Agency is understood as the capacity of individuals to act independently and make their own choices.¹ It’s used here in line with Ahearn’s definition,² as relating to “the socio-culturally mediated capacity to act”. Agency is closely related to one’s sense of identity, which can be compromised during healthcare experiences where patients are often positioned as passive recipients of healthcare services.^3,4 Contemporary healthcare practice recognises that healthcare systems, the organisational composition and spaces within which healthcare is provided, all play a role in constructing identity for patients through the way that these elements “enable or constrain how patients position themselves”.⁴ Furthermore, contemporary healthcare practice recognises the need to identify and implement strategies that can promote agency for patients during their healthcare experiences.^5,6 This approach extends to paediatric healthcare settings, where the view of children as too vulnerable to participate in their own health decision-making has given way to the recognition that children are meaningful agents, capable of enacting change on their relational worlds and reflecting on their influences.⁷

Extending agency to paediatric patients has been shown to improve an individual’s motivation to participate in decisions regarding their healthcare and their capacity for disease self-management, alongside increases in child and parent satisfaction with the care they are receiving.^8–16 A sense of agency can thus encourage active participation by children and young people in managing their illness and navigating their healthcare journey.

Researchers in the field of evidence-based design have long recognised the need to identify strategies through which the built environment can extend agency to patients. In research with adult cohorts, this is predominantly achieved through strategies that extend a degree of control to the patient over their environment during an inpatient hospital stay. Single rooms, for example, have been commended for enabling patients to regulate their own degree of socialisation, privacy and noise. This can be further enhanced by providing a degree of localised, patient control over air conditioning, natural and artificial lighting sources.¹⁷ Allowing patients to exercise a degree of personalisation over their hospital rooms, by bringing in articles from the home, has also been linked to wellbeing both in adult and paediatric cohorts.^18,19,20 Available research to guide designers in extending agency to paediatric patients does not, however, currently exist to the same extent as for adult patients. This paper will report on findings from a study conducted at Melbourne’s Royal Children’s Hospital, Australia, (RCH) with a specific focus on the architectural strategies that can support the extension of agency to patients in this environment.

Methods

This study collected data from 246 children and young people at RCH, using a mixed-methods approach:

• 178 surveys were collected – 89 on the topic of “nature and distraction”, and 89 on the topic of “social spaces within the hospital” (age range 4-18);
• 43 drawings were contributed by patients / siblings in the outpatient waiting room – 14 patients were asked to “draw their ideal hospital”, and 29 were asked to “storyboard their typical hospital visit” (age range 4-12);
• 25 photo-response interviews were conducted primarily with inpatients (age range 7-17); and
• 100 hours of spatial-use observations were conducted throughout the hospital – data on which this paper will draw includes: 45 hours in waiting rooms, 15 hours in the atrium, and six hours in the Starlight Express Room.

Surveys were administered to patients along two themes: nature and distraction, and social space. These were purpose designed by the research team based on a substantial literature review and in relation to the specific features of the environment at RCH. Each survey contained a maximum of 10 questions (four of these were demographic regarding age, gender, number of prior visits to the hospital, and inpatient/outpatient at the time of response). Response options to questions were a mix of yes/no, Likert-scale, open-ended, and “pick as many as you like”. An example of the last option was the question, “Do any of the following things take your mind off being in hospital? Tick as many as you like”, followed by a list of the major distractions in the hospital environment.

Two drawing exercises were conducted with children in the outpatients waiting room. The first (14 drawings) adopted a common research approach with children, asking patients to “draw their ideal hospital”.²¹ The second (29 drawings) was developed by McLaughlan to better understand the types of activities with which patients typically engage when visiting RCH, and what within this environment was capturing their attention. A research assistant, who was positioned at the table throughout both drawing exercises, prompted the children to explain what they were drawing and why. This mitigated the difficulties of analysis inherent to drawing-based research methods.

Twenty-five photo-response interviews asked patients to respond to 11 photographs of public, semi-public and private spaces in the hospital.ⁱ Interviews spanned six and 40 minutes, with an average duration of 21 minutes. Various prompts were used to initiate conversation regarding these images, and these included:

• Can you tell me which of these spaces you like the best (you can choose more than one)?
• Is there anything you really like or don’t like about this picture?
• Do you think you could add anything to make this space better?

