NICU Mum to PICU Researcher: A Reflection on Place, People, and the Power of Shared Experience

Abstract

In this chapter, I reflect on my experience as a research student intern in the HEAL PICU Partnership Project. I explore the challenges and opportunities I found in working in a Paediatric Intensive Care Unit (PICU) alongside the importance of connection with staff and families and share what this project meant to me personally, as a designer, researcher and parent. Throughout the PICU Partnership Project I was able to draw not just on empathy in a general sense, but on the firsthand experience of having my own daughter born prematurely and being a parent at an intensive care bedside. This chapter will outline my involvement in the project; from the initial meeting where parents and families became our focus in line with the ideals of PICU Liberation, through the time spent observing the use of the physical spaces, establishing relationships, and gaining the trust and voice of PICU staff and families, to the formulation and recommendation of design concepts aimed at summarising key themes and providing a clear and informed way forward. I provide insight into my design process informed by theory, care, and intuition, and summarise the research outcomes and design concepts formulated. It is my hope that this summary demonstrates that, though the experience for families in PICU can never be easy, it can be improved, through good, informed design.

1 A Familiar Face

I recognised her immediately. You don’t forget those people. Not from those times. My heart began to hammer as I made the decision to speak up and share my story with the room.

My name is Leighann Ness Wilson, and 10 years ago, at my 30-week obstetric check-up, I was put into an ambulance and taken to the Royal Women’s Hospital where I gave birth, prematurely, to a baby girl. Rose was born weighing 1070 g (or 2 pound 6 ounces in the old measure). After she was born via emergency caesarean she was immediately whisked away by a team of awaiting medical staff and admitted to the Neonatal Intensive Care Unit (NICU). From that moment I was the mother of an infant in intensive care, a role which required me to immediately navigate the terminology, environment, equipment, and rules associated with this completely unique experience of parenting.

Fast forward 9 years and I found myself sitting in an initial project meeting for the PICU Partnership Project, one of eight key projects within the Health Excellence AcceLerator (HEAL) initiative. HEAL, a collaboration between the QUT Design Lab and Clinical Excellence Queensland, brought design-led researchers into healthcare settings across a variety of projects. The PICU Partnership Project, led by Dr. Natalie Wright, comprised a small team of QUT researchers, including Dr. Anastasia Tyurina, Dr. Judy Matthews, Dr. Sarah Johnson, and myself, with specialities across design thinking, interior architecture, and visual communication design. Alongside staff and families in the Paediatric Intensive Care Unit (PICU) of the Queensland Children’s Hospital (QCH) in South Brisbane, we worked to imagine a more supportive environment for families of children in intensive care.

Of the large number of people in that initial meeting, I found myself sitting right next to paediatric physiotherapist, Ali Ferguson. Towards the end of the meeting, I decided I would share my story. I spoke up, telling Ali, and the group, that I remembered her caring for Rose at the Royal Women’s Hospital Neonatal Intensive Care Unit (NICU), some 9 years earlier. From that point, and throughout the entire project, I sensed the clinical staff looked to me not just as a researcher or designer, but as an ally. They said as much: “You’re one of us”, on the first tour of the ward that same day. I knew their world, and thus was afforded a level of inclusion, hard-earned by the most challenging experience of my life.

2 Immersion

Early in the project it was established that our focus would be the experience of the families with children in paediatric intensive care. This focus aligned with the ideals of PICU Liberation, already established by a devoted team within PICU at the QCH. PICU Liberation advocates for early mobilisation and builds frameworks that encourage families to become more involved in their child’s care [1]. With a background in interior design, research, and education, I was able to apply my skills immediately.

