{"id":15299,"date":"2026-05-20T07:47:57","date_gmt":"2026-05-20T07:47:57","guid":{"rendered":"https:\/\/www.proefschriftmaken.nl\/portfolio\/song-duimel\/"},"modified":"2026-05-20T07:48:07","modified_gmt":"2026-05-20T07:48:07","slug":"song-duimel","status":"publish","type":"us_portfolio","link":"https:\/\/www.proefschriftmaken.nl\/en\/portfolio\/song-duimel\/","title":{"rendered":"Song Duimel"},"content":{"rendered":"","protected":true},"excerpt":{"rendered":"","protected":true},"author":7,"featured_media":15300,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"us_portfolio_category":[45],"class_list":["post-15299","us_portfolio","type-us_portfolio","status-publish","post-password-required","hentry","us_portfolio_category-new-template"],"acf":{"naam_van_het_proefschift":"SHARING IS CARING","samenvatting":"Het besluitvormingsproces binnen chirurgische oncologie is uitdagend, omdat pati\u00ebnten vaak moeten kiezen tussen enerzijds overleving en anderzijds de langetermijngevolgen en hun kwaliteit van leven. In zulke situaties is gezamenlijke besluitvorming (shared decision-making; SDM) tussen de pati\u00ebnt en diens zorgverlener (en mogelijk de informele zorgverlener) belangrijk om tot een behandelkeuze te komen die de waarden, doelen en voorkeuren van de pati\u00ebnt reflecteren. Dit geldt in het bijzonder voor de context van hoofd-hals oncologie, waarbij pati\u00ebnten vaak ingrijpende behandelingen moeten ondergaan die hun dagelijks functioneren en kwaliteit van leven sterk be\u00efnvloeden. Dit proefschrift richt zich op de vraag of, en hoe gezamenlijke besluitvorming in de complexe chirurgische oncologie kan worden verbeterd, met specifieke aandacht voor hoofd-hals oncologie en een focus op mondkankerchirurgie.\n\nIn Hoofdstuk 2 namen we eerst een bredere kijk op het onlinezoekgedrag van pati\u00ebnten naar ondersteuning, om inzicht te krijgen waarom pati\u00ebnten met kanker online op zoek gaan naar informatie en\/of emotionele steun. Uiteindelijk identificeerden we drie pati\u00ebntprofielen: de \u201coverall seekers\u201d (algemene zoekers), de \u201coccasional seekers\u201d (incidentele zoekers) en de \u201ccontact exchangers\u201d (contact uitwisselaars). De profielen verschilden niet alleen in hun motieven om online te gaan, maar ook in hun mate van digitale gezondheidsvaardigheden. Deze inzichten kunnen zorgverleners helpen om nauwkeurige, betrouwbare (online) ondersteuning te bieden die is afgestemd op de behoeften van pati\u00ebnten.\n\nIn Hoofdstuk 3 hebben we onderzocht in hoeverre gezamenlijke besluitvorming wordt toegepast in de dagelijkse praktijk van de hoofd-halsoncologie. De resultaten laten zien dat gezamenlijke besluitvorming bij behandelkeuzes slechts in beperkte mate wordt toegepast. De hogere scores weerspiegelden vooral de bespreking van behandelopties, terwijl het expliciet achterhalen en integreren van de waarden, doelen en voorkeuren van de pati\u00ebnt minder de aandacht kregen. Tegelijkertijd ervoeren zowel chirurgen als pati\u00ebnten de mate van gezamenlijke besluitvorming relatief hoog, wat wijst op een overschatting van de eigen vaardigheden.\n\nIn Hoofdstuk 4 voerden we een systematische literatuurstudie uit naar de effectiviteit van audiovisuele materialen in de oncologie. De resultaten laten zien dat audiovisuele materialen als ondersteuning vooral direct een positief effect kunnen hebben op uitkomsten als kennis, begrip, angst en fysiologische reacties. Dit effect was met name zichtbaar wanneer de standaardzorg wordt vergeleken met de standaardzorg aangevuld met een opgenomen video of animatievideo. Er werden echter geen duidelijke langetermijneffecten aangetoond.\n\nIn Hoofdstuk 5 werd onderzocht welke strategie\u00ebn het meest effectief zijn voor het ontwerpen en implementeren van animatievideo\u2019s bij complexe behandelkeuzes binnen de chirurgische mondkankerzorg. Alle groepen gaven de voorkeur aan animatievideo's die informatie bieden over de medische en technische aspecten van de behandeling en de impact hiervan op het dagelijks leven. Pati\u00ebnten blijken daarbij sterk de voorkeur te geven aan uitgebreide informatie, terwijl zorgverleners en informele zorgverleners vreesden dat te veel detail kan leiden tot onrealistische verwachtingen. Een video moet eenvoudig en goed te volgen zijn en zich richten op het helder overbrengen van \u00e9\u00e9n onderwerp.\n\nKortom, dit proefschrift suggereert dat het ontwikkelen en implementeren van animatievideo's in complexe chirurgische oncologie moeilijk is door verschillen in behoeften en zorgen van eindgebruikers. Desondanks vormen audiovisuele materialen een veelbelovende aanvulling op de standaardzorg. Effectieve besluitvorming steunt niet noodzakelijk op geavanceerde visuele technologie\u00ebn; relatief \u201ceenvoudige\u201d visuele hulpmiddelen zoals animaties kunnen al bijdragen aan het verbeteren van pati\u00ebntuitkomsten. Ten slotte onderstreept het proefschrift het belang van interdisciplinaire samenwerking bij het uitvoeren van communicatieonderzoek in een complexe medische omgeving.","summary":"Treatment decision-making in complex surgical oncology is challenging, as patients often face choices that weigh survival against long-term implications and quality of life (QoL). These decisions are medically complex, emotionally charged, and highly sensitive to individual