Keywords

When the HEAL team was invited to work with the Paediatric Intensive Care Unit (PICU) at Queensland Children’s Hospital (QCH) in Brisbane, Australia in 2020–2021, the ‘PICU Liberation’ Team were already incorporating an innovative rehabilitation bundle of eight complementary steps to ‘liberate’ children from critical illness, including the engagement and empowerment of families in their child’s care [1]. However, they were concerned that the quality of their family-centred care (FCC) was being influenced by the constraints of the hospital systems, communication tools, and physical environment.

Family-centred care (FCC) concepts currently underpin the foundation of paediatric healthcare in many countries globally [2], however FCC practices vary worldwide and there are limited studies which demonstrate the impact the physical and social environments of the PICU can have on the development of collaborative parent-Health Care Professional (HCP) relationships. Butler, Copnell, and Hall [3] suggest that family-centred care principles be used to guide the design and development of both new and existing PICU environments, exploring both the physical layout and hospital policies and procedures, with attention given to elements that may exclude or restrict parental or family presence. Olausson, Ekebergh and Lindahl [4] further stress the importance of studying phenomenological perspectives (understanding the lived experiences of phenomena within the life-world) of patients, next-of-kin, and staff in the PICU when designing these complex, highly technical work and visiting spaces for care, recovery, and well-being. Despite this, paediatric intensive care unit environments in Australia are rarely designed to accommodate the user experience of families and staff with a focus on nurturing collaborative parent-HCP relationships. In this way, families and staff are not considered ‘equal’ in the design process.

Driven by these aspirations, and the three core principles of FCC: partnership, participation, and protection [5], the PICU Partnership Project transpired to enable the creation of a more therapeutic (comfortable, effective, meaningful, and supportive) physical, social, and digital environment for parents and families, meeting basic human needs in times of crisis, and providing a positive psychological long-term impact on families, their children, and the staff caring for them.

This chapter describes the process and outcomes of this values-led participatory design project to optimise family-centred care quality, utilising the early adoption of a metaphor, visualised as an architectural parti, to galvanise the collaboration of families (past and current), staff, hospital administration, and the design team in the process. Based on this diagram, four engagement and storytelling strategies were devised and implemented by professional and student designers, with derived findings informing idea generation for various communication and wayfinding tools and an interior redesign concept. The chapter highlights the value of using metaphor as a participatory design method focused on conceptualising a PICU culture embracing the true spirit of the African proverb ‘it takes a village to raise a child’.

1 The Design of Environments for Paediatric Family-Centred Care

The admission of a child into a critical care hospital setting can be extremely stressful for the child, parent, and family, especially if the illness is chronic, life-limiting, life-threatening, or where end-of-life care decisions or death occurs [6]. For parents, stress and anxiety, not only due to their child’s illness, treatment, their parental role change, and potentially their child’s appearance, but also the healthcare environment and relationships with HCPs [7], have shown to impact on their ability to comprehend information, make informed decisions, and function as normal [8,9,10]. When designing a PICU environment, it must be considered that some individuals cope by seeking or monitoring information and others by distracting themselves [9].

Family-centred care (FCC) asserts that unlimited presence and involvement of the family, as equals in the child’s hospitalised care, will optimise the best outcomes for the child, family, and institution [11]. This is based on the principles of partnership—relating to the relationships of trust, honesty, equality, and respect upheld between the family, HCPs, and child in regards to care decisions [12]; participation—relating to the family and child having choice in the desired level and type of involvement; and protection—relating to upholding the rights of the child and parent to receive the best psychosocial, emotional, physical, and spiritual care [13].

While attitudes of both parents and HCPs no doubt impact upon relationships, numerous studies are identifying the influence of contextual elements such as the physical and social environment on the types and quality of relationships, sometimes reducing parents to the status of ‘visitor’ or ‘watcher’ instead of equal [3, 14]. For parents whose children’s conditions require them to spend protracted periods in hospital, these factors can have profound impacts on aspects of the three ‘P’s.

