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WilleC, etal. BMJ Open 2022;12:e061736. doi:10.1136/bmjopen-2022-061736
Open access
Supporting direct support professionals
in enabling people with intellectual
disabilities to engage in meaningful
activities: protocol for the Meaningful
Activities 4 All (MA4A) study based on
the human- centred design process
Christophe Wille ,1,2 Ine De Clerck,2 Geert Van Hove,3 Jos Van Loon,3
Dominique Van de Velde ,1,3 Patricia De Vriendt 2,4
To cite: WilleC, De ClerckI,
Van HoveG, etal. Supporting
direct support professionals
in enabling people with
intellectual disabilities to
engage in meaningful activities:
protocol for the Meaningful
Activities 4 All (MA4A) study
based on the human- centred
design process. BMJ Open
2022;12:e061736. doi:10.1136/
bmjopen-2022-061736
►Prepublication history and
additional supplemental material
for this paper are available
online. To view these les,
please visit the journal online
(http://dx.doi.org/10.1136/
bmjopen-2022-061736).
Received 04 February 2022
Accepted 21 July 2022
For numbered afliations see
end of article.
Correspondence to
Mr Christophe Wille;
chriwill. Wille@ UGent. be
Protocol
© Author(s) (or their
employer(s)) 2022. Re- use
permitted under CC BY- NC. No
commercial re- use. See rights
and permissions. Published by
BMJ.
ABSTRACT
Introduction Meaningful activities (MA) have a positive
impact on identity, well- being, participation and inclusion.
Although people with intellectual disabilities (PID) depend
on their direct support professionals (DSPs) to engage in
MA, the DSPs need support which could enable them to
offer more qualitative care and support.
Methods and analysis To identify DSPs’ needs, and to
develop a tool/service, an innovative and iterative approach
is developed, based on the human- centred design (HCD)
process, combined with traditional qualitative and quantitative
research methods. In the inspiration phase (needs analysis),
in- depth interviews will be conducted in two day care centres
in Flanders using an interpretative phenomenological analyses,
one with a supply- driven approach and the other with a
demand- driven approach, followed by a survey sent to all
Flemish day care centres. In the ideation phase, the insights of
phase 1 will guide a cocreation process (comprising a World
Cafe, brainstorm and prototype sessions) with the DSPs, PID
and other stakeholders. In the implementation phase, the
solution will be tested in the two day care centres from phase
1 by means of living labs and a realist evaluation. By adopting
this protocol, the functionality, quality, usability and acceptance
are expected to increase. This protocol adopts all phases of
the HCD process and shows the complementarity of HCD with
traditional research methods. PID and the DSPs will benet
as the end result is truly grounded in their specic needs and
wishes.
Ethics and dissemination Ethical approval by the Ethics
Committee of the University Hospital Ghent, Belgium (reference
numbers: B670202042983 and PA2021- 091). All participants
will sign informed consent forms. Results of this study will be
submitted for publication in relevant peer- reviewed journals
and will be presented at relevant conferences.
INTRODUCTION
It is generally assumed that the prevalence
of people with intellectual disabilities (PID)
worldwide varies from 1% to 3% based on
income, age and origin, with the highest
rates to be found in low- income and middle-
income countries.1 The most widely adopted
definition of ID is taken from the American
Association on Intellectual and Develop-
mental Disabilities (AAIDD)2 3: ‘Intellectual
disability is a disability characterised by signifi-
cant limitations in both intellectual functioning
and in adaptive behaviour, which covers many
everyday social and practical skills. This disability
originates before the age of 18’.4 The AAIDD
emphasises the multidimensionality of ID,3–5
enabling direct support professionals (DSPs)
to get a more comprehensive understanding
of ID, and allowing them to establish a
more purposeful approach towards PID.2
DSPs are called many names such as human
service workers, disability support workers
and personal care aids.6 DSPs are a group
of paid workers who provide care for PID.7
DSPs work in a variety of settings and provide
a wide range of complex services which
STRENGTHS AND LIMITATIONS OF THIS STUDY
⇒This Meaningful Activities 4 All study protocol uses a
complete human- centred design process and com-
bines it with the strengths of traditional research
methods.
