People with Aphasia Shape Spirituality Research: Unlocking Insights into Access and Acceptability

Full text

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People with aphasia shape spirituality research: Unlocking insights
into access and acceptability.
Katharyn Mumbya
a Founder and Director, ‘New Pathways Speech & Language Therapy and
Consultancy’, UK; Licensed Lay Minister, Diocese of Exeter UK.
kath@new-pathways.co.uk
ORCID ID: https://orcid.org/0000-0002-4028-7400
LinkedIn: https://www.linkedin.com/in/katharyn-mumby-2a21a823/
This paper has been published 29/01/25 as follows:
Mumby, K. (2025). People with Aphasia Shape Spirituality Research: Unlocking
Insights into Access and Acceptability. Journal of Disability & Religion, 1–29.
https://doi.org/10.1080/23312521.2025.2457773

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People with aphasia shape spirituality research: Unlocking insights
into access and acceptability.
Underrepresented in research coproduction, and in spirituality research, people
with aphasia partnered with the author in action research incorporating
communication access techniques. They became a coproduction steering group
for a study into assessing and supporting spiritual health in aphasia. The Steering
group were embedded at multiple levels in the research process, likened to
negotiating locks on a canal. The coproduction evidenced how published
standards could be met when including people with communication disability.
The process shaped the WELLHEAD Toolkit (for spiritual health assessment and
support – the product) in its feasibility study, thus ensuring accessibility and
acceptability from a range of spiritual and religious viewpoints. Co-creation
(product and process) was valued, with impact upon spirituality of those
participating as their perceptions were unlocked. Further work is exploring how
far others’ perceptions of their spirituality may be unlocked using the
WELLHEAD Toolkit techniques, including applications beyond speech and
language therapy and communication disability, to support holistic rehabilitation
and wellbeing.
Keywords: aphasia, spirituality, communication access, participation, inclusion,
coproduction, communication support.

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Introduction
Restricted access to communication is experienced by people with aphasia (language
impairments following neurological change). They are often excluded from research
studies requiring the use of language (Townend et al. 2007; Brady et al., 2013) and from
involvement in shaping research (Charalambous et al., 2020). Moreover, the spirituality
of people with aphasia has been neglected, despite the incidence and prevalence of
aphasia (Code & Petheram, 2011), perhaps reflecting perceptions that aphasia is a
barrier to addressing concerns about meaning and purpose in life (already reviewed in
Mumby, 2019; Mumby & Grace, 2019; and highlighted, MacKenzie, 2020; MacKenzie
& Mumby, 2022). Spiritual aspects of aphasia rehabilitation are poorly understood
(Mathisen et al., 2015), though identified within adjustment (Mumby & Whitworth,
2013). Given that spirituality is known to be important in health and wellbeing (Faull &
Hills, 2006; Johnstone et al., 2008; Campbell et al., 2010; Koenig, 2012), concerns
resilience in the elderly (Martin et al. 2015) and merits special consideration in chronic
health conditions (Do Rozario, 1997), people with aphasia should not be excluded.
Spirituality is distinct from quality of life (Sawatzky et al., 2005) about which more is
known in relation to aphasia (Hilari, et al., 2016). Spirituality is also distinct from
religion, its corporate expression, though for some people religion is an important part
of their spirituality (Milner et al., 2020), so support for spiritual health should be
religiously inclusive (“acceptable” irrespective of religious background).
Spirituality is a potentially controversial topic (Mathisen & Threats, 2018), even
“taboo” in some UK Health contexts, amongst a whole range of reasons for the limited
dialogue about spirituality in aphasia (Mumby & Grace, 2019), making it important to
establish methods and materials acceptable to people with aphasia as well as being
accessible. In designing a study of spirituality coproduced by people with aphasia, the

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author drew on her background as a SLT (speech and language therapist: the term used
for speech-language pathologist in the UK) and a licensed Lay Minister in the Church
of England, in aiming to promote communication access and language processing, with
inclusive religious and spiritual perspectives.
There are well-documented techniques and resources that offer improved
communication access such as “communication ramps” and aphasia-friendly
environments (Pound et al., 2000; Simmons-Mackie et al., 2007; Rose et al., 2012),
training for communication partners (Swart & Horton, 2015) and inclusion for people
with aphasia in research (Dalemans et al., 2009). Ground-breaking work to improve the
access of people with aphasia in research (Pearl & Cruice, 2017; Jayes & Palmer, 2014)
has yet to be adopted outside aphasiology.
People with aphasia are experts in aphasia, and as such they need to have their
views and insights heard in the same way as any other expert patient in accordance with
principles being embedded into health research for Patient and Public Involvement
(PPI). Outlining current PPI best practice, the UK Health Research Authority (HRA,
2019) stated four key principles, namely: involving people with (1) relevant lived
experience for the population and study focus, (2) representing the range of experience
in question, (3) involving people in multiple aspects of the study, (4) improving the way
ethical issues are addressed. The current study explored how far such generic criteria
could be met with people with aphasia within spirituality research. Previous work has
laid relevant foundations, such as reviewing quality of life questionnaires
(Charalambous et al. 2020), considering informed consent and aphasia (Jayes and
Palmer, 2014). A previous report by Harrison and Palmer (2015) of levels of
involvement and experience of being in a PPI group included two people with aphasia.
Although listing communication impairment amongst the barriers to participation, the

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report did not elucidate strategies for improving experiences. Palmer and Paterson
(2013) outlined some of the procedures employed in a PPI group involving four people
with aphasia and their carers, but they focused on overall experiences of the process
rather than the specific contribution of aphasia. In considering the ethics of including
people with aphasia in PPI activity, the desirability of partnership has been highlighted
by Hersch et al. (2021) and the need for flexible research practices, “embedding an
ethos of equity, inclusion, reciprocity, democracy and openness to mutual learning”
(McMenamin et al., 2022, p.524).
“Coproduction” is a recent incarnation of PPI work, reflected in work with
people with aphasia to shape research into self-management with aphasia (Wray et al.,
2021), an evaluation of a design for discourse research coproduced with people with
aphasia and SLTs (Cruice et al.,2022), and coproduction of aphasia-friendly research
experience survey materials (Shiggins at al., 2022). Additional avenues for exploration
arose from interviewing two participants with aphasia about their experience acting as
co-researchers (McMenamin et al., 2021). Despite all these developments, there remains
little documentation about the mechanics of collaborating with people with aphasia to
allow further application, and even less about spirituality in aphasia. Gordon et al.
(2018) advocated the provision of detailed information about the context and
mechanism of PPI work, to better understand the impact on research and those who
contributed, and it follows, to improve future work, which is a motivation for the
current paper.
This paper seeks to address how people with aphasia can be instrumental within
the research process. Specifically, it addresses spiritual parameters, which, in common
with emotions, can prove challenging to put into words and have received relatively
little research attention in people with aphasia, there being little published work on