Findings suggest [3, 11] that in order to support the development of a collaborative parent-HCP relationship, primarily PICUs need to provide a welcoming, informative, and orienting environment for parents, with unrestricted access to their child, positive staff attitude, and simple entry procedures. Comfortable chairs, adequate bed spaces, and privacy facilitate prolonged visits and help maintain engagement in parental roles. The provision of resources for parental self-care, including facilities for showering, laundry, breaks, and the provision of food and drinks, also helps to foster positive relationships. Parents have identified that having a place to sleep in the hospital or PICU is an important yet frequently unmet need [15]. Encouragement to personalise the child’s bed space with items brought in from home enhances feelings of comfort and ownership of the environment, and increases parental sense of belonging [3]. It is also important to provide a child-friendly atmosphere to alleviate the stress for sibling visitation [15].

Family conferences are considered an essential forum for shared decision-making during a child’s stay in the PICU, from admission to after a child’s discharge or death. This necessitates a private place for meeting with interdisciplinary allied health professionals, allowing families adequate time, providing emotional comfort, and respecting cultural sensitivities around end of life [15]. Spaces for individual counselling by health professionals and peer support [9], as well as spaces for spiritual needs and play therapy [11], are also recommended.

Research also suggests that a PICU culture, subtly influencing these parent-HCP relationships, can also be demonstrated through the appropriate relaying of communication provided to parents explaining the environment and ‘rules’ [3]. The types and amount of information needed by parents during a PICU stay are wide ranging and include details of the child’s condition and care plans, language, long-term post discharge, and end-of-life discussions. This can be provided using many sources and mechanisms [9], with social media having potential benefits for caregivers of the critically ill [16].

2 The Queensland Children’s Hospital (QCH) PICU Partnership Project Design Challenge

To obtain an initial bird’s eye view and a quick understanding of the functioning and extent of the space, a floor plan of the QCH PICU was requested by the design team. This has been colour-coded (Fig. 1) to illustrate spatial zoning.

Fig. 1
An illustration depicts the layout of the structure with sections marked for each room and their respective corridors and hallways.

QCH PICU Level 4

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As a first impression, visitors enter the ward through a secure entrance on Level 4 of the hospital and must have pre-arranged access with administration staff or a social worker, as the current reception desk, which straddles both sides of this entrance, is largely unmanned and unwelcoming. A parent lounge, located adjacent but outside the main entrance (denoted in red), is able to be used by day surgery patients also using level 4, and is not dedicated to the PICU. From this central main corridor parents and families visit their child in either a Riverside (blue) room or Hillside (green) room.

Parents can freely access a large, shared balcony accessible by staff from their staff room (yellow), providing fresh air and an external view, at the end of the main corridor. This space is also used, with the aid of temporary screening, when required for end-of-life ceremonies. Other parental care spaces (denoted in yellow) are a small family room, including a kitchenette with seating and a dining table in a remote corner of the Riverside rooms, and a tiny enclosed expressing room for nursing mothers located near the main corridor with no access to natural light. Parents may meet social workers at a closed office near the entrance and be guided into enclosed hospital-controlled interview rooms for meetings with them or HCPs, again with no access to external views or natural light (denoted in orange).

An existing room (denoted in purple) at the rear of the Riverside rooms, equipped with shower, toilet and laundry facilities for parents, is now inaccessible and used for storage, which means parents and families must exit the PICU to use a bathroom shared with the day-surgery waiting area and then re-enter the ward with assistance from staff due to swipe card security protocols. They do not currently have access to any shower or laundry facilities. The QCH has been designed to store medical supplies and equipment in the basement, however, as these supplies are not accessible on weekends, this has resulted in spaces (e.g. corridors) in the ward being used for excess storage.

