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Design Meets Death: Emergent Issues in a Research
Study on Reimagining ‘Legacy’ in the Context of
Paediatric Palliative Care
Farnaz Nickpoura*, Lynda Brookb, Ming Limc, Scott Gauled
a University of Liverpool, School of Engineering, Division of Industrial Design, United Kingdom
b Alder Hey Children's NHS Foundation Trust, Specialist Palliative Care Services, United Kingdom
c University of Liverpool, Management School, United Kingdom
d Alder Hey Children's NHS Foundation Trust, Specialist Palliative Care Services, United Kingdom
*Corresponding author e-mail: Farnaz.Nickpour@liverpool.ac.uk
Abstract: ‘Legacy’ is a death-centred adult-oriented concept, conventionally defined
and narrowly imagined. Legacy making activities in palliative care are proven to
enhance sense-making and offer therapeutic benefits. However, research around
legacy and legacy making is limited in definition, outcome, and ambition. This paper
reports on an exploratory, interdisciplinary, design-led study aiming to reimagine
‘legacy’, in the sensitive and heavily under-studied context of paediatric palliative care.
An inclusive design approach is adopted and children and young people are focused
upon as the ‘lead design partners’ with potentially distinct and largely overlooked
voices and viewpoints in palliative care. Both chronological and thematic perspectives
are used to outline and discuss the issues and barriers emerged throughout the study.
Three overarching themes i.e. Conceptual; Ethical; and Operational are identified as
key challenges. Critical reflections are summarised under three questions on Legacy,
Difficult conversations, and Life design. Future opportunities for research are outlined
under four recommendations.
Keywords: inclusive design; palliative care; legacy; paediatric
1. Introduction
“I don’t see the point of measuring life in terms of time any more. I would rather measure it in
terms of what I actually achieve. I’d rather measure it in terms of making a difference.”
(17-year-old boy shortly before he died of cancer, 2017)
1.1 Palliative and end-of-life care
Arguments within the healthcare world around patient-centred care (Kane et al., 2015),
patient-reported outcomes (Aslakson et al., 2017) and personalised medicine (Lloyd-
Williams et al., 2008) resonate strongly with the wider recognition of the need to reclaim
and reimagine end-of-life as a ‘human’, rather than a mere ‘medical’ domain (Davies, 2018),
raising questions around power, control, and singular expertise in end-of-life (Author, 2019).
This is further aligned with the rapidly growing evidence base in the design world, on
recognition of the individuals’ right and desire to reclaim, reimagine, and design their own
palliative and end-of-life experience in meaningful & desirable ways (End Well Symposium,
2019; Reimagine End of Life, 2018; HELIX, 2015; Open IDEO, 2014).
In the context of paediatric palliative care however, less is known amongst healthcare
professionals about how children and young people make sense of their end-of-life
experiences (Langton-Gilks, 2017; Warner et al., 2016). Approaches typically used for
conducting end-of-life conversations in the adult setting have proven to be ineffective in
paediatrics (Pease & McMillin, 2018) due to complexities including consent and legal
authority (Thieleman et al., 2016). On the other hand, research leading to an awareness
among the public and healthcare professionals of how Children and Young People (CYP)
perceive their end of life experience is severely underdeveloped, and much needed (Jones &
Weisenfluh, 2003). Consequently, there is, to date, no coherent framework for different
disciplines in the biological, social and human sciences to work together to improve end-of-
life care for CYP (Langton-Gilks, 2017; Behrman & Field, 2003).
Young adults with life limiting and life-threatening conditions have emphasised the
importance of having discussions about death and dying supported by professionals and
carers. Interestingly, they also note, efforts should be made to get to know them and their
values prior to broaching difficult matters, further highlighting the need for engagements
oriented around life, rather than death (Together for Short Lives, 2015). A need for
practitioners to work more openly, proactively, and collaboratively with families has also
been highlighted (Coad et al., 2014).
1.2 Legacy
A key construct in how individuals envisage their ‘end of life’ is that of ‘legacy.’ The concept
of ‘legacy’ is conventionally understood in adult terms and commonly and narrowly defined
as something handed down to a predecessor; the remains of a person, material and/or
imagined, that lives on, once they have passed on. Hence, in its current limited definition,
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framed through an ‘after-death’ perspective, immediately relevant to every dying rather
than living person. Such death-oriented understanding, has also been shown to permeate
how adults perceive and conceive of the term when referring to children and young people’s
legacy. Legacy-making activities offer a range of therapeutic benefits and have been
identified as a significant enterprise with end-of-life design potentials for adults, enhancing
sense-making, familial communication and positive emotional experiences (Allen, 2009).