⇒The end users will be involved in the whole project
from the outset.
⇒Cocreation with people with intellectual disabilities
is challenging and required accessible cocreation
tools and specic support.
⇒Sample sizes are difcult to determine as there are
no exact numbers of direct support professionals
working in day care facilities.
⇒Prolonged engagement in practice through living
labs facilitates further development and renement.
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include helping people with activities of daily living and
promoting physical and emotional well- being. ‘DSPs are
the “backbone” of long- term services and supports’6 and
have an important role in health promotion and influ-
encing healthy behaviour.7
PID have been excluded from society for a long time
due to their limited abilities in both their intellectual
capacities and adaptive behaviour.8 Even though PID
living in communities are associated with having higher
levels of quality of life (QOL),9 they still need continuous
additional support to participate in society as equal citi-
zens.3 10 Therefore, PID when not adequately supported
are at risk of being excluded from society.8 In addition,
life expectancy of PID increased significantly over the
last decades.11 12 Older PID represent nearly half of all
PID.12 Consequently, nearly half of the people in day care
facilities are of older age12 and have a life expectancy
close to that of people without disabilities. Most PID lack
age- specific support and when they age this can poten-
tially lead to inappropriate placement and loss of social
networks.11 Older PID are a profoundly diverse group
with different and complex needs,12 13 which requires
specific assessment and person- centred planning and
support.12 Although specific risk factors such as different
life course trajectories, older prejudices, networks falling
apart and age- related health problems exist, older PID
can be supported in an active way, with specific interven-
tions adapted to their individual needs.11
One of the most important and influential conven-
tions that address inequality is the ‘United Nations Conven-
tion on the Rights of Persons with Disabilities’.8 By signing
the convention, all member states agree to implement
the convention in their national policy on ID.8 14 Since
the convention was adopted, 164 countries signed the
convention15 and 94 ratified both the convention and
the optional protocol.16 The Flemish Agency for Persons
with Disabilities (VAPH) has developed a policy in accor-
dance with the United Nations (UN) Convention and the
current vision on ID.17 The ‘quality of life supports model
paradigm’,18 19 comprising four core values (equity,
inclusion, self- determination and empowerment), is at
the heart of the policy. In Flanders, the Flemish part of
Belgium with an autonomous government (at the end
of 2018), 7100 young people received professional help
and 24 677 adults with disabilities received a personal
budget.20 21 Around 15.000 people with a disability are
still on a waiting list for care and support.
Despite the fact that Article 27 of the UN Convention
states that all people with disabilities have the right to
work and employment, the majority of PID do not work
in the regular labour market due to their complex needs
associated with their disability. Day care is an alternative
for those people. The VAPH defines day care as ‘assis-
tance and permanence in group during the day, for a number
of days per week or a whole week’.22 The focus within those
centres is on enabling PID to participate in activities. This
is important since activities are assumed to be essential
for all humans to achieve goals in life and to influence
their state of health.23–25 One important prerequisite
for having an impact on the state of one’s health is the
fact that these activities should be meaningful for the
individual.26 27 Meaningful activities (MA) are activities
that an individual consciously engages in to achieve a
personal sense of meaning and fulfilment28 29 by means
of choice, control and belonging.24 MAs are associated
with the personal interests of people and are enjoyable
by nature.28 30 MAs occur in a specific social, family and
cultural context and define one as a person and provide
us with a sense of identity.28 People who experience
meaning in their activities have a greater sense of well-
