from the academic (CDL) and lay researcher (MD)
  
|
 7
DI LORITO eT a L.
TABLE 1 Identification of relevant aspects in co-research and how these can be addressed in practice
Co-
researcher
Aspec ts identified as relevant through the co-researchers’ reflective
diaries
Overall principle (ie how to address the aspects). The
academic researchers should…
MD (lay
researcher)
The lay researchers feeling worthy/motivated Adopt a non-tokenistic approach, build rapport/ foster
trusting relationships, give back to lay researchers, keep
lay researchers in the loop
Developing questions that are understood/acceptable to participants Establish research roles (to each their won expertise),
involve lay researchers as co-authors in research
outputs (ie publications and dissemination), give up
control on research
The lay researchers feeling confident to be of value to the study Provide iterative training
Managing sensitive situations with participants Ensure safety of all involved
Treating participants with dignity and respect Select lay researchers who have the right skillset
Avoiding a totally academic viewpoint (eg bringing out issues that
might be withheld by participants)
Invite lay researchers to analyse data independently of
academic researcher
Reflecting on strength and weaknesses of co-research through data
analysis
Use transcripts of interviews and keep a reflective diary
to derive learning points
The lay researchers opening up too much/deflecting from interview
purpose
Ensure that relevant info is shared and collected during
the interview
Identif ying areas of relevance that may pass unnoticed to academics Invite lay researchers to analyse data independently of
academic researcher
Eliciting genuine, non-deferential responses from participants Promote an equitable interview session where all
involved are comfortable
The lay researchers developing the confidence in academic meetings
to use their own lived experiences to support or challenge research
Have an open mind and be prepared to step out of your
comfort zone
The lay researchers being able to bring out emotional thoughts, quality
of life, and daily mundane problems that could be overlooked, if an
academic is concentrating on other aspects and outcomes
Give up control on research
MG (lay-
researcher)
The lay researchers approaching the inter views understanding the
study
Select lay researchers who have previous experience of
PPI in research
Ensuring the lay researcher is fully confident to make their
contribution and meet the challenges of co-research
Ensure resources are in place (eg for training, costs)
Establishing a connection with the par ticipants and using empathy and
understanding to widen and deepen the participants’ experience
Select lay researchers who have the right skillset
Creating an initial bond of trust with participants Build rapport/trusting relationships
Helping carers to open up Promote an equitable interview session where all
involved are comfortable
Helping lay researcher further confidence in their skills and affirming
their underlying motivation
Travel together to interviews (eg to brief and debrief)
The lay researchers committing time away from home Allow extra time for planning, ensure resources for lay
researchers are in place
Requiring great skills, experience and knowledge on the part of the lay
researchers, particularly during the inter view
Provide iterative training
Academic team having an underpinning expectation of lay researchers
meeting very high standards
Provide iterative training, have an open mind, ensure
resources for lay researchers are in place
Research participants’ investment in the study deser ving a highly
skilled interviewer
Provide iterative training, ensure resources for lay
researchers are in place, promote interview session
where all involved are comfortable
Co-research affecting the lay researcher emotionally Ensure safety of all involved, ensure resources for lay
researchers are in place, travel together to interviews
(eg to allow time for debriefing/processing emotions)
Academics undermining contributions of lay researchers in the
research agenda, as they do not conform to ‘rigorous’ academic
models
Adopt a non-tokenistic approach, give back to lay
researchers, have an open mind, step out of your
comfort zone (eg challenge academic culture)
(Continues)
8 
|
   DI LORITO eT aL.
The co-research team then mapped out these principles in the
previously referenced diagram illustrating different stages of the re-
search cycle17 and derive d an ad hoc Research Cycle Model outlining
the principles for good practice.
3 | RESULTS
3.1 | The lay researchers’ personal reflections
3.1.1| Lay researchers MD reported
Being involved with the study through the whole process, contrib-
uting knowledge gained from lived experiences, was fulfilling and
made me feel I had, in a small way, given back to the community.
Working together with my PPI colleague and an academic who is
motivating and committed to the ethos of lay research was fulfilling
and gave us a feeling of worth and motivation.
The training sessions were very helpful. At the briefing meeting,
attended by the academic researcher, my fellow layresearcher and
myself, we discussed the structure of the interviews, and decided
who would ask which questions and what was expected of us. As
lay researchers, we were able to give input into how the questions
should be delivered, to ensure these would be understood and ac-
ceptable to both participants and carers. When I left this meeting
I felt far more confident that I could be of value to the research
project.
In the context of data collection, meeting participants and car-
ers in their homes to discuss personal information required a great
deal of experience in managing sensitive situations. A natural ability
to relate and empathize with a wide sociocultural base was also re-
quired, to ensure participants and carers were treated with dignity
Co-
researcher
Aspec ts identified as relevant through the co-researchers’ reflective
diaries
Overall principle (ie how to address the aspects). The
academic researchers should…
CDL
(academic
researcher)
The lay researchers helping to make the research documents and the
topic guide more language-appropriate to the participants
Establish research roles and expertise, give up control on
research
The lay researchers helping to identify areas which might be especially
relevant to the participants’ experience
Establish research roles and expertise, give up control on
research
Ensuring an open and equal relationship between participants and
interviewers
Promote an equitable interview session where all
involved are comfortable
Showing the participants that the research team really values the
inclusion and empowerment of people with lived experience in
research
Adopt a non-tokenistic approach
Establishing an empathic bond with the participants Select lay researchers based on skills and experience
The lay researchers helping to make the session less formal, thus
creating a relaxed atmosphere
Build rapport/foster trusting relationships
The co-research team having a good demographic balance, which well
suits the participants’ diverse range of characteristics
Select lay researchers based on skills and experience
The co-research team having a mix of personalities. which enhances
data collection, as the participants were more likely to find a type of
personality they were better matched with
Select lay researchers based on skills and experience
The lay researcher having greater ‘situational sensitivity Give up control on research
Grasping different nuances of the interviews in data analysis Invite lay researchers to analyse data independently
of academic researcher, involve lay researchers as
co-authors in research outputs (ie publications and
dissemination), give up control on research
Containing academic researcher's bias in data analysis Invite lay researchers to analyse data independently
of academic researcher, involve lay researchers as
co-authors in research outputs (ie publications and
dissemination), give up control on research
Delaying data collection, as extra time is needed to agree on
appointment dates
Get guidance from experts
The lay researchers empathising and relating more easily with their
own peers (ie the carer-participants) than with participant with
dementia
Promote an equitable interview session where all
involved are comfortable
Risk of carers revealing information to lay researchers out of the
formal interview session
Ensure that relevant info is shared and collected during
the inter view, provide iterative training
Agreeing on rigorous research protocols within the co-research team,
prior to contact with the research participants
Get guidance from experts, set up plans for collaboration
TABLE 1 (Continued)
  
|
 9
DI LORITO eT a L.
and respect. Prior to retiring, I worked in the National Health Service
(NHS) as an Administration Manager and had daily contact with end-
of-life patients. In the interview sessions, I felt I was able to use the
personal skills learned in my working life to empathize with partic-
ipants and carers on a similar level. I was able to come alongside
the participants and carers on a day-to-day level, rather than from
an academic viewpoint, bringing out problems and worries that
perhaps could be withheld, if people were overawed by academic
professionals. It was interesting to notice that the empathy created
between the participant, the carer, and myself enabled them to relax
and share relevant thoughts that they may have felt a professional
would not be interested in.
Undertaking the review of transcripts following the interviews
was a useful exercise in collating thoughts and reflecting on the
strengths and weaknesses of using lay researchers. I was concerned
that I had talked about my own experiences too much and had de-
flected from the purpose of the interviews. However, on reading the
transcripts, it was apparent that my personal thoughts had a pos-
itive effect and empowered the carer to speak about worries that
may otherwise have been withheld. It was also interesting to reflect
on the changing mood of the participant and carer, identify areas of
stress, anxiety or strain on the carer trying to manage difficult situ-
ations and understand the importance of social contact and family
support. Many of these findings, I feel, were drawn out during casual
comments from the layresearcher.
By default, research participants could still view healthcare pro-
fessionals and academics as being on a different level, particularly
older people, who may have been brought up not to challenge their
authority. The situation could change, as the younger generations
do not have the same deferential attitudes. At present, however,
while academics may have lived experiences and an understanding
of the participants’ perspectives, it will not change how the par-
ticipants, in return, view the professionals. This could be reflected
in their responses to the interviews, if a lay person was not there.
My involvement presented with some challenges too. The ex-
perience my PPI colleague and I brought from careers outside the
confines of academia sometimes clashed with the academics’ views
and needs. For example, in relation to participant-fronting docu-
ments, I found it was difficult to balance academic language require-
ments while also ensuring understandable wording for participants.
