Designing human-centred palliative environments from a multi-perspective approach: communication challenges between end-users, researchers, and designers

Abstract

The growing need for palliative care and increasing expectations from various end-users regarding the provision of high-quality palliative care makes it illogical to draw the same lines over and over again when the world keeps moving. Assuming that the physical character of a palliative environment (PE) can (when well-designed) positively impact the experiences of its various end-users (residents, family, caregivers, and volunteers), the adoption of a human-centred architectural approach is recommended. Implementing this approach in the design process can be characterised as the ability to “look through the eyes of various end-users” or “share and understand end-users’ state of mind”. However, it is hypothesised that ethical and practical factors prevent architects from engaging directly with end-users in PEs and that current academic research in this field seems to remain confined to academic discourse. In addition, a preliminary literature review revealed a need for a multi-perspective approach in which residing, visiting, working, and volunteering end-users in various PEs are heard. Our study, therefore, focuses on (i) collecting “architectural-rich end-users’ experiences” with(in) a hospice, a daycare centre, and a palliative care unit in Belgium and (ii) disseminating these experiences to architectural practice. In this research study, we consider experiences ‘architectural-rich’ if they can generate empathy and inspiration by triggering the architects’ curiosity, personification, and imagination during the design process of PEs.

Communication appears to be our biggest challenge in the dialogue between the participant and researcher, and the researcher and designer. - First, there is a tension between ensuring that research in this field meets its purpose and is applicable in architectural practice and ensuring that it does not place unnecessary burdens on the participants. For example, end-users of PEs (particularly the residents) have arguably limited opportunities to experience the benefits of this research in future practice. Moreover, when approaching the end-of-life, taking part in research may also mean 'losing precious time with loved ones'. These concerns ask for attention to issues such as trust, empathy, comfort, and flexibility in the design and approach of research methods. Furthermore, getting an architecturally rich specification is an additional challenge. Interests in (interior) architecture do not usually play a primary role in the last phase of life. Apart from interest, most participants do not master the 'architectural language' and rarely share the same background and experiences with the researcher, making it sometimes difficult to express their experiences (that are affected by spatial aspects) using only words. - Second, to increase the limited uptake of research outcomes among architectural practitioners, there is a need for more tangible traces of actual experiences of end-users with(in) PEs to increase empathy and be inspiring. However, the relative lack of visualisations in current research studies contrasts with this purpose.

During this symposium, we want to share our insights by focusing on the methods applied in this in-depth Belgian study, such as participant observations, photo-elicitation interviews and empathic design. In doing so, we try to encourage an interactive discourse with the audience to share their insights on communicating about palliative care, experiences, and design.