A total of 100 hours of observations of spatial use were carried out in the public atrium, various waiting room and family spaces, and the Starlight Express Room. Three different methods were used as relevant to the space in question. A “snapshot” method was used in waiting room and atrium spaces to record the number and demographic of every person inhabiting that space, and what they were doing there, captured at 10-minute intervals. A “shadowing” method was used in waiting room spaces, whereby one patient at a time was observed for the duration of their wait. This captured the activity with which children and young people were engaged, alongside the type of behaviour they were exhibiting at one-minute intervals. In smaller spaces, such as family lounges on wards and the Starlight Express Room, a more general method was applied, where drawings were made and notes taken of how the space was being used, by whom, for how long, and how these factors changed across the course of a day.

The Starlight Express Room as a model for supporting patient agency

Starlight Express Rooms are provided by the Starlight Children’s Foundation in seven hospitals throughout Australia. The intent of these spaces is to provide “fun, medical-free havens for sick kids and their families”. In this space, children and young people can watch DVDs, play video games or engage in various guided activities, such as face painting, musical jam sessions, magic shows, painting and crafts. During the evenings, Starlight Express Rooms are transformed into “teen-only hang-out spaces”. As a dedicated “medical-free zone”, no treatments or medical talk is allowed.²²

Starlight Express Rooms have been included in the four new paediatric hospitals completed in Australia between 2011 and 2018: Melbourne’s RCH (2011), Brisbane’s Lady Cilento Children’s Hospital (2014), Melbourne’s Monash Children’s Hospital (2017), and the Perth Children’s Hospital (2018). The space can be accessed by all inpatients and outpatients during the day and adolescent inpatients in the evenings (Fig. 1). 

The Starlight Express Room provides a space in the hospital where children and young people can contest, reject and renegotiate the constructed identity of the “passive patient”. In this space, the various types of behaviour that evidence agency occurred far more frequently than elsewhere in the hospital. This included proactive (self-directed) play, talking with family, interacting with staff, and socialising with children and young people beyond an individual’s sibling group. In the Starlight Express Room, several behaviours were observed that were not witnessed elsewhere in the hospital: singing, dancing, hula-hooping, yelling and rearranging furniture. The perception among children that they’re free to modify this physical environment to better suit their needs was the most telling behaviour observed; environmental psychologists understand this type of “placemaking” to denote a sense of ownership and agency.²³

Observations made clear that patients experienced a higher level of comfort and freedom in the Starlight Express Room than elsewhere in the hospital. It must be recognised, however, that this is a space of hyper-agency; it deliberately seeks a juxtaposition with the disempowerment that occurs in other hospital spaces. When interviewed, staff explained that they aim to provide a space for children that is “100 per cent YES, in a world that is otherwise all about NO”. Planned activities are designed to foster “empowerment” by giving children and young people “the chance to be in charge”. Staff will play the part of the “silly” person, suggesting things that are nonsensical to allow opportunities for children to correct them. While it may be impractical to expect the level of agency witnessed in the Starlight Express Room to be extended across all spaces in the paediatric hospital, the knowledge obtained from observing this space can be used to identify and evaluate the success of the various architectural strategies used to promote patient agency throughout RCH. Signifiers of agency in this environment can be seen to include engagement, socialisation, communication, play and a sense of belonging.

Architectural strategies for providing agency in RCH

In interviews conducted with five architects involved in the design of RCH, the term “agency” was not directly articulated as a guiding principle in the design approach taken. The values that contribute to a sense of agency, however, were clearly present. Architects Ron Billard and Mark Mitchell (Billard Leece Partnership), Kristen Whittle and Mark Healey (Bates Smart), alongside Sheree Proposch (formerly of Bates Smart) discussed the use of architectural strategies to facilitate engagement, socialisation and play, and to achieve a sense of belonging by creating a clear and legible sense of place. In short, the architectural team sought to create an environment that communicated this was a space for children and young people.