being.24 Engagement in MA of older people specifically
enables them to feel more productive and connected
with society31 and is also crucial to improve the QOL of
PID.32 33 By participating in MA, they gain a better grip
on their own lives, become more independent and have
more opportunities to participate in society. If not, PID
are experiencing deprivation, which is detrimental for
their health and well- being.34 Although every person has
the right to participate in MA,32–34 this is not always the
case for PID.35
In recent years the personal goals, needs and wishes of
PID became increasingly important in enabling MA.12 35 36
It is globally accepted that in a person- centred support
system, there should be an alignment between the wishes
and goals of a person, his or her support needs, the
support given and his or her QOL outcome,36 yet not all
PID are able to explicitly communicate their goals.13 35 Too
often PID are dependent on DSPs’ abilities to commu-
nicate at their level and understand them. Therefore,
DSPs need to depend on their own experience and those
of others (family or other proxies) to understand what
is meaningful for the PID in order to tailor and adapt
activities to each individual with ID.12 35 The quality of
the communication between DSPs and PID is associated
with engagement of PID in MA. More specifically, good
communication is associated with higher levels of engage-
ment.37 Unfortunately, the bigger the organisation, the
lower the commitment in MA.33
When asked, PID suggest that quality of care is related
to their immediate situation in receiving care and services,
such as the relationship with the DSPs. In particular,
the consistent fulfilment of promises and commitments
made by the DSPs. In addition, PID value ambiance
and cosiness, tailor- made care and being taken seriously
regarding their wishes and competencies.38 Furthermore,
PID experience activities more meaningfully when they
are treated respectfully and as adults.34 In essence, the
relationship between the PID and the DSPs is funda-
mental for providing a high quality of care, especially in
long- term care.39
In recent years, support for PID has improved signifi-
cantly. Despite this favourable evolution, many PID still
remain segregated from society and have fewer oppor-
tunities for personal development, participation and
inclusion.40 In addition, it is imperative to understand
that PID depend on the quality of support they receive
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from DSPs.33 More specifically, the higher the quality of
the DSP, the more personal outcomes for PID.41 Sadly,
PID remain underengaged in MA and research on the
topic is scarce. More research is needed in order to estab-
lish and understand factors that enable or hinder MA.34
DSPs seems to be left to fend for themselves too often,
which results in poor quality of support.33 Furthermore,
a sizeable portion of DSPs are not qualified adequately
to provide the required effective support.41 In addi-
tion, DSPs are confronted with a great heterogeneity of
ID and various roles, duties and tasks that are typically
determined by the centre in which they are employed.
Depending on their educational background, it is diffi-
cult for DSPs to acquire all skills, knowledge and abili-
ties that are required to effectively perform their roles.42
In addition, there is a disconnection between evidence-
based practice and the competencies of DSPs.41 However,
it is important to underline that working with PID is very
challenging for all DSPs due to the complex nature of
ID,43 44 resulting in DSPs being exhausted and not being
able to meet the demands related to their job, and even
resulting in burnout.45
The overall objective of this study is to develop a more
qualitative support for PID, enabling them to participate
more in MA and by extension in society. The aforemen-
tioned results in the following research question for this
study: ‘What do DSPs, working in day- care centres, need
to enable PID to engage more in meaningful activities?’
The desired outcome for this study is a tool or service that
is tailored to the specific needs and wishes of the DSPs. In
doing so, DSPs will be able to meet the complex demands,
inherent to working with PID. In order to develop such
a tool or service, a specific cocreative and innovative
research method is needed.
