The aim of the thesis is twofold. First, a need is exposed for adopting a situated design perspective in designing computer-based tools that support knowledge work. Second, an examination is made of what this perspective may reveal concerning the nature of processes and relations within the design situation. This is done to understand better what it means for users and developers, as well as other stakeholders, to approach and capture the tacit knowing within the work context. The argument for adopting a situated design perspective is based on experience drawn from development projects, as well as literature reviews. In these projects, the design situations encountered are best characterized as explorative and iteratively interpreted. Here, approaching and understanding the work context, together with the users, has at best been a pursuit of the vision of the future system guided by local circumstances, and where the users had difficulties in expressing and understanding what it is they want and how they want it. This implies that formal engineering methods, where the development work is reduced to an engineering endeavor based on a rationalistic perspective, are not sufficient. The situated design perspective is presented in this thesis as a conceptual model of the design practice, highlighting its constituent worlds, processes, and relations. The model depicts designing as an explorative and sense-making process, navigating between what is wanted or envisioned and what may be negotiated and discovered. It emphasizes the importance of the artifact being designed as a means to capture, communicate, and discover what is possible in the work context. The model makes clear that the design process is highly situated, and that it cannot take place outside the work context because of interdependent relationships. It is designing within the living work context, not design for an objectified one. Thus, it cannot be planned as a pure engineering endeavor, but needs to be viewed as a situated practice.

<p dir="ltr"><b>Background</b></p><p dir="ltr">Recent developments in cancer therapeutics have allowed increased use of Oral Anticancer Medications (OAMs), including in the treatment of breast cancer. Breast cancer is the most common cancer among women in the United States. Patients with breast cancer may face key barriers in managing their OAMs at home. These challenges can lead to sub-optimal adherence and lower the overall quality of life. Designing interventions that enhance the patient experience with use of OAMs requires a deeper understanding of barriers faced by patients as they navigate their cancer care journey. The objective of this study was to identify the unmet medication management needs of patients with breast cancer who are receiving OAMs and co-design an early prototype intervention with patients to support medication management needs of patients with breast cancer.</p><p dir="ltr"><b>Methods</b></p><p dir="ltr">Two phases comprise this study. Phase 1 involved patient-journey mapping to characterize the longitudinal experience of OAMs use among patients diagnosed with breast cancer. In phase 2, we conducted participatory design (PD) workshops to develop a prototype tool to address OAM needs identified in phase 1. All participants were recruited from an outpatient breast cancer clinic in Indianapolis. Eligible participants were: 18 years of age or older, diagnosed with breast cancer, and currently receiving an OAM. All participants completed a brief sociodemographic and health information questionnaire. In phase 1, enrolled persons participated in a journey mapping exercise through semi-structured interviews. Interviews were conducted either in-person or remotely via Zoom, based on participant preference. For each interview, two researchers and the participant collaborated to create individual patient journey maps to generate a concise visual storyboard focused on medication use experiences related to OAMs. The journey maps helped capture treatment timelines, key markers of medication use, and specific barriers faced by patients. Individual journey maps were consolidated to generate personas representing groups of patients with related characteristics, treatment types, goals, and unmet needs. In phase 2, three rounds of PD workshops were conducted using the focus group format to develop an early prototype intervention. In round one (inspiration stage), participants defined the problem space and prioritized a list of challenges amenable to solutions; in round two (ideation stage), participants generated multiple possible solutions and design ideas; and in round three (convergence stage), two design concepts were selected and evaluated by participants.</p><p dir="ltr"><b>Results</b></p><p dir="ltr">In phase 1, 12 interviews (11 females and 1 male) were completed. The median age of participants was 65.5 years (range, 37-75). Participants were divided into two groups based on their prescribed medication types: (1) specialty medication (palbociclib or ribociclib; n=4 patients) and (2) traditional medication (tamoxifen, anastrozole, or exemestane; n=8 patients). We defined ‘Specialty’ medications as those that require specialty pharmacies and ‘traditional’ medications as those obtainable in local community pharmacies. To represent participants across these two broad categories of medications, two personas were created. Participants who had been prescribed specialty medication reported difficulty navigating the insurance process during medication fills, while participants who prescribed traditional medication did not. Notably, the word “prior authorization” was not used by participants to explain the issues they experienced. While all participants reported having side effects from their medications, sub-optimal adherence (n=2) was reported among the traditional medication group only. Other participants taking traditional medications either found their own ways to manage side effects or simply reported: “dealing with