Initial guided observation around the QCH PICU along with the limited data collected from past parents and provided by the ‘PICU Liberation’ team, suggested five critical issues needed to be addressed in regard to their environment and communication, in order to improve their family-centred care. These issues relate to three identified key phases of ‘Welcoming expertise’, ‘Becoming a team’, and ‘Gradually disengaging’ [3] in the PICU:

  • Entry to PICU requires remodelling to improve the ‘hello’ and ‘goodbye’ experience through spatial identity and to signal a culture of support.

  • The spatial layout, visuals, and wayfinding provided in the PICU do not support easy navigation for parents to rooms, nor any understanding about the spaces available for parents to use for self-care. Access to assistance from various staff is also unclear, implying parents are unwelcome.

  • A central space, which houses easily-accessible parental self-care facilities such as kitchens, bathrooms, and laundry facilities, is required to service both Riverside and Hillside rooms. Additionally, more options for both private and public meeting and rest spaces for families to grieve or seek support from other families are required.

  • The location and lack of storage (leading to clutter) in rooms and corridors makes it more difficult for parents to find anything, including each other. There is a need for storage solutions for parents’ personal belongings, and to better locate equipment and supplies in the corridors and rooms of both Riverside and Hillside.

  • The visual communication for the PICU is inconsistent and unclear. Quick and easy support information and social media opportunities could be provided to parents when they enter the PICU to assist with navigation of the environment, post-discharge information, and the building of a support community for parents.

3 Defining the Conceptual Approach for Participation in the PICU Partnership Project

At the outset, to guarantee the success, ownership, and sustainability of the PICU Partnership Project, a HEAL PICU Partnership Key Stakeholder Committee was formed as a bridge between QUT Design Lab, HEAL, and QCH leadership for approvals, assistance, and guidance from the administrative arms of the hospital, including Facilities Management and Marketing Communications. Logistical participation of these 15 people, as well as the QCH PICU Liberation team (8 people), the QUT Design Lab team (7 people) QUT work-integrated learning students (7 people), and countless current and past parents and family members who consented to be involved in this project, demanded a transparent approach to inspire and galvanise a large group of participants towards shared values, common language, and mutually beneficial goals to enhance relationships.

With some understanding of family-centred care and evidence-based research on the design of PICU environments, the HEAL team, with approval from the ‘PICU Liberation’ team, agreed on a values-led participatory design (PD) approach for this project. A combination of an evidence-based approach and public participation in the development of interior design briefs for healthcare environments is advocated to ensure they support psychological and behavioural aspects relevant to patients’ healing processes, user perceptions of the healthcare experience, and staff, patient, and visitor morale and well-being [17].

Participatory Design (in the Scandinavian tradition) is a value-centred design approach committing to the democratic and collective shaping of a better future, in which the design process is as important as the final result and increases the chance that the outcome represents the values and meaning of the future users [18]. Participation empowers stakeholders and allows them to feel connected to the design process. But it is not just this participation that qualifies it as PD, but more importantly the negotiation of values—a ‘moral proposition’ [19] realised through participation. The HEAL project team aspired to the PD’s guiding principles, summarised as:

  • Equalising power relations

  • Utilising democratic practices

  • Paying attention to situation-based action which highlights people’s expertise of the day-to-day activities in work and other practices

  • Enabling mutual learning [20]

Values-led PD [21] further cultivates values and uses them to drive the approach, methods, and participation, not only considering the users’ and stakeholders’ values in the design process, but also taking into account the values that designers bring to the process during and after the design intervention and prior to action, in preparation for the process. In this approach, the designer assumes an a priori commitment using their “appreciative judgment of values” [21, p. 90] to cultivate and shape values though the dialogical process of emergence, development, and grounding. This dialogical approach is used to overcome value conflicts, with discussions, observations, visualisations, and interpretations creating opportunities for co-designers to question and renegotiate their values, sometimes leading to new conceptualisations [18]. Van der Velden and Mörtberg [18] discuss the ‘frontloading’ of certain values as part of design briefs in healthcare projects, understanding the design process as a ‘contact zone’ or space for value pluralism.