METHODS AND ANALYSIS
Research constantly produces new insights from which
products or services emerge. It is generally assumed that
only half of these are implemented in practice and that
it takes 17 years on average before their use becomes
routine.46 47 It can be concluded that there is still a
research- to- practice gap.46 48 To overcome that problem,
new approaches to develop complex interventions are
needed and should have key principles such as being
dynamic, iterative, creative, open to change and proac-
tive.48 Therefore, this Meaningful Activities 4 All (MA4A)
study protocol is based on ‘The field guide to human- centered
design (HCD)’ developed by IDEO in 2015. IDEO is a global
design company that has launched products, services and
experiences for the profit sector for decades, focusing
on the human perspective, where needs are assessed,
and solutions are evaluated based on understanding the
needs of customers and getting feedback from them.49
In recent years, IDEO has also focused on the non- profit
sector because it felt the social sector was ripe for inno-
vation and needed an approach that has the potential
to unlock true impact.50 HCD is nowadays increasingly
accepted in the human services sector51–53; however, when
used, it is not used in a standardised way or is reduced to
using some features of HCD.54 55 Furthermore, there is no
consensus definition.56 Therefore, HCD can be labelled
as an ‘umbrella term’55 for all approaches grounded in
the needs of their target population, also called the end
user, while developing products or services.51 56 57 Despite
the fact that HCD is sometimes still reduced to a buzz-
word, there is clear agreement that the ‘human’ part
refers to the participation of stakeholders, and that there
is a real commitment and focus on human value.55 That,
and also the fact that HCD really does focus on equity,
has led to make the HCD process central to this MA4A
protocol. In essence, HCD puts the needs, expectations,
desires and experiences of the end user central54 55 58 and
explicitly searches for the ‘deep story’.49 In addition, it
especially helps in developing a comprehensive under-
standing of the context in which the service or tool will
be implemented, and thus helps in facilitating implemen-
tation.53 By adopting these methods in healthcare, one
clearly steps away from ‘one size fits all- thinking’ which
is reflected in the six principles that characterise HCD55:
(1) the design is explicitly based on the understanding of
the end user; (2) the end user is involved in the complete
process of design and development; (3) the design is
refined by the feedback of the end users; (4) HCD is an
iterative process; (5) the design is an answer to the entire
user experience; and (6) including the context. Under-
standing the HCD process is one thing, living it and being
able to apply it is another. To fully exploit the benefits of
HCD, it is important that researchers embrace the mind-
sets of HCD. Ideally, the design team consists of multi-
disciplinary skills and perspectives. IDEO describes seven
mindsets that a human- centred designer should master:
empathy, optimism, creative self- confidence, making,
embracing ambiguity, keep iterating, and learning from
failure. In addition, it is important one understands and
accepts that HCD is not a linear process. No two processes
are the same; however, each process consists of the same
three phases: inspiration, ideation and implementa-
tion.49–51 Each phase has specific tools that can be used to
better understand the end user.50
HCD should not be seen as a strict alternative to other
approaches but as a complementary strategy that adds
value.49 In this MA4A study protocol, HCD will therefore
be combined with the strengths of several traditional
research methods.
Research team
The HCD research team consists of one lead researcher
(first author), and supported by two senior researchers
(last two authors). The lead researcher can rely on seven
junior researchers per HCD phase to prevent researcher
bias and to enhance credibility.59 60 Depending on the
needs at the time, the research team will be supple-
mented with specific profiles. A statistical expert joins the
research team in phase 1B for advice in the construction
of the survey and analysis of the data. In addition, the
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lead researcher followed an intensive training on HCD
to learn to master the process and apply it in practice. In
phase 2A, the second author participates to facilitate the
ideation phase. The third and fourth authors will actively
participate in the complete process as experts on ID.
End users
In this study, the DSPs are seen as the end users because
PID are dependent on their quality of care and support.
The desired outcome of this study is an effective support
for DSPs in enabling MA for PID. The DSPs in this study
are all working in accredited care facilities in Flanders
(Belgium), more specifically in day care centres. The
profile of DSPs working in day care is very diverse since
the current vacancies do not seek specific education,
but rather people who can identify with the job profile.
People with a degree in occupational therapy, education,
social work and many more can apply for a vacant posi-
tion. Both people who have completed their secondary
education and people with a bachelor’s or master’s degree
are employed in day care centres. In addition to the DSPs
as the end users, the most important stakeholders, the
PID, should not be forgotten in this process. Their voice
counts every step of the way and therefore we include
them in the development process step by step, by means
of a sounding board, a member of the development team
and as the most important partner in the implementation
phase.
Phase 1: inspiration
This first phase, the inspiration phase, consists of two
major parts; phase 1A is a qualitative approach, and phase
1B a quantitative approach. In phase 1A, a wide variety
of insights on enabling MA will be sought. In phase 1B,
these insights will be tested in a larger sample.
Sample
In phase 1A, based on a purposive criteria- based sampling,
a minimum of 12 respondents will be retained and
maximum variation will be strived for. Criteria on which
participants will be selected are (1) working in day care
for PID (2) minimal 70% of the job description is focused
on enabling MA, and (3) minimal experience of 1 year.