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assessing or supporting spirituality in this population (see Mathisen & Threats, 2018,
p25; Mumby & Roddam, 2021). The paper explores the processes involved when a
group of people with aphasia acted as a Steering group with the author for a feasibility
study of spiritual health exploration in a further sample of people with aphasia using the
WELLHEAD Toolkit (now published, Mumby, 2022) designed to assess and support
spiritual health. The feasibility study has been reported elsewhere (Mumby & Roddam,
2021).
The threefold aims of the current paper are:
a) To exemplify and respect collaboration with people with aphasia at multiple stages in
the research process, offering transferable techniques.
b) To elucidate the iterative process of reflexive engagement with people with aphasia
shaping spirituality research, underpinning the WELLHEAD Toolkit.
c) To represent the impact of the collaboration upon group members and its
implications.
This paper itself forms part of the reflexivity of the coproduction as its earlier drafts
were scrutinised and amended by the PPI Steering group. They agreed the use of the
metaphor of the canal which has been adopted, visual imagery being a helpful tool in
aphasia, and their comments are shown in the text, in quotations: “Canal and locks a
good idea”. Thus, the approach enables elucidation of the process and underpins the
product (the Toolkit) which in turn may be reapplied.
Materials and methods
Action research offered a framework for the iterative cycles of coproduction for the
WELLHEAD Toolkit feasibility study. Action research is increasingly useful in
healthcare settings (Meyer, 2000), an approach involving “action, evaluation, and

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critical reflection and – based on the evidence gathered – changes in practice are then
implemented”. Action research is also “participative and collaborative; it is undertaken
by individuals with a common purpose” (Koshy et al. 2010, p.2). It is a fluid process
characterised by cycles of: Planning, Acting, Observing, Reflecting. The output in each
cycle is based, in this narrative, on joint reflection giving change in research practice for
the feasibility study. Such elements provided focal points, just as locks on a canal allow
movement from one level to the next, incorporating something new before a boat can
proceed. The metaphor of the canal locks aligns with the spiral model of participatory
action research described by Kemmis and McTaggart (2000). It is an upward trajectory,
providing detailed evidence for co-construction including the voice of people with
aphasia, and potentially transferable principles.
Prior preparation
Spirituality in aphasia had emerged as a theme from the author’s previous engagement
with people with long-term aphasia (Mumby & Whitworth, 2012, 2013). The current
study arose from the author’s later work as an SLT in a hospital outpatient setting.
Before initiating the research collaboration, she reviewed the existing literature
concerning aphasia and spirituality (reported in Mumby, 2019; Mumby & Grace, 2019)
and spiritual health assessments potentially suitable in aphasia (Mumby & Roddam,
2021), reflecting on her voluntary work, and consulting with experts in the field (from
academia, chaplaincy and church contexts, including detailed exchanges with the
hospital chaplain finalising the definition of spirituality as ‘searching for meaning and
purpose’). She originated the fledgling WELLHEAD framework, reported in Mumby
and Grace (2019) as input to the PPI process for subsequent modification.

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The feasibility study emerged from a clinical context into formalised research,
shown in Figure 1., a representation of the process as endorsed by participants within
Cycle 4 below.
(Figure 1 about here)
Local governance in the hospital approved the author’s protocol for safeguarding
participants, including informed consent, confidentiality, respect for diversity, provision
of premises, and so on. The chaplain from that setting (serving “All faiths or none”)
agreed to provide additional safeguarding by accepting any referrals for additional
spiritual support, if needed.
Preparatory work began two years prior to the start of the feasibility study itself,
including planning focus groups, (described in more detail below) the main aim of
which was to test reaction to the basic research concepts and to evolve a stable research
Steering group, with continuity reinforcing relationships of trust and understanding, and
promoting their power to question and modify the research, considered crucial in the
context of previous findings (Harrison & Palmer, 2015). The Steering group was to
have two key roles: to ensure firstly accessibility and secondly acceptability of the
research content and process from an “expert patient” perspective.
The research process has been encapsulated in more detail in Figure 2. showing
six main cycles of engagement, when the research process was checked like waiting in a
canal lock, not proceeding until input from people with aphasia was incorporated.
Following the pattern of action research (Koshy et al., 2010, p.7), within each main
cycle there were sub-cycles listed in Figure 2. which will be outlined in turn. In each
cycle the author undertook planning, shared draft plans with the people with aphasia,
then observed their responses and facilitated joint reflection to negotiate consensus for

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planning the next step in the research. Cycles of engagement and response enabled the
research process to proceed. A Steering group member looked back on the process,
reflecting:
“Boat goes up”
(insert Figure 2. about here)
Focus groups
Methods of achieving communication access for people with aphasia within face-to-
face focus groups were adopted in subsequent cycles, concerning access and
acceptability. Regarding the latter, the initial framework approved by governance
ensured the principle of contributing views to a general discussion rather than stating
individual spiritual standpoints (religion, faith, belief). These principles were
emphasized throughout coproduction, acknowledging that people’s own perspectives
inevitably colour their judgements (including the SLT author’s, acting as participant-
observer, influenced by her Christian religious background, and her own recovery from
mild aphasia following viral illness). The author stressed the need to respect all
viewpoints and keep confidentiality, and recognised the contributions of those with
aphasia, offering mutual acceptance within the agreed framework.
People with aphasia who had been discharged from outpatient SLT were invited
using an “Aphasia database”, comprising those who had given written consent for their
contact details and aphasia diagnoses to be kept after discharge for research purposes
within five years, and targeting 19 who had already participated in a SLT program of
peer support, (the Aphasia Expert Trainers course based on materials originally
developed by Connect, 2005), a form of conversation partner training (McVicker et al.