In architectural design projects, the designer’s personal interpretation using metaphor is considered to be an effective ‘frontloading’ problem-solving tool for dealing with design tasks, particularly in the creation of design concepts and the framing of design challenges, the definition of goals and constraints, and the mapping and application of structural relationships [22, 23]. Metaphors help designers (and co-designers) to understand abstract, unfamiliar, and ill-structured design problems by juxtaposing them with familiar situations, and can radically modify perceptions of a situation, bringing to mind new, unconventional ways of considering things to encourage creativity and novel solutions [22, 24].

In the case of the PICU Partnership Project, the design team very quickly extracted a logical spatial diagram from the provided floor plan (Fig. 2) to understand how the functional spatial relationships could be understood. Likening the layout of the hospital ward to a village, with Riverside and Hillside townships surrounding a central ‘Village Square’, enabled the project team to visualise and come to a collective agreement about a reduced scope and the desired outcomes for the initial project in the timeframe available. In architectural terms, this ‘parti’, derived from the French expression prenedre parti meaning ‘to make a choice’, represents a reductive abstraction or visual organising principle reflecting the subjective, quintessential, and formal expression of the core idea. It refers to the central and salient motif capturing the spirit of a design project.

Fig. 2
On the left is a layout of the plan and on the right layout is depicted for the structure where the riverside, village, and hillside are marked.

‘The Village’ Parti Conceptualisation

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In this project, reimagining the ‘Village Square’ of the PICU (traditionally an open and identifiable public space commonly found in the heart of a town and used for social community gatherings and communication), became the metaphor for activating the main central foyer and surrounding spaces of the PICU as a parent and staff hub—a welcoming, meaningful, healing environment supporting family and staff self-care and social connection. Once agreed by the project team and hospital administration, this ‘village approach’ became the driving brief for the project, galvanising designers and co-designers in a shared vision toward transforming this abstract concept into concrete innovative design solutions for FCC in the PICU.

The perspective of a ‘village approach’ has been discussed in health contexts in relation to service responses for families experiencing multiple adversities [25]. The phrase “it takes a village to raise a child” originates from an African proverb and conveys the meaning that it takes an entire community of people (‘the village’) to provide a safe and healthy environment which enables children to flourish and realise their hopes and dreams [25]. This phrase became our larger design concept for the project, steering both design process and outcomes.

Our ‘village environment’, with principles intuitively aligned to those of Reupert et al., [25], aimed to provide support and guidance to families living with the adversity of a sick child. This included conceptual principles of interdisciplinarity and interagency, assuming the collaboration of allied professionals and coordination of other family support, such as education and accommodation. The ‘village approach’ is developmental, strength-based, and prevention-focused, and promotes parental agency and empowerment, while also giving children a voice. It is also culturally sensitive, with feedback and evaluation processes built into village-focused practices and policies. In using this metaphorical reasoning for the purposes of the PICU Partnership Project, the designers assumed that all ‘villagers’ or visitors to the village had a shared responsibility to provide care to the children and/or support the parents to care for the children, thus aligning beautifully with the ideals of family-centred care.

4 Participatory Design Methods

PD methods and activities are central to creating an inclusive and democratic design process for the emergence of values and in engaging designers and co-designers in the expression and exploration of these values. All methods elicit “information, discussion, reflection and learning”, and some are particularly suited for “expressing, exploring and materialising values by engaging co-designers in telling, making and enacting use” [18, p. 11]. To support the initial observations and site audit, adhere in process to the principles of FCC, and to hone the interior design and visual communication brief around the ‘village’ concept, the HEAL design team instigated four engagement and storytelling strategies to encourage the participation of parents and staff [17] and gain different types of data providing insight into the themes of (1) Spatial, (2) Social, and (3) Emotional needs. These activities, in an attempt to prototype the space itself as a community hub/village square, were largely situated around the designated area of the ward but also included some other community spaces located in the Riverside and Hillside ‘townships’. The visual communication engagement artifacts (Fig. 3) required to co-ordinate these activities were developed with the assistance of QUT Work Integrated Learning students as part of their Design Internships at the QCH PICU (more detail about this is provided in Chapter “Bringing the University to the Hospital: QUT Design Internships at the Queensland Children’s’ Hospital Paediatric Intensive Care Unit (PICU)”).