I began what we called the immersion phase. I visited the ward on a weekly basis and was welcomed by Jane Harnischfeger, who found me a desk and was generous and gracious with her time. Jane arranged for me to meet with staff and families, visit special areas within the hospital, and was open and appreciative of our design methodologies throughout the process. I began with a spatial audit, documenting current conditions, taking photographs and measurements, and making notes about the layout, aesthetics, and function of the parent facilities in PICU. I approached my weekly visits to PICU with the upmost respect, knowing first-hand the nature of the environment I was in. An intensive care ward has a very specific dynamic, a paediatric intensive care ward even more so. Staff are highly skilled and professional, yet warm and empathetic; children are intensely unwell but are still children, and their parents are going through a uniquely complex, personal experience that can never be fully explained or understood. Knowing this, I worked quietly and discreetly. I embraced my subjectivity as a virtue, realising that I was an ‘insider researcher’, able to share experiences with the people I was there to study [2, 3]. As the weeks of observations and note-taking went on, I developed a growing sense of the design problems. I helped establish a sense of trust between members of the greater project team, and it was this trust and those relationships that enabled us to see the initial design opportunities within the project.

3 Family Focussed

The PICU Partnership Project was focused on the experiences of families visiting their child; the facilities, the spaces, the aesthetics, and the wayfinding and visual communication. Recognising and embracing the whole family while caring for the child or infant is known in the academic literature as family-centred care (FCC) [4], and is discussed in more detail in the chapter “‘It Takes a Village’: The Power of Conceptual Framing in the Participatory Redesign of Family-Centred Care in a Paediatric Intensive Care Unit.”

I was very conscious about the way we spoke about the project, to all involved, but especially to the families. FCC is centred on the notion of partnerships, where values and information are shared [5], care is negotiated [6], and the competence and skills of both clinical staff and family members are acknowledged and utilised [7]. PICU Liberation is a standard of care. This was so much more than ‘an interesting project’ for the staff and families involved. In such an intensely personal, traumatic environment, it was vital that families were made aware that our research was not about the standard of care their child was receiving, but about the spaces, facilities, and environment that supported them as they visited the ward. Consistent with a recent study conducted with families in a Californian NICU, families are often reluctant to criticise practices or individuals caring for their child due to concerns this criticism would affect the level of care their child would receive [8]. Reflecting on my own experience as a NICU mum, I remember trying to be extra friendly to all our NICU nurses because I hoped when I left my baby with them overnight they’d look after her even more carefully. With this understanding, and the focus on the experience of families made clear, we began to plan how we would collect our data.

4 Meeting the PICU Families

I conducted a number of interviews with available PICU families throughout the project. I approached each interview, most of which occurred spontaneously, by relying on my intuition as a researcher and my emotional connection to the project focus. The time spent in PICU to understand the environment in the immersion phase meant that my interview style could be conversational and relaxed without use of notes or prompts [9]. I used the shared experience and depth of understanding from my own experiences with Rose to establish an emotional connection, which I then used to interpret each individual interview I conducted [10, 11].

The first parent interview occurred when I sat myself in the PICU parent lounge, in the corner of the Riverside section of the ward. Scott came in to make a cup of tea and I said hello. It was clear he wanted to chat, his baby daughter asleep and his wife busy expressing her breast milk. Scott and I spoke for a while and easily built rapport, after I briefly shared my own experience as a pre-term parent. I got Scott’s consent to audio-record our discussion in which he spoke mostly about the lack of toilet facility in the ward for parents, something that became a key talking point over the course of the project for other families too. Because there isn’t a parent bathroom on the ward, family members visiting their children in intensive care must exit the ward entirely to use the toilet. They must then buzz the nurse in their child’s room from outside the large, secure entry doors to be allowed back into the ward. In Jane’s speech to the HEAL Symposium she asked the question, “What message are we sending families if we’re not meeting their fundamental, basic human needs? How can families advocate for true partnership and decision-making rights when we don’t even provide them with an accessible toilet?!”