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2009; Swart & Horton, 2015). Such training helped ready them for group discussions
which can prove challenging with aphasia.
Communication by email occurred where appropriate for known communication
skills, or by aphasia-friendly postal invitation and telephone, according to published
guidelines (Rose et al., 2012). Ten people with aphasia attended the initial focus group,
and seven of them chose to attend a further group held in a non-clinical education centre
at the hospital. Support for transport minimised barriers concerning physical access.
The focus groups consisted of retired men and women, age-range 65-82 years,
supported by several hospital volunteers with prior training by SLT, one of whom had
mild (high level) aphasia, others helping take minutes and offering support. The severity
of aphasia in the groups ranged from mild to severe. Some participants had additional
sensory losses: one participant was registered as severely sight-impaired (with macular
degeneration and right-sided homonymous hemianopia); two participants had known
hearing loss but lipread well in conversation. One of the participants had general short-
term memory problems which required repetition of information. Two people had
moderate receptive aphasia and moderate-severe or severe expressive aphasia. The
person with the most severe impairment used a wheelchair and had very little spoken or
written communication, relying on a Yes/No response to questions, using pictures,
drawing, pointing and gesture. Overall, a wide range of abilities and experiences was
represented, felt to reflect the wider population of people with aphasia.
The author chaired the focus groups and facilitated participation with the support
of the volunteers who had prior training and experience in communication support.
Language input was simplified, avoided a fast rate of delivery, used repetition and
concurrent written key words. Generic ‘communication ramps’ were available,
comprising booklets of pictures and words for frequently used concepts such as

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Yes/Don’t know/No, numbers, letters, colours, days of the week and months of the year,
feelings, maps, and so on. Those who were less adept verbally could point to selected
items to communicate, and others could use the resources to clarify what was being said
and aid understanding. Clipboards and pens were used where writing or drawing aided
communication. Some key words, pictures and diagrams were shown on a screen to
enable the group to focus attention, but with verbal explanation and selected printouts
for those with visual problems, with optional use of magnifying glasses. Participants
were encouraged to use their personal communication aids where applicable such as
apps on tablets, phones, and personalised communication books.
Two hours were allocated for each focus group to allow repetition, processing
information, and facilitated responses, and a comfort break with refreshments for
improving concentration. Opportunities for building cohesion within the group were
encouraged via expressions of thanks for participation and the ideas expressed.
Participant feedback was structured using a written questionnaire which helped ensure
all participated, though open discussion was encouraged about the overall research aim
‘to develop and test out a tool to help people talk about spirituality or the deeper things
in life’. The following questions were included:
Is the study useful, and why? Which is the most important part of the study? Do
you think people will want to take part in the study? Are there any problems with
the study? Are you interested in helping?
During the second focus group an aphasia-friendly agreement for the proposed Steering
group was shared, read aloud, and checked for acceptability, and people consented in
writing if they chose to be part of that future group. Resources from the National
Institute of Health Research (see Pearl & Cruice, 2017) were shown to convey what
“aphasia-friendly” research materials might comprise. Some draft research ideas were

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introduced with pictures and key written words about aspects of spirituality, to check
whether participants perceived them to be useful and relevant, including prototype
content for the WELLHEAD Toolkit in a possible feasibility study.
In keeping with action research, observations from the groups and subsequent
reflections will now be summarised. There was a wide range of views and expectations
about spirituality. Not everyone found it relevant in their life after stroke, but some felt
it was very important in coming to terms with problems and impairment. One of the
volunteers summarised their consensus that spirituality was not the same as religion,
“Religion is one part of spirituality – it’s not the same”. All agreed that it was important
to choose words carefully, not to offend anyone, “some religious words can put people
off”, and that finding the common ground in spirituality would be a helpful focus,
highlighting differences less. It was established that “a system to help people express
their spirituality” was a good aim, irrespective of medical history. Only one person said
the research had no personal relevance, “Spirituality is not an aim for me as a stroke
sufferer”. Participants recognised that group membership of any sort was difficult with
aphasia, affecting religious participation, which was perceived as “lonely”. Some felt
“spirituality is a coping strategy”, concerned with the “way you think feel and cope” but
that it was not the same for all, and might change or develop over time.
The groups endorsed the aim of developing resources to help people explore
spirituality, or the “deeper things in life”, that the resources needed to be “aphasia-
friendly”, and take account of different abilities (vision, hearing, memory as well as
simple language). All identified readily with the images of a seed growing into a fruit
tree for helping discussions about maturity, spiritual nourishment and change over time,
images which prompted sharing of experiences. There was consensus that anyone may
find it hard to talk about spirituality, so these resources could have uses beyond aphasia.

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They agreed the research would look at whether the resources worked in a conversation,
and whether people found them helpful. Overall, the discussion and sharing confirmed
that research into aphasia and spirituality was considered important and relevant, that
people with aphasia should influence the design, and that some people might be put off
by words such as “spirituality”. Using the phrase “the deeper things in life” for a study
information sheet was preferred, and the terms seen from the WELLHEAD drafts were
“OK to talk about”.
In summary, endorsing the principles under discussion, the main changes made
by the focus groups concerned the study scope and terms, identifying priorities from
within a range of options and removing items which were potentially controversial.
Aphasia-friendly minutes were shared with the attendees after completing the focus
groups by combining the volunteer notes with the author’s notes, minutes providing an
opportunity for member checking and review in subsequent cycles. Focus group
participants agreed the main agendas for the ongoing Steering group, which were: fine-
tuning WELLHEAD and selecting a spirituality assessment, in readiness for seeking
ethical approval for a feasibility study (subsequently granted from the UK Health
Research Authority IRAS id 216 799).
There follows a detailed narrative of cycles of steering the feasibility study,
forming the main results.
Results
Composition of the Steering group
Five of the focus group (including one hospital volunteer with aphasia) all consented to
form the Steering group, (two with mild aphasia, one with moderate aphasia and apraxia
of speech, and two with severe aphasia, one of whom had additional memory

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impairments). Though not asked about their own spiritual orientation as a precondition
of being included in the Steering group, members volunteered this information over
successive discussions, with anonymity preserved for this paper. There was a range of
standpoint, from atheist to evangelical Christian, with several undecided about their
religious beliefs despite adhering to the label “Christian” or “Humanist”. Environmental
concerns were more important for one member than any mainstream religion.
Steering group format
Steering group meetings followed the same basic format as the focus group, requiring
ample time and a limited simple agenda with picture cues provided to anchor each
meeting. It emerged that two members with visual problems found powerpoint slides
largely inaccessible irrespective of their seating position, preferring hard copies on
yellow paper to assist with macular degeneration. Notes from independent observers of
the meetings (hospital volunteers) and the author’s notes were summarized into aphasia-
friendly minutes and member-checked for accuracy. Where possible contributions were
included verbatim. The minutes were circulated, verified, revisited and amended as part
of each next meeting, having been circulated in advance with an update about the
research.
Steering group members were invited to comment and contribute to a
discussion, encouraged to provide feedback on the plans including the ethical aspects
such as consent, confidentiality, the use of recordings. Meetings were convened
approximately quarterly and covered the following aspects within the cycles:
• Shaping redrafts of the spirituality toolkit (WELLHEAD: assessing and
supporting spiritual health via a one-to-one interview) being developed by the
author.