No criteria are set based on age and qualification. Final
selection will be made in consultation with the immediate
superior to guarantee the continuity of daytime activi-
ties. Furthermore, extra attention will be paid to recruit
a diverse population; new colleagues, recent graduates,
experienced colleagues and working with different levels
of ID. In phase 1B, the quantitative phase, the same
criteria will be applied but the percentage of job descrip-
tion is reduced from 70% to a minimum of 50% to allow
more DSPs to complete the survey.
Phase 1A
Participatory observations, combined with in- depth inter-
views, will be conducted in two day care centres in Flan-
ders (accredited care providers by the VAPH). A conscious
decision was made to include the two most common forms
of day care centres in Flanders: the so- called ‘traditional
approach’ (more supply driven) with workshops (organ-
isation 2) and the more ‘inclusive approach’ (which is
more demand driven) (organisation 1). In organisation
1, situated in the province of Antwerp, activities can be
observed in the mornings (12 hours in total). In organ-
isation 2, in the province of East Flanders, there are no
restrictions, and the researchers have free access to each
workshop (24 hours in total). The interviews and obser-
vations will be performed by the seven junior researchers,
under supervision of the lead researcher. The qualitative
research protocol, the interview guide and participatory
observation forms are prepared by the lead researcher in
continuous alignment with the two senior researchers.
The topics that will be addressed within the in- depth
interviews are related to how DSPs experience enabling
MA, which fostering or obstructing factors there exist,
and which support needs they have in enabling MA. The
complete interview guide can be consulted in online
supplemental material 1.
The qualitative in- depth interviews and observa-
tions will be analysed in NVivo, using an interpretative
phenomenological analysis (IPA), since this method is
suitable for both qualitative in- depth interviews and for
the analysis of observations of small samples.59 In addi-
tion, IPA is concerned about how individuals experience
phenomena and the psychological interpretation of their
experiences.59 60 Both the junior researchers and the
lead researcher will perform data analysis independently,
in continuous alignment with the senior researchers.
Member check and peer debriefing is scheduled after
data analysis. The final report will be written by the lead
researcher (with feedback from all authors) and will be
used as a basis for the start of the quantitative part of the
inspiration phase (1B).
Phase 1B
Based on the data from the qualitative part of the inspi-
ration phase (1A), a web- based online survey will be
prepared using Qualtrics. The survey will be distributed,
accompanied with a cover letter, to all accredited care
providers specialised in day care (n=260). The survey will
be pilot tested. In total, 24 respondents will fill in the pilot
questionnaire: 8 DSPs working in day care, 8 healthcare
students and 8 laymen. The data analysis will be carried
out via IBM SPSS Statistics V.27 by the lead and junior
researchers, under supervision of the senior researchers,
and with assistance from the statistical expert. Final
report will be written by the lead researcher (again with
feedback from all authors).
Phase 2: ideation
This phase must be as ‘restriction- free’ as possible, mainly
to give a free rein to the creativity needed at this stage.50 By
means of a purposive criterion- based sampling, the devel-
opment team will be composed. Recruitment of the team
will start in the survey (1B). DSPs will be asked whether
they are willing to cooperate in this phase. Specific extra
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profiles will be sought that are assumed to make a unique
contribution to the project. Profiles that depend on the
ideas and concepts that arise in this phase (ie, for the
brainstorm) will be selected that have nothing to do with
healthcare. In doing so, the development team welcomes
people who are unbiased and more likely to come up with
new and innovative ideas.
The ideation phase consists of three major phases. First
(2A), a World Cafe will be organised for a wide variety of
stakeholders (see table 1) as it is a suitable way to enhance
a collaborative dialogue around questions that matter.61 62
It facilitates an open and intimate discussion within a
larger group of people.61 Different topics inherent to the
design challenge will be discussed, guided by the World
Cafe Reference Guide.62 Before the start of the World
Cafe, the insights from the inspiration phase (both 1A
and 1B) are shared with the participants of the World
Cafe (n=24) to make sure they are aware of the needs
and wishes of the end users, a basic premise before the
search for opportunities begins. The major aim of the
World Cafe is to further elaborate on the insights of phase
1, and to tune it to every important stakeholder. In the
second part (2B), a guided brainstorm63 will be held. The
guided brainstorm is structured in time and approach.