Having the confidence in academic meetings to use my own lived
experiences to support or challenge research also presented with
challenges. Sitting with academics at research team meetings was
at times daunting. When the academics used language unfamiliar to
lay people, I felt inhibited to speak out. This might have limited the
added value of hearing my views as a lay person.
The main lessons I have learned from the experience is how
important it is in people-centred research that the academic re-
searcher is open to using lay people and is not dismissive of their
views. Being able to identify with participants and carers is not
only an intellectual process. Lay researchers are able to bring out
emotional thoughts, quality of life, and daily mundane problems
that could be overlooked, if an academic is concentrating on other
aspects and outcomes. Co-research is still in its infancy stage, pro-
tocols and models need to be created to ensure good practice. The
present study, which I and my PPI colleague co-authored, represents
a step in the direction of improving participation in research for peo-
ple with dementia and their families.
3.1.2 | Lay researchers MG added
This has been the most affirming and positive piece of work that I
have had the pleasure to be part of, in the 10 years that I have given
to PPI, primarily in dementia studies.
Approaching the new experience of process evaluation and
co-researching, over the previous 3 years, MD and I had invested
much time and energy and brought our lived experiences together
with our knowledge and skills to the PR AISED RCT. We had been an
integral part of development of PrAISED and became very familiar
with its aims and procedures. Together with helping write the par-
ticipant-facing material, my husband and I had modelled as partici-
pant and carer for the publicity material and exercises. All this meant
that I could approach the interviews confident in my understand-
ing of the study and committed to its success. When we met with
the academic researcher, who embraced our roles and ensured we
were fully confident to make this further contribution, we knew we
could positively meet the challenge. All this enabled us to establish a
connection with the participants, and this was clearly such a strong
factor in ensuring the interviews were both structured as planned,
but still allowed them to evolve organically, as our empathy and un-
derstanding helped widen and deepen the experience.
My introduction to the participants as a layresearcher was made
easier, as a photograph of me and my husbands fronted the large
PrAISED work folder that each participant had been given on their
involvement in the study. I think this further helped to lower barriers,
as my photograph had practically been with the participant and carer
for months. This seemed to create an initial bond of trust, which be-
came a significant part of the interview process. While the physical
voices of the carers were heard more often, their inner thoughts and
feelings were more often than not put to one side. The carers tended
to prioritize reporting of the participants’ needs and their experi-
ences. Therefore, I felt that my responses as a carer with lived expe-
rience in a small way helped to draw out the reality of the impact of
the dementia on their relationships and lives. Therefore, as a team,
we gained a more comprehensive picture of their involvement in the
study and the significant changes it brought in their daily living.
The opportunity to debrief with the academic researcher, who
brou ght his profes sional capaci t y as a psyc hol ogist into every discu s-
sion, was a new experience for me and gave me further confidence
in my skills. This is rarely if ever given to PPI, but I felt it was vital and
highly valuable. It contributed to my experience of PPI working at its
very best. It affirmed my underlying motivation and belief that what
we lay researchers do make a difference.
There were some practicalities involved in co-research that
migh t pose a chal len ge to other PPI me mbe rs wis hing to underta ke
10 
|
   DI LORITO eT aL.
the role of lay researcher. For example, travelling to participants’
homes and conducting the interviews meant that I had to commit
time away from home. Co-research in this study required great
skills on the part of the lay researchers, particularly during the in-
terview. With very limited experience in process evaluation, I and
my fellow PPI colleague worked as equals with a highly trained
academic researcher. It has to be acknowledged that, by the very
nature of being volunteers, the level of skills, experience, and
knowledge required for this role might not be met by other PPI
members.
The academic team had an underpinning expectation of us lay re-
searchers meeting very high standards. Similarly, the research partic-
ipants’ investment in the study deserved a highly skilled interviewer
to enable them to openly talk about their experiences. These feelings
put a lot of pressure on me. The preparation, training, and debriefing
provided by the academic researcher were key in boosting my con-
fidence to undertake the role. However, as my life-experiences par-
alleled those of the participants, unlike the professionals, I could not
see the interview session purely as an academic process. This made
co-researching such a worthwhile part of my journey, but it also af-
fected me emotionally. Retrospectively, I think I should have asked for
further support from the academic researcher to work this through.
I think it must be recognized that, given the emotional invest-
ment that lay researchers may have in the study, this might have
an impact on the interview session. These difficulties can only be
overcome through considerable training, in-depth support, and
trust. While these were embedded in the co-research team, I think
that a change of culture is still required in the academic environ-
ment at large, to embrace the added value that lay researchers may
bring to research studies. At times, I felt that my contributions in
the research agenda were undermined, as they did not conform to
‘rigorous’ academic models. The lack of recognition of what true col-
laboration in research means made me more guarded to undertake
some of the co-research tasks and presented as a challenge for me
to work through personally, also at the level of professional rapport
with members of the academia.
In conclusion, the experience for me has been very powerful. To
meet, at last, with those taking part in the study felt like truly being
embedded in the research process. It gave me further insight into
others’ lived experiences, enabling me to prepare for a future, which
could see me on a parallel journey.
3.2 | The academic researcher's personal reflections
Involving the lay researchers in the PrAISED process evaluation
yielded numerous benefits. Their input was invaluable in making the
research documents and the topic guide more language-appropriate
to the participants. The lay researchers also helped to identify areas
which might be especially relevant to the participants’ experience
of the PrAISED RCT. It was felt that the original topic guide was
lengthy and that a long interview session might cause fatigue in the
participants. The lay researchers’ input was invaluable in selecting
the most relevant questions (eg Improved quality of life through
exercise), which were prioritized during the interview session, over
those which may yield less insightful responses (eg intervention
characteristics).
The benefits of co-research were also evident in the context
of data collection. In this respect, having collected half of the data
independently, I was able, by comparison to better identify the
added values of co-research. Being the interview semi-structured,
and thus guided by a pre-defined topic guide, there were not any
differences in relation to the quality or quantity of the data col-
lected. However, the presence of the lay researchers contributed
to diffuse tension, thus creating a lighter atmosphere. For exam-
ple, at the beginning of the interview, the initial introduction of
the layresearcher as someone having experience of being a carer
of a person with dementia was instrumental in setting the ground
for an open and equal relationship between participants and inter-
viewers. The layresearcher also gave a ‘human face’ to PrAISED,
showing the participants that the research team really values the
inclusion and empowerment of people with lived experience in
research. Given their lived-experience with dementia, the layre-
searcher was also able to establish an empathic bond with the
participant. The carers seemed at ease opening up with someone
experiencing a similar journey in dementia and the informality of
the situation welcomed the use of humour, which further created
a relaxed atmosphere.
Being the co-research team made up of a younger academic
male researcher and an older female layresearcher, the research
team had a good demographic balance, which well suited the partic-
ipants’ diverse range of characteristics. It was found that the partic-
ipants could relate well (and open up) with the one researcher who
had similar age and background, given the shared life-experiences.
A mixed-gender research team was also a valuable asset with the
couples who adopted strict gender roles. It was noticed that female
participants would more often keep eye contact with the female re-
searcher, while the male participants would find it easier to relate
with the male researcher. It was also observed that a mix of person-
alities in the research team was helpful to enhance data collection,
as the participants were more likely to find a type of personality
they were better matched with and open up more easily about their
experience.
Other than personal characteristics, the lay researchers brought
added value to the interview process, given their lived experience
with dementia. They displayed great ‘situational sensitivity’, which is
‘consideration of the interest and vulnerability of the particular par-
ticipant, rather than application of general rational principles’.37 For
example, knowing first-hand the sensitivity of terminology, though
this was not established as a ground rule during the preparatory
work leading to data gathering, the lay researchers avoided using
the term ‘dementia’, unless it was first mentioned by the carer or the
participant during the interview.
In terms of data ana lysis, the differences between the two differ-
ent configurations (ie with and without the input of lay researchers)
were more marked. Having different background and experiences,
  
|
 11
DI LORITO eT a L.
the lay researchers’ transcript annotations grasped different nu-
ances of the interviews. For example, MD tended to focus on the
use of language and its underlying meaning, while MG on aspects
related to quality of life and social networking. The inclusion of the
perspective of lay researchers in the generation of themes and sub-
themes was therefore instrumental to contain academic researcher's
bias and allowed validation of process evaluation data with people
with lived experience with dementia.
There were also some challenges experienced in co-research.