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• Selecting a comparator spirituality assessment by consensus.
• Responding to ethical issues.
• Receiving and interrogating updates about the feasibility study.
• Contributing reflections and feedback on the experience of coproduction.
• Helping to draft a paper and a presentation for disseminating findings.
The steering process was fluid within some fixed points (governance agreement,
ethical approval, terms of consent and contracts) as shown in Figure 1. The first
Steering group meeting was convened three months after focus group activity (see
Figure 2.) with two main sub-cycles outlined in detail: selecting a spirituality
assessment; and revising the WELLHEAD Toolkit.
1. Selecting and revising materials and methods
A standardised assessment of spiritual health was required for the feasibility study to
provide a comparison with scores derived from the WELLHEAD Toolkit. The author’s
preparatory literature review revealed two candidates: the WHOQOL-SRPB BREF
(Skevington, et al., 2013), and SHALOM (Fisher, 2010). To accommodate severe
aphasia in the Steering group, a sorting method was used to rate each questionnaire, by
extracting the questions from each. Each question was printed out onto a separate card
in large print so members could sort them into two separate columns according to
whether they judged that the words were “hard” or “easy” to understand. They were
encouraged to reach consensus, but a mid-way column was used when agreement could
not be reached, with the author photographing the decision. In identifying “Hard words”
or language, members identified the use of prepositions in some of the questions, and
that “Short words” can still be hard if they are abstract.

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The same questions were then rated again, having been shuffled, to judge
whether the “topic” of each question was “hard” or “easy”. Members engaged with the
questions, which were read out by the researcher in turn as the written cards were
shown, but they were discouraged from answering the questions at the time, just to
focus on sorting into “hard” versus “easy”. When reviewing the questionnaires,
members agreed that a “Hard topic” would be one that was difficult to discuss, or
controversial.
The ratings for WHOQOL-SRPB BREF and SHALOM were compared and
shared with the group. For SHALOM there was full consensus (Table 1). Of the 20
items in SHALOM, 30% were rated by members as having “Hard words”, and 45%
“Hard topics”. “Hard topics” did not necessarily involve “Hard words”. In general, the
more abstract categories were rated as harder in both senses. The “Hard words” were
mainly in the Transcendental domain, with two in the Personal and one in the
Environmental domains (specifically the use of the word “one-ness”), whilst 70% of the
words were easy. All the Transcendental questions were perceived as “Hard topics”, but
all the Environmental ones perceived as “Easy topics”. “Easy words” and “Easy topics”
did not equate except in the Personal domain).
(Table 1. about here)
Turning to the WHOQOL-SRPB BREF summarised in Table 2., members were
unable to achieve consensus for four of the 32 questions in terms of “hard” versus
“easy” words, and for eight of the 32 questions in terms of whether they were hard or
easy topics, suggesting that the percentage of “hard” ratings may have been
conservative for people with more severe aphasia. It was agreed that 32 questions were
too many.
(Table 2. about here)

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In summary, SHALOM had a higher proportion of “easy” questions the
WHOQOL-SRPB which was also felt to be: “…..Too wordy”, and one person found it
had too much emphasis on faith, which he found off-putting. Overall, members agreed
SHALOM would be the better questionnaire for people with aphasia. Several members
felt that when responding to such questions, people’s responses might be mood-
dependent, which was an interesting insight worthy of consideration in future research.
The scope of the questionnaires rated in the first part of the meeting was
discussed in relation to the WELLHEAD framework (already endorsed by the focus
group as the basis for the Toolkit). The Steering group related domains in the
questionnaires to dimensions of WELLHEAD, underlining that WELLHEAD was
addressing similar issues for them as the spiritual health questionnaires. A summary of
their views about the dimensions is shown below and accordingly the dimensions have
been mapped onto the questionnaire subsections within Tables 1. and 2.:
WIDE: Concerned with connecting with other people.
LONG: Concerned with religion, tradition.
HIGH: Felt to be more controversial than the other domains, requiring careful
questions (due to different views of ‘God’ ‘Otherness’ etc.). Agreement that ‘God’
should be included, being important for some people.
DEEP: Concerned with personal experience, inside self.
In consequence, further discussion of WELLHEAD’s theoretical framework was
included in Mumby and Grace (2019).
Members were shown draft content for the WELLHEAD Toolkit. Concerning
the visual appearance of Toolkit framework, members observed its resemblance to a
cross risked religious bias, so should be counterbalanced by emphasizing the circular
aspects the design (as shown in Figure 3.).

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(Insert Figure 3 about here).
Members favoured incorporation of picture materials in the Toolkit, offering users
flexible personal choice. The Steering group strongly disliked the use of cartoons, so
wherever feasible they were replaced with photographs, paintings or line-drawings. The
group recommended additional pictures for the resources including photographs of their
own. Sculptures were felt to be very meaningful but not practical if the Toolkit was
circulated more widely. There was some discussion of how to incorporate sounds in the
resources (sound of birds, the sea, children laughing) but it was felt that these might be
too personal and not generic enough.
The Starter questions (for facilitators to ask) within the Toolkit were intended to
be linguistically simple and the Steering group approved them as ‘aphasia-friendly’ as
well as grading them so that more neutral terms could be used earlier in the Toolkit,
with more specific terms emerging when appropriate for an individual. This mitigated
against any potential offence from using specific terms early in the process prior to an
individual’s personal viewpoint being known. The Steering group approved the idea of
adding key words on word boards for each dimension, which were later incorporated.
Effects of the process on the group started to emerge. For example, most
members said they had never really considered spirituality as distinct from religion and
were interested to do so, with a new-found recognition that the two were separate.
Members were encouraged to bring their own material (such as photos) for discussion,
and some brought written notes prepared at home, later incorporated into the minutes.
This helped one member with severe aphasia who found it hard to convey her thoughts
immediately:
“Makes it clear”

