Foregrounding the Built Environment in Experiences of (Cancer) Care: Learning Lessons for Human-centred Design

Foregrounding the built environment in experiences of (cancer) care: learning lessons for human-centred design

Abstract:

In cancer care facilities where people are confronted with stress and anxiety, architecture’s potential to impact on people’s well-being is highly relevant. Realising a welcoming and supportive environment is, however, challenging for both healthcare organisations and architects/designers. Since stress and anxiety are context- and person-specific, designing for people affected by cancer requires taking into consideration their particular concerns, sensitivities and experiences. In studies on how the built environment impacts on people’s health and well-being, these are hardly addressed.

The aim of this research is to investigate how the experience of people affected by cancer can inform human-centred design of cancer care facilities. To achieve this aim, the focus is on the following research questions: What is the role of the built environment in the lived experience of people affected by cancer? To what extent do architects and clients involved in the design of cancer care facilities integrate the perspectives of users generally, and people affected by cancer specifically, in the design process? And, how is this integration of user perspectives in the design of (cancer) care facilities supported or constrained?

Spaces are both constructed and interpreted and it is with this understanding that people affected by cancer and their interactions with the built environment of their cancer care are placed centre stage in this research. The point of departure is formed by sensory dimensions of experiences, affordances (how the environment supports or hampers actions or activities) and meanings that arise in use. An understanding of everyday lived experiences results from a collaborative effort between research participants and (the) researcher. By reflecting on the role(s) of the built environment in the experiences of people affected by cancer, this dissertation produces findings that can better inform human-centred design approaches to (cancer) care facility design.

The research is built up around four studies. Three are oriented towards the first research question. To address this question the initial focus with patient participants is on qualitative methods that are used to creatively produce knowledge and disseminate results while bringing to the fore spatial aspects in their experience. Patient-made photos play a key role in foregrounding the built environment in patients’ narratives (the suitability of photovoice is tested in the first study). To gain insight into a diversity of perspectives the approach is extended by also involving patients’ relatives and care professionals in the second study. The third study is an analysis of autobiographies that supplements the fieldwork with personal and diverse written narratives of people treated in Belgium or in neighbouring countries.

Patients’ cancer care environment turns out to be dispersed in a ‘landscape of care’, composed of formal and informal places of (cancer) care. In cancer care facilities the (socio-material) built environment contains and mediates an individual’s confrontation with cancer. This highlights the relative importance of sensory qualities, experiences of entering, and the affordances in/along routes and spaces of transitions. Over time the changing body amplifies the bodily relation with the environment and demands attention for the spatial organisation and the changing building. Varying sensitivities and preferences make that patients (and their relatives) require a diversity of spaces to support their coping, a flexibility that may further have the potential to support care professionals in utilising their work environment. The concept of liminality is found to be helpful to better understand a spatial progression that cancer illness experience entails. It directs attention to the pre-diagnosis phase of tests and consultations as characterised by constant change and an undefined spatiality. It also highlights how the cancer care facility as a whole and particular spaces within are experienced as places of transition, emphasising the importance of the affordances presented (including access to nature) facilitating evolving identities. Finally, the findings suggest that in light of increasing survivorship a patient’s journey reflected in a spatial and geographic progression or logic may support recovery.

With the fourth study we assess how these insights relate to current architectural practice and (cancer) care facility design. To do this the second research question is addressed with two case studies investigating design processes retrospectively. The first case study looks at a newly built general hospital accommodating a ‘full oncological care program’ with facilities for diagnosis, follow-up and treatment on site, with dedicated units for oncological care of in- and outpatients. The second case concerns the renovation of an oncological consultation within a university hospital. These case studies reveal that, within healthcare design consultations, ‘spaces of transition’ are at risk of receiving deficient attention regarding patient experience.

Together, the varied components of this PhD dissertation make the case for the support that the built environment can offer in light of the challenges people affected by cancer are faced with. Within a dispersed landscape of care patients’ experience is deeply affected by matters of mobility and distance. There is a desire to have psycho-social care and support integrated as ‘place’ (not only ‘event’) within the medical care environment. These findings are consistent with studies exploring the supportive role of (the architecture of) the Maggie’s Centres, although our research suggests there is unexplored potential in this respect at the scale of wards and wings. Finally, while giving voice to people affected by cancer it is important to recognise that the variety of sensitivities and disabling conditions affecting their experience are not all unique to cancer. Designers and care professionals concerned with the diversity of human abilities may find the playing field considerably changed when taking into account people whose lives are disrupted by cancer and who may also benefit from appropriate spatial interventions.