Awais Ahmad: Designing for Well-being: A Human-Centred Design Approach to a Web-based Application to Support Informal Caregivers

Abstract

Healthcare systems worldwide face increasing pressure due to resource limitations and the rising care demands of ageing populations. In cancer care, the shift from hospital-based treatment to home environments has placed much of the daily caregiving on family members. Known as informal caregivers (ICs), these individuals provide unpaid support, often taking on this role out of necessity rather than choice. They frequently lack access to the information and resources required for effective caregiving at home.

These increased responsibilities, combined with insufficient support, have significant implications for ICs’ well-being. Well-being is a multidimensional concept that includes physical health, mental state, and emotional stability. It is particularly vulnerable during major life transitions, such as when a close relative is diagnosed with a severe illness. ICs of individuals with head and neck cancer (HNC) are especially affected. This thesis is part of the Carer eSupport project, which aims to develop and evaluate a web-based application to support ICs.

The thesis aims to provide guidelines for developing and evaluating web-based applications that support the well-being of ICs of individuals with HNC. It also identifies factors that influence the acceptance and use of such applications. In doing so, the thesis highlights the situation of ICs, who play an essential role in cancer care but often receive limited support.

The thesis comprises five journal articles. A human-centred design process guided the overall work. Qualitative methods, including focus groups and interviews, were primarily used. Empirical data were analysed through thematic analysis.

Findings highlight challenges faced by ICs, including exclusion from healthcare processes, disruptions to daily routines, uncertainty about treatment outcomes, and shifts in identity and relationships. The results emphasise the need to address both functional needs, such as tailored information and structured support, and psychosocial challenges.

Acceptance and use depend on usability, trust, emotional relevance, and support from the healthcare system. Web-based applications can strengthen ICs' preparedness and support well-being when they are accessible, credible, and connected to human support. Designing for ICs’ well-being, therefore, requires approaches rooted in their daily routines and backed by healthcare systems that recognise ICs as partners in cancer care.