What value structure underlies shared decision making? A qualitative synthesis of models of shared decision making.

Objective: To construct the underlying value structure of shared decision making (SDM) models.

Method: We included previously identified SDM models (n = 40) and 15 additional ones. Using a thematic analysis, we coded the data using Schwartz's value theory to define values in SDM and to investigate value relations.

Making the BEST decision-the BESTa project development, implementation and evaluation of a digital Decision Aid in Swedish cancer screening programmes- a description of a research project.

Background: Sweden has a long tradition of organized national population-based screening programmes. Participation rates differ between programmes and regions, being relatively high in some groups, but lower in others. To ensure an equity perspective on screening, it is desirable that individuals make an informed decision based on knowledge rather than ignorance, misconceptions, or fear.

Consanguineous couples' experiences and views regarding expanded carrier screening: Barriers and facilitators in the decision-making process.

Expanded carrier screening (ECS) entails a screening offer for multiple recessive disorders at the same time, and allows testing of individuals or couples regardless of ancestry or geographic origin. Children of consanguineous couples have a higher-than-average risk of manifesting autosomal recessive disorders. This study aims to contribute to the responsible implementation of ECS for consanguineous couples.

What can We Learn From High-Performing Screening Programs to Increase Bowel Cancer Screening Participation in Australia?

Background: Colorectal cancer (CRC) is the second most diagnosed cancer in men and women and second most common cause of cancer death in Australia; Australia's CRC incidence and mortality are among the world's highest. The Australian National Bowel Cancer Screening Program began in 2006; however, only 33% of those approached for the first time by the Program between 2018 and 2019 returned the kit. Of the 5.

Views of patients and parents of children with genetic disorders on population-based expanded carrier screening.

Objective: Faster and cheaper next generation sequencing technologies have enabled expansion of carrier screening for recessive disorders, potentially facilitating population-based implementation regardless of ancestry or family history. Little is known, however, about the attitudes regarding population-based carrier screening among families with genetic disorders. This study assessed views among parents and patients with a recessive disorder and parents of children with Down syndrome (DS) on expanded carrier screening (ECS).

Stakeholder views on opportunistic genomic screening in the Netherlands: a qualitative study.

Genome sequencing can be used to actively search for genetic variants unrelated to the initial clinical question. While such 'opportunistic genomic screening' (OGS) has been proposed in the USA, a European discussion on the ethics of OGS is only starting. Should testing for selected 'secondary findings' be offered to patients who need genetic sequencing? Using focus groups and interviews, we explored views on OGS in adults and minors from three perspectives: policy experts (n = 9), health professionals (n = 8) and patient representatives (n = 7).

The Role of Health Literacy in Explaining the Relation between Educational Level and Decision Making about Colorectal Cancer Screening.

Little is known about why educational inequalities exist in informed decision making in colorectal cancer (CRC) screening. Insight into the role and impact of health literacy is essential for intervention development. This study investigates associations between health literacy and informed decision making in CRC screening and explores to what extent health literacy mediates the association between education and informed decision making in CRC screening.

Validation of health literacy domains for informed decision making about colorectal cancer screening using classical test theory and item response theory.

Objective: To construct and validate a computer-based and performance-based instrument to assess health literacy skills for informed decision making in colorectal cancer screening among screening invitees.

Methods: An instrument was constructed based on a conceptual framework of health literacy skills in colorectal cancer screening and findings from an expert survey. The instrument was field-tested among individuals with low health literacy (n = 28).

Ethnic Differences in Health Literacy Among Young Adults in Amsterdam.

Background: Ethnic differences in health commence early in life. Ethnic minority young adults have a greater prevalence of unhealthier lifestyles and poorer health outcomes than their peers. Variations in health literacy could contribute to these ethnic inequalities in health but have not yet been investigated in this group.

Development and pilot-testing of a colorectal cancer screening decision aid for individuals with varying health literacy levels.

Objective: Making an informed decision about colorectal cancer screening requires health literacy. Our aim was to develop and pilot-test a computer-based decision aid to support informed decision making about whether or not to participate in colorectal cancer screening for individuals with varying health literacy levels in the Netherlands.

Methods: First, we designed and adapted the decision aid prototype among 25 individuals with low (n = 15) and adequate (n = 10) health literacy.

How narratives influence colorectal cancer screening decision making and uptake: A realist review.

Background: Although narratives have been found to affect decisions about preventive behaviours, including participation in cancer screening, the underlying mechanisms of narratives remain unclear.

Objective: The purpose of this study was to summarize and synthesize existing literature on narrative interventions in the context of colorectal cancer screening. Our main research question was as follows: How, when and for whom do narratives work context of decision making about colorectal cancer screening participation?

Methods: We undertook a realist review to collect evidence on narratives in the context of colorectal cancer screening.

Dutch citizens of Turkish origin who utilize healthcare services in Turkey: a qualitative study on motives and contextual factors.

Background: Dutch residents of Turkish origin frequently utilize healthcare in Turkey.

Methods: To investigate their motives for doing so, we conducted a qualitative study among these healthcare users using semi-structured interviews. We complemented this with informal conversations with Turkish healthcare providers and observations at the registration offices and waiting rooms of outpatient clinics in several Turkish hospitals.

Health literacy skills for informed decision making in colorectal cancer screening: Perceptions of screening invitees and experts.

Background: The process of informed decision making (IDM) requires an adequate level of health literacy. To ensure that all individuals have equal opportunity to make an informed decision in colorectal cancer (CRC) screening, it is essential to gain more insight into which health literacy skills are needed for IDM. Our aims were (i) to explore how individuals make a decision about CRC screening and (ii) to explore which skills are needed for IDM in CRC screening and (iii) to integrate these findings within a conceptual framework.

The interpreter as co-interviewer: the role of the interpreter during interviews in cross-language health research.

Objective: Interviews with ethnic minority patients provide a rich source of data to understand their perspectives of disease and its management. Language barriers are, however, often a problem so interpreters need to be used. We explored the impact of the interpreter on cross-language interviews between researchers and respondents.

Knowledge, attitudes and beliefs regarding colorectal cancer screening among ethnic minority groups in the Netherlands - a qualitative study.

Background: Research has shown that ethnic minority groups are less likely to participate in colorectal cancer (CRC) screening than the majority population and hence less likely to be diagnosed at an early stage when treatment is potentially more successful.

Objective: To explore knowledge, attitudes and beliefs regarding CRC and CRC screening among ethnic minority groups in the Netherlands.

Design: We conducted qualitative interviews with 30 first-generation immigrants born in Turkey, Morocco and Surinam.