Background: A patient decision aid (PtDA) can support shared decision making (SDM) in preference-sensitive care, with more than one clinically applicable treatment option. The development of a PtDA is a complex process, involving several steps, such as designing, developing and testing the draft with all the stakeholders, known as alpha testing. This is followed by testing in ‘real life’ situations, known as beta testing, and then finalising the definite version. Our aim was developing and alpha testing a PtDA for primary treatment of early stage breast cancer, ensuring that the tool is considered relevant, valid and feasible by patients and professionals. Methods: Our qualitative descriptive study applied various methods including face-to-face think-aloud interviews, a focus group and semi-structured telephone interviews. The study population consisted of breast cancer patients facing the choice between breast-conserving therapy with or without preceding neo-adjuvant chemotherapy and mastectomy, and professionals involved in breast cancer care in dedicated multidisciplinary breast cancer teams. Results: A PtDA was developed in four iterative test rounds, taking nearly 2 years, involving 26 patients and 26 professionals. While the research group initially opted for simplicity for the sake of implementation, the clinicians objected that the complexity of the decision could not be ignored. Other topics of concern were the conflicting views of professionals and patients regarding side effects, the amount of information and how to present it. Conclusion: The development was an extensive process, because the professionals rejected the simplifications proposed by the research group. This resulted in the development of a completely new draft PtDA, which took double the expected time and resources. The final version of the PtDA appeared to be well-appreciated by professionals and patients, although its acceptability will only be proven in actual practice (beta testing)
DOCUMENT
Introduction: The implementation of oncology care pathways that standardize organizational procedures has improved cancer care in recent years. However, the involvement of “authentic” patients and caregivers in quality improvement of these predetermined pathways is in its infancy, especially the scholarly reflection on this process. We, therefore, aim to explore the multidisciplinary challenges both in practice, when cancer patients, their caregivers, and a multidisciplinary team of professionals work together on quality improvement, as well as in our research team, in which a social scientist, health care professionals, health care researchers, and experience experts design a research project together. Methods and design: Experience-based co-design will be used to involve cancer patients and their caregivers in a qualitative research design. In-depth open discovery interviews with 12 colorectal cancer patients, 12 breast cancer patients, and seven patients with cancer-associated thrombosis and their caregivers, and focus group discussions with professionals from various disciplines will be conducted. During the subsequent prioritization events and various co-design quality improvement meetings, observational field notes will be made on the multidisciplinary challenges these participants face in the process of co-design, and evaluation interviews will be done afterwards. Similar data will be collected during the monthly meetings of our multidisciplinary research team. The data will be analyzed according to the constant comparative method. Discussion: This study may facilitate quality improvement programs in oncologic care pathways, by increasing our real-world knowledge about the challenges of involving “experience experts” together with a team of multidisciplinary professionals in the implementation process of quality improvement. Such co-creation might be challenging due to the traditional paternalistic relationship, actual disease-/treatment-related constraints, and a lack of shared language and culture between patients, caregivers, and professionals and between professionals from various disciplines. These challenges have to be met in order to establish equality, respect, team spirit, and eventual meaningful participation.
DOCUMENT
Physical activity (PA) can have a substantial benefit in the prevention, treatment andrehabilitation of (breast) cancer. Wearable devices offer possibilities to monitor PA,to provide feedback and to set targets. Although the market for PA related wearabledevices is booming, the impact of these wearables is questionable. One of the mainconcerns is the limitations to address individual needs of users, among which specificgroups such as women with breast cancer. Through design, we see opportunities tostimulate for self-enhancement while encouraging PA after cancer treatment.Following a constructive design research approach, Aymée was designed. Aymée is asmart bra that changes its pattern based on the amount of PA. Through thisinteraction, Aymée aims to reinforce women recovering from breast cancer to feelgood about themselves and to be (more) active. In this paper, we describe both thedesign approach in co-creation with former breast-cancer patients, as well as firstresults. We also discuss implications for designing intelligent systems that address PAencouragement.
DOCUMENT
‘Staying Alive’ is the title of an exhibition and of the 7th book in the Ebifananyi series and two exhibitions. One of the exhibitions took place at Afriart Gallery, the other one on the balcony of the new six story inpatient building of the Uganda Cancer Institute. Books and exhibitions present photographic documentation from the late 1960s and early 1970s and from more recent pasts, and reflections in words on the photographs and the history of the institute by Marissa Mika and I.The Uganda Cancer Institute was the first major cancer research and treatment facility in the Great Lakes region. It celebrates its 50th anniversary this year. While part of the reputation of the institute was/is that it is a place where people (are sent to) die, the aim is of course to keep them alive and develop knowledge about the disease that caught them.
LINK
Screening for psychological distress in patients with cancer is currently being debated in the British Journal of Cancer. Screening has been recommended, as elevated levels of distress have been consistently observed and clinicians tend to overlook the need of psychological support (Carlson et al, 2012; Carlson et al, 2013; National Comprehensive Cancer Network, 2013). On the other hand, it has been argued that screening should not be implemented, as the true benefit of screening and subsequent treatment of psychological distress is far from being definitively proven (Coyne, 2013). Recent findings on human resilience in the face of potentially traumatic events (PTEs) provide a new perspective on detecting and treating psychological distress in patients with cancer. Humans show strong resilience in the face of potentially traumatic events, such as cancer diagnosis and treatment (Bonanno et al, 2011). This observation leads us to propose two alternative approaches towards detecting and treating psychological distress in patients with cancer: ‘screening for psychological distress’ and ‘supporting resilience and case finding’.
DOCUMENT
Cancer and its treatments cause significant changes in sexuality that affect the quality of life of both patients and their partners. As these issues are not always discussed with healthcare professionals, cancer patients turn to online health communities to find answers to questions or for emotional support pertaining to sexual issues. By using a discursive psychological perspective, we explore the social actions that participants in online health forums perform when discussing sexuality. Data were collected by entering search terms in the search bars of three online health forums. Our analysis of 213 threads, containing 1,275 posts, provides insight into how participants who present themselves as women with cancer account for their sexual issues and, in doing so, orient to two intertwined norms: Having untroubled sex is part of a couple’s relationship, and male partners are entitled to having untroubled sex. We discuss the potential harmful consequences of orienting to norms related to sexual behaviour. Yet, our findings can also help healthcare professionals in broaching the topic of sexuality in conversations with cancer patients. The insights of this study into what female patients themselves treat as relevant can assist health professionals in better aligning with patients’ interactional concerns.
DOCUMENT
Maintaining exercise behavior is crucial for cancer survivors, yet adherence to exercise recommendations remains low. This study explores the experiences and perspectives of community-working physical therapists and survivors of cancer regarding barriers and facilitators that support the maintenance of exercise behavior post-treatment.
MULTIFILE
The aim of the research reported in this thesis was to gain knowledge about the implementation of evidence‐based practice (EBP) in nursing to find a way to integrate shared decision making (SDM) with EBP in a chronic care environment in nursing, and to develop a strategy for an integrated approach of EBP and SDM in daily nursing practice in the individual aftercare for cancer survivors.
DOCUMENT
The seventh book in the Ebifnanyi series is called Staying Alive. It considers photographs that were a tool in medical practices and research, and the documentation of the history of the Uganda Cancer Institute. In a place where death is often around the corner, photographs freeze time, but also could be said to keep pasts and the people living in them alive.
LINK
Reflection on the process towards and around the publication 'Ebifananyi VII, Staying Alive - documenting the Uganda Cancer Institute' by medical historian Marissa Mika
LINK