It starts with generating ideas, followed by selecting the
best ideas. In the final step, the ideas are translated into a
project sheet. Based on the project sheet from the guided
brainstorm, the third and last part of this phase (2C) starts
and consists of building prototypes in cocreation sessions
with the end users and stakeholders. The prototypes will
be presented very quickly to the end users. This fast way
of asking for feedback is essential and inherent to HCD.
‘You’ll keep iterating, refining, and building until you’re ready
to get your solution out into the world’50 (p 75).
Based on the ideal numbers to really get cocreation
going, to generate as many ideas as possible and to keep
the creative process going, the guidelines of each specific
method were consulted. The World Cafe will have four,
no more than five, participants per table.62 64 The brain-
storm preferably is organised with 12 participants65 and
the cocreation sessions should have a minimum of six
participants.57
Once the team is assembled, an inspiring and
nurturing environment will be sought, an environment
that welcomes and stimulates creativity. For this study, the
entire top floor of the building of the Artevelde Univer-
sity of Applied Sciences will be used for that purpose. In
addition, the FabLab (a makers lab), which is also situated
in that building, can be used at all times. The complete
phase 2 will be facilitated by lead and junior researchers.
More specifically in the World Cafe, the lead researcher
will be the ‘cafe host’ and the junior researchers will be
the ‘table hosts’. The lead researcher will facilitate both
the brainstorm and the cocreation sessions. Also, the final
Table 1 Participants in phase 2
2A
World Cafe
2B
Guided brainstorm
2C
Cocreation
Description and criteria Description and criteria Description and criteria
DSPs (n=8)
►Working in day care for adults with
ID.
►Minimal 50% of the job description
is focused on enabling meaningful
activities.
►Experience >2 years.
DSPs (n=2)
►Working in day care for adults with ID.
►Minimal 50% of the job description
is focused on enabling meaningful
activities.
►Experience >2 years.
DSPs (n=2)
►Working in day care for adults with ID.
►Minimal 50% of the job description
is focused on enabling meaningful
activities.
►Experience >2 years.
Supervisor of DSPs (n=4)
►Supervising human service worker
working in day care.
►Experience >2 years.
Supervisor of DSPs (n=2)
►Supervising human service worker
working in day care.
►Experience >2 years.
Supervisor of DSPs (n=2)
►Supervising human service worker
working in day care.
►Experience >2 years.
Expert in ID and day care (n=4)
►Expert in ID policy.
►Expert in day care.
Expert in ID and day care (n=2)
►Expert in ID policy.
►Expert in day care.
Expert in ID and day care (n=2)
►Expert in ID policy.
►Expert in day care.
PID (n=4)
►Full- time day care attendee.
►Experience >1 year.
PID (n=2)
►Full- time day care attendee.
►Experience >1 year.
Expert in meaningful activities (n=4) Expert in meaningful activities (n=2) Expert in meaningful activities (n=2)
Person who has no connection with day
care or ID (n=2)
►Afnity with creative thinking and
brainstorms.
Total n=24 Total n=12 Total n=8
DSP, direct support professional; ID, intellectual disability; PID, people with intellectual disabilities.
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report will be written by the lead researcher (with feed-
back from all authors).
Phase 3: implementation
Based on the insights of phases 1 and 2, in this final
phase, the prototype comes to life and will be taken to
the end user in a real- world context.49 50 66 In the form of
a ‘live prototype’, the product or service will be tested,
followed by a ‘pilot’, which is a longer test than the live
prototype and is one of the final iterations.50 In order to
realise a working and sustainable end product or service
a prolonged test is needed. Therefore, living labs will be
created as they are very suitable in fostering partnerships,
validation and sustainability.67 There is no agreed- upon
definition of living labs, but it could be best defined
as both an environment and an approach that enables
researchers to cocreate and develop with the end users
and stakeholders.67 68 Both organisations 1 and 2, and if
necessary supplemented by two other organisations from
different provinces in Flanders, will serve as living labs.
