Barriers for Participation in the Danish Colorectal Cancer Screening Program: a Qualitative Study.

PURPOSE: The participation rate in the Danish National Screening Program for Colorectal Cancer is around 60%. Since early detection of cancer through the colorectal cancer screening program (CRCS) reduces mortality rates, it is important to understand why people do not participate. The aim of this study was therefore to examine in depth why some people do not participate in the Danish CRCS program. METHODS: Individual semi-structured interviews were conducted with 18 people who had not participated in the national CRCS program. Data was analyzed using an inductive hermeneutic approach. RESULTS: The analysis uncovered three main themes describing barriers to screening: (a) the accountability for ensuring personal health covered the following sub-themes: (i) when invitation is out of sight it is out of mind, (ii) aversion against own stool sample collection, and (iii) the perceived risk of getting colorectal cancer (CRC); (b) attitudes towards the healthcare system and its organization covered the following sub-themes: (i) positivity towards CRCS, (ii) trust in the healthcare system, (iii) lack of internal communication in the healthcare system, and (iv) wish for involvement of the general practitioner (GP); (c) knowledge about disease and screening covered the following sub-themes: (i) knowledge about CRC and CRCS, (ii) wish for information via new channels, and (iii) CRC is rarely something you talk about. CONCLUSION: Among the informants included in this study, lack of participation in the CRCS program was not due to an active opt-out, as most informants had intentions of participating. The informants thought it would motivate them to participate if their GP would remind them of the screening program.

The journey to solo motherhood - An explorative study.

OBJECTIVES: In high-income countries, the number of women who choose to become single mothers is rising. This trend is also reflected in Denmark. The aim of this study was to explore the decision- making process of becoming a solo mother. STUDY DESIGN: This study was designed as an explorative, qualitative study. Semi-structured interviews were conducted face to face or by telephone, to explore women's thoughts and experiences of becoming solo mothers. A systematic text condensation and interpretation were used to analyze the interview material. RESULTS: Twenty solo mothers-to-be participated in the study and 38 interviews were conducted, before and after pregnancy. Four themes related to the journey of solo motherhood emerged from the data analysis: The dream of motherhood in a nuclear family - a shattered dream, Achieving socio-emotional acceptance, approaching motherhood with a comprehensive plan, and the fatherless child. CONCLUSION: The nuclear family was considered as the ideal family among our participants. The decision to become solo mother was characterized by a long process of reorganizing ideas about a family. In the effort to feel more secure about being a solo parent, to control the process and reduce vulnerability, most women drew up a detailed motherhood plan, even before embarking on the project.

Perspective of Patients with Metastatic Breast Cancer on Electronic Access to Scan Results: Mixed-Methods Study.

BACKGROUND: Patient-accessible electronic health records give patients quick and easy access to their health care data, enabling them to view their test results online prior to a clinic visit. Hospital reports can be difficult for patients to understand, however, and can lead to unnecessary anxiety. OBJECTIVE: We aimed to investigate the attitudes and experiences of Danish patients with metastatic breast cancer in using electronic health records to view their own scan results. METHODS: We conducted a prospective mixed-methods study in a sequential design at our institution during 2018. Participants were women with metastatic breast cancer who were having scans every 3 months (combined positron emission tomography and computed tomography or computed tomography alone) to monitor treatment effects. Participants first received an online questionnaire about their knowledge and use of online access to scan results. We then conducted semistructured interviews with 4 women who used the online access to view their scan results. RESULTS: A total of 46 patients received the questionnaire (median age 66, SD 11.8, range 34-84 years). Of these women, 38 (83%) completed the survey (median age 69, SD 10.7, range 42-84 years). Most patients (34/38) were aware of the opportunity to access their reports online, but only 40% (15/38) used this access to read their scan results. Barriers to online access were (1) anxiety over reading the scan results in the absence of clinician support, and (2) a preference to receive all disease information at their next hospital appointment. The patients who read their scan result found that facilitators were greater transparency and empowerment, and barriers were the consequences of reading bad news, the feeling of dilemma about the access, and the medical terminology. CONCLUSIONS: Patients with metastatic breast cancer generally had a positive attitude toward electronic access to their scan results, and those who used this opportunity played a greater participatory role in their disease and its management. Others described the potential distress this opportunity caused. The study findings suggest that immediate online access to scan results should be available to patients, but it needs a support function alongside that ensures optimal patient care.

[The challenges faced by researchers involving patients as partners in research].

This review presents recent findings from the literature on the challenges that researchers may face, when patients get involved as partners in research: which patients to recruit, how to clarify and set boundaries to the roles of the patient and the researcher, and how to evaluate the outcome of involvement. Patient involvement may challenge the professional identity of a researcher. Researchers are often uncertain about how to establish a meaningful collaboration with partners whose knowledge comes from the lived experience of being a patient.