Interactive Static Displays—Mapping methods are used to holistically map and explore local knowledge and enable consumers to be actively involved in the design process through expression of their values [18]. These were used to engage both visitors and staff in sharing analogue thoughts and ideas about particular current spaces in ‘real space’ (as opposed to ‘real time’), including:

  • ‘Prioritising Change’ display installed in the staff room encouraging staff to place red dots on priority areas for improving the PICU experience for parents and families.

  • ‘Mapping Change’ chart located in the main entry corridor, illustrating the floor plan of the ward and asking visitors and staff to record their favourite space in the PICU using numbered blue dots and ‘a PICU space that needs enhancing’ using numbered red dots, and related descriptions.

  • ‘Lounge Learnings’ sheet aimed at parents and siblings situated in the existing family room and asking them to indicate visuals related to their use of the PICU parent lounge and to illustrate how they could be improved.

  • ‘Caring for the Carer’ display provided on the balcony, asking participants to finish the sentence ‘I wish I had…’ in order to inform how a better PICU experience for parents and families might be created.

Parent Pack—This strategy was based around the concept of ‘cultural probes’ or ‘design probes’, a visual or verbal documentation method used to capture and collect inspirational data about people’s everyday lives, values, and thoughts, which allows designers to understand human phenomena and explore design opportunities. This strategy was adopted to minimise the presence of the designers/researchers [26], to limit time-commitment and stress for parents and family members (with the option to complete as little or as much of the pack as they chose during a two-week period), and to allow current PICU parents to be participants without triggering unnecessary trauma. The 5-part pack invited current PICU parents to share information about their family, where they are from, and how they feel about certain spatial and social interactions, through methods such as drawing, writing, visual 5-point scales, and photovoice. Administration and nursing staff assisted with distribution and collection via both Riverside and Hillside reception areas. The Parent Pack (Fig. 3—bottom), presented in a paper bag, included:

  • Overview of Project and Parent Pack Participant Information Sheet

  • ‘Home-to-Hospital Journey’ Map

  • ‘How do you feel about’ various experiences in PICU, asking parents to choose appropriate emojis on a scale

  • ‘Information Finding’, an activity designed to gauge opinion on PICU experiences by colouring in on a Likert scale

  • ‘Draw your Family at Home’ Family Portrait designed to test interest in a personalisation tool which could be displayed in patient rooms

  • PhotoVoice instruction sheet asking parents to use their smart phones to take photos of positive and negative experiences based on prompts and share to a Gmail address with accompanying explanations of each photo. Photo voice is an effective technique used in healthcare improvement in which photography becomes a means of translating local concerns into a community ‘voice’, legible to a wider audience of policy makers and clinicians [27]

  • ‘Share’ sheet asking parents or siblings to draw or write about their PICU experience

  • Small gifts e.g., QUT Design Lab pen and tea bags

PICU Pop-up Marketplace—This strategy consisted of four drop-in playful activities, hosted in the PICU main corridor adjacent the balcony over two days (9:00 am-3:00 pm), and utilised an Appreciative Inquiry (AI) Methodology, which offers a strength-based approach to promoting positive organisational change by building effective partnerships and collaboration [28]. It evolved in response to disruptions caused by a COVID lockdown, as well as the stressful nature of an Intensive Care environment where commitments of time and forward planning are not possible for past and current parents, the ‘PICU Liberation’ team, PICU staff, and allied health workers. It aimed to generate informal community conversations and envision possibilities in response to provocative visuals and quotes gathered though ethnography and site audits. QUT Work Integrated Learning students, as part of their Design Internships, assisted the design team with engaging participants in these activities. The PICU Pop-up Marketplace activities (Fig. 4) included:

