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.status: publishe

Researching and Designing Healthcare Environments: a Systematized Review of Creative Research Methods

In research and design, Creative Research Methods (CRMs) are useful to gain insight into user perspectives. Reviews suggest that CRMs offer potential to engage people, yet little detail is available regarding their use in relation to built healthcare environments. Consider environments for cancer care, where patients are confronted with particular physical and emotional challenges. This review aims to synthesize what is known from existing literature about CRMs exploring user experience when researching and designing (cancer) care environments. Based on 16 items we evaluate the potential of CRMs, offering insight into why, how, where and when they are employed. Generally little consideration is shown for participants’ abilities and limitations. Our analysis further emphasises the importance of reflecting on visual methods, and the need to report research approaches transparently including where CRMs are used. A sophisticated research approach can leverage CRMs’ potential to study experience and carry artefacts forward to inform design(ers).status: Published onlin

Creative methods exploring user-experience in research and design of healthcare environments: a systematized review protocol

Increasingly we recognise attempts that explore user experience in healthcare settings both in research and design endeavours. Our primary interest is in identifying creative research methods (CRM) that are used to gauge the experience of healthcare environments. We see potential in an active involvement of patients and caregivers as experts, not only relying on their present and past experience, but also through CRM, accessing their latent needs and offering opportunities to formulate their vision of the future. We define the term creative in such a way that includes terminology common in both design and research practice. This protocol outlines the steps taken to systematically investigate what is known from existing literature about CRM exploring user experience in research and architectural design processes in healthcare generally or in cancer care in particular. It relays the search strategy for a database search and an additional search of grey literature. The protocol is expected to be helpful in carrying out reviews in related fields contributing to knowledge synthesis techniques for qualitative research. We furthermore anticipate that the dissemination of design-related research outside of peer-reviewed journals will continue and will require further work to ensure inclusion in processes of knowledge synthesis. The final review will give insight into why, where and how CRM are currently employed and applied to gauge the user experience of healthcare environments.no ISSNstatus: publishe

The roles of cancer care facilities in users’ well-being

The experience of cancer patients often includes numerous consultations and procedures taking place in a variety of (cancer) care facilities. Relatives and care professionals play a part and have unique perspectives. This article describes the roles cancer care facilities play in the well-being of patients, relatives, and care professionals, and identifies spatial aspects contributing to these roles. The study draws on qualitative interviews with 15 participants (five patients receiving cancer treatment in four hospitals, five relatives, and five care professionals). Interviews with patients were complemented with photovoice and walking interviews. Cancer care facilities turn out to play a vital role by containing and mediating the confrontation with cancer. This requires attention for boundaries, routes, and transitions. Moreover, cancer care facilities can support coping by offering experiences of efficiency and normality, and opportunities to distance oneself from features typical of hospitals. The facilities are constantly changing, and the people they receive are also dealing with changing bodies. Attention should be paid to the sensory qualities and atmosphere at points of entrance. All users would benefit from improved spatial organisation, ‘homelike’ qualities in designated spaces, and increased awareness of options to use spaces flexibly while ensuring a sense of spatial stability.status: Published onlin

At Home in the Hospital and Hospitalized at Home: Exploring Experiences of Cancer Care Environments

Contemporary cancer care takes place within a healthcare system catering for a highly mobile demographic. This study aimed to better understand the experience of patients within the cancer care environment (CCE) and the role of spatial aspects therein. We explore the effectiveness of photovoice in discussing this experience over time and the extent to which image production helps emphasize the role of spatial aspects. Three patients were interviewed over the course of six weeks. Experiences of the CCE turned out to change over time and across space as repeated travel to the hospital and transitions within the hospital resulted in new impressions and routines. Participants describe the dynamic and linked makeup of the CCE, suggesting a concatenation of places over time. The photovoice method blurs the boundary between researcher and participant, allowing features of the CCE to come to the fore that would otherwise not be considered. Over time, the hospital becomes a second home to some, facilitating more than medical consultations and treatments only. A particular challenge for hospital design is therefore to improve the initial experience. Simultaneously, the home environment becomes a place of medical care at a distance. Caution is required when transforming the home into such a place as patients can feel insecure and distant from the watchful eye of the specialists.status: publishe

How architects and clients integrate user perspectives in cancer care facility design

