Logotyp: till Uppsala universitets webbplats

The role of informal caregivers, who provide essential care and support to their ill or in-need relatives and friends, is crucial but frequently undervalued in the healthcare landscape. Navigating the complexities of caregiving, these individuals encounter numerous challenges that demand a considerable amount of their resources and energy, often without adequate support. Despite these difficulties, caregiving can also be a source of fulfillment and empowerment to some. IT applications can be seen as valuable support tools in the caregiving process. 

This thesis draws on six studies, utilizing semi-structured interviews and focus groups with informal caregivers, alongside discussions with healthcare professionals, to explore the intricacies of informal caregiving. It also includes a heuristic evaluation of an IT application by UI/UX experts. Through thematic analysis, the research delves into the diverse needs of native Swedish caregivers, immigrant caregivers, and caregivers of patients with head and neck cancer. It proposes design solutions tailored to these specific groups, employing persuasive and positive design principles to develop an eCoaching application and a web-based health application named ‘Carer eSupport’, respectively. These applications are designed to address the identified needs, offering support and facilitating the caregiving process.

This thesis contributes to the field of Information Systems (IS) by advancing existing theories and creating adapted frameworks specifically for informal caregiving. It provides a comparative analysis of Persuasive Design (PSD) and Positive Design, detailing their strengths and weaknesses in developing IT applications for caregivers. The research examines the design processes, outcomes, and contextual suitability of each approach, focusing on behavioral psychology in PSD and emotional wellbeing in Positive Design. Practical insights and guidelines for integrating both approaches are offered, ensuring that IT solutions are effective and empathetic. The thesis also adapts and extends these frameworks to better meet the needs of informal caregivers, providing a basis for future research to validate these adaptations. Additionally, it includes the design and evaluation of IT applications like an eCoaching platform and a web-based health application, along with providing systematic design recommendations through a comprehensive literature review.

By focusing on the needs of native Swedish, immigrant, and head and neck cancer caregivers, this research underscores the challenges caregivers face and proposes solutions to manage the caregiving journey while maintaining their well-being. Overall, it emphasizes the necessity of crafting IT applications with empathy and inclusivity, truly embodying the spirit of ‘Care for caregivers.’

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.