An evidence base is beginning to emerge, which explores the meaning and impact of legacy
and legacy-making in the experiences of children and young people with life-limiting and life-
threatening conditions, and their Significant Others
1
(SO) (Ackard et al., 2013). However,
more often this has been gauged through the perspectives of health professionals (Foster et
al., 2012) or bereaved parents (Foster, 2009). We still know little about how children and
young people make sense of their own legacy, how they define and understand the term, as
well as their preferences for talking about it in accessible and meaningful ways (Foster et al.,
2012).
Moreover, significant differences could be anticipated in how life legacy is perceived,
defined, and envisioned by CYP, compared to adults. This could be due to variances in
awareness of, and adherence to socio-cultural norms and structures; imaginative and
creative thinking; theories of self and personal meaning; length of life experience.
In reimagining legacy, the focus on children and young people would not only ensure their
voices and visions are central to paediatric palliative care, but also add a novel and
potentially significant take on the whole concept of ‘legacy’. Hence, potentially enhancing,
challenging and revitalising its current limited perception and potential.
1.3 Design
Beyond a process of opportunity framing and problem solving (Lawson 2007; Cross, 2006),
design is an act of meaning creating (Krippendorff, K. 2006). The creative, generative,
futuristic, and empathic mindset and practices of design (Johansson-Sköldberg et al., 2013)
has a lot to offer to palliative and end-of-life care (Nickpour, 2019) and could inform the
process of reimagining legacy. In particular, a human centred (Giacomin, 2015) and inclusive
design (Clarkson et al., 2003) approach would ensure that the voices and multi-faceted
experiences of users are central to every stage of the design process. Putting the extreme
voices and experiences of children at the centre of reimagining legacy can be particularly
helpful in challenging and innovating upon the concept for all.
An inclusive design approach implies identifying, empathising, and ultimately designing with
those often ignored or excluded user groups at the peripheries, whose experiences pose the
most extreme and diverse design challenges and constraints. Such focus on moving beyond
1
By ‘significant others,’ we refer to those individuals who are both biologically related to, and also provide tangible as well
as intangible support for, the child or young person in care. Thus, this category includes parents, siblings, grandparents,
aunts, uncles and cousins.
the mainstream and bringing the extreme to the centre, could in turn offer rich insights,
alternative novel perspectives, and lead to better-informed design challenges, re-framed
opportunities, and innovative solutions that benefit all.
2. Research aims and questions
2.1 Scope and Aim
A range of gaps, limitations, and opportunities were identified within the current knowledge
and applications of legacy in the context of palliative care. These included the narrow,
death-focused, and adult-oriented existing definitions and dimensions; limited creative and
generative outputs; lack of child-centred exploratory research on the topic; multiple
confirmed benefits of legacy-making activities; and potential unexplored impacts of
reimagined legacy-making activities on life trajectory and health outcomes.
Hence, an interdisciplinary design-led study was planned, aiming to reimagine legacy in the
context of paediatric palliative care. The research study was co-defined and co-led by an
interdisciplinary team of senior clinicians from a children’s hospital and academics, coming
from three distinct fields i.e. Paediatric palliative care, Design, and Management.
2.2 Research questions
Accordingly, four research questions were outlined;
1. How might CYP receiving palliative care, reimagine their ‘legacy’?
2. How might CYP’s SO, reimagine notions of ‘legacy’?
3. Based on the data from (RQ1) and (RQ2), how might CYP and their SO co-define,
co-capture and co-curate ‘legacy’ in ways that are cognitively, emotionally,
spiritually and psychologically satisfying to all concerned?
4. How might legacy-making activities impact life trajectory and health outcomes in
CYP and their SO?
The notion of ‘legacy is for all’ underpinned the exploratory research, aiming for a mentality
shift in focusing on legacy as a life-centred, ongoing, dynamic, imaginative, and inclusive
concept – for all those living, rather than only for those dying. CYP were seen as one
progressive, distinctive and uncontaminated voice to help reimagine legacy. Furthermore, by
adopting the concept of legacy as a hook, and through use of generative and creative
processes and methods, the study aimed to open up spaces of dialogue around a meaningful
life, what CYP wanted to achieve alongside, and how they wanted others to know about or
remember them. Figure 1 captures the different approach to ‘legacy’ in the context of this
study.