5 Strategy Design

As my weekly visits progressed, we began to discuss methods for engaging with families. Dr. Sarah Johnstone and I met in a QUT studio, and used design thinking strategies to brainstorm engagement methods. We discussed ideas and collated our thoughts with post-it’s, cutting out images and hand-written notes, and moving these around to create visual representations of the methods we wanted to pursue (Fig. 1a). All engagement strategies were linked to design-based theories, including appreciative inquiry (AI) [4, 12, 13], photo-voice [14], and scenario building [15]. We presented to others in our QUT research team and decided on a three-tiered approach of static interactive posters (for families and staff), a parent pack, and a co-design workshop. As data collection methods, these were to be combined with the overall understanding gathered from the regular site visits, observations, and family interviews.

Fig. 1

Brainstorming engagement methods (a), the parent pack (b), interactive display on PICU balcony (c), and the PICU marketplace (d)

Implementation of the engagement strategies began in earnest in March 2021, with Visual Interaction Designer and lead on the WIL engagement project, Dr. Anastasia Tyurina, developing visuals for interactive posters that were positioned in the staff room, balcony, and corridors (Fig. 1c). The displays included a range of prompted questions such as ‘I wish we had….’, based on the dream phase of the AI process [4]. The visual approach and inclusion of WIL students is discussed further in the chapter “Bringing the University to the Hospital: QUT Design Internships at the Queensland Children’s’ Hospital Paediatric Intensive Care Unit (PICU).”

The parent pack (Fig. 1b) consisted of a series of prompted sheets to gather parent response at a time that suited them. They were delivered in brown paper bags around the ward, with the idea being parents could return completed forms to staff. On reflection, this did not yield the amount of engagement we were hoping for, but we now have a digital version that was developed by our WIL students that could be trialled in similar projects in the future.

6 Rethinking Co-design

As we came closer to the date set aside for our co-design workshop, it became clear that this was not the right approach. It was not just the numerous Covid-related lockdowns that effected this aspect of our planning, it was the nature of an intensive care environment. The clinical staff and families of PICU were simply unable to commit to a specific time on a specific day. Motions to cancel this engagement strategy entirely were made, but I was determined, believing we needed something else. I suggested we utilise similar engagement activities but deliver them in a drop-in fashion, in a much more responsive approach that considered the nature of an intensive care ward. The team agreed, the PICU Director loved the idea, and my brand new engagement strategy, the PICU Marketplace was born.

7 The PICU Marketplace

The PICU Marketplace (Fig. 1d) was held over 2 days in the same week (a Wednesday and a Friday) and comprised six drop-in style activities, set up in the central corridor. The activities were visually engaging and interactive in nature, and none required a long commitment of time. We staffed the event with four QUT team members and a rotating group of six of Dr. Tyurina’s WIL students. It was important to me that we kept our numbers low, so as not to overwhelm or discourage families from approaching us as we manned the stations. This more casual, drop-in approach was extremely effective. Essentially, staff, parents, and visiting relatives could choose to ignore and walk by, observe and not engage, engage directly, or return to engage at a time that suited them and their day in PICU. Director of PICU, Dr. Christian Stoker, was so impressed with the Marketplace as an engagement strategy that, as the project was wrapping up, he discussed plans to host future events for staff and families utilising the same engagement method.

8 Site Visits and Emotional Triggers

While the engagement strategies were taking place and that data was being collected, I continued with my weekly site-visits. During the visits, I continued to interview parents when opportunities arose, and I was taken on two special site visits. I saw the Quiet Suite, a specially-designed facility in the QCH for families of deceased or dying children and babies to say goodbye, and Hummingbird House, a purpose-built facility in Chermside for paediatric patients requiring palliative care. Both experiences were formative in increasing my empathy for the design problem while appreciating the nature and specifics of the spatial and functional requirements of the family experience in PICU. They also shone a light on more opportunities we had to make improvements to the current space.