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In summary, the main changes made by the Steering group in this first cycle
concerned the selection of SHALOM, and modification of the WELLHEAD Toolkit
(including the choice of pictures and words), which was redrafted further in successive
meetings, giving a sense of upward progress:
“Up up up”
2. Reviewing and revising materials and methods
The group reviewed draft paperwork being submitted for ethical approval including and
information sheets and consent forms. They proposed that the hospital volunteer with
aphasia should be involved in the consent process, (a proposal unfortunately rejected by
the ethics committee who required prior attendance on a consent training course). Those
with visual or cognitive problems needed longer to process the paperwork, and
members agreed it should be sent out to participants in advance. The participant
feedback questionnaire was also checked and approved.
In reviewing the pictures for WELLHEAD, members preferred offering choice
from a limited number of pictures at a time to support the interview. The photos
stimulated discussion, though not everyone understood the symbolic meaning of every
picture, particularly those with visual or memory problems. The pictures included by
the author representing growth were universally understood (such as a dandelion, for
which the group suggested adding further stages of development). Some pictures were
felt applicable to more than one dimension of WELLHEAD, which was a useful insight,
later incorporated in the Toolkit Manual. Members valued the newly drafted “word
boards” comprising key words, some people finding these sufficed without pictures.
The starter questions used in parallel to the “word boards” were further reviewed
and edited. Most were easily understood but some changes were suggested such as

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changing “impairments” to “difficulties”; adding to “tradition” the “things you always
do”, with the use of pictures helping in parallel. All agreed with the distinctions drawn
between Belief (Head) Faith (Heart) and Religion (Social Group): concepts as outlined
in the Toolkit. The group found the overall content of the questions acceptable, and they
were positive about “next steps” comprising supported goal-setting. The use of a visual
analogue scale (1-10, using additional emoticons at the extremes) for patient self-score
in each dimension was approved by the group.
In summary, Cycle 2 enabled the submission of the application for research
ethics approval and continued modification and development of content for the
WELLHEAD Toolkit. As one member later reflected:
“Ensure agreement of words, terms and phrases. No ambiguity.”
3. Reviewing content, planning future work and dissemination
The feasibility study had now started, and the hospital chaplain was invited to part of a
meeting to witness how communication took place and to help the group understand the
breadth of his role in spiritual care in the hospital for people of “all faiths and none” in
the context of the study. The chaplain was the agreed access point for any research
participants needing extra support, and this offer was extended to the Steering group as
a potential source of support for any who were uncovering their own spiritual needs
(though no-one accessed help). Group members volunteered that they enjoyed coming
to the group and found personal benefits, “the value gained from the group work”,
which one member described as, “interesting, stimulating and inspiring”.
The purpose of the feasibility study was revisited, with members initiating a
discussion of the possible effects of spiritual assessment and support (as found in the
WELLHEAD Toolkit) for reducing depression and anxiety or improving quality of life.

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Members asked the chaplain about his experiences, and he shared that people sought
spiritual support during depression which may be linked with loss or bereavement. One
member felt that depression was linked with “whatever you believe in and whether you
were happy inside yourself”.
Members agreed that the range of backgrounds and abilities in the group was a
strength. Some wanted to share about their beliefs, summarised by a note-taker: “some
not religious, some asking ‘Is there a God?’ some describing Christian faith, some not
sure”, and he reported the author’s reminder to the group “to stick to general topics
rather than persuading others about faith, religion or beliefs, and that she tried to stay
neutral”.
The Steering group checked the latest version of the WELLHEAD Toolkit and
record forms, and the author provided general feedback about using them during data
collection. Commenting on the inclusion of religious symbols on one page of the
Toolkit, group members felt that such content may need modification according to the
future settings in which WELLHEAD was used (later incorporated in the Manual). One
member noticed the omission of two optional questions from a large-print draft of the
SHALOM questionnaire and corrected the draft. Members were encouraged to ask
questions; for example, the person with the greatest cognitive problems showed insight
when asking whether it was possible to measure spirituality, which was discussed in the
context of scores which might change over time. These examples illustrate the group’s
interest and concern with details.
The author continued chairing the group to ensure all participated, though now
people knew each other better, they supported each other, with the author highlighting
key points to make good use of time and ensure joint understanding. Though weight
was generally given to the majority opinion, extra time was given when conversation

22
broke down or where there was more severe aphasia, so that an individual message
could be conveyed. When asked by the author to reflect on how consensus was reached,
two members responded:
Member 1 (moderate aphasia, visually impaired):
“We’ve divided opinions. We talk things over. And we get to a…….including
people…..”
Member 2: (severe expressive aphasia, moderate receptive aphasia)
(Nods and points to ‘how we agreed’ on the summary of the paper, and encourages
the group to see the words although unable to speak them himself. Member 1
cannot read the words without a magnifier)
Author:
(Reads aloud the words ‘how we agreed’, to include Member 1, which helps him to
say the word ‘agreement’):
Member 1:
“….agreement……conclusion. That’s the only way to talk things”.
This exchange illustrated how people with aphasia were collaborating in the
communication process. Sometimes people could contribute when given an opportunity
to return to the discussion later, after they had worked out what to say. Another member
commented on the importance of aphasia-friendly agendas and written frameworks
comprising key words:
“The trouble is my brain is so slow. I need to read it later. This is good now (points
to aphasia-friendly document), ‘cos it can remind me”
Most of the Steering group wanted to contribute to dissemination, and reviewed copies
of the author’s one-page summary of the PPI work so far, forming an early draft of this
paper. They verified a flow chart, showing different levels of involvement in the
research process, adopted as the basis for Figure 1. Group members were asked for
comments, and these were agreed verbatim for inclusion in dissemination. All agreed

23
they wanted to be mentioned by name in any acknowledgements (and written consent
was later taken for this purpose). In summary, members reviewed the scope of the study
and offered reflections on how they were participating, whilst contributing future
planning.
4. Reviewing, planning and dissemination
The progress of the feasibility study was shared in a general way, with data collection
completed and analysis underway. Modifications to the WELLHEAD Toolkit pictures
were reviewed, including two photographs taken by Steering group members, and three
drawings suggested by the group.
Following dialogue in the previous cycle, two members had initiated email
contact with each other “To talk about things more” and requested a copy of the word
boards for that purpose. One of these people had global aphasia, but instigated inclusion
of a picture of the ruined church on the hill outside the meeting room. He clarified that
the hill could be considered as a separate symbol from the church. Helped by the
member with mild aphasia, they had the idea of taking a photograph back from the
church on the hill to show the window of the room where the Steering group were
meeting, to form part of the reflexivity of the paper, with the approval of the group.
They did take such photos to represent the interaction between the symbolic high
spiritual place and the group meeting in the building below (see Figure 4.). The member
with mild aphasia summarised it by email from his point of view for inclusion in the
paper:
“my thoughts when sitting on the hill:
Looking from a place of learning and caring to a place of faith.
Looking back from that place of faith, hopeful, inspired and committed”