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Figure 1. Legacy, a different take; LEGACY reimagined as an ongoing unending concept versus
‘HISTORY’ as a past concept
3. Study design and Development
Table 1 outlines the study plan comprising multiple stages, running across a 12-month
period.
Table 1 Legacy Study plan running across 12 months
Stage & Activity
Length
(month)
Review literature on the overarching areas of legacy, CYP, and design
3
Design Initial Legacy-making ‘Creative Session’, structured around RQs
1, 2 and 3, and informed by the literature review
1
Review initial session design by Steering Committee
0.5
Apply for research ethical approval
2
Recruit participants by approaching guardians for initial interest, if
positive, followed by provision of information sheet, followed by a
meeting with clinical team conducting the session, who will explain the
study in detail and seek consent if the guardian and CYP is agreeable
2
Pilot three Legacy-making ‘Creative Sessions’ conducted with three
eligible CYP and their SO
1
Review and finalise the ‘Creative Session’ by study Steering Committee
0.5
Conduct eight Legacy-making ‘Creative Sessions’ with CYP and their SO
8
Design ‘Reflection Session’ including semi-structured qualitative
interviews with CYP, their SO, and facilitating staff
1
Review ‘Reflection Session’ by Steering Committee
0.5
Conduct ‘Reflection Session’ with participants involved in Creative
Session
8
Data analysis
9
3.1 Ethics and Governance
A substantial ethical approval application was planned for approval by Integrated Research
Application System (IRAS) which is the notional body for health, social and community care
research permissions and approvals in the UK.
3.2 Sample and Recruitment
The concept of “legacy is for everyone” underpinned the recruitment strategy. Hence, all
Children and Young People (CYP) diagnosed with a life limiting condition and their Significant
Others (SO) who were referred to the participating hospital’s Specialist Palliative Care team,
were considered eligible to participate in the research. Additionally, a clear inclusion and
exclusion criteria was outlined to be carefully considered by Specialist Palliative Care team
on a case by case basis. Table 2 outlines the study inclusion and exclusion criteria.
Table 2 Inclusion/Exclusion Criteria for participation in the Legacy Study
Inclusion Criteria
Exclusion Criteria
CYP with life limiting conditions
referred to the Specialist Palliative
Care team at the children’s hospital
Deemed too unwell/too advanced/
not suitable by Paediatric Palliative
Care Multidisciplinary team
SO of CYP referred to the Specialist
Palliative Care team
Parent or guardian not providing
informed consent
CYP Aged 4-18
CYP aged below 4 or above 18
CYP not providing assent
3.3 Stakeholders Mapping & Steering Committee
Due to the exploratory, complex, and sensitive nature of the research, an interdisciplinary
group of stakeholders, who work with the target population in different capacities, were
mapped. These stakeholders were also invited to join the study as the Steering Committee.
They met regularly as a team, and were consulted separately where needed to review,
advise, and steer the study. Figure 2 represents the Steering Committee’s spread of
expertise and perspectives.
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Figure 2 Legacy Study stakeholder mapping and Steering committee members
The initial study design was reviewed by committee members including two bereaved
parents, a music therapist, a clinical psychologist, a patient and parent participation
facilitator, and a bereavement counsellor.
4. Issues and Barriers
The study progressed into pilot phase but did not reach the Legacy-making Creative Session
stage, due to a number of issues and barriers. Both chronological and thematic perspectives
are used to outline these emergent issues. Firstly, an account of specific issues faced at
different stages of the study is provided. Secondly, all barriers are categorised under three
over-arching, inter-linking themes.
4.1 Chronological issues
4.1.1 CYP profile
The inclusion criteria at the onset of study, included CYP aged 4-18, with normal global
development and verbal communication, enrolled on a palliative pathway. This however,
needed to be reviewed, in order to ensure CYP were fully involved and their distinct
individual voices were captured. It was commonly understood that adolescence was the age,
when children began to form their own distinct identity and voice (Briggs, 2002). However,
in the context of paediatric palliative care, the confounding factors were the often multiple
complex health and social difficulties that accompanied these young people, affecting their
development and their ability to verbally communicate.