Undertaking co-research might potentially delay data collection,
as extra time is needed to agree on appointment dates, which are
suitable to all those involved in the process. While co-delivering the
interview with lay researchers aims to make the process more equi-
table for all research participants, it must be recognised that when
lay researchers are carers, they might more easily empathize and re-
late with their own peers (ie the carer-participants). In such scenario,
the participant with dementia might still perceive the interview as
disempowering. The empathic bond between the lay researcher and
the carer participant might also have repercussions on data collec-
tion. It was noticed that some carers tended to confide in the lay
researcher out of the formal interview session, revealing information
that were relevant for the study in confidence to the lay researcher.
This suggests the importance of rigorous research protocols to be
agreed within the co-research team, prior to contact with the re-
search participants.
3.3 | Generation of a model for good practice
The model for good practice in research with carers of people with de-
mentia (Figure 3) features research-stage-specific and overall princi-
ples. While the former apply specifically to co-researching with carers
of people with dementia, we feel that the latter represent transferable
information which can be used in co-research with other members of
the general public (ie without experience of dementia).
In relation to the research-stage-specific guidelines, the ‘think and
plan’ stage requires the set-up of plans for long-term collaboration with
lay researchers (during and after the research cycle) early on in the re-
search38 and an appropriate selection of the lay researchers. Ideally, the
layresearcher role should be co-designed with PPI members who wish
to be involved. In order to facilitate effective and meaningful contri-
bution in the research process, attention should be dedicated to both
the lay researchers’ aspirations, preferences, and goals to be obtained
from involvement and to the skills they need to fulfil their research role.
It is also ideal to select lay researchers with different skillsets, back-
ground, experience from each other, so that each of them can contrib-
ute uniquely to the process. Although separate ethical approval was
not a requirement for co-research in this study, ethical and governance
demands may vary across different institutions, as reported in the liter-
ature.15,39 Academic researchers should therefore work proactively to
ensure that approvals (eg letters of access for lay researchers to have
contact with research participants recruited through the NHS) are in
FIGURE 3 A model for good practice in co-research with carers of people with dementia
12 
|
   DI LORITO eT aL.
place when involving lay researchers. In the ‘prepare’ stage, the model
emphasizes the importance of training offered to lay researchers, which
needs to be on-going throu ghout the projec t, based on eme rging nee ds.
At this stage, it is also essential for good working relationships to dis-
cuss, negotiate, and establish clear research roles.
In the ‘gather’ stage, the co-research team members should
share commuting to the location of the data collection, which will
promote bonding and allow pre-session preparation and post-ses-
sion discussion. This may also resolve transportation issues that the
lay researchers may have to reach the interview locations. To ensure
effective data collection, all those involved in the session should be
made comfortable. In order to make the interview process equitable
for the participant with dementia, the team should send photos of the
researchers in advance, so that the participant can get familiar before
the session. The photos could also help the participants with memory
impairment to remember the co-researchers in the follow-up visit. In
the context of a co-research interview, four people might be present.
Given the ‘expertise’ of co-researchers, the participants with demen-
tia and their carers may be in a disadvantaged position, as they might
be less articulate and feel less confident to voice their views. This po-
tential power differential may require great skills of interaction man-
agement on the part of all researchers, to ensure equitability in the
interview process.15 Again, this highlights the importance of training.
Training is also crucial to ensure data integrity. An important
methodological issue we encountered is the moral imperative to
give support and advice that lay researchers may experience when
hearing the participants’ difficulties. This may breach boundaries
between research interview and intervention and have an impact
on data integrity. In the lack of appropriate training, there is a risk
of actively influencing responses, as opposed to merely elicit them.
During the interview process, it is also crucial to ensure the
physical and emotional wellbeing of the layresearcher, who should
always be supported by the academic researcher. As found in pre-
vious studies, when hearing the difficulties of the participants, the
lay researchers might reflect on their own situations and become
emotionally stressed.15 Therefore, strategies should be in place for
lay researchers to discuss any concerns/ emotional issues. Ideally, a
specific distress protocol should be in place to provide verbal and
written support to lay researchers.
In the ‘analyse’ stage, the model emphasizes the importance of
lay researchers interpreting/analysing data independently of the ac-
ademic researcher, before results of the analysis process are merged.
This will ensure different perspectives and their own voices to be
reflected in the research outputs. In line with previous studies,39 in
the ‘write and share impact’ stage, lay researchers should contribute
as equals in writing reports and dissemination materials (as active
co-authors, by writing their own sections) and in presenting research
outputs at conferences, seminars, and talks.
In relation to the overarching action points (ie applicable to
all stages of the research cycle), the academic researchers should
strive for non-tokenistic and meaningful collaboration in all research
stages. In order to engage effectively in co-research, they can seek
help and guidance from experienced researchers in the field and/or
university resources. The academic team should allocate extra re-
sources in place to pursue good practice in co-research, including
extra funds, time, and staff.15 In the context of a large RCT, financial
and staff resources were such that co-research could be adequately
funded, even though it had not been considered/costed in the origi-
nal project proposal/ protocol. However, given its resource require-
ments, academics willing to undertake co-research should calculate
costings from the initial stages of the project application.
Throughout the co-research experience, it is crucial to cultivate
good rapport within the team, and foster trusting relationships. This
could be facilitated by members spending time away from work to-
gether. The whole experience of co-research should ideally be recorded
in reflective diaries, which can be used not only as key data sources, to
advance good practice, but also to promote personal and professional
development. Finally, as also reported in previous studies,29 the wider
research team should give back to lay researchers (in the form of finan-
cial compensation and/ or professional and personal development), to
acknowledge their invaluable contribution to research. Involve guide-
lines27 ensure adequate compensation, so that it can be costed appro-
priately. In keeping the lay researchers motivated to ac tively contribute
through the research project, as also found in previous studies,29 the
academic team should set up systems and official channels (eg monthly
project meetings) to keep them updated about the project.
4 | DISCUSSION
This meth odology paper aimed to add to the existing knowledge of good
practi ce in PPI, by reporting on an experiment of co-research with carer s
of people with dementia in the context of a large RCT (PrAISED) and by
developing, based on results, a model for good practice (Figure 3). In line
with the current PPI standards,8,28 two PPI members with experience of
caring for someone with dementia and an academic researcher collabo-
rated as equals in all stages of the research cycle, including designing the
study protocol, developing the topic guide, collecting and analysing data,
and disseminating research findings. The novelty of this work, compared
to the existing literature is that, by having a dedicated section in the
paper where to report their reflections on the process of co-research,
the lay and academic researchers shared equal power as contributors in
results dissemination. Involving lay researchers as co-authors, we feel, is
in line with full and meaningful involvement in research.
The study is characterized by certain strengths and limitations.
In some previous experiments of co-research with carers of people
with dementia, the lay members were involved at later stages of the
research cycle (eg after the interview topic guide had received eth-
ical approval).15 A strength of this study is that the lay researchers
were involved since the development phase of the process evalua-
tion, giving carers of people with dementia an active research role
throughout the whole research cycle. Although we only involved
two lay researchers, the experience they accumulated through
previous PPI roles, their knowledge of the PrAISED RCT and the in-
terview skills that they built through their past working experience
greatly contributed to gather enhanced research data.
  
|
 13
DI LORITO eT a L.
For future implications for research, while there is an increas-
ing demand for PPI, in fact a requirement for study grants, a culture
change in academia is still required to combat tokenism and ensure
that members of the public are not merely used as ‘assets’ to gives
PPI accreditation to research studies. In collaborating with the lay
researchers, an open mind is crucial, and the academic researchers
should be ready to challenge traditional views on research, step out of
their comfort zones, and cede control over the research process. This
may require specific training or a change of culture. Despite advance-
ments, as reported in previous studies,39 further resources should be
available within research projects to enhance the skills of academic
researchers to effectively engage in PPI through training.
Further resources are also required to recruit PPI members, which
are currently involved in research mostly through snowball sampling
(ie PPI volunteers already involved in research proactively recruiting
their friends, colleagues, and community group members). This would
enable recruitment of diverse public and patient contributors. Finally,
reso urces nee d to be in place to full y support PPI memb ers’ ne eds when
undertaking research roles. Despite the lack of training and little finan-
cial compensation, PPI members have been increasingly asked to un-
dertake research roles that require a high level of skill and knowledge.
In conclusion, if academic institutions are to meet the challenges of
more effective and meaningful PPI in research, there is a need for more
structured support of academic and lay researchers. In this respect, the
future of PPI in research lies in the accumulation of knowledge granted
by studies such as this one. This study showed that co-research with
carers of people with dementia may yield benefits, both on the personal
and professional levels of those involved and in terms of research out-
puts. There are certain challenges and practicalities that require care-
ful consideration in order to make the involvement of lay researchers
meaningful and effective, which can be addressed with extra planning
and resources and the sustained commitment of university institutions.