The need to communicate an atmosphere of play was high on the architects’ agenda. Proposch detailed, for example, how it was a deliberate choice to commission a sculpture for the central atrium that would communicate to children: “Here’s a big thing I can grip and climb on, and I’m allowed to do it. I’m not being told off.” Communicating agency through opportunities to play tied into a broader strategy of creating a strong sense of place, as the architects recognised this would be important for promoting a sense of belonging among patients. Whittle explained how the team borrowed from the educational theory of Reggio Emilia to direct their articulation of space. Reggio Emilia recognises that children bring a deep curiosity to any situation. This drives them to understand the world and their place within it, and that this interest can be taken to a greater level.²⁴ The spatial translation of this theory was to create a building with a strong sense of community and intuitive wayfinding. Community relates to agency, since the perception of community has been recognised as important for promoting socialisation.²⁵ Embedded in the design approach to RCH was an awareness that children and young people would value a sense of connection to other children in the hospital environment. Proposch explained: “It’s a subconscious grouping of community where you’re not … solitary … it’s more of that community feel; safety in numbers and also other people there … you know kids are running around having fun, even if they’re in pain or whatever, they’re still running around doing stuff.”

Views obtained by children and young people through the surveys, drawings, photo-response interviews and observations confirmed a series of architectural provisions and strategies that support a patient’s sense of agency in the hospital. These included spatial layouts and proximities, a large public sculpture named “Creature”, a meerkats enclosure and double-height aquarium, an interactive gaming screen, and the particular approach taken to artwork selection in the hospital (Fig. 2).

The architects achieved a sense of community through spatial organisation and proximities capable of imparting the impression that there are lots of other children and young people around, lots going on, and lots to do. A central atrium space forms the heart of the building and was conceived of as the “main street”, performing as a central gathering and circulation spine. Creature – the dominant public sculpture in this space – stands, in the words of Mitchell, like “the traffic cop at the intersection” of this space, forming the primary orientation point by signalling the entrance to the Specialist Clinic Waiting Room (Fig. 3). Whittle has alternatively referred to Creature as playing the role of a focal point in the hospital’s metaphorical “town square.” At the opposite end of the waiting room, a meerkats enclosure has been positioned. Drawing exercises confirmed that the mental map many children had of the waiting room was of a space bookended between these two significant anchor features: Creature to the west and the meerkats enclosure to the east. In the second drawing exercise, 55 per cent of children drew Creature and 34 per cent drew the meerkats enclosure.

Survey responses and photo-response interviews revealed the high value children and young people place on these two features. The photo-response interviews saw 44 per cent of patients name Creature as one of their favourite elements in the atrium, and these respondents ranged from six to 16 years of age. Spatial observations revealed that Creature acted as a social magnet. If more than two children are playing on this sculpture it will typically attract a number of other children, who run to join in. More telling were the words children used to describe Creature. One survey respondent referred to this as “the big climbing thing in the foyer”, while a respondent to the photo-response interviews said: “The Creature, it’s like a jungle you want to climb up – like climbing up and then sliding down. It’s really not a slide but you can still make it as a slide … you can turn it into a slide.”

Meerkats came up only once during the photo-response interviews because no photos of the meerkats enclosure or Specialist Clinic Waiting Room were included in the photo-set. In retrospect, this presented a limitation to the data. The meerkats featured prominently, however, in the survey responses (Fig. 4). In answer to the question “Do any of the following things take your mind off being in hospital”, from which respondents could pick multiple options from a nine-item list, 60 per cent of respondents selected “animal attractions”. This was the highest response rate after “iPads / iPhones / and Nintendo bought from home”, which was selected by 63 per cent of respondents. “Animal attractions” also included the aquarium (referred to more commonly by patients as the “fish tank”). Children’s attachment to these features is further evidenced by the fact that in the “draw your ideal” hospital method, 44 per cent of children included meerkats and fish alongside myriad other zoo animals they felt would improve this environment. The aquarium was empty during the duration of our data collection, owing to necessary maintenance (Fig. 5). Despite this, it was drawn in 21 per cent of the “storyboard” drawing exercises.

Children and young people tend to conceive of the meerkats enclosure and the aquarium as somehow belonging to a set of features from one currently missing. The dialogue from a photo-response interview copied below echoed a similar sentiment to comments made by several children as part of the drawing exercise:

Patient: When it was my first time entering this hospital it was nice because like, when you’re entering, you get to see the fishes. But we don’t like this because there used to be fishes and all the kids used to love it, but now you guys covered it up and all the kids want to know where they are, and now there’s just one animal. I just don’t know what the name is but just one animal is still here.

Interviewer: The meerkats?

Patient: Yep, the meerkats.

Dissatisfaction with the absence of the fish tank was expressed in 80 per cent of the photo-response interviews.