side effects as I don’t want cancer.” Participants expressed coping with side effects by enduring them. Participants had few strategies to manage their side effects, often stating that “they didn’t think of reaching out to the doctor,” when asked. Additionally, participants mentioned needing more financial and emotional support during their treatment journey. In phase 2, each PD session was conducted with 4-5 participants and 2 researchers (the design panel). Participants identified key challenges including difficulties navigating resources and information as well as managing medication side effects. The design panel prioritized two design concepts, which were subsequently developed into two prototypes: 1) a physical breast cancer handbook; and 2) an interactive treatment navigation app for use on tablet and smartphone devices. Our team plans to consolidate, further develop, and evaluate these prototypes in subsequent work as a follow up to this pilot study.</p><p dir="ltr"><b>Conclusion</b></p><p dir="ltr">This study provides insight into the patient experience with OAMs. The personas created can be applied in designing interventions tailored to breast cancer patients’ needs and goals, while the consolidated journey maps identify potential areas for improvement. Adequate patient education and enhanced tools and processes are necessary to manage medication side effects effectively, ultimately leading to improved medication outcomes and assisting patients in navigating their treatment. The two design concepts require further revision prior to implementation and pilot testing.</p>

Children’s right to participation in situations that matter to them is stated in law and convention texts and is emphasized by the children themselves in research studies, too. When actively involved, their perspective is visualized. Children’s use of interactive technology has increased considerably during the last decade. The use of applications and web sites are becoming a regular occurrence in paediatric healthcare. The overall aim was to develop and test, together with children, an interactive communication tool meant to facilitate young children’s participation in healthcare situations. To understand children’s varied perceptions of their involvement in healthcare situations, interviews, drawings and vignettes were used in a phenomenographic approach (I). A participatory design iteratively evaluated evolving prototypes of an application (II). Video observations and hermeneutics captured the meanings of the participation cues that the children demonstrated when they used the application in healthcare situations (III). A quantitative approach was used to identify patterns in the children’s cue use (IV). In total, 114 children in two clinical settings and in a preschool were involved. The result showed that the children perceived themselves, their parents and the professionals as actors in a healthcare situation, although all were perceived to act differently (I). The children contributed important information on age-appropriateness, usability and likeability in the iterative evaluating phases that eventually ended up in the application (II). When using the application in healthcare situations, the cues they demonstrated were understood as representing a curious, thoughtful or affirmative meaning (III). Curious cues were demonstrated to the highest extent. The three-year-olds and the children with the least experience of healthcare situations demonstrated the highest numbers of cues (IV). Conclusion: when using the application, the children demonstrated a situated participation which was influenced by their perspective of the situation and their inter-inter-action with the application as well as the health professional. The children’s situated participation provided the professionals’ with additional ways of guiding the children based on their perspectives. / I lag- och konventionstexter, liksom i forskning, som använder barnens egna uttryck betonas deras rättighet att vara delaktiga i situationer av betydelse för dem. Genom att delta kan de göra sitt perspektiv synligt. Under det senaste årtiondet har barns användning av interaktiv teknik ökat kraftigt. Applikationer och web-sidor används nuförtiden även flitigt inom barnsjukvården. Avhandlingens övergripande syfte var att utveckla och pröva, tillsammans med barn, ett interaktivt kommunikationsverktyg avsett att möjliggöra yngre barns delaktighet i vårdsituationer. Intervjuer, teckningar och vignetter användes för att, fenomenografiskt, förstå barnens uppfattningar av att vara i en vårdsituation (I). En iterativ deltagarbaserad design användes för att utveckla en prototyp av en applikation. En hermeneutisk tolkning av video-observationer fångade meningen i barnens sätt att visa sin delaktighet (hintar) vid användningen av applikationen i vårdsituationer (III). En deduktiv, kvantitativ ansats användes för att identifiera mönster i barnens sätt att visa sin delaktighet när de använde applikationen (IV). Resultatet visade att barnen uppfattade sig själva, föräldrarna och vårdpersonalen som aktörer i situationen, även om alla uppfattades agera på olika sätt (I). Barnen bidrog i den iterativa processen med viktig information gällande aspekter som åldersanpassning, användbarhet och hur väl den tilltalar dem, vilket slutligen ledde fram till den färdiga applikationen (II). Barnens sätt att visa sin delaktighet när de använde applikationen förstods ha en nyfiken, tankfull och självbekräftande mening (III). Nyfikenheten visades mest vid användningen av applikationen. Treåringarna samt barnen med minst vårderfarenhet använde applikationen i störst utsträckning (IV). Sammanfattning: när applikationen användes i vårdsituationen visade barnen en situerad delaktighet vilken byggde på deras perspektiv på den aktuella situationen samt på deras inter-inter-aktion med applikationen och vårdpersonalen. Genom detta erbjöds vårdpersonalen ytterligare ett sätt att guida barnet utifrån barnets eget perspektiv.