Accordingly, the participation age was revised as 11-18. Furthermore, a narrow band of
specialties i.e. Cardiac, Duchenne Muscular Dystrophy, and Oncology was focused upon,
where CYP were more likely to have typical developmental and communication abilities, to
participate with personal agency, see Figure 3. Despite the inclusive “Legacy is for Everyone”
remit of the study, the time and budget limitations did not allow specialist support to
facilitate participation of CYP with developmental and communication gaps. This excluded
certain voices and reduced the already small number of potential participants.
Figure 3 Re-focused CYP participant profile
4.1.2 Public and participant framing
The intention was to help reimagine legacy for everyone through an inclusive design
approach. However, a necessary ethical and practical consideration in recruitment strategy,
was to redress the real possibilities for misunderstanding the concept of legacy, and the
overall study, in participant-facing communication.
It was acknowledged that framing the initiative through the lens of legacy, could cause
negative emotions, depending on previous conversations regarding the CYP’s condition, and
the meaning attached to their prognosis.
From a clinical psychology perspective, the introduction of the study to a potential CYP and
their family, could irrevocably challenge the understanding of the family, and the knowledge
and understanding the CYP might have of their condition. Such a situation could only be
mitigated through communication with the network of healthcare professionals and others
involved in care of the CYP, in order to establish where a given family were in their journey,
prior to approaching them for participation.
As a rejoinder to this issue, it was decided to explicitly use the term ‘legacy’ in
communications and public framing, to maintain the project’s integrity, and to keep intact
transparency regarding its intentions. The project heading “Legacy is for Everyone”
attempted to convey the relevance of legacy, and participant information sheets, helped to
9
explain in positive terms, how engagement with legacy, could help people think about what
they wanted to do with their lives and their wishes and hopes. Hence, an attempt was made
to challenge default perspectives, aligned to death and passing on, by including broad
interpretations of the term.
4.1.3 Study design
• Adding an ‘orientation’ phase
Interdisciplinary input from Steering Committee helped identify further issues around
introduction, framing, accessibility and vulnerability, and gatekeeping, prior to participation
in the Creative Session. Hence, an initial ‘Orientation session’ was added to the ‘Creative
Session’ and ‘Reflection Session’ already planned. This was in order to better introduce the
study to participants; include preparatory work to help inspire and orient both CYP and their
SO; conduct a ‘pulse check’ in order to identify unique circumstances, current paths, and
customise support needs; apply a sensitive stepped approach to make the study accessible
and meaningful.
• Separation of CYP and SO sessions
The main premise of the study was to elicit the distinct voices of CYP. However, within the
sensitive and extreme context of paediatric palliative care, the parent or adult caregiver
were repeatedly reported to gatekeep participation and speak on behalf of the CYP. Hence,
CYP and SO sessions were separated in order to ensure CYP’s narratives. This, however,
raised further issues around unsupported separation of CYP from their SO, which could put
CYP, SO, and the researchers in a vulnerable position.
• Framing & Format
A pilot session with teenagers in a palliative care support group, confirmed issues around
framing and terminology. Young people at the group struggled with finding meaning in the
concept of legacy, which needed to be further unpacked and illustrated with reference to
different examples of legacy making. There was a tangible sense that legacy, was not
something that was part of their everyday language and experiences, or held age-
appropriate significance.
Young people also noted that the project had to be engaging and fun and provide relevant
and appropriate opportunities to think through their lives, in meaningful ways. Tapping into
contemporary teenage interests, popular culture e.g. music and digital games, and
interesting ‘hands-on’ ways of generating information and insights, were specifically noted
as potential hooks.
4.1.4 Pilot phase
• Recruitment
Recruitment for pilot phase was led by stakeholder groups who worked closely with CYP and
their SO. Early on, the senior consultant co-leading the project had to leave the study due to
unforeseen circumstances. This significantly impacted the recruitment as the consultant was
well respected as a strong authority and gatekeeper in terms of recruitment, trust and
gatekeeping. This raised issues around the sensitive nature, gatekeeping, and hierarchy of
power, authority and expertise in conducting research. Targeting strategies were devised by
expert stakeholders based on perceived ability to engage with the activities and appropriate
resilience and coping strategies. This raised issues around sample size and purposeful
sampling.
A general lack of interest and poor response rate to the pilot initiative was reported by
gatekeepers. Introducing the project under the banner of ‘Legacy’ seemed a barrier to
participation. More often the term ‘legacy’ was understood by parents, in terms of its ‘after-
death’ meaning. Overall, the framing of interventions associated with end-of-life and death
were not seen as sympathetic with the cultural context of oncology, for example, where
narratives of hope and survivorship predominate.