As those living labs are social environments, they are
subject to human volitions, culture and language,69 70 and
therefore a realist evaluation (RE) is chosen to under-
stand how contextual factors influence our interventions.
Even though an RE is time consuming, intensive and
challenging, it has proven to be a method that provides
a deeper understanding of how, when and for whom a
programme works.70 Based on scientific literature, the
data of previous phases (1A and 1B), the ideas and proto-
type (2A, 2B and 2C), an initial programme theory will be
created. More specifically, contextual factors (C), mecha-
nisms (M) and outcomes (O) will be mapped into a CMO
configuration69 in order to get a better understanding
of how, when and for whom the outcome of this HCD
process (figure 1) works.
Developing a tool or service is often very complex and
calls for a specific approach.48 This MA4A study protocol
answers that call and really puts the end users at the heart
of the development process.54 56 57 71–73 Within this study,
the DSPs are seen as the end users and the PID as the
most important beneficiary or stakeholder, which made it
difficult to determine the role of PID and to what extent
they should be involved in the process. Working with PID
in research can be challenging and asks for accessible
cocreation tools.74 In addition, to maximise and optimise
the input of PID, a solid ‘architecture of involvement’ is
needed and preplanning and training of PID is essen-
tial to avoid tokenistic involvement.75 Within this MA4A
study protocol, PID will be actively involved from phase 2,
starting with the World Cafe. Concerning the World Cafe,
no specific training is prepared. However, measures will
be taken to make the World Cafe accessible for PID. At
all times, a visual harvester will be present to visualise the
output of the World Cafe. Every participant on the World
Cafe is given placemats, which can be drawn or doodled
on. This can be helpful for PID who have difficulties
communicating in a verbal manner. Each participant with
ID can bring a DSP to support them during the World
Cafe. The table hosts will be given the explicit instruction
to address the PID, rather than his DSP. In phase 3, the
PID will be at the centre of the research as the study uses
a living lab methodology. Since the organisation of the
living labs can only be prepared once the tool or service
is known, a specific preplanning and training programme
for PID can be developed for phase 3 if needed. In addi-
tion, the PID will be in their natural environment, which
makes it more familiar and predictable. Finally, research
shows the benefits for PID to participate in cocreation75
and it also leads to better well- being and job satisfaction
for DSPs when they work together with PID.76
Research into the application of the HCD process is
not evident as it is constantly used interchangeably with
other (similar) methods, which systematically compli-
cates research.54 72 Studies, however, show that by using
an HCD process in the correct way, the functionality,
quality, usability and acceptability increase, which ulti-
mately also causes a decrease in product failure.49 52 An
HCD process is very intense and challenging,49 66 and that
is why this MA4A study protocol is so carefully planned. In
addition, it is enriched with traditional research methods
to reduce bias and enhance credibility. The use of tradi-
tional research approaches implies that researchers
follow a research protocol, such as determining sample
sizes and response rates. Within the qualitative part (1A)
of the study, it is difficult to determine the sample size
a priori because exploratory research looks to explore
phenomena in relation to themes one cannot identify in
advance.77 Thus, within phase 1A, no estimate of sample
size can be calculated. The concept of saturation59 is
more appropriate within phase 1A and therefore the aim
is to interview until nothing new is being learnt. In phase
1B, for the web- based online survey, it is difficult to deter-
mine the response rate needed to prevent sampling bias
because there are no exact numbers of DSPs working in
day care facilities. In Flanders, there are 257 licensed care
providers but there are no available figures of the total
amount of DSPs. The exact number of DSPs depends on
the degree of care the person with ID needs (the support
Figure 1 Overview of the Meaningful Activities 4 All (MA4A)
study protocol.