Fig. 3
The top panel depicts 2 charts for the P C U experience sheet and mapping change. The middle panel depicts a sheet for filling and a board with chits. The bottom panel depicts paper bags.figure 3

PICU Engagement Artefacts

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  • ‘Affirmation Puzzles’ which asked participants to acknowledge the good and envision possibilities

  • ‘Photo Talk’ which utilised a series of visuals of the existing space collected during observation as stimulus for discussion and response. This research method of photo-elicitation used in healthcare enables participants to communicate aspects of their lifeworld which may not be easily verbalised, such as emotional expression or tacit knowledge [27]

  • ‘Awareness Chain’ which asked participants to select from a series of phrases to identify priorities in terms of facilities and wayfinding

  • ‘Animal Signs’ which asked participants to describe and ‘vote’ on an animal hero mascot for PICU based on an existing ‘PICU Liberation’ strategy.

Fig. 4
The left panel depicts the charts and sheets placed on the table. The right panel depicts chits and wall hangings.

PICU Pop-up Marketplace Activities

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A synthesis of the triangulated conceptualisations of staff and parental experiences with touchpoints in the PICU, based on the data captured via the varied participatory design methods detailed here, was compared against the evidence-based data. This provided an enriched local definition of ‘user experiences’, including attendant cognitive, emotional, and sensorial responses to these experiences, the relationship of these responses to their expectations of the service and, finally, how these experiences and their evaluation relate to the principles of family-centred care. This definition foregrounds the multimodality of the construct of user experience, and the heterogeneity of interactions within the intended service.

5 Outcomes

Raw data from each data set was collated (and for focus group/interview data transcriptions checked against audio recordings) and analysed using an emergent thematic analysis [29], essentially examining the data to identify, name, categorise, and describe patterns in the text. Thematic outcomes from the triangulation were utilised to provide recommendations for priorities to formulate the final Interior Design Brief and a concept design proposal; a Wayfinding and Signage Design Brief and proposed scope of work; and a Visual Communication Collateral Brief and proposed scope of work. The latter two scopes of work were developed by QUT Work Integrated Learning students as part of their Design Internships at the QCH PICU. Additionally, in order to synthesise and visualise findings collected from each of the design methods for presentation to both the ‘PICU Liberation’ team and the HEAL PICU Partnership Key Stakeholder Committee, these students provided a data visualisation presentation for each of the PD activities (more detail about the student projects is provided in Chapter “Thinking Differently: Six Principles for Crafting Rapid Co-design and Design Thinking Sprints as ‘Transformative Learning Experiences in Healthcare’”).

Forty-two ‘Prioritising change’ responses revealed that functional and spatial issues were of most concern, with spaces such as parent rooms and public amenities the most frequently mentioned issues. ‘Caring for the Carer’ responses indicated a desire to improve social space and activities including a family area with music, games, cheap food, coffee machines, and a big TV. Results gathered from ‘Affirmation puzzles’ again indicated a focus on functional aspects as well as social. Aspects such as better wi-fi and charging access, provision of a toilet, and a covered outdoor area for families for the delivery of bad news, express room for nursing mothers, more quiet spaces, a large comfortable lounge area and workstation for adults, and a support station for assistance were all mentioned. In regard to social requirements, a space to communicate and meet with other parents, with live chat technology, more access to social workers and allied health professionals, and the inclusion of a visual appreciation of the medical excellence and empathy shown by staff, were desired. The ‘Awareness Chains’ activity revealed spatial, social, and functional requirements, the spatial focus on providing a colourful environment with artwork, more functional facilities, but also a need for a hub to connect staff and parents, which could provide daily care updates, milestone celebrations, group therapy, and family support.