Figure 4 ‘Tree of Life’ exercise
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• Creative Workshop
The pilot was introduced as part of a legacy project, giving an opportunity for CYP and SO to
reflect on their lives, what they had done, the relationships they had made, what they
wanted to do in the future and how they could make their own unique mark on the world.
Tree of Life method used predominantly in narrative therapy, (see Figure 4) was presented
and participants were invited to reflect on their own lives in relation to each dimension of
the tree.
The Tree of Life exercise was generally well received by the CYP as a clear, engaging and
meaningful activity. CYP noted that it helped them think about matters not already
considered. At the same time, they struggled with the branches level (hopes and dreams).
This brought to surface, the inherently different nature of sense of future, perspective and
trajectory of life in this context. And while a significant finding in itself, it was seen as a
potential negative trigger, reminding CYP of their prognosis.
The small number of participants (2 CYP) was seen as a barrier. Additionally, the invasive
nature and considerable level of help needed from support workers to complete typical
workshop activities e.g. scribbling or drawing, impacted the information privacy and agency
of CYP. Hence, the nature of data collected, was seen as major accessibly and gatekeeping
challenges. CYP noted that participants should be given a choice of whether, or not to talk
about their tree with the facilitator (for some, this might be considered private information).
4.2 Thematic issues
Various issues captured chronologically, are classified under three overarching themes, and
discussed here.
4.2.1 Conceptual; Perceptions of legacy in paediatric research
There are challenges in engaging with, or implying, death in paediatric legacy interventions,
which can be mis/understood as taking away hope and associated agency from the
perspective of adults involved. Accordingly, researchers and practitioners using legacy
interventions, have reported various difficulties in framing their work.
A key barrier, was the research focus itself, that of legacy. The impact and consequences of
using legacy as an explicit framing device, was noted in both adult and CYP participant
groups, across study design, gatekeeping, and recruitment.
Perspectives and attitudes towards legacy vary depending on age and position; while there is
an implied onus on a post-death perspective in adult perceptions including SO (Ackard et al.,
2013) and healthcare professional (Foster et al., 2012), CYP have differing viewpoints.
Ackard et al. (2013) explored children with cancer’s interest in legacy-making and contrary
to what the research team anticipated, child participants aged 7 to 12, did not articulate or
stress end-of-life concerns. Instead they expressed their wishes for others to know about:
their personal characteristics; things they like to do, and; their connectedness with and love
for others.
Such perception has also been uncovered in health care professional’s reflections on
interventions in paediatric palliative care settings (Foster et al., 2012). A thematic analysis of
key perspectives noted that legacy-making activities are more often introduced at the very
end of the child or young person’s life, reinforcing the connection between legacy-making
and the termination of life. Interestingly, in qualifying this perspective and endorsing the
need for legacy-making interventions at an earlier point, paediatric health care
professionals, noted that legacy making interventions could add considerable value to child
‘survivors’, providing a tangible record of their journey (Foster et al., 2012), opening up new
possibilities for the application of legacy interventions. This near uniform adult meaning
attributed to legacy, turned the concept, in its context of vulnerability and life-limiting
conditions, into something akin to a ‘hot potato’ that no one was particularly keen on
handling.
CYP’s feedback also revealed that the term didn’t resonate with them and was neither a
relevant term to them as teenagers, nor allowed much scope to explore and make sense of
their individual life circumstances.
From a study design point of view, the time, resources, and coordination required to prepare
the study sensitively for the target population were significantly increased considering the
very nature of ‘legacy’.
4.2.2 Ethical; Flexibility, gatekeeping and inclusivity
The nuances and sensitivities of employing the concept of legacy in paediatric contexts, has
also been discussed in relation to the ethics of practice.
• Flexibility
Building on the seminal work of Bluebond-Langner (1978), Moxley-Haegart (2015) attempts
to articulate to parents and primary care-givers, the CYP’s capacity to talk about death, and
employs alternate approaches to legacy-making that respond to, and are led by the CYP and
SO. These approaches move between ‘open awareness’, where it is safe to talk about death
and, ‘mutual pretence’ where CYP have trouble talking about death. This has led Moxley-
Haegart to omit the term ‘legacy’ when working with some CYP, adopting alternative frames
of reference that still enable meaningful engagement with legacy-making activities, such as:
‘a project which lets others learn about us’; ‘messages for family and friends’; ‘a way of
helping others who might have similar experiences’.