CONFLICT OF INTEREST
None to declare.
DATA AVAILAB ILITY STATE MEN T
Data are available from the authors, on request.
ORCID
Claudio Di Lorito https://orcid.org/0000-0002-8953-0117
REFERENCES
1. INVOLVE. What is public involvement in research? 2019. Retrieved
from: https://www.invo.org.uk/find-out-more/what-is-publi c-invol
vemen t-in-resea rch-2/.
2. Porter L. Unlearning the Colonial Cultures of Planning. Farnham,
United Kingdom: Ashgate; 2016.
3. Cotterell P. Exploring the value of service user involvement in data
analysis:‘Our interpretation is about what lies below the surface’.
Educ Action Res. 200 8;16(1):5-17.
4. Cheffey J, Hill L, McCullough C, McCullough C. Can I facilitate a
project when my memory lets me down?”: The challenges and re-
wards of co-producing a “living well with dementia” course. FPOP
Bull. 2017;137:19-25.
5. Abma TA, Nierse CJ, Widdershoven GA. Patients as partners in
responsive research: methodological notions for collaborations in
mixed research teams. Qua l Health Res. 2009;19(3):401-415.
6. Lepore M, Hughes S, Wiener JM, Gould E. Including people with
dementia and their caregivers as co-researchers in studies of de-
mentia care and services. Background paper for national research
summit on dementia care. 2017.
7. Hickam D, Totten A, Berg A, Rader K, Goodman S, Newhouse R. The
PCORI Methodology Report. Washington: PCORI; 2013.
8. Gove D, Diaz-Ponce A, Georges J, et al. Alzheimer Europe's position
on involving people with dementia in research through PPI (patient
and public involvement). Aging Mental Health. 2018;22(6):723-729.
9. Tarpey M, Bite S. Public involvement in research applications to the
National Research Ethics Ser vice: Comparative analysis of 2010 and
2012 da ta. Eastleigh: INVOLVE; 2014.
10. Northway R, Parker M, Roberts E. Collaboration in research. Nurse
Res. 2002;9(2):75-83.
11. Di Lorito C, Bosco A, Birt L, Hassiotis A. Co-research with adults
with intellectual disability: A systematic review. J Appl Re s Intellec t
Disabil. 2018;31(5):669-686.
12. Di Lorito C, Birt L, Poland F, et al. A synthesis of the evidence on
peer research with potentially vulnerable adults: how this relates to
dementia. Int J Geriatr Ps ychiatr y. 2017;32(1):58-67.
13. O’Connell ME, Crossley M, Cammer A, et al. Development and eval-
uation of a telehealth videoconferenced support group for rural
spouses of individuals diagnosed with atypical early-onset demen-
tias. Dementia. 2014;13(3):382-395.
14. Morgan D, Crossley M, Stewart N, et al. Evolution of a communi-
ty-based participatory approach in a rural and remote dementia care
research program. Prog Community Health Partnersh. 2014;8(3):337.
15. Tamagnini F, Cotton M, Goodall O, et al. ‘Of Mice and Dementia’:
A filmed conversation on the use of animals in dementia research.
Dementia. 2018;17:1055-1063.
16. Poland F, Charlesworth G, Leung P, Birt L. Embedding patient
and public involvement: Managing tacit and explicit expectations.
Health Expectations. 2019;22(6):1231-1239.
17. Mockford C, Murray M, Seers K, et al. A SHARED study-the ben-
efits and costs of setting up a health research study involving lay
co-researchers and how we overcame the challenges. Res Involv
Engagem. 2016;2:8.
18. Bosco A, Schneider J, Coleston-Shields DM, Orrell M. Dementia
care model: Promoting personhood through co-production. A rch
Gerontol Geriatr. 2018;81:59-73.
19. Etters L, Goodall D, Harrison BE. Caregiver burden among dementia
patient caregivers: a review of the literature. J Am Acad Nurse Pract.
2008;20(8):423-428.
20. Brodaty H, Donkin M. Family caregivers of people with dementia.
Dialogues Clin Neurosci. 2009;11(2):217.
21. Alzheimer Europe. Strategic Plan (2016–2020). Retrieved from:
https://www.alzhe imer-europe.org/Alzhe imer-Europ e/Our-work/
Strat egic-Plan-2016-2020.
22. Department of Health. Prime Minister’s Challenge on Dementia 2020.
London: Department of Health; 2015.
23. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting
qualitative research (COREQ): a 32-item checklist for interviews
and focus groups. Int J Qual Health Care. 2007;19(6):349-357.
24. Ha rwo od RH, van der Wa rdt V, G oldb erg SE, et al. A deve lop men t
study and randomised feasibility trial of a tailored inter vention
to improve activity and reduce falls in older adults with mild
cognitive impairment and mild dementia. Pilot Feasibility Stud.
2018;4:49.
25. Di Lorito C, Pollock K, Harwood R, et al. Protocol for the process
evaluation of the promoting activity, independence and stability
in early dementia and mild cognitive impairment (PrAISED 2) ran-
domised controlled trial. Maturitas. 2019;122:8-21.
14 
|
   DI LORITO eT aL.
26. Hayes G, Costello H, Nurock S, Cornwall A, Francis P. Ticking boxes
or meaningful partnership–The experience of lay representation,
participant and study partner involvement in Brains for Dementia
Research. Dementia. 2018;17:1023-1034.
27. INVOLVE. Payment and recognition for public involvement. 2019b.
Retrieved from: https://www.invo.org.uk/resou rce-centr e/payme
nt-and-recog nitio n-for-publi c-invol vemen t/.
28. Hickey G, Brearley S, Coldham T, et al. Guidance on Co-producing a
Research Project. Southampton: NIHR INVOLVE; 2018.
29. Litherland R, Burton J, Cheeseman M, et al. Reflections on PPI from
the ‘Action on Living Well: Asking You’ advisory network of peo-
ple with dementia and carers as part of the IDEAL study. Dementia.
2018;17:1035-1044.
30. Corbin J, Morse JM. The unstructured interactive interview: Issues
of reciprocity and risks when dealing with sensitive topics. Qual Inq.
2003;9(3):335-354.
31. NVivo qualitative data analysis Software. Melbourne, Australia:
QSR International Pty Ltd; 2018.
32. Cohen J. A coefficient of agreement for nominal scales. Educ Ps ychol
Meas. 1960;20(1):37-46.
33. Jasper MA. Using reflective writing within research. J Res Nurs.
2005;10(3):247-260.
34. Boyd EM, Fales AW. Reflective learning: the key to learning from
experience. J Humanist Psychol. 1983;23(2):99-117.
35. Bulman C, Schutz S, (eds). Reflective Practice in Nursing. Oxford:
Blackwell Publishing; 2004.
36. Scanlon JM, Care WD, Udod S. Unravelling the unknowns of reflec-
tion in classroom teaching. J Adv Nurs. 2002;3388(2):136-143.
37. Heggestad AKT, Nortvedt P, Slettebø Å. The importance of moral
sensitivity when including persons with dementia in qualitative re-
search. Nurs Eth ics. 2013;20(1):30-40.
38. Bethell J, Commisso E, Rostad HM, et al. Patient engagement
in research related to dementia: A scoping review. Dementia.
2018;17:94 4-975.
39. Parveen S, Barker S, Kaur R, et al. Involving minority ethnic commu-
nities and diverse experts by experience in dementia research: The
Caregiving HOPE Study. Dementia. 2018;17:990-1000.
How to cite this article: Di Lorito C, Godfrey M, Dunlop M,
et al. Adding to the knowledge on Patient and Public
Involvement: Reflections from an experience of co-research
with carers of people with dementia. Health Expect.