preferences. In such contexts, a strong and collaborative shared decision-making (SDM) process between patients and clinicians, and when present, informal caregivers, is essential to arrive at treatment choices that reflect the patient\u2019s values, goals, and preferences 1\u20133. This is particularly true for head and neck cancer (HNC), where patients frequently undergo invasive treatment that can profoundly affect their daily functioning and QoL 4\u20137. Effective communication and information provision in this context are critical for delivering high-quality care, especially since many patients with HNC experience decisional conflict and regret 8\u201310. Despite the clear relevance of SDM in this context, both research and practical implementation of SDM in head and neck oncology remain limited 11. This dissertation, therefore, explored whether and how SDM in complex surgical oncology can be improved by focusing on oral cancer surgery. Specifically, it consists of two parts.\n\nWe first explored how support-seeking behaviors and communication practices can influence patient involvement in decision-making before and during the clinical encounter. We aimed to gain insight into how the actions of both patients and clinicians contribute to treatment communication and SDM (Part I: Support-seeking practices and shared decision-making). Accordingly, we conducted two quantitative studies: one focusing on the online support-seeking behavior of patients with cancer (Chapter 2) and the other investigating the current perceived and observed SDM levels in head and neck oncology (Chapter 3). Next, we explored the role of audiovisual materials as a means of mediated patient education, examining their potential to improve communication and SDM among patients, clinicians, and informal caregivers in complex surgical oncology (Part II: Supportive audiovisual materials). For this reason, we systematically reviewed the literature on audiovisuals (Chapter 4) and explored the perspectives of patients, clinicians, and informal caregivers as potential end-users of (2D\/3D) animated videos (Chapter 5).\n\nIn Chapter 2, we first adopted a broader perspective on patients\u2019 support-seeking behavior to gain an understanding of why patients with cancer seek informational and\/or emotional support online. This knowledge is fundamental to understanding how patients might prepare for or complement conversations with their clinician (e.g., head and neck surgeon), including consultations in which a (complex) decision has to be taken. Building on this, we aimed to profile patients based on their motives for seeking informational and\/or emotional support online and to explore how these profiles differed in terms of psychological and background characteristics, as well as in patients\u2019 perceptions of health care services.\n\nThree patient profiles were identified, each differing in their online support-seeking behavior. The most active type of patients were the \u201coverall seekers\u201d. Compared to the other two groups, patients in this group were the most motivated to use Kanker.nl, to seek informational support, complement information from healthcare professionals, and address conflicting information. Moreover, they appeared to be the most motivated to give and\/or receive emotional support online. The \u201coccasional seeker\u201d was the second largest group of patients identified. This group was moderately motivated to use Kanker.nl to find complementary information and to deal with conflicting information, and the least motivated to give and\/or receive peer support. The third type of patients, the \u201ccontact exchangers\u201d, were the least motivated to use Kanker.nl to find information that complements that of healthcare professionals or to deal with conflicting information. However, they were motivated to use the website for peer contact. Furthermore, these patient profiles varied not only in their motives for going online but also in their level of eHealth literacy.\n\nIn Chapter 3, we explored the uptake of SDM in daily practice in head and neck oncology. A total of 42 treatment decision-making consultations were audio-recorded amongst five head and neck surgeons at an outpatient clinic. Each of the 36 recordings was carefully analyzed by two independent assessors to assess the objective SDM level. The results showed that SDM is only moderately applied in current treatment decision-making in head and neck oncology. Surgeons\u2019 efforts to apply SDM were particularly short in those elements most central to the process, with higher OPTION-scores reflecting discussion of treatment options rather than the elicitation and integration of patient values, goals, and preferences. Conversely, both surgeons and patients perceived a relatively high level of SDM practices during consultation. While both surgeons and patients mostly preferred a collaborative approach to decision-making, in almost two-thirds of cases, the surgeons\u2019 assumptions about patients\u2019 preferences for involvement were correct. The duration of the consultation and patient OPTION-score were correlated with the observed SDM level of surgeons.