• Gatekeeping
Gatekeeper refers to an adult able to control or limit researchers’ access to participants.
Gatekeepers have a positive function in ensuring that children are protected from research
that could potentially be exploitative, invasive or coercive (Royal College of Paediatrics and
Child Health Ethics Advisory Committee 2000).
The default perception in paediatric research, paints a picture of CYP as ‘vulnerable’
research subjects that need protection, placing responsibility onto adults to monitor and
control access (Carter, 2009). While this can promote a keen and necessary safeguarding
13
sensibility, it can also constrain and downplay children’s abilities, competencies and
understandings (Campbell, 2008). It also impacts on the perception of research and the
position of researchers as potentially ‘dangerous’ (Carter, 2009).
In paediatric palliative settings, the notion of vulnerability is amplified by an order of
magnitude, and argued to impact opportunities for CYP to participate and have their voices
heard (Carter, 2009). In other related research, clinical gatekeepers excluded eligible families
due to: perceived burden research would place on the family and their well-being (Beecham
et al., 2016; Stevens et al., 2010; Shilling et al., 2011); concerns about anticipated benefits
(Westcombe et al., 2003) as well as; the likely impact on patient/family-professional
relationships (Castell, 2006).
Accordingly, many studies are hampered by low rates of invitation (Hinds at al., 2007), the
highest refusal rates (Gattuso et al., 2006), and identifying issues with recruitment
(Tomlinson et al., 2007) due to gatekeepers deeming research with CYP and families, as
inappropriate (Crocker at al., 2015).
In the context of this study, all the above were observed to be true. The explicit focus on
legacy impacted most acutely on adult stakeholders’ protection of perceived ‘vulnerable’
CYP and their SO, and monitoring and controlling access to the study.
In discussing all these ethical barriers, Tomlinson et al (2007) make a crucial point that whilst
research in paediatric palliative care contexts can touch on extremely sensitive issues, none-
the-less, research is still required, and perhaps more so, to better understand the context
and its challenges, and to help uncover insights and strategies to support CYP and their
families.
• Inclusivity
Issues of accessibly and inclusion were also paramount. Some stakeholders acknowledged
perceived difficulties in recruiting and bringing together CYP from different specialities in the
peer-based Creative Session. In more detail, it was felt that such a scenario could bring
together CYP at different stages in the journey, privy to different interpretations about the
meaning of their condition, as well as create issues in group dynamics.
In addition, the stakeholders noted that the resources required to support the participation
of CYP and SO, could prevent potential participants’ access to and inclusion in the initiative.
These were mainly due to complex and diverse range of CYP support needs, as well as
logistical difficulties of bringing together CYP and their SO from across a vast geographical
area.
4.2.3 Operational; Preparation and groundwork
Beecham et al. (2016) summarise operational barriers to conducting paediatric palliative
care as limited time and other resources, small sample sizes, limited funding, difficulties with
research ethics committees, the unpredictable nature of the illnesses and professional
perceptions of the potential physical and psychological burden for participants.
Additional time needs to be afforded to setting up research in paediatric health settings
(Coyne, 2010), with the groundwork required to carry out research, even more time, support
and resource intensive in palliative settings (Tomlinson et al., 2007). This matched the
findings from this exploratory interdisciplinary study, leading to time slippage in
implementation plan. It could be argued that the effort, time and resources required to
undertake research in this context were too great for an exploratory study of this size.
Early involvement of stakeholders in applied health research is understood as crucial in
ensuring the relevance and cultural competence of research (NIHR, 2015). This would seem
even more necessary in sensitive contexts, such as paediatric palliative care (Tomlinson et
al., 2007). In assessing challenges in conducting paediatric palliative research, Tomlinson et
al. (2007) identified project completion success criteria, which included engaging the
opinions of key stakeholders, and crucially families, at an early stage including their
involvement in study design. While the study was co-designed with key stakeholders, this
was not considered detailed enough in order to hit the ground running, alluding to the highly
complex, sensitive, exploratory, and interdisciplinary nature of the project. In this context,
the study was deemed as ambitious, and underfunded.