24
The other member, though unable to write or dictate a reaction, checked the quotation,
and said he agreed with it. In this way, cycles increasingly concerned reflection within
the group members themselves, and their own actions or responses, as encapsulated in
the quotation.
(Figure 4. about here with images: (a) Uphill church to left, and (b) Steering group
venue to right.)
Part of the draft paper containing quotations from the group was read aloud, and minor
amendments made. Slides for a conference presentation were also shared, and amended
by request to give more prominence to the sorting activity for selecting SHALOM
(hence the detail given in Cycle 1). The group enthusiastically adopted the author’s use
of the canal metaphor to represent the PPI process. Using the vocabulary of canal locks
they offered lively reflections about the research process, as incorporated within the
current paper. Having given written consent for their comments to be videoed, those
who wished contributed reflections to video clips for inclusion at the conference since
they were unable to attend. In summary, the group contributed reflections and shaped
plans for dissemination.
5. Verification, dissemination and planning
The Steering group acted as hosts for a feedback meeting to which participants in the
feasibility study were invited, and general findings were shared as part of member
checking. Four of the feasibility study participants chose to attend, though one was
prevented by illness, and their anonymity was preserved in written minutes of the
meeting, with all attendees reminded about confidentiality of personal discussions.
Sadly, one member of the Steering group had been ill since the last meeting and had

25
recently died, which was a shock to group members who felt it appropriate to send a
bereavement card acknowledging his contribution.
Research findings were summarised (in written and verbal form, and on
powerpoint slides) and they were verified in general terms, with attendees asking
questions and commenting on the themes identified within the analysis. Some of the
words were not easy for people with aphasia, so were reworded at the time to aid
processing: for example, “catalysis” reworded using “trigger”; “perceive benefit”
reworded using “think it helps”. There was consensus that the numerical findings from
the WELLHEAD feedback questionnaires represented overwhelming support for using
the WELLHEAD Toolkit. Examples of feasibility study comments were checked and
felt to align with personal experience. Time was spent discussing the importance of
“harmony”, the need for people to explore things on their own terms, and using their
own linguistic terms, which was felt to be a strength of the Toolkit by Steering group
members and feasibility study participants alike.
The feedback group also reviewed the Toolkit definitions of “Belief” “Faith”
and “Religion”, and felt no changes were necessary from their experience, giving good
consensus as follows:
‘Information’ was the key thing in ‘Belief’.
‘Trust’ was the key thing in ‘Faith’.
If there is no sense in the heart (part of ‘Faith’) ‘Religion’ does not feel ‘Real’.
Religion is a social system that grows over time out of Belief and Faith
In preparing the Toolkit for wider use, the group agreed that some seldom-used pictures
could be removed or replaced by clearer ones, and several people again stressed the
importance of pictures to help people tackle difficult concepts and express them. Three
new line drawings had been commissioned and were found acceptable for topics where

26
photographs were known to be problematic.
Several attendees took up the opportunity to sample the ongoing NVivo software
analysis to see how the anonymized interviews were being included and coded, and how
the themes were derived. They expressed satisfaction that the approach used a clear
scientific method.
Dissemination to a wider audience was also discussed. The feedback group
reviewed the video clips from the previous meeting and selected one for inclusion in a
regional conference presentation, and some people requested their own copy of the
presentation slides. The clip included a reference to the perception that there was an
ongoing ‘group journey’ concerning spirituality. Indeed, participants from the feasibility
study and the Steering group commented that they wanted to hear each-other’s stories
(about aphasia, illness and “life journeys”). The author explained that such sharing was
not the primary focus of the meeting for ethical reasons, and she wanted to remove any
pressure to do this, but attendees took the opportunity to share informally over coffee.
The group endorsed a draft conference poster of findings (Mumby & Roddam,
2018 [poster presentation]), and they were shown the WELLHEAD website then in
development (Mumby, 2023a). After Cycle 3, a paper submitted to a journal by the
author was rejected, so a one-page summary forming the basis of a new draft based on
the canal metaphor was shown in the meeting, and comments were noted, agreeing the
redraft in principle.
Reflection also led into future planning. Attendees at the feedback meeting were
interested in whether people with dementia or older people would benefit from the
WELLHEAD approach, and in the idea that spirituality could be linked with mood (and
depression or anxiety). Steering group members offered to check future drafts by email
even if the group was no longer being convened, as the project was due to complete a

27
month after the next meeting. People were keen to stay informed and involved, although
the author explained she did not have permission to contact them after the end of the
feasibility study, so people could contact her instead if they wished.
The question, “At what stage would WELLHEAD be useful to people?” elicited
varying responses. Some felt it would vary according to the person, but the consensus
was that people needed some time to recover from trauma before they could make sense
of spirituality. Attendees valued the opportunity to share reflections, and many found
the process “interesting”.
6. Verification, dissemination and planning (Out into the river)
The final Steering group meeting provided the last opportunity for hosting a feedback
session with invited research participants, three of whom attended. It took a similar
format to the previous meeting, with presentation and verification of findings and
opportunities to reflect and contribute to dissemination. One of the benefits of opening
the group to others was to loosen the tight cohesion that had developed in readiness for
ending the meetings.
The group felt WELLHEAD should be used “when battling to get back into
life”, and that it might help soon after discharge from hospital. “If you are very low,
need support to understand how to get yourself out and think differently”. The group felt
it would need to be used later in recovery when there was severe aphasia than in milder
impairment, “with severe aphasia the process is gradual”. Further group reflection
confirmed a perceived link between mental health and spirituality, “Depression and
spirituality are parallel journeys”.
In summary, the final lock was about making an ending by looking back over
the project as a whole and reflecting together on future directions as well as taking the