Most notably, from my perspective, was how the Hummingbird House facility maintained an element of play within the space [16]. Though attention to detail in terms of medical requirements and functionality was paramount, there was an ambiance of calm, and detailed features that facilitated a clear understanding that this space was designed for children. Colour-changing artworks controlled by patients, changeable artifacts as discussion points, playful features scaled to suit the children, and natural materials and artworks all provided inspiration for our concept to evolve.

I felt the emotional impact throughout the project, but particularly when visiting spaces like the Quiet Suite and Hummingbird House. The emotion I experienced as a researcher is increasingly acknowledged and explored in the literature, in a number of studies that describe emotion and shared experience inform approaches to social research [17]. Personally, I found standing in the space where 56 families said farewell to their child in 2020 alone, and then a few hours later being on the side-line of my children’s touch football game, an odd experience. A few close friends saw that I was affected by this, and allowed me to talk it through. I became able to acknowledge that while the opportunity to be involved in this project was an incredible gift, it was also triggering the trauma that I had experienced 9 years prior. I needed to give myself space from the project as I became more and more attached [17].

9 The Power of Shared Experience

I have no doubt in my mind that my experience as a NICU Mum informed my delivery of this project. In the interviews especially, I could see that when I shared my experience as a NICU parent, the families really opened up to me. Beyond empathy, this shared experience played a vital role in my approach with two of my most memorable interviews, with Tiarna and Tim. I met Tiarna and her infant son when they were in PICU following a surgery and I was immediately struck, and impressed, by how involved Tiarna was in the care of her child, embodying the ideals of family-centred care. She wore her PICU Mum status with fierce pride. We spoke at length about the empowering potential of involvement in the care of your child when circumstances make you feel helpless [18]. Tiarna shared that she used to take home washing each day because she wanted to dress her own son. It wasn’t until 4 months after they had arrived at PICU that she was told there was a laundry facility that parents could use. “I was lugging washing home every single day, and I’d bring back a box of washing every morning.” Unsurprisingly, Tiarna has become the first parent advisor within the PICU Liberation team, and continues to share her experiences for the betterment of others.

Another pivotal parent interview conducted during this project came along unexpectedly during a Wednesday visit when Ali rang through, knowing our team were on ward. A Dad was awaiting surgery for his 4-year-old son, and they said they were happy to talk to us. The team immediately looked to me, so I took the audio recording software and my notebook to Level 9. There, I met Tony who shared his experience of using the PICU family lounge. He walked from his son’s room on Hillside to the Riverside parent lounge to make a cup of tea, and told me he didn’t like the feeling of walking past ‘all those sick kids’ along the way. As he made his way to the parent lounge, he was twice asked by staff if he was lost. Eventually he found the room and made a cup of tea in a little styrofoam cup. In his own words ‘‘I went there once, never again”. One cup of tea. We chatted easily, and when I told him briefly about Rose, our connection grew. The value of his voice enabled others to consider the complexity of the family experience in PICU [19

Fig. 2

Rose and me, a proud prem mum

].

Both Tony and Tiarna spoke to me about the importance of making connections with other families. Tiarna found comfort in talking to other parents who were going through similar experiences. She told me about an idea she’d had to provide a way for parents to leave messages for each other in little mailboxes that she called the PICU Parent Connection. ‘‘Like even something as simple as ‘you’ve got this’.” Tony told me he felt especially inclined to connect with other Dads.

10 Staff Input and the HEAL Symposium

Towards the end of our engagement process we found that staff members also began to share and confide in us, perhaps testament to our research group’s ability to actively listen, and spend time in the environment. Particularly vital to this was the Appreciative Inquiry model which ensured we incorporated all the many compliments and gratitude expressed by families in our discussions. The project aims were always clearly focussed on the experiences of the families and not about the standard of medical care and expertise within PICU, which are second to none.