2020;00:1–16. https://doi.org/10.1111/hex.130 49
APPENDIX 1
No. Item Guide questions/description Reported on
Domain 1: Research team and reflexivity
Personal Characteristics
1. Inter viewer/facilitator Which author/s conducted the interview or focus group? Page 4
2. Credentials What were the researcher's credentials? eg PhD, MD Page 4
3. Occupation What was their occupation at the time of the study? Page 4
4. Gender Was the researcher male or female? Page 4
5. Experience and training What experience or training did the researcher have? Page 4
Relationship with participants
6. Relationship established Was a relationship established prior to study commencement? Page 7
7. Participant knowledge of the
interviewer
What did the participants know about the researcher? eg personal goals, reasons for
doing the research
Page 7
8. Interviewer characteristics What characteristics were reported about the inter viewer/facilitator? eg Bias,
assumptions, reasons, and interests in the research topic
Page 7
Domain 2: study design
Theoretical framework
9. Methodological orientation and
Theory
What methodological orientation was stated to underpin the study? eg grounded
theory, discourse analysis, ethnography, phenomenology, content analysis
Page 7
Participant selection
10. Sampling How were participants selected? eg purposive, convenience, consecutive, snowball Page 7
11. Method of approach How were participants approached? eg face-to-face, telephone, mail, email Page 7
12. Sample size How many participants were in the study? Page 7
13. Non-participation How many people refused to participate or dropped out? Reasons? Page 7
Setting
14. Setting of data collection Where was the data collected? eg home, clinic, workplace Page 7
15. Presence of non-participants Was anyone else present besides the participants and researchers? Page 7
16. Description of sample What are the important characteristics of the sample? eg demographic data, date Page 7
(Connues)
  
|
 15
DI LORITO eT a L.
No. Item Guide questions/description Reported on
Data collection
17. Interview guide Were questions, prompts, guides provided by the authors? Was it pilot tested? Appendix 2
18. Repeat interviews Were repeat inter views carried out? If yes, how many? Page 7
19. Audio/visual recording Did the research use audio or visual recording to collect the data? Page 7
20. Field notes Were field notes made during and/or after the interview or focus group? Page 7
21. Duration What was the duration of the inter views or focus group? Page 7
22. Data saturation Was data saturation discussed? Page 7
23. Transcripts returned Were transcripts returned to participants for comment and/or correction? Page 7
Domain 3: analysis and findings
Data analysis
24. Number of data coders How many data coders coded the data? Pages 8
25. Description of the coding tree Did authors provide a description of the coding tree? Appendix 3
26. Derivation of themes Were themes identified in advance or derived from the data? Page 8
27. Software What software, if applicable, was used to manage the data? Page 8
28. Participant checking Did participants provide feedback on the findings? Page 8
Reporting
29. Quotations presented Were participant quotations presented to illustrate the themes/findings? Was each
quotation identified? eg participant number
*
30. Data and findings consistent Was there consistency between the data presented and the findings? *
31. Clarity of major themes Were major themes clearly presented in the findings? *
32. Clarity of minor themes Is there a description of diverse cases or discussion of minor themes? *
* These items are not applicable, as this is not the study reporting findings from the process evaluation.
APPENDIX 1 (Continued)
APPENDIX 2
TOPIC GUIDE FOR QUALITATIVE INTERVIEWS
NB - the following questions are suggestions and prompts - some
answers may be anticipated earlier in the discussion and others turn
out to be not relevant. The interviewee may also raise additional
topics and issues which they feel are particularly relevant and these
should be followed up in the discussion.
Pre-interview
Researcher introduces himself and engages in small talk to break
the ice with participant (eg give thanks for being invited over,
gives compliments about the home, and asks how the person is
doing on the day).
Researcher explains his professional role and the purpose of the
visit
Researcher goes through the Information Sheet with the partici-
pant. The following will be clearly explained:
1 The interview will be audio-recorded to have an accurate re-
cord of what was said
2 Anything mentioned during the interview is confidential and
no one except members of the PrAISED research team will
know what was said
3 In using any information in a report, the participant's anonym-
ity will be maintained
4 Participation is totally voluntary
5 The participant can withdraw at any time and the research
team can use the information collected thus far, unless the
participant specifically withdraws consent for this.
• Researcher asks if participant has any concerns/questions/
doubts.
• Researcher seeks informed consent
• Researcher asks participant if they are comfortable being inter-
viewed alone or they prefer the presence of a carer during the
process
Interview
General questions
1. Do you feel that being involved in the study has been beneficial?
2. If so, what are the positive results of the activities?
3. Have you experienced any negative effects of the activities?
4. Do you think the programme has enabled you to enjoy more your
daily activities?
5. I would like to start by asking your views around exercise…
Personal beliefs
How important do you think being active is to help people stay
healthy?
How important do you think being active is to help people stay
independent?
16 
|
   DI LORITO eT aL.
Motivation
Why did you decide to take part in the programme?
Were you encouraged by anyone to take part or was it your own
choice?
What helps you keep going with the programme?
On a scale from 1 to 10, how much do you feel you want to con-
tinue with the Activities, once the programme has finished?
Autonomy and control
Is it important for you to decide what you do or do you prefer to
leave it to others?
(If yes to previous question), how much have you been able to
make those decisions?
How could we make you feel more involved?
Intervention characteristics
Does the programme of physical activities suit your needs and
preferences?
What part of the programme of physical activities do you like the
most?
What part do you like the least and how could this be improved?
Self-efficacy and emotional support
• Do you feel you are able to do the activities as well as you would
expect?
Do you have any concerns or anxiety about taking part in the pro-
gramme/doing the activities?
• Did you receive encouragement and support from your thera-
pist(s) and carer(s)?
Is there anything that would help you feel more confident to do
the activities?
Support (Practical)
Do the therapists give you practical support? For example, do
they show you how to do the activities, when to do them and
where to do them?
Does your (carer role) give you practical support? For example,
does he/she remind you how to do the activities, when to do them
and where to do them?
What could be done to better support you?
Independence
How has the study programme affected you? (eg on your health
and activity)
Has it given you greater independence?
Have you noticed a change in your quality of life?
Are there any activities you would like to be able to do that are not
part of the programme?
Expectations
Have you any personal goals you would like to achieve from the
study?
If yes, what goals are you looking to gain?
Do you think you can achieve these goals and do you need sup-
port to do this?
FINAL REMARKS
Any final thoughts and feedback on the programme?
Would you be happy to meet up again in 3 months’ time to see
how you are doing?
APPENDIX 3
FINAL VERSION OF CODEBOOK
Theme Operational definition
Characteristics of
the person with
dementia
Characteristics of the person affecting
behaviour change, which include
personality, temperament, and identity
Support Practical and emotional support from others
(eg carer, therapist, society) which affects
behaviour change
Expectations/goals Expectations/goals around the behaviour,
including benefits, barriers, and facilitators
Carer(s) Any aspect, behaviour and attitude of the
carer, which mediates behaviour change
and maintenance
Progress Perceived or actual improvement in the
person's physical or mental health,
following the behaviour
Social opportunity Social contacts and networking
opportunities (or lack thereof) granted
through engaging in the behaviour
Self-efficacy Confidence in one's ability to execute a given
behaviour, including (perceived) physical,
cognitive ability, and competence
Capability One's actual ability to perform a behaviour
through essential skills, including (actual)
physical, chronic conditions, cognitive
ability, competence psychological/personal
and social capability
Activity/intervention
characteristics
Characteristics of the activity or intervention
which influence participants’ engagement
in it. They include how much the participant
felt they are tailored to their needs, goal,
preferences, and aspirations, how helpful,
enjoyable, and challenging they are and how
they fit into their routine
Autonomy/control Being causal agents of one's behaviour
Physical
infrastructure
Environment and its characteristics, where
the behaviour change occurs
Personal histor y Personal histor y of a person, which affects
present behaviour change
Information/
knowledge
Information and knowledge that the person
needs to change their behaviour
Professional Any aspect, behaviour, and attitude of the
professional, which mediates behaviour
change and maintenance
Personal beliefs The self-regulated mechanisms that the person
uses in relation to initiation, adherence, and
withdrawal from behaviour change
... Intellectual stimulation Engagement in research was characterized as an interesting and stimulating activity [19,25,34,35,37,42,43,52,55,57]. Two factors were described as contributing to these qualities: the challenges encountered [23,34,35,51,52] and the opportunity to learn [19, 21-27, 29, 31-35, 37-39, 41-44, 46-53, 55, 57-59]. ...
... "It gave me further insight into others' lived experiences, enabling me to prepare for a future, which could see me on a parallel journey. " (PP) [25] Impact of patient-partners A desirable aspect of patientpartners' experience was "feeling useful" [37]. Concretely, this was associated with their perceived impact on research projects. ...
... Concretely, this was associated with their perceived impact on research projects. In most articles, patient-partners felt that their contributions had had an impact [19-22, 24, 25, 28, 30-34, 37, 38, 41, 43, 44, 46-48, 51, 52, 54, 57, 59], but in others, they felt that they did not significantly influence research [25,30,31,37,39,44,52,54,56]. The latter situation was often linked to dismissive or closed-minded behaviors of professional researchers [25,31,52,54,56], which are discussed at greater length in team dynamics. ...