Objective – This paper seeks to investigate the extent to which 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. Background – Increasingly hospital users contribute to design briefs and participate as stakeholders in design processes. If the best available research and experience is to inform the design of cancer care facilities and ensure quality improvement in care, it is essential that user perspectives are engaged. Cancer patients are interesting to consult as they are exposed to different aspects of healthcare environments in a wide variety of situations. However, the literature suggests that users are inadequately addressed in design briefs for healthcare environments. Research question – What supports and challenges can be identified regarding the integration of user perspectives in the design of cancer care facilities? Methods – A multiple case study enquiry analysed two cases. The cases are information-rich and unique examples of completed building projects that encompass cancer care facilities. They enable an in-depth study of the design process as the phenomenon of interest. One case is a new general hospital in which cancer care is integrated. The other case concerns a renovation of an oncology consultation in a university hospital. Interviews were conducted with the project’s ‘client’ and ‘architect’ and project documents were analysed. Results – The integration of user perspectives is supported by individual staff members, and by the use of mock-ups and 3D images. A major challenge is that patients are only consulted with indirectly. Care professionals are a primary source of knowledge informing the design process with their own perspectives and that of patients. The more tangible a design becomes, the more feedback is elicited. A tension results between care professionals’ ideas to make the design (more) effective and the ambition of ‘building oriented’ stakeholders to finalise decisions. Also, matters of spatial organisation established early on make it difficult to respond to the evolving organisation of cancer care. Conclusion – For clients and architects to develop an affinity with the perspectives of people affected by cancer, it is necessary to reconsider how knowledge about users is acquired. Our findings suggest attention for patient perspectives may require focussing on spaces other than those utilised for the delivery of care. The approach taken provided insights into current practice and further suggests clients distinguish between staff participation for organisational reasons and spatial design activities.status: accepte

How do adolescents affected by cancer experience a hospital environment?

Purpose. Adolescence is a transition period involving complex development processes. A life-threatening disease like cancer jeopardizes this development and often exposes adolescents to hospital environments that are unadjusted to them. Despite growing research on how the physical environment affects the well-being of the (child as) patient, adolescents are often overlooked. We investigated how adolescents experience a hospital stay and how the physical environment influences that experience. Methods. We interviewed ten adolescents who are or have been affected by cancer between the age of 14 and 25, and discussed preliminary findings with professional experts. Results. In young people’s experience of a hospital environment three interrelated themes stand out: support, distraction, and control and autonomy. Adolescent patients primarily look for connections with life outside the hospital. The hospital confronts them with different obstacles, most of which appear to relate to difficulties concerning the loss of these connections. These obstacles include a lack of freedom, control and autonomy; limited social interaction with friends; inability to participate in daily activities; boredom; and a lack of privacy. Conclusion. As a group, adolescent patients clearly have specific characteristics and needs. This specificity, which is largely hidden in the development and transition they are undergoing, explains the need for a hospital environment dedicated to them – be it a separate adolescent ward, or the grouping of adolescents on children’s and/or adult wards. Rather than focusing on a superficial list of wishes and needs, the design of this environment should consider the specific reasons driving adolescents’ wishes and needs.status: publishe

The hospital environment through the eyes of adolescents with long-term patient experience. Young people affected by cancer speaking

Adolescence is a period of transition that comes with complex development processes. When an adolescent is confronted with a chronic disease or the consequences of an accident, their development is jeopardized. Moreover, they are exposed to a hospital environment that is not adjusted to young people. Despite growing research on the effect of the physical environment on the well-being of the patient and the child as a patient, the adolescent is often overlooked. This study aimed to find out how adolescents experience a hospital stay and to what extent that experience is influenced by the physical environment, focusing on young people affected by cancer. Data were obtained through interviews with adolescents in this situation. Our findings suggest that adolescent patients are primarily looking for connections with life outside the hospital. The design strategies most likely to contribute to that are (1) maximally designing for freedom of choice, flexibility and spatial variety; (2) paying attention to the comfort of visiting family and friends; (3) providing in age-appropriate activities, a nice outdoor space and internet access; (4) pursuing aesthetic coherence and a homelike atmosphere; and (5) providing in the combination of individual patient rooms and a variety of communal rooms.status: publishe

The hospital environment from the perspective of young people affected by cancer

Introduction and Aims: Adolescence is a period of transition that comes with complex development processes. When adolescents are confronted with a chronic disease or the consequences of an accident, this development is jeopardized. They are separated from the familiar environment and exposed to hospital environments that are often unadjusted to young people. Despite growing research on how the physical environment affects the well-being of the (child as) patient, the adolescent is often overlooked. Therefore, we investigated how adolescents experience a hospital stay and to what extent their experience is influenced by the physical environment. In addition, we investigated what an adolescent-friendly hospital environment means from the perspective of the adolescents themselves. Methods: We (retrospectively) interviewed ten adolescents who are or have been affected by cancer between the age of 14 and 25. More important than their age, however, was their long-term experience as a patient. Preliminary findings were discussed with professional experts and adjusted to their input. Results: Our findings suggest that adolescent patients are primarily looking for connections with life outside the hospital. Design strategies that contribute to this include maximizing freedom of choice, flexibility and spatial variety; attending to the comfort of visiting family and friends; providing in age-appropriate activities, nice outdoor spaces and internet access; pursuing aesthetic coherence and a homelike atmosphere; and combining individual patient rooms with a variety of communal rooms. Discussion and Conclusion: There is a need for a hospital environment dedicated to young people, whether this takes shape as a separate adolescents’ ward, or as the grouping of adolescents on children’s and/or adult wards. Even if adolescent patients’ needs may somehow resemble those of other patient groups, as a group they clearly have specific features and needs, and this specificity is largely hidden in the process of development and transition they are undergoing.status: publishe