Themes of connection and support were becoming apparent alongside the functional spatial requirements like a bathroom, laundry, and expressing room. Grief became another reoccurring theme, and as a project team at one of our PICU Market Stall days we witnessed two families coming and going through the main entry corridor on the worst of all the bad days. ‘‘We train families to grieve like Ninjas.” Seven words with a huge impact. I heard these words from a staff member who wishes to remain anonymous, during a discussion at the Photo Talk station. When we shared this comment at the HEAL symposium, an event where we shared insights from the HEAL projects to over 300 attendees, I struggled to contain my emotion. As I spoke about how the PICU Partnership Project was using design thinking to make a difference, I could tell that others saw it too. This was a project that could make a significant impact through design-led research. The imperative that something had to change with this environment was clear. Doctors hiding in the expressing room to cry, families having little escape from the distinctive and full sensory aesthetic that is Intensive Care, children having nowhere inviting to play while they visit their siblings, and parents leaving the ward to use the bathroom and then becoming anxious, fearing they are disturbing their child’s nurse when they press the buzzer to return.

11 Concept Design

After wrapping up the research component of the project, Dr. Anastasia Tyurina and I worked hard to summarise our findings and present our outcomes with a design proposal delivered back to PICU. With the support of the Liberation team, we were guided to include explicit links to the Strategic Vision of the Hospital [20], including the vision and purpose of the QCH, 2020–2024 and the National Safety and Quality Health Service (NSQHS) Standards [21], specifically Partnering with Consumers and Comprehensive Care.

In early September 2021, some 8 months after that initial meeting, we presented our findings. In one comprehensive presentation we told the story of the project. We began with a summary of the project, pointed to the standards and strategic plan, and clearly described the ward using visuals and colour-coded floor plans denoting different types of spaces used by PICU families. We then described our engagement approach, consisting of the static visual displays, the parent pack, and the PICU Marketplace, alongside interview techniques and site visits. The collected data was visually summarised by Dr. Anastasia Tyurina in an extension to the project with her WIL students, and we used thematic analysis [22] to colour code key words from interview transcripts and notes.

I then presented our design solution, starting with the overall concept of activating the central parent entry corridor as a parent-space. The design was presented using a model of: problem summary with photographs of current spaces, original interview data highlighted with key words (specific to that problem), and then the concept name, spatial goals, floor plans (including options), and finishing with concept images, summary of design concept, and key words. Aligning each of the ‘problems’ with the original interview data (quotes taken directly from the interviews) proved a powerful technique. This is what clinicians call the ‘consumer voice’, and presenting this as a key informer of our design concept was impactful, often emotionally triggering, and gave each issue the required gravitas. Essentially, we turned problems into opportunities, and the concept was especially well received due to our clear, unambiguous, and positive approach.

12 Presenting the Concept

In the first instance we developed solutions that responded to the need for quiet spaces for the families of PICU. Reflective spaces where parents can retreat, take a phone call, meet with clinical staff or social workers, and find reprieve. Currently, PICU has two interview rooms, but these are controlled, bookable spaces and quite underwhelming in terms of furnishings and aesthetic. Our concept aimed to rebrand and rethink the interview room approach, and provide spaces that hold parent needs in terms of meeting, grief, and reflection. Spatial options were presented in terms of location, with natural light being a priority. Key words of talk, retreat, grieve, and meet were presented alongside visual concepts that had a purposefully different feel from the patient rooms in terms of lighting, ceiling treatments, and furnishings.

The second focus included the main talking point of the entire project; the parent toilet. The current process of parents needing to leave the ward and be buzzed back in by their child’s bed-side nurse was addressed, as were other spaces that provided feelings of comfort and empowerment, namely the nursing mothers’ expressing room and the family laundry (currently found in a storeroom). Empowerment and family-centred care were key here, with two layout options proposed for consideration due to the impact/reshuffle of other facilities and storage. In one option we not only included a toilet for families on the ward, but a shower and vanity as well. These spaces were presented using simple but elegant finishes and panelled storage alongside the key words of renew, wash, cleanse, and near.