Article
Full-text available
Plain English summary Patient engagement is the practice of involving patients as partners in research teams. Through these partnerships, patients become co-researchers, which promotes patient-centered research. In recent years, this practice has quickly gained popularity and is now encouraged by scientific funding bodies. This financial incentive to engage patients helps to promote the practice but can lead to tokenistic partnerships. Therefore, it is important to understand how patient-partners experience engagement in research. This systematic review aimed to describe the experience of patient-partners in research by synthesizing existing studies on the subject. 41 relevant studies were found, which described seven general themes in patient-partners’ experience. These themes were “motivations to engage in research”, “activities in patient engagement”, “structure”, “competence”, “team dynamics”, “impacts on broader life”, and “illness”. Within these themes, many positive experiences were described, such as the stimulating intellectual challenges of research, or the pride of helping others. Negative experiences were also identified, such as when patient-partners felt inadequately prepared for research activities, or when hierarchies of powers were formed. These findings will allow future research teams to improve patient engagement and will hopefully lead to better experiences for patient-partners.
... The NIHR UK Public Involvement Standards encourages researchers to reflect on the PPI they undertake though no guidance is given regarding how. 16 Previous reports of reflections of PPI have adopted 'critical reflection' techniques using written and annotated diaries employed in different degrees by various members of the research team, including: researchers 26 only; researchers and public contributors reflecting separately 27 and, collective reflections of the entire team. 28 Techniques drawing on 'models' of reflection have also been applied to learning from PPI activities. ...
... The Standards explicitly encourage 'reflection and learning, including where lessons have been learned…'. However, no guidance or advice is offered on how researchers or public contributors undertake their reflections.Some authors have reflected on PPI utilizing diary techniques,[26][27][28] or personal written reflections 41 while others have used interviews and workshops.42 One of the few studies to have utilized an existing model to reflect on PPI activities adopted Marks-Maran and Rose's 'Reflection Cycle', which contains four components: (i) the incident (ii) reflective observation (iii) related theory and (iv) future action,30 and closely aligns with Kolb's reflective cycle. ...
Article
Full-text available
Introduction People experiencing homelessness (PEH) have poorer health than housed people but face barriers accessing care and being involved in research. As an often-ignored group, their contribution to help shape research that is for and about them is essential, as it can strengthen the research proposal, in turn facilitating research and outcomes that are relevant to this vulnerable group. Methods Six people with experience of homelessness attended a PPI consultation aided by Pathway, a UK homeless peer advocacy charity, which coordinates an ‘Experts by Experience’ group. We present reflections on conducting PPI with PEH that informed the development of a physiotherapy research proposal. Kolb's Experiential Learning Cycle guided reflections across four stages: (1) describing the PPI experience; (2) reviewing and reflecting on the PPI experience; (3) learning from the PPI experience; and (4) planning and trying out learning. Results Reflections highlighted the importance of: working closely with an advocacy organisation and leader to reach under-served people; the diversity of experiences; using familiar venues, contingency and budget planning; flexibility and ‘allowing time; talking less; listening more’; planning for early and ongoing PPI, and the potential of mobile ‘one-off’ PPI outreach models to reach vulnerable groups. Conclusion Kolb's Experiential Learning Cycle aided team reflection on feedback from PEH, which helped refine and strengthen a physiotherapy research proposal. The project was unfunded. However, a reflective model helped maximize learning and impact including for future PPI and research. The novel application of Kolb's Experiential Learning Cycle provided structure, facilitated reflection and enhanced individual and collective learning and may benefit capturing learning from PPI with other vulnerable populations. Patient or Public Contribution We highlight how a PPI consultation with people with experience of homelessness helped shape a funding proposal. Additionally, the reflections of the experts by experience team leader are included.
... 10 Coresearch involving family members is now increasingly well established. 11 Despite people living with dementia having published guidance for researchers hoping to involve them in research as long ago as 2014, 12 however, coresearch with people living with dementia is still comparatively rare. 13,14 In one recent study, for example, the three 'people affected by dementia' in a PPIE group were all current or former caregivers. ...
... 15 While it is less challenging to recruit family members 16 research findings indicate that people with dementia often have different views and priorities from those expressed by their relatives. [17][18][19] In recent years, direct involvement of people living with earlystage dementia in research processes such as data analysis workshops 11 and coauthored accounts of the research process 20 have become more frequent, showing that it is possible to hear the voices of people who are actually living with the condition being researched. This is not just a matter of inclusive principle, however, since without the perspectives of those living with the condition, research lacks validity and important insights may be missed. ...
Article
Background: The growing literature on Patient and Public Involvement and Engagement (PPIE) and dementia identifies specific problems related to the influence that involvement has on research outcomes, over-reliance on family members as proxies and lack of representation of seldom-heard groups. Adaptations to the PPIE process are therefore needed to make possible the involvement of a broader spectrum of people living with dementia. Objective: This study aimed to adapt the PPIE process to make participation in cocreation by people living with dementia accessible and meaningful across a spectrum of cognitive abilities. Design: Narrative elicitation, informal conversation and observation were used to cocreate three vignettes based on PPIE group members' personal experiences of dementia services. Each vignette was produced in both narrative and graphic formats. Participants: Nine people living with dementia and five family members participated in this study. Results: Using enhanced methods and outreach, it was possible to adapt the PPIE process so that not only family members and people with milder cognitive difficulties could participate, but also those with more pronounced cognitive problems whose voices are less often heard. Conclusions: Making creative adaptations is vital in PPIE involving people living with dementia if we wish to develop inclusive forms of PPIE practice. This may, however, raise new ethical issues, which are briefly discussed. Patient or public contribution: People with dementia and their families were involved in the design and conduct of the study, in the interpretation of data and in the preparation of the manuscript.
... In previous work, a public-private partnership, PAR-ADIGM, [21] developed a set of criteria that reflects the needs, expectations and preferences of all relevant stakeholders for effective PE in medicines development where PE is suboptimal at several key stages and involved patient populations. These are as follows; i) research priority setting (RPS)-providing opinion or evidence and/or being part of a group that decides what is important to research, ii) clinical trial design (CTD)-designing protocols, discussing patient burden, discussing patient-related outcomes, iii) early dialogues with regulators and HTA bodies (ED)-early discussions between industry, HTA bodies and regulators (and in some contexts with payers) regarding developmental plans for a medicinal product and to ensure they meet the requirements and, iv) potentially vulnerable patients-in the case of PARADIGM these included (but are not limited to) people affected by dementia [22][23][24], and young people. ...
... This demonstrates that already much consideration is in place to a broad range of relevant PE criteria but that inclusion and the provision of adequate support require special attention and additional efforts to further meaningful PE. Disease and population specific umbrella organisations [36][37][38][39], address some of these pressing issues around the inclusion of vulnerable populations [22,23] through advocacy, training/provision of information and support and tool development. Yet much more is still needed across the board. ...
Article
Full-text available
Background The PARADIGM consortium aimed to make patient engagement in the development and lifecycle management of medicines easier and more effective for all, with the development of new tools that fulfil robustly defined gaps where engagement is suboptimal. Aims To generate an inventory of gaps in patient engagement practices and process from existing global examples. Methods A large set of criteria for effective patient engagement previously defined via a multi-stakeholder Delphi method, were mapped under fourteen overarching themes. A gap analysis was then performed by twenty-seven reviewers against the resulting forty-six mapped criteria, on a sample of seventy initiatives from global databases. Results An inventory of gaps was identified including contextual information as to why the gaps exist. Our work identified general patterns where patient engagement was suboptimal—defined as; fragmented reporting and dissemination of patient engagement activities, and the fundamental principles defined in frameworks or guidance being poorly adhered to in actual practice. Specific gaps were identified for sixteen criteria. Additionally, it was also common to observe primary aspects of a process were addressed for a given criteria (i.e. training for roles and responsibilities) but a secondary context element was lacking (i.e. making training material accessible/understandable/meaningful to all participants). Conclusion The results show that the evolution towards meaningful and systematic patient engagement is occurring, yet more importantly they provide clear directional insights to help enhance collaborative practices and co-design solutions. This targeted impact to catalyse a needs-oriented health system that integrates patient engagement at its core is essential.
... Caregivers can sometimes be 'invisible patients,' meaning their health and wellness is overlooked by providers, as the focus is on the patient. (13,34) Caregiving spouses are at a higher risk of declining health because of deprioritizing self-care to be able to support their spouse, (12) meaning it is critical that professionals need actively to assess and evaluate the risk for health decline in the caregiver. (4) ...