\n\nIn Chapter 4, we systematically reviewed the literature to assess the effectiveness of audiovisual materials providing pre-treatment information in oncology on patient outcomes. After retrieval of 15,138 records from five different electronic databases and screening against the inclusion criteria, 37 full-text articles were found to be eligible for inclusion. The results suggest that audiovisual materials in oncology patient education hold promise for improving specific immediate outcomes, such as knowledge, particularly when standard verbal care is compared with standard care complemented with a recorded video or health animation. Slightly longer after exposure, the audiovisuals also led to positive effects on patients\u2019 knowledge, understanding, anxiety, and physiological responses. However, results indicated no overall benefits of using audiovisual materials, for example, when both the intervention and control groups received supplementary educational materials. Finally, no long-term outcomes, if measured at all, were found to be significantly in favor of the intervention group receiving an audiovisual.\n\nChapter 5 aimed to provide insight into the most effective approaches to designing and implementing animated videos for complex treatment decision-making in the context of oral surgical oncology. Six focus group sessions and two individual interviews with patients, informal caregivers, and clinicians were analyzed. Patients, informal caregivers, and clinicians preferred animated videos that included information on the medical and technical aspects of treatment and postoperative care, as well as their impact on daily life. However, patients strongly favored including information about all aspects of the care journey. We also found that patients preferred comprehensive information, whereas clinicians and informal caregivers expressed concern that providing too much detail might create unrealistic expectations. Most patients and clinicians favored animated formats because they were considered less confronting than real-life video recordings. However, the 3D-animated videos were reported to be fear-provoking because of how realistically and in detail they portrayed the information. Finally, we identified substantial differences among patients, informal caregivers, and clinicians regarding perceived usefulness and ease of use, as well as the best moment to implement a video in the patient journey.\n\nOverall, this study suggests that developing and implementing animated videos in complex surgical oncology, such as oral cancer surgery, is challenging. Differences in end-users' needs, preferences, and concerns complicate the development of animated videos that inform and empower patients while minimizing distress and managing expectations realistically.\n\nThis dissertation contributes to the healthcare communication field in several ways. First, it adds to the limited existing research on SDM about treatment decisions in complex surgical oncology, specifically oral cancer. Second, the mixed-methods approach provides a comprehensive understanding of the communication processes and support-seeking practices that influence patient involvement in decision-making. Third, it shows that additional information resources, such as audiovisual materials, alongside standard care are promising. Fourth, treatment decision-making in surgical oral oncology does not necessarily require intricate visual tools to effectively inform patients; \"simpler\" visuals, such as health animations, could be a solution. Finally, it underscores the importance of interdisciplinary collaboration when conducting communication research in a complex medical setting.","auteur":"Song Duimel","auteur_slug":"song-duimel","publicatiedatum":"25 juni 2026","taal":"EN","url_flipbook":"https:\/\/ebook.proefschriftmaken.nl\/ebook\/songduimel?iframe=true","url_download_pdf":"https:\/\/ebook.proefschriftmaken.nl\/download\/5b478428-98a7-4ae5-a4eb-f5692562b287\/optimized","url_epub":"","ordernummer":"18893","isbn":"978-94-6534-365-5","doi_nummer":"","naam_universiteit":"Universiteit van Amsterdam","afbeeldingen":15301,"naam_student:":"","binnenwerk":"","universiteit":"Universiteit van Amsterdam","cover":"","afwerking":"","cover_afwerking":"","design":""},"_links":{"self":[{"href":"https:\/\/www.proefschriftmaken.nl\/en\/wp-json\/wp\/v2\/us_portfolio\/15299","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.proefschriftmaken.nl\/en\/wp-json\/wp\/v2\/us_portfolio"}],"about":[{"href":"https:\/\/www.proefschriftmaken.nl\/en\/wp-json\/wp\/v2\/types\/us_portfolio"}],"author":[{"embeddable":true,"href":"https:\/\/www.proefschriftmaken.nl\/en\/wp-json\/wp\/v2\/users\/7"}],"replies":[{"embeddable":true,"href":"https:\/\/www.proefschriftmaken.nl\/en\/wp-json\/wp\/v2\/comments?post=15299"}],"version-history":[{"count":1,"href":"https:\/\/www.proefschriftmaken.nl\/en\/wp-json\/wp\/v2\/us_portfolio\/15299\/revisions"}],"predecessor-version":[{"id":15302,"href":"https:\/\/www.proefschriftmaken.nl\/en\/wp-json\/wp\/v2\/us_portfolio\/15299\/revisions\/15302"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.proefschriftmaken.nl\/en\/wp-json\/wp\/v2\/media\/15300"}],"wp:attachment":[{"href":"https:\/\/www.proefschriftmaken.nl\/en\/wp-json\/wp\/v2\/media?parent=15299"}],"wp:term":[{"taxonomy":"us_portfolio_category","embeddable":true,"href":"https:\/\/www.proefschriftmaken.nl\/en\/wp-json\/wp\/v2\/us_portfolio_category?post=15299"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}