Drilling down further using focus group interview data and observation findings, the recurring themes for spatial requirements, including their specific needs for equipment and furniture, were summarised into the three zones to be considered in the re-configuration of shared spaces to embrace the spirit of the design concept “it takes a village to raise a child”. Three spatial zones were created to relate to the three ‘P’s’ of family centred care: participation, partnership, and protection. This is explained in more detail in Chapter “NICU Mum to PICU Researcher: A Reflection on Place, People, and the Power of Shared Experience”. Based on these three zones, concept floor plans with image boards depicting the proposed look and feel of these spaces were presented, offering up to three space planning options for each zone, for feedback from the PICU Liberation team and larger committee. At the end of the project, the hospital could not prioritise funding to develop the concept design towards interior refurbishment, and the HEAL PICU Partnership Key Stakeholder Committee has expressed a desire for Hospital Foundation funding to be sought to further the conceptual direction in the future.

6 Reflections on the Importance of Design Concepts and Metaphors for Participatory Health Design Projects

Family-centred care is a multi-faceted philosophy grounded on creating an equal relationship between family members and health-care professionals, allowing for parental presence and participation and open and honest communication, and requiring collaboration between all healthcare professionals, the child, and their family. As studies indicate, many PICUs advocate a family-centred care policy; however, in reality, medical practice and the environment that supports it do not always meet the ideal [2]. There is a need for further research to ensure that this important aspect of care remains contemporary and evidence-based, and expands to include more research about the participatory design of the environments in which this care is provided.

In the PICU Partnership project, the addition of a design research team enabled the enhancement of quality improvement by aligning culture with strategy, using the aforementioned guiding principles of a participatory design approach [20]. Democratic practices and design methods were utilised to create a shared design space in which co-designers’ psychological and behavioural needs were expressed, informed the design brief, and materialised in the concept design for the service. Furthermore, by equalising power relations and paying attention to situation-based expertise and activities through the genuine engagement of families and staff throughout the whole design process (via appropriate participatory methods), ownership and responsibility for the project was improved and likelihood of success of the future service was strengthened.

In addition, incorporating a values-led focus enabled the design team to apply a design concept, visualised as a metaphor and architectural parti, as a starting point in the design process. In alignment with the roles of the design concept identified by Pekkala and Ylirisku [30] in service design, the early introduction of the design concept “it takes a village to raise a child”, along with the parti designating the main entrance as the central parent/staff communication hub or ‘village square’ functioned very successfully in the PICU Partnership Project in the following eight (8) ways:

  • Anticipating future—creating a collective vision and outlining an impression of the future that enabled the team to understand and anticipate the kind of approvals, resources, and assets which were going to be needed at each stage of the process.

  • Implementing design—defining the service for implementation and later as a guiding material in implementation of the interior concept design. Participants generally drew upon existing experiences of the healthcare environment, so the integration of an abstract design concept allowed for alternative ideas to be conceived.

  • Training—capturing and supporting the essential features of the design process and roles in a way that was easy to understand, communicate, implement and act on, to suit the varying capabilities and knowledge of participants.

  • Engaging in dialogue—improving engagement in informal dialogue with participants to clarify vague challenges and to generate preliminary proposals. Using metaphor and visual narrative fostered a safe yet playful environment where participants felt comfortable and at ease sharing deep insights.

  • Setting goals—presenting a roadmap and focusing discussion on topics proposed, in relation to expected participant value. The concept clarified and reframed the direction and scope of an ill-defined and multi-pronged design brief, and reduced the number of possible solutions to be handled during the process.

  • Establishing vocabulary– clarifying ambiguity and providing a shared language to help outline and visualise common goals and stay on track.

  • Planning and securing resources—supporting approval from management to initiate and develop the project with less resistance from hospital administration.

