Shweta Premanandan: Care for Caregivers: Designing IT Applications for Informal Caregivers

Abstract

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.’