Women's experience of the health information process involving a digital information tool before commencing radiation therapy for breast cancer: a deductive interview study.

BACKGROUND: Individuals undergoing radiation therapy for breast cancer frequently request information before, throughout and after the treatment as a means to reduce distress. Nevertheless, the provision of information to meet individuals needs from their level of health literacy is often overlooked. Thus, individuals information needs are often unmet, leading to reports of discontent. Internet and digital information technology has significantly augmented the available information and changed the way in which persons accesses and comprehends information. As health information is no longer explicitly obtained from healthcare professionals, it is essential to examine the sequences of the health information process in general, and in relation to health literacy. This paper reports on qualitative interviews, targeting women diagnosed with breast cancer who were given access to a health information technology tool, Digi-Do, before commencing radiation therapy, during, and after treatment. METHODS: A qualitative research design, inspired by the integrated health literacy model, was chosen to enable critical reflection by the participating women. Semi-structured interviews were conducted with 15 women with access to a digital information tool, named Digi-Do, in addition to receiving standard information (oral and written) before commencing radiation therapy, during, and after treatment. A deductive thematic analysis process was conducted. RESULTS: The results demonstrate how knowledge, competence, and motivation influence women's experience of the health information process. Three main themes were found: Meeting interactive and personal needs by engaging with health information; Critical recognition of sources of information; and Capability to communicate comprehended health information. The findings reflect the women's experience of the four competencies: to access, understand, appraise, and apply, essential elements of the health information process. CONCLUSIONS: We can conclude that there is a need for tailored digital information tools, such as the Digi-Do, to enable iterative access and use of reliable health information before, during and after the radiation therapy process. The Digi-Do can be seen as a valuable complement to the interpersonal communication with health care professionals, facilitating a better understanding, and enabling iterative access and use of reliable health information before, during and after the radiotherapy treatment. This enhances a sense of preparedness before treatment starts.

Digi-Do: a digital information tool to support patients with breast cancer before, during, and after start of radiotherapy treatment: an RCT study protocol.

BACKGROUND: Radiation Therapy (RT) is a common treatment after breast cancer surgery and a complex process using high energy X-rays to eradicate cancer cells, important in reducing the risk of local recurrence. The high-tech environment and unfamiliar nature of RT can affect the patient's experience of the treatment. Misconceptions or lack of knowledge about RT processes can increase levels of anxiety and enhance feelings of being unprepared at the beginning of treatment. Moreover, the waiting time is often quite long. The primary aim of this study will be to evaluate whether a digital information tool with VR-technology and preparatory information can decrease distress as well as enhance the self-efficacy and health literacy of patients affected by breast cancer before, during, and after RT. A secondary aim will be to explore whether the digital information tool increase patient flow while maintaining or increasing the quality of care. METHOD: The study is a prospective and longitudinal RCT study with an Action Research participatory design approach including mixed-methods data collection, i.e., standardised instruments, qualitative interviews (face-to-face and telephone) with a phenomenological hermeneutical approach, diaries, observations, and time measurements, and scheduled to take place from autumn 2020 to spring 2022. The intervention group (n = 80), will receive standard care and information (oral and written) and the digital information tool; and the control group (n = 80), will receive standard care and information (oral and written). Study recruitment and randomisation will be completed at two centres in the west of Sweden. DISCUSSION: Research in this area is scarce and, to our knowledge, only few previous studies examine VR as a tool for increasing preparedness for patients with breast cancer about to undergo RT that also includes follow-ups six months after completed treatment. The participatory approach and design will safeguard the possibilities to capture the patient perspective throughout the development process, and the RCT design supports high research quality. Digitalisation brings new possibilities to provide safe, person-centred information that also displays a realistic picture of RT treatment and its contexts. The planned study will generate generalisable knowledge of relevance in similar health care contexts. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT04394325. Registered May 19, 2020. Prospectively registered.

Integrating perspectives of patients, healthcare professionals, system developers and academics in the co-design of a digital information tool.

BACKGROUND: Patients diagnosed with cancer who are due to commence radiotherapy, often, despite the provision of a considerable amount of information, report a range of unmet information needs about the treatment process. Factors such as inadequate provision of information, or the stressful situation of having to deal with information about unfamiliar things, may influence the patient's ability to comprehend the information. There is a need to further advance the format in which such information is presented. The composition of information should be tailored according to the patient's individual needs and style of learning. METHOD AND FINDINGS: The PD methodology is frequently used when a technology designed artefact is the desired result of the process. This research is descriptive of its kind and provides a transparent description of the co-design process used to develop an innovative digital information tool employing PD methodology where several stakeholders participated as co-designers. Involving different stakeholders in the process in line with recommended PD activities enabled us to develop a digital information tool that has the potential to be relevant and user-friendly for the ultimate consumer. CONCLUSIONS: Facilitating collaboration, structured PD activities can help researchers, healthcare professionals and patients to co-design patient information that meets the end users' needs. Furthermore, it can enhance the rigor of the process, ensure the relevance of the information, and finally have a potential to employ a positive effect on the reach of the related digital information tool.

Registered nurses and undergraduate nursing students' attitudes to performing end-of-life care.

Registered Nurses (RNs) are in the immediate position to provide End-of-life (EOL) care and counselling for patients and families in various settings. However, EOL-care often creates feelings of uncertainty and inadequacy linked to inexperience, lack of education, and attitude. To identify and describe factors associated with RNs' attitudes towards EOL-care, and to identify whether and how these attitudes differ from undergraduate nursing students' (UNSs) attitudes, a descriptive and comparative, quantitative study was performed. The FATCOD-instrument, focusing on attitude towards EOL-care, was used and the results analysed with descriptive and nonparametric statistics. In total, 287 RNs in 14 different specialist programmes, and 124 UNSs participated. A statistically significant difference (p = 0.032) was found in attitude towards EOL-care based on clinical experience. RNs in "Acute Care" and "Paediatric & Psychiatry Care" specialist programmes had a less positive attitude towards EOL-care (compared to RNs in other specialist programmes), while RNs attending the Palliative Care programme had the most positive attitudes. RNs and UNSs' scores differed statistically significantly in 17 out of 30 FATCOD variables. Finally, the results imply that there is a need for greater emphasis on further continuing education within EOL care for RNs working in all types of clinical specialities to encourage RNs talking about death and to enhance attitudes towards EOL care.