  • Linking projects—integrating ongoing projects conceptually and outlining direction for next phases and future projects. Discussion between QCH CEQ Fellows and other hospital units led to interest in integrating this methodology in the waiting space for juvenile arthritis on Level 1 and seeking funding to develop a cross-hospital model to assess family-centred care environments at QCH. Management staff, seeing the success of the interventions held in the ‘village square’ space, were also inspired to incorporate other village marketplace activities such as leadership meetings in this space instead of hidden in meeting rooms.

Importantly, the project also provided many opportunities for enabling mutual learning [20]. PICU Staff were inspired by the disruptive integration of design thinking as a methodology to drive positive impact and guide family-centred care interventions in the unit. The team lead for QCH PICU Liberation noted that:

HEAL’s methodology shifts the paradigm … and explores how facilities and environment can be re-designed to address families’ basic needs for food, shelter and sleep; for information and safety; and for belonging connection and esteem—the humanistic theories we learn about as health professionals and then fail to meet in reality. QUT Design Lab is helping us provide true holistic care with a positive and psychological impact on families, and in turn, the staff caring for them. This design methodology offers a wealth of potential for improving healthcare experiences.

The project provided insight for the designers into the value of ‘sitting’ in the empathy phase of the design process. Visiting the PICU regularly, listening to the stories, experiences and perspectives of both staff and families in this environment, while emotionally demanding, gave the design team greater understanding of how this type of space functions, and how people need it to emotionally support their sometimes-traumatic experiences. It was imperative to tread lightly and interact with the deepest respect and empathy in this intense environment, where notions of family, culture, hope, despair, kindness, and the fragility of life are entwined on a daily basis. Unexpectedly, interactions in the research briefing phase of the project gave both parents and staff the opportunity to tell their stories, and perhaps, in the process, assist in their processing of stressful events and memories related to the PICU. In assisting with the research, families demonstrated their commitment to contribute to quality improvement as a way of giving back some of the care they received from staff during their experiences, however painful. Co-designers may not be able to predict how the physical design of an environment may affect their behaviour and evaluations, so the designers’ role, combining participation alongside evidence-based design research, made a valuable contribution.

The designer’s role requires clear framing of the project to enable appropriate choice of design methods for research that consider the specifics of all participants and the constraints of the policies and procedures of the hospital. While the design team advocate for this approach, there is no one-size-fits-all, and research activities need to be particularly sensitive to avoid triggering trauma, as well as respectful of the time and emotional capacity that both parents and staff can dedicate to them. The affects of the COVID-19 Pandemic on the operation of, and access to, the hospital during this project meant that design methods needed to be adjusted or changed on the fly. The PICU Pop-up Marketplace, previously scheduled as a face-to-face workshop to facilitate staff and family collaboration in another space in the hospital, was delayed and translated into a more informal, and in hindsight more valuable, activity hosted in the main corridor space proposed to become the parent/staff hub, thereby successfully prototyping its function with co-designers. Additionally, the original design methods conceived did not effectively capture the perspectives of past and regional PICU parents, and therefore during the project, the parent pack was electronically customised as an ongoing data collection tool to allow parents to have access and time to contribute to the improvement of the PICU environment, and seek support online.

In addition to aiding the development of an interior design brief through a values-led participatory design approach for the case study hospital unit, the research process encapsulated here is transferable to the design for other healthcare providers, and adds to the call for developing models for similar family-centred care service environments. This will require interior and visual communication designers to develop additional knowledge, skills, and empathetic mindsets to empower the voice of parents, family members and staff, as well as consumers (where possible) and hospital administration, in the design of PICU and other FCC environments. It also requires healthcare providers and allied professionals to become familiar with design language and to understand that extra time, resources, and budgets are required in the briefing phase of projects to enact this process. Ultimately, embracing a “village approach” [25], which aims to create a connected and supportive community, will best support the growth and recovery of children in a safe and healthy environment. The members of the PICU Partnership Project team are certainly now better equipped to understand how we all contribute to the building of the village that supports healthcare partnership, participation and protection.