Article
Full-text available
Background: An ageing population corresponds with a need for informal caregivers. Caregiving burden is the most compelling problem affecting caregivers of older adults. Previous research efforts have explored predictors of caregiving satisfaction and interventions for caregiving support. Our study aimed to set priorities for the future development of interventions for caregivers in Saskatchewan. Our objective was to engage caregivers in setting priorities for accessible interventions and support. The specific research question we sought to answer was: "What do the experiences of caregivers have to offer in setting priorities for caregiver support?" Methods: We conducted an environmental scan of caregiver intervention programming in Canada. We then held two focus groups with caregivers to older adults, defined as 55 years or older for this study. Twenty-three caregivers attended the first focus group, and 10 caregivers participated in the second. We used a qualitative descriptive approach and data were analyzed using thematic analysis. Results: Caregivers of older adults were eager to share barriers and facilitators of their role. Themes derived from data include: 1) lack of access; 2) conflict with self and others; 3) the burden of caregiving; and 4) declining health and wellness. Conclusion: Caregivers may struggle to find resources to support them in their caregiving role. Findings from this study indicate that there is a need for more interventions to support caregivers. Furthermore, our data highlight what outcomes caregivers in Saskatchewan want from those interventions.
... As a collaborative study between academic researchers and consumer representatives, it followed the principles of codesign and coresearch. 21,42,43 The project was cofunded and collaboratively developed; data were coanalysed by researchers and consumer representatives. The study involved the guidance of external advisers from government organization representatives from the NSW Agency of Clinical Innovation and NSW Ministry of Health. ...
Article
Full-text available
Background: Reflections on the response to the COVID-19 pandemic often evoke the concept of 'resilience' to describe the way health systems adjusted and adapted their functions to withstand the disturbance of a crisis, and in some cases, improve and transform in its wake. Drawing from this, this study focuses on the role of consumer representatives in healthcare services in initiating changes to the way they participated in the pandemic response in the state of New South Wales in Australia. Methods: In-depth interviews were conducted with two cohorts of consumer representatives. Cohort A included experienced and self-identified consumer leaders, who worked together in a COVID-19 Consumer Leaders Taskforce; Cohort B included participants outside of this group, and purposively included consumer representatives from rural and regional areas, and culturally and linguistically diverse communities. Results: The pause in consumer engagement to support health service decision-making in responding to the pandemic forced consumer representatives to consider alternative approaches to participate. Some initiated networking with each other, forming new collaborations to produce consumer-led research and guidelines on pandemic-related patient care. Others mobilized support from community and politicians to lobby for specific healthcare issues in their local areas. Conclusion: The response to the COVID-19 pandemic made visible the brittle nature of previous engagement processes of involving consumers in organizational design and governance. However, the momentum for proactive self-organization in an unexpected crisis created space for consumer representatives to reset and reimagine their role as active partners in health services. Their ability to adapt and adjust ways of working are key assets for a resilient health system. Patient or public contribution: This project is a collaborative study between academic researchers and health consumer (patient and public) representatives. It followed the principles of codesign and coresearch, whereby both consumer representatives and academic researchers contributed equally to all stages of the project. The study was cofunded by both academic institutions and consumer representative organizations.
... Perceptions about patient and public involvement in research have been investigated from different perspectives. For example, informal carers have expressed that their involvement in research projects generated personal benefits [9], and health professionals' have described it as an ongoing process in adapting practice and research to facilitate collaboration and the ability to co-create knowledge [10]. When it comes to frail older people, there are few explorations of their experiences of being involved in research processes. ...
Article
Full-text available
Background There is an increased interest to make the voices of frail older people heard in research by actively involving them in research processes. Involving frail older people in research could, however, be perceived as challenging by researchers. To actively involve frail older people in research processes in a meaningful way, the knowledge about their own views on what research is must be widened and deepened. Methods Individual interviews were conducted with 17 frail older men and women with former experience of participation in research studies. Qualitative data were analysed using content analysis. Results Frail older people’s views on what research means are described through the main category; An essentiality beyond one’s own competence, which describes research as a complex process that is important for society but difficult to understand. This is described in the sub-categories; A driving force for societal development, A benefit when based on lived experience, A source of knowledge difficult to access and understand, and A respected job filled with responsibilities. Conclusion Different views on research from the perspective of frail older people show that research is viewed as a complex yet important phenomenon to frail older people. Research was also seen as a natural part in society. Research was viewed as difficult to access and understand. Thus, researchers must train themselves to communicate research findings to the public in an understandable way. To create common understandings through information and education, researchers might be better placed to involve frail older people in a meaningful way and thereby also have the possibility to develop good working practice and relationships with those involved.
... Research institutions and ethics committees should provide guidance and training to support researchers in recognising these differences and in implementing PPI activities appropriately. Moreover, power differentials between researchers and PPI contributors need to be addressed, 21 At an international level and endorsed by the WHO, the International Ethical Guidelines for Health-related Research Involving Humans (Guideline 7: Community Engagement) provide a similarly helpful resource. 15 Although this does not clarify ethical requirements for PPI as explicitly as in the above example, the same message can be inferred: ...
Article
Full-text available
Background Patient and public involvement (PPI) in research is well-established in the UK. However, it can be challenging to introduce PPI to research communities where there is limited prior knowledge, experience or appreciation of PPI. We aimed to explore current PPI practices, experiences and ethical and operational challenges with PPI within our own research community in Austria, to inform strategies for supporting PPI in Austria going forward. Methods We surveyed scientists at 21 research institutes of the Ludwig Boltzmann Gesellschaft (LBG) and representatives of 32 medical and university research ethics committees in Austria using online questionnaires. We analysed quantitative data using descriptive statistics, and we collated textual responses to open questions. We combined survey data with anecdotal evidence from our personal experience to summarise current challenges around implementing PPI in Austria. Results Nineteen scientists from nine research institutes indicated generally positive attitudes towards PPI. However, the majority reported they rarely or never involved patients and members of the public in roles of consultation, collaboration or control in research. Six of eight ethics committees were unfamiliar with PPI. We discern five current challenges to implementing PPI in Austria: lack of knowledge and skills for PPI among scientists, scepticism about the usefulness of PPI, conflation of PPI with qualitative research, uncertainty about ethical requirements for PPI and uncertainty about publishing PPI activities. Discussion We suggest that the provision of guidance about ethical requirements of PPI is a strategic priority. To address this, and following on from a recently introduced PPI training and grant scheme by the LBG, our surveys have initiated a dialogue with ethics committees and have informed the development of a checklist for ethical aspects of PPI. Conclusion Our experiences may provide useful examples to others who seek to introduce or strengthen PPI practices within their own research communities.
Article
Full-text available
Background Engaging users of health research, namely knowledge users, as partners in the research process may to lead to evidence that is more relevant to the users. This may optimize the uptake of evidence in healthcare practice, resulting in improved health outcomes or more efficient healthcare systems. However, barriers to involving knowledge users in the research process exist. Theories, models and frameworks may help guide the process of involving knowledge users and address barriers to engaging with knowledge users in research; however, there is little evidence identifying or describing the theories, models and frameworks of health research partnerships. Objectives Identify and describe theories, models and frameworks of health research partnerships. Report on concepts of knowledge user engagement represented in identified theories, models and frameworks. Methods We conducted a scoping review. Database (MEDLINE, Embase, CINAHL, PCORI) and ancestry and snowball searches were utilized. Included articles were written in English, published between January 2005 and June 2021, specific to health, a research partnership, and referred to a theory, model or framework. No critical appraisal was conducted. We developed a coding framework to extract details related to the publication (e.g. country, year) and theory, model or framework (e.g. intended users, theoretical underpinning, methodology, methods of development, purpose, concepts of knowledge user engagement). One reviewer conducted data extraction. Descriptive statistics and narrative synthesis were utilized to report the results. Results We identified 21 874 articles in screening. Thirty-nine models or frameworks were included in data analysis, but no theory. Two models or frameworks (5%) were underpinned by theory. Literature review was the method ( n = 11, 28%) most frequently used to develop a model or framework. Guiding or managing a partnership was the most frequently reported purpose of the model/framework ( n = 14, 36%). The most represented concept of knowledge user engagement was principles/values ( n = 36, 92%). Conclusions The models and frameworks identified could be utilized by researchers and knowledge users to inform aspects of a health research partnership, such as guidance or implementation of a partnership. Future research evaluating the quality and applicability of the models and frameworks is necessary to help partners decide which model or framework to implement.