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Open access
budget one receives increases with the degree of support
needed) and this in combination with the level of educa-
tion of the DSPs (the higher educated the DSP, the higher
the cost). In short, each organisation is free to fill in the
available vacancies, which means it is impossible to know
how many DSPs there are in Flanders at any particular
point in time.78 After the survey is sent, follow- up mail
will be sent to enhance response rates.79 In addition,
findings from the survey will be benchmarked with other
published data in order to deal with the fact that analysis
prior to sending out the survey is not possible due to the
lack of available data.80
By performing this MA4A study protocol, the future
support for DSPs will be grounded in their own wishes and
needs, and it will be established by means of an innovative
cocreative approach, an approach that is more likely to
be adopted in practice, in comparison to the output of
traditional research methods. PID will benefit, and fellow
researchers in the field will have a reference protocol that
will guide them in their own research. Ultimately, DSPs
will receive the proper support they deserve. Because in
the end, they are key in enabling PID to engage in MA.
Patient and public involvement
HCD carries patient and public involvement in the core
of its approach. In this protocol, we took all possible steps
to involve PID and the DSP. First, the researchers have
all a long- lasting connection with clinical practice and
the reason why this study is undertaken is based on the
concrete questions we received from clinical practice.
PID, who have a strong and trustful relationship with the
DSP, indicated that they did not always have access to MA.
Contact with Flemish day care centres showed indeed that
DSP needed support in enabling MA. The DSP advocated
the patients’ wishes with the researchers and from these
perspectives the PID, as well as the DSP, were involved in
the overall design of the study. The results of the study
will therefore be grounded in their specific wishes and
the results will have high potential of being tailored to
their needs. All results will be shared with all Flemish day
care centres from the beginning, during and at the end
of the study.
ETHICS AND DISSEMINATION
Ethical application was submitted to the Ethics Committee
of University Hospital Ghent (Belgium) and approved on
6 February 2020 (reference numbers: B670202042983
and PA2021- 091). Data collection (1A) started in March
2020. The complete process is expected to continue until
August 2023. All participants will sign a written informed
consent form. To ensure confidentiality, all data obtained
from the participants will be processed and pseudony-
mised. The results of this study will be submitted for
publication in relevant peer- reviewed journals and will
be presented at relevant conferences. This protocol takes
into account the guiding principles concerning the rights
of PID at all times.
Author afliations
1Department of Rehabilitation Sciences and Physiotherapy, Ghent University, Ghent,
Belgium
2Health and Care, Artevelde University College, Ghent, Belgium
3Special Needs Education, Ghent University, Ghent, Belgium
4Department of Gerontology and Frailty in Ageing Research Group, Vrije Universiteit
Brussel, Brussels, Belgium
Acknowledgements We are indebted to Mike Jarrey for linguistic advice and for
proofreading the nal manuscript.
Contributors CW, DVdV and PDV initiated the study, conceptualised the study and
designed the rst draft of the study protocol. IDC, GVH and JVL reviewed the study
protocol and provided feedback for the renement of the protocol. CW wrote the
rst draft of the nal version of the manuscript. All authors read the manuscript,
provided feedback and approved the nal version.
Funding The authors have not declared a specic grant for this research from any
funding agency in the public, commercial or not- for- prot sectors.
Competing interests None declared.
Patient and public involvement Patients and/or the public were not involved in
the design, or conduct, or reporting, or dissemination plans of this research.
Patient consent for publication Not applicable.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has
not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been
peer- reviewed. Any opinions or recommendations discussed are solely those
of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and
responsibility arising from any reliance placed on the content. Where the content
includes any translated material, BMJ does not warrant the accuracy and reliability
of the translations (including but not limited to local regulations, clinical guidelines,
terminology, drug names and drug dosages), and is not responsible for any error
and/or omissions arising from translation and adaptation or otherwise.
Open access This is an open access article distributed in accordance with the
Creative Commons Attribution Non Commercial (CC BY- NC 4.0) license, which
permits others to distribute, remix, adapt, build upon this work non- commercially,
and license their derivative works on different terms, provided the original work is
properly cited, appropriate credit is given, any changes made indicated, and the use
is non- commercial. See:http://creativecommons.org/licenses/by-nc/4.0/.
ORCID iDs
ChristopheWille http://orcid.org/0000-0002-2138-6200
DominiqueVan de Velde http://orcid.org/0000-0001-6982-1075
PatriciaDe Vriendt http://orcid.org/0000-0003-4861-7838
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