28
chance to say goodbye. This was an emotional meeting as people acknowledged the
ending, with several attendees shedding tears. By way of farewell, the person with most
severe aphasia took both the author’s hands in his one functioning hand and bowed in
his wheelchair, pressing the hands to his forehead, so the author replied in kind. There
was a sense of people loosening their ties to the project as it moved beyond the structure
of the study, and, to use the canal metaphor: out into the river.
Discussion
The results will be discussed in relation to the three original aims (a, b and c).
a) To exemplify and respect collaboration with people with aphasia at multiple
stages in the research process, offering transferable techniques.
Using the approach to communication access outlined in the methods and expanded in
the results, people with aphasia coproduced the feasibility study of the WELLHEAD
Toolkit throughout the research process, demonstrating cycles of engagement during
research design (materials and methods), modifications in response to initial data
collection, member checking for credibility, contribution of reflections on the findings,
and dissemination. Unlike previous studies (some of which were described in the
introduction), coproduction occurred without the involvement of “carers”, because
they are known to have differing perceptions and if “speaking for” people with
aphasia, may not represent them (Croteau & Le Dorze, 2006; Gillespie et al., 2010).
The coproduction process was an iterative process capable of evaluation, in
accordance with generic principles for stakeholder engagement set out by Boaz et al.
(2018). The PPI activity also met all four criteria mentioned in the HRA guidelines
listed in the introduction: (1) including a wide range of people with aphasia and co-
morbidities, reflecting lived experience for the population and study focus; (2)

29
representing a range of experiences of spirituality and religion in the context of aphasia;
(3) partnering with people with aphasia in multiple aspects of the study as evidenced via
action research with successive “locks”; and (4) improving the way ethical issues were
addressed, by collaborative revision of methods and materials, and joint reflexivity on
all aspects of the study. The Steering group spanned a 21-month period, longer than
other similar studies, allowing PPI activity beyond the design phase.
The results also evidenced principles for potential application in other contexts
recognising that communication access is an important aspect of inclusive practice.
Provision of detail about coproduction increased the transferability of the study.
b) To elucidate the iterative process of reflexive engagement with people with
aphasia shaping spirituality research, underpinning the WELLHEAD Toolkit.
Using an action research paradigm, encapsulated within the canal metaphor, the PPI
process offered rigour to the feasibility study itself, adopting the principle of cyclical
member-checking and reflection throughout. Cruice et al. (2022) called for detailed
accounts of PPI work, as offered in this coproduction account which is important for
evaluating the ultimate design of the WELLHEAD Toolkit. The PPI work underpinned
the feasibility study of the WELLHEAD Toolkit, repeatedly grounding it in the
experiences of people with aphasia, coproduction offering further development and
verification beyond the feedback from the participants in the feasibility study itself.
Conversely, the positive findings of the feasibility study (Mumby & Roddam, 2021) in
terms of acceptability, accessibility and impact, offered triangulation for dependability
of the coproduction process.
The results evidenced the relationship of trust and mutual respect in co-
construction. A gradual increase in group cohesion, confidence of expression and
initiation, was counterbalanced by loosening ties and making goodbyes at the end.

30
Coproduction repeatedly shaped the feasibility study, particularly in terms of
assessment selection and the content of the Toolkit, and verification of multiple aspects
of the design and findings. Amendments primarily concerned accessibility of
communication and acceptability of content, echoing themes that subsequently emerged
from the feasibility study itself (Mumby and Roddam, 2021).
Limitations of the study included the small number engaged in this PPI work,
representing a particular cross-section of approaches to spirituality, the use of consensus
sometimes overshadowing individuals’ specific experiences. Seeking to explore
individual perceptions of spirituality from people with aphasia thematically, detailed
case studies arising from the feasibility study have since been initiated (Mumby, 2019;
Mumby, 2023b). During coproduction criteria agreed concerning acceptability were
guided by principles of spiritual inclusion, and were substantiated in the feasibility
study itself, where a wider range of religious background and views were represented.
Being self-funded, the study had fewer resources than larger studies of
coproduction (such as Cruice et al., 2022) so the author’s role as participant-observer
inevitably formed a pivotal part of the reflexivity, influencing the direction of travel.
Nevertheless, recent work elsewhere supported the approach, such as Bright and
Reeves’ (2020) conclusion that communication partner training should address the
relational needs of people with communication impairment after stroke, but also their
existential (spiritual) needs. The current study should help inform such therapeutic
developments.
c) To represent the impact of the collaboration upon group members and its
implications.
Spiritual principles forming the subject matter of the feasibility study also had an impact
on the Steering group, which may be described as “unlocking” of spiritual reflection

31
and growth, to use another meaning of the word “lock”. The facilitatory techniques for
communication access enabled members to engage with the topic of spirituality, some
for the first time. Within Cycle 1, to ensure full concentration on the evaluation, when
sorting questions, the author discouraged members from answering them directly, but it
was clear they were starting to do so. As coproduction proceeded and group cohesion
increased, engaging with spirituality became more compelling and members were
increasingly ready to share their views concerning belief, faith, and religion, and hear
others. This impact may be attributed to the level of trust and sharing supported in the
group, the provision of access to terms, and to the nature of the prototype Toolkit with
its word and picture content (the latter being confirmed in the feasibility study itself).
Group cohesion was evident: members and the author all being committed volunteers,
members arriving early for meetings to greet each-other enthusiastically, spontaneously
embracing, choosing to contribute shared biscuits, and deepening an atmosphere of
respect for a wide range of standpoints described, including atheism, theism, secularism,
and agnosticism.
Individual feedback showed that group members applied aspects of the content
to themselves and were challenged to reflect upon their own spirituality. Though the
researcher steered the discussion back to aspects of “common ground” it was clear that
members were actively engaging with the Toolkit materials being developed and
checked, confirming the intention for the Toolkit to encourage such thought processes.
The increased engagement of members over successive meetings of the Steering group
brought an ethical tension. Strict principles agreed by NHS ethics and governance did
not favour members engaging more deeply with the materials, but nonetheless, just like
the movement of water in a lock brings a change in level, the process of group