Article
People with dementia (PwD) have serious difficulties orienting themselves in a hospital environment. In this qualitative study, we asked PwD and their informal caregivers about requirements for assistive technology when navigating in inpatient care settings. We aimed to provide user-centred recommendations for the development of an in-hospital navigation aid following a value sensitive design approach. We conducted semi-structured interviews with two stakeholder groups as potential future users of in-hospital navigation aids: PwD (n = 10, agemean = 83.9 years, MMSEmean = 21.2) and informal caregivers (n = 10, agemean = 75.9 years). The interviews were evaluated using qualitative content analysis in a multistage process involving six members of a self-help group for relatives of PwD as co-researchers. Independence and relief/respite were the most important values regarding assistive technology for PwD. Informal caregivers attributed greatest importance to safety and relief/respite. The underlying values of these stakeholder groups contribute to recommendations for designing new assistive technologies for patient-centred in-patient care: Assistive technology needs to overcome age- and disease-related limitations, and the resulting individual risks, while providing subsidiary assistance to maintain the desired independence of PwD for as long as possible.
Article
Full-text available
Family caregivers of people with dementia, often called the invisible second patients, are critical to the quality of life of the care recipients. The effects of being a family caregiver, though sometimes positive, are generally negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship. Caregivers vulnerable to adverse effects can be identified, as can factors which ameliorate or exacerbate burden and strain. Psychosocial interventions have been demonstrated to reduce caregiver burden and depression and delay nursing home admission. Comprehensive management of the patient with dementia includes building a partnership between health professionals and family caregivers, referral to Alzheimer's Associations, and psychosocial interventions where indicated.
Article
Full-text available
Background: Evidencing well-planned and implemented patient and public involvement (PPI) in a research project is increasingly required in funding bids and dissemination activities. There is a tacit expectation that involving people with experience of the condition under study will improve the integrity and quality of the research. This expectation remains largely unproblematized and unchallenged. Objective: To critically evaluate the implementation of PPI activity, including co-research in a programme of research exploring ways to enhance the independence of people with dementia. Design: Using critical cases, we make visible and explicate theoretical and moral challenges of PPI. Results: Case 1 explores the challenges of undertaking multiple PPI roles in the same study making explicit different responsibilities of being a co-applicant, PPI advisory member and a co-researcher. Case 2 explores tensions which arose when working with carer co-researchers during data collection; here the co-researcher's wish to offer support and advice to research participants, a moral imperative, was in conflict with assumptions about the role of the objective interviewer. Case 3 defines and examines co-research data coding and interpretation activities undertaken with people with dementia, reporting the theoretical outputs of the activity and questioning whether this was co-researcher analysis or PPI validation. Conclusion: Patient and public involvement activity can empower individual PPI volunteers and improve relevance and quality of research but it is a complex activity which is socially constructed in flexible ways with variable outcomes. It cannot be assumed to be simple or universal panacea for increasing the relevance and accessibility of research to the public.
Article
Full-text available
Objective: Oligomeric forms of amyloid β-protein (oAβ) are believed to be principally responsible for neurotoxicity in Alzheimer's disease, but it is not known whether anti-Aβ antibodies are capable of lowering oAβ levels in humans. Methods: We developed an ultrasensitive immunoassay and used it to measure oAβ in CSF from 104 AD subjects participating in the ABBY and BLAZE Phase 2 trials of the anti-Aβ antibody crenezumab. Patients received subcutaneous (SC) crenezumab (300mg) or placebo every two weeks or else intravenous (IV) crenezumab (15mg/kg) or placebo every four weeks for 68 weeks. Ninety-eight of the 104 patients had measurable baseline oAβ levels, and these were compared to levels at week 69 in placebo (N=28), SC (N=35) and IV (N=35) treated patients. Results: Among those receiving crenezumab, 89% of SC and 86% of IV patients had lower levels of oAβ at week 69 versus baseline. The difference in the proportion of patients with decreasing levels was significant for both treatment arms: p=0.0035 for SC and p=0.01 for IV crenezumab vs. placebo. The median percentage change was -48% in the SC arm and -43% in the IV arm. No systematic change was observed in the placebo group, with a median change of -13% and equivalent portions with negative and positive change. Interpretation: Crenezumab lowered CSF oAβ levels in the large majority of treated patients tested. These results support engagement of the principal pathobiological target in AD and identify CSF oAβ as a novel pharmacodynamic biomarker for use in trials of anti-Aβ agents. This article is protected by copyright. All rights reserved.
Article
Introduction. Promoting Activity, Independence and Stability in Early Dementia and Mild Cognitive Impairment (PrAISED 2) is a randomised controlled trial to test the effectiveness of an intervention to promote activity and independence amongst people with mild cognitive impairment and early dementia. To identify 'How the intervention works', we will undertake a process evaluation of PrAISED 2. This protocol outlines the rationale, aims, objectives and methods of the process evaluation. Methods. The process evaluation will use a mixed-methods design and comprise two studies: An implementation study, examining the process through which PrAISED 2 is delivered and a study on the mechanisms of impact and context, focussing on the mediating mechanisms that contribute to study outcomes. Integration of separate analysis of quantitative and qualitative data will provide a holistic view of 'how PrAISED 2 works. Conclusion. Results from this process evaluation will further the understanding of the factors that can impinge on the success of complex interventions. This will represent invaluable information for researchers undertaking further research around behaviour change among people with cognitive impairment and dementia.
Article
Background Despite robust evidence on its effectiveness, current approaches that aspire to person-centred care (PCC) frequently locate people with dementia as passive recipients rather than as active agents in the care process. We define active involvement in care as ‘co-production’. In order to investigate co-production, we set out to review the evidence concerning personhood and dignity in dementia care. Method We adopted a meta-ethnographic approach to synthesise the predominantly qualitative literature on personhood and dignity in dementia care using EMBASE, PsycINFO, and ASSIA databases. We also included relevant policy documents. Members of Patient and Public Involvement (PPI) group were consulted throughout. Results A total of 14 empirical studies were subjected to content analysis. Three themes were identified: dignity and personhood, coping with dementia, and barriers to dignity in care. The findings suggest that positive strategies and coping mechanisms are associated with superior outcomes in relation to: sense of self, dignity and quality of care. The 22 policy documents yielded six themes pertaining to co-production: the part played by the person with dementia, family, environment, behaviour, governance and law, and health care partnership. Conclusion Personhood in dementia care is enhanced through co-production, by actively participating in social, civic and political life. This is promoted through behavioural changes at the micro and macro levels of society, including providers of care being trained in co-producing care and policy makers creating opportunities with, rather than for people with dementia.
Article
This article describes the work of the 'Action on Living Well: Asking You' group - an involvement group of people with dementia and carers attached to the IDEAL research study. The article describes the work of the group, the methods that have helped them to stay involved and people's perspectives on their experiences of being involved and the impact it has had, for themselves and others. The article has been written following a reflective piece of work with the 'Action on Living Well: Asking You' group to review and remember the work of the past four years. An accompanying film brings to life the work and activities of the group, available at www.idealproject.org.uk/mclass/.
Article
Preclinical science research focuses on the study of physiological systems regulating body functions, and how they are dysregulated in disease, in a non-human setting. For example, cells in a dish, computer simulations or animals. Scientific procedures traditionally involve a specialist scientist developing a hypothesis and subsequently testing it using an experimental set-up. The results are then disseminated to the wider scientific community, following peer review and only at the last stage the news will reach the general, lay public. In the last few years, some research funding institutions have promoted a different model, with the direct involvement of members of the public in the research co-creation, from the hypothesis development, to the grant revision, project monitoring and results communication. We personally experienced this model and brought it to a further level by producing a movie. Animal research is a very controversial topic as, while still being necessary for the investigation of body functions, it brings about issues related to the ethics, the regulation and the practical execution of experimental procedures on animals. Here we discuss the different stages of the ideation, production and outcomes of the movie 'Of Mice and Dementia', a filmed conversation on animal experimentation in dementia research. The conversation was between scientists and lay people with a direct experience of dementia.
Article
Patient 'engagement' or 'involvement' in health research broadly refers to including people with lived experience (i.e. individuals with personal experience of a health issue and their friends, family and caregivers or carers) in the research process. Although previous reviews have systematically summarized approaches to patient engagement in research, it is unclear whether and how engagement activities have been implemented or adapted for research related to dementia. We conducted a scoping review to describe the extent and nature of patient engagement approaches that have been used to involve persons with dementia and their care partners in research. We then summarized the reported barriers, enablers, and impacts of this engagement. Fifty-four research articles were included in the review and almost all were published after 2010. Persons with dementia and their care partners have been engaged in diverse phases of the research process. The majority of engagement involved both persons with dementia and care partners. Barriers and enablers to engagement included those identified for general patient engagement in research, but some more specific to engaging persons with dementia and their care partners were also reported. Very few studies assessed the impact of patient engagement. While the arguments for patient engagement in research are compelling, research to demonstrate the impact - on the research process and outcomes as well as on persons with dementia, care partners, researchers, research institutions and society - is still needed.