5. Insights and Recommendations
5.1 Insights
5.1.1 Legacy is (not) for everyone?
One major point of discussion is if and how to best communicate the explicit focus
on a challenging concept such as legacy, while the aim is to reimagine that very
concept. The study’s underpinning “Legacy is for Everyone”, attempted to convey
an obvious yet sensitive insight. In the context of paediatric palliative care however,
adult stakeholders and gatekeepers perceived engagement with it as too sensitive
for majority of the target population. As with CYP, the concept did not seem to
have enough relevance or traction.
5.1.2 Difficult conversation are for everyone?
There is evidence that timely difficult conversations can support better outcomes in
paediatric palliative care (Jack et al., 2018; Coad et al., 2014; Lotz et al., 2013;
Dyregrov, 2004; Scott et al., 2002). Research can pose difficult conversations that
haven’t happened, but could, and perhaps need to. There is an evident need for
CYP and their SO to enter this conversational space.
The challenges identified in this study are not limited to its specific scope, but
reflect on broader systemic and palliative care disciplinary challenges. They also
reflect on the organisational culture within a children’s hospital that has to deliver
within extremely complex and sensitive boundaries, whilst also encourage efforts
to make boundary crossings into difficult conversation spaces, worthwhile. CYP and
SO need evidence and confidence that more open and potentially difficult
15
conversations can enrich the journey. Equally, adult stakeholders and gatekeepers
need evidence and support on why and how to navigate such vulnerable, yet
potentially invaluable pathways. The adopted design approaches could be re-
purposed to facilitate entering the difficult conversations space, in a creative and
inclusive manner.
5.1.3 Life design is for everyone?
Beyond its ‘legacy’ focus and the healthy tensions embedded within it, this study
intended to promote and enhance CYP’s agency by adopting a human centred and
inclusive design approach. Design’s empathic and imaginative approach was
deemed suitable in both eliciting how CYP define and evaluate their lives, as well as
ideating and leading what CYP want to do with its remainder.
Design and making opportunities are not only expressive but inherently linked to
connecting with others (Gauntlett, 2018). These acts of creating, making, and
connecting can help CYP and SO navigate the palliative and end-of-life landscape,
and communicate and develop coping resources and strategies (Foster at al., 2015).
A design-led mindset to CYP life, could assert more agency about the what, when,
why, how and with whom of their lives.
5.2 Recommendations
5.2.1 Planning for systematic, extensive and extended research co-design phase
with a well-orchestrated network of interdisciplinary expert and lived
experience stakeholders.
5.2.2 Capturing paediatric palliative care stakeholders’ existing practices and
experiences of engaging in difficult conversations with CYP and their SO. This
will be instrumental in better adoption and adaption of design approaches to
enhance and facilitate difficult conversations.
5.2.3 Linking challenges identified in this study to broader, deep-rooted systemic
and organisational challenges in engaging paediatric service users and their
significant others, within a default culture of parental and adult gatekeeping.
Without acknowledgement of such systems issues, any project within similar
realms, will likely fall short.
5.2.4 Exploring diverse and truly inclusive methods of participation where neither
creativity of process or output, nor agency and privacy of CYP is
compromised. Given the complexity of CYPs and SO lives on the palliative
pathway, alternatives to a one size fits all data collection phase, should be
considered.
6. References
Ackard et al. (2013). From Qualitative Work to Intervention Development in Pediatric Oncology
Palliative Care Research, Journal of Pediatric Oncology Nursing, 30 (3), 153-160.
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About the Authors:
Author 1 Dr. Farnaz Nickpour is Reader in Inclusive Design and Human
Centre Innovation at the University of Liverpool. She leads the Inclusive
Design Studios and her research explores critical and contemporary
dimensions of design for inclusion across healthcare and mobility sectors.
Author 2 Dr. Lynda Brook is Macmillan Consultant in Paediatric Palliative
Care at Alder Hey Children’s Hospital. She chairs the Northwest Children’s
Palliative Care Network in the UK and is recognised internationally as a
leader in emerging speciality of Paediatric Palliative care.
Author 3 Dr. Ming Lim is Reader in Marketing, Technology and Ethics at
the University of Liverpool Management School. Her research focuses on
the ethics of medical humanities, social care technologies and consumer
behavior and theory in the context of emerging technologies.
Author 4 Dr. Scott Gaule is Public Involvement Lead at Alder Hey
Children's Hospital, and a freelance insight consultant. He is director at
Gizzago, a social enterprise using play and games to re-think the city and
promoting playful participation in urban living.