Our final focus was to address the failings of the current position of the ‘family lounge’ in one corner of the ‘Riverside’ section of the ward. I interviewed countless families who were affected by this positioning. ‘Hillside’ families who didn’t want to walk past all the rooms and sick children to get there. Some didn’t even know there was a family lounge, and ‘Riverside’ families were surprised to learn that there was no family lounge over on the other side of the ward. In addition to the crucial repositioning of this facility to a more central, visible location, we created opportunities for incidental social connection, community, and support across PICU families. The interview data was plentiful regarding the need for connection with other families, and while this connection may not be sought formally or with any regularity, it was still important. From an interior design perspective, I could see that incidental connections could be supported spatially, and set out to do so. Our design proposal provided a centralised and larger kitchenette, family lounge spaces, sibling play space, a range of seating options, and display space for PICU to generate a deeper sense of community and connection to the families. Three different layouts were proposed, each incorporating toilet and quiet spaces with key words of family, re-fuel, support, and welcome. In terms of interior design concepts, timber panelling reminiscent of neighbourhood fences were proposed to offer warmth and a variety of privacy levels to the various spaces, attention to detail within shelving and artifacts allowing a sense of playfulness to emerge, and brightly coloured flooring to denote spaces was offered.

13 PICU Response and Another Project

The initial presentation was so well received that Dr. Tyurina and I were invited back two more times to present to other stakeholders. By that stage, we were essentially telling the story of the PICU Partnership Project. We described the processes that made our project unique and used consumer voice and data to promote design improvements in PICU. The overarching message became quite simple: families of a child in intensive care need to feel comfortable when they visit their child. They need spaces to grieve and retreat, and they need to feel connected to the staff, the ward itself, and the other families going through that uniquely challenging situation. The PICU staff and QCH are continuing to work through internal considerations to develop our vision into reality.

With excellent foresight, Dr. Anastasia Tyurina co-organised a second WIL project, consisting of Interior and Interactive Design students to create a virtual reality model of the space. I was invited into this project to mentor the Interior Design students as they worked to create a 3D model and develop concept boards for preliminary designs created for PICU. With the 3D model then created, the two Interactive Design students enabled the model to be viewed using virtual reality. In mid-November 2022, we returned to PICU with another iteration of the Marketplace. We displayed the concept boards and set up screens and space for staff and family members to experience a 3D visualisation of the central corridor space using a virtual reality headset. Whilst in the VR space, one of our students provided commentary for the user, to explain what they were seeing. As a team, we developed a series of questions to gather feedback on the design itself, as well as the experience of being inside the VR model. In total, we gathered data from over a dozen clinicians and two family members during the course of the day.

14 Feeling Proud

Looking back at that initial meeting, and considering all that was achieved, I feel immensely proud. Towards the end of the project, Jane would introduce me as ‘Leighann, our designer from QUT, who is also a NICU Mum’. I felt honoured to share the stories of the PICU parents I connected with, and use their voices to amplify the need for our design vision. Based on the feedback we had to each of our final presentations, I knew our work had made a difference. Making genuine connections with the PICU families using shared experiences, and then using that to inform my design process, was something quite unique to this HEAL project. As part of our design methodology, we used immersion, observation, interviews, and a myriad of engagement strategies that had the families of PICU at the heart of every step. In the act of applying design thinking and research strategies in a healthcare setting, I know that my lived experience was significant, and therefore, I would like to dedicate this chapter to my daughter Rose, for whom I am forever grateful (Fig. 2).

15 The Legacy

The HEAL Partnership Project would not be possible without the input from every single parent we spoke to. At the end of our first concept presentation, Ali, Rose’s physio who I’d recognised at that very first meeting, took me aside. She told me that Tony’s young son had passed away, his condition being ‘incompatible with life’. Having made such a special connection with his father, and sharing their story at the HEAL Symposium, I felt the loss keenly. I sobbed into Ali’s shoulder. ‘This is part of his legacy’ she said as she comforted me, and I completely agree. Rest in peace little man.