32
engagement with spiritual topics signified spiritual “unlocking” in the people
participating. According to a member with mild aphasia:
“By working as a group we actually demonstrated spirituality. We all…b…had our
own thoughts, ideals and we got together. And we all started going down the
same…stream of thought and ideals, hopefully to the benefit of other folk who are
considering spirituality and what spirituality means”.
Such observations accord with reflections by Koshy et al. (2010) that action research
enhances the life courses of those involved, including a greater understanding of self,
capacity for construction and analysis, witnessed in the coproduction despite the
presence of aphasia. The author experienced impact too, finding coproduction
rewarding and affirming, giving extra purpose and value to the research process. The
mutually cathartic impact on both author and members was acknowledged and
construed in terms of positive spiritual change. Author bias was considered within the
collaboration, there being no such thing as a neutral perspective. Whilst some potential
bias was mitigated by volunteer note-takers during meetings, the author role of
participant-observer was openly acknowledged. Reflexivity became inclusive rather
than just the province of the author, and the author role has been outlined in detail for
the purpose of judging credibility. Other aphasia researchers have explained the
importance of blurred boundaries between PPI work and qualitative research, including
the researcher role (McMenamin et al., 2022).
Further work
The coproduction process did not set out to elucidate individual perspectives about
spirituality in the context of aphasia, but this was taken up in the feasibility study,
leading to some detailed reports (Mumby & Roddam, 2021; Mumby, 2019) including
experience from having logopenic aphasia (Mumby, 2023b). There is further scope to

33
explore this complex area of enquiry, including issues raised in the PPI process, such as
the role of mental health, and change in spiritual health over time, which form the focus
of a current study by the author.
If applied in contexts outside aphasia research, the PPI approach described
would promote good communication, as people with aphasia acted as gatekeepers of
communication access. The principles may be considered for application in studies
involving people with dementia, for example. The results also have additional spiritual
implications for those who have no aphasia. The WELLHEAD Toolkit and the
principles from this study may present a fresh lens for looking at spirituality, people
without aphasia also being potential users of the Toolkit, current work investigating its
use with older people without aphasia. More than just a resource for aphasia, the Toolkit
could offer an accessible format for others exploring their spirituality: a resource for
supporting a one-to-one interview about spiritual health, incorporating self-score
outcome measures and goal-setting (Mumby, 2022). In its published format, which
includes a detailed manual, it is suitable for adoption beyond SLT, for multi-
professional use.
This paper did not set out to ask theological questions such as, “Does
simplifying language alter the theological approach?”, “Does aphasic language alter the
experience of spirituality?”, which may offer alternative avenues for enquiry.
Nonetheless, the narrative has shown scope for people with aphasia to benefit from
communication access techniques and resources, so that they can more readily engage
with words in exploring spirituality both in their communications and in their internal
reflections. Unlocking the perceptions of people with aphasia has not only embedded
them in the WELLHEAD Toolkit, but it has also shown the importance of process as

34
well as product – the co-creation which enables people to experience fulfilment and
spiritual growth.
Conclusion
Unlocking the perceptions of people with aphasia had three aspects. Firstly, by
providing suitable communication access, people with aphasia took part at each
successive stage of shaping the spirituality research before it moved forward, like locks
on a canal system. People with wide-ranging communication and additional sensory and
cognitive impairments partnered in coproduction at multiple stages in the research,
despite the abstract and potentially challenging subject matter. This partnership was
enabled via the techniques and stages which have been described. Secondly,
coproduction included shaping the WELLHEAD Toolkit for assessing and supporting
spiritual health. It incorporated reflections about access and accessibility, verification,
and the opportunities for application, anchoring future developments. Thirdly, the
coproduction process also ‘unlocked’ new insights in the people with aphasia shaping
the research with the author, as well as in the author. The impact upon their own
spiritual wellbeing and awareness has been attributed both to the content of the
WELLHEAD Toolkit and to their group interactions. In summary, the paper
demonstrates how the contribution of people with communication disability gave rise to
the final version of the WELLHEAD Toolkit, a multi-professional resource. It is
accessible for those with aphasia even with mild-moderate cognitive impairment.
Beyond this it offers a religiously inclusive resource for assessing and supporting
spiritual health.

35
Acknowledgments
All the Steering group members, including Eriks Erdmanis, Marie Flood, John Hawkins and
Jennifer Stephens are acknowledged and quoted with their consent. Sadly, John died before the
work was completed. Revd. Capt. David Grace, Chaplain to Weston Area Health NHS Trust,
UK, provided input concerning chaplaincy perspectives, and safeguarding for those involved.
Hospital Volunteers Savvas Michael and Joanne Kumar took notes in the groups, and Hospital
Volunteer Adrian Wilmot who was also a Steering group member gave his support. Professor
Karen Sage and Dr Hazel Roddam gave encouragement and insight. The author was supported
with extra contractual hours within Weston Area Health NHS Trust, UK, with the support of
Harvey Dymond, (R&D lead) for undertaking the literature review and funding applications, but
due to the preliminary nature of a feasibility study the PPI work was undertaken voluntarily.
Declaration of interest statement
The author reports no conflict of interest. Recent publication of the WELLHEAD Toolkit took
place four years after completion of the research, and all activity was undertaken by the author
on a voluntary basis.

36
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Table 1: Summary results from sorting the components of SHALOM
SHALOM domains
Questions
containing
Hard
words
Questions
containing
Hard
Topics
Corresponding
WELLHEAD
dimensions
Personal
2
2
DEEP
Communal
0
2
WIDE
Environmental
1
0
WIDE
Transcendental
3
5
HIGH
Proportion of Hard
questions
6/20
(30%)
9/20
(45%)
Proportion of Easy
questions
14/20
(70%)
11/20
(55%)

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Table 2: Summary results from sorting the components of WHOQOL-SRPB BREF
WHOQOL-SRPB BREF
domains
Questions
containing
Hard
words
Questions
containing
Hard
Topics
Corresponding
WELLHEAD
dimensions
S1 Connection to a spiritual being
4
3
HIGH
S2 Meaning and purpose in life
0
2
Central to
WELLHEAD
S3 Awe and wonder
0
0
WIDE
S4 Wholeness and integration
4
3
DEEP
S5 Spiritual strength
2
0
DEEP
S6 Inner peace
3
0
DEEP
S7 Hope and optimism
0
0
DEEP
S8 Faith
0
1
HIGH?
Proportion of Hard questions
13/32
(41%)
9/32
(28%)
Proportion of Undecided
questions
4/32
(12%)
8/32
(25%)
Proportion of Easy questions
15/32
(47%)
15/32
(47%)

45
Figures:
Figure 1. Flow chart showing the study development
Figure 2. The research cycles represented as successive locks on a canal.

46
Figure 3. The revised WELLHEAD framework (reproduced from the WELLHEAD
Toolkit (Mumby, 2022), with permission).

47
Figure 4. Different viewpoints: (a) Uphill church photographed from the Steering group
venue. (b) Steering group venue photographed from Uphill church. (photographs
contributed by Steering group members).

48