Another significant anchor feature positioned in the atrium and appreciated by children and young people was a large, wall-mounted, interactive gaming screen. Thirty per cent of survey respondents said this feature “took their mind off being in hospital” and 14 per cent drew this in the drawing exercise. While only 4 per cent of children listed this as a place they would go to make friends, spatial observations revealed this was one of the few locations in the atrium and waiting room area where children interacted with those beyond their sibling group. This was also one of the few locations that enabled children and young people to play with their caregivers. One survey respondent observed: “[To make friends] I would go where the big screens are because children and young people usually go there.”

While children were unable to articulate the value of a sense of community, spatial observations revealed the factors contributing to this. The grouping of all specialist clinics into a single waiting area that covers about 350 square metres and accommodates around 300,000 presentations a year brings large numbers of children together in one space.ⁱⁱ Inclusion of a large, centrally positioned courtyard for outdoor play enhances this sense of community, as it’s fully glazed to the waiting room so that games being played are visible to those sitting in the waiting area. A personal highlight during data collection, for example, was watching a group of children who had met in the waiting room play a game of hide and seek in the courtyard; the penny never dropped among the younger children that they were playing this game in a courtyard surrounded by mirror glass walls.

The adjacency of this waiting room to the atrium, supported by a text-message appointment reminder system, enables this waiting space to spill over into the atrium. In the atrium, the aquarium and interactive screen are positioned at opposite ends, bookending this space just as the meerkats and Creature bookend the waiting room. This is further supported by a large outdoor playground at the north end of the atrium (just beyond the location of the interactive screen) and a large food court at the south end (just beyond the aquarium).

While Creature and the interactive gaming screen support and facilitate play, the aquarium and meerkats enclosure provide opportunities for engagement. Furthermore, Creature, the meerkats enclosure and the aquarium all make substantial contributions to the creation of a strong sense of place, which facilitates a sense of belonging among children and young people. This is further supported by the spatial organisation and proximities used by the architectural team. The final element contributing to a sense of agency for patients in this environment is the particular approach taken to the selection of artworks and wayfinding graphics. While this last element is the most subtle in patients’ recognition of its contribution, its influence comes through strongly in the photo-response interviews.

Birch, Curtis and James,²⁶ investigating children’s preferences in hospital environments in the UK, found that aesthetic choices can impact whether or not patients chose to access the spaces that facilitate socialisation in a hospital. They observed that children and young people were “highly receptive to the visual cues, which served to signify the intended age of the users and occupiers of a space” and in contemporary paediatric hospital design:

“the image of the young child […] is taken to be iconic of children in general … [and is] something from which older children wish to disassociate themselves … [In their study] the majority of children and young people over seven years of age were acutely aware, and critical, of the babyishness of the surroundings”.²⁶

At RCH, we found the opposite. Forty-four per cent of respondents in the photo-response interviews, aged 6 to 16, named Creature as one of their favourite elements in the atrium space. Photo-response interviews also revealed the value placed on other artworks by children and young people. Jade Oakley’s “Sky Garden”, a suspended mobile sculpture featuring fairies, received positive comments from 72 per cent of the photo-response participants. Terms that patients used to describe this sculpture were: colourful, bright, fun and friendly. Shedding light on why children and young people responded so well to this sculpture was that one patient referred to the mobiles as “the things the kids made”. This was echoed through responses to the hospital’s picture-based wayfinding graphics: “It’s kid-friendly, like a child might have drawn it but… it’s not like a scribble”; and “It’s not perfectionist artwork. That’s what I like about it… it looks as if a child’s kind of done it.”

Conclusion

Supporting a sense of agency for patients in the paediatric hospital has recognised benefits for children and young people, including positive engagement with healthcare professionals, active participation in the management of their health needs, and a more positive healthcare journey. As a model for supporting agency in paediatric hospital environments, the typology of the Starlight Express Room provides a set of signifiers for identifying where agency is being achieved elsewhere in the hospital. These include: engagement, socialisation, communication, play and a sense of belonging. Architectural strategies can be used to support and optimise the extension of agency to patients in the hospital environment. At RCH, this has been achieved through spatial strategies that: promote legibility through a clear, distinctive and age-appropriate sense of place; enable an atmosphere of play; and give the appearance of abundant social opportunity.

Authors

Rebecca McLaughlan and Stephanie Liddicoat are both research fellows at Melbourne School of Design, University of Melbourne.