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- Fritzell, K., et al.
(författare)
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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
- 2023
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Ingår i: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 18:12 December
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Tidskriftsartikel (refereegranskat)abstract
- 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. Decision Aids (DAs) are set to deliver information about different healthcare options and help individuals to visualize the values associated with each available option. DAs are not intended to guide individuals to choose one option over another. The advantage of an individual Decision Aid (iDA) is that individuals gain knowledge about cancer and screening by accessing one webpage with the possibility to communicate with health professionals and thereafter make their decision regarding participation. The objective is therefore to develop, implement and evaluate a digital iDA for individuals invited to cancer screening in Sweden. Methods This study encompasses a process-, implementation-, and outcome evaluation. Multiple methods will be applied including focus group discussions, individual interviews and the usage of the think aloud technique and self-reported questionnaire data. The project is based on The International Patient Decision Aid Standards (IPDAS) framework and the proposed model development process for DAs. Individuals aged 23 74, including women (the cervical-, breast-and CRC screening module) and men (the CRC screening module), will be included in the developmental process. Efforts will be made to recruit participants with selfreported physical and mental limitations, individuals without a permanent residence and ethnic minorities. Discussion To the best of our knowledge, the present study is the first attempt aimed at developing an iDA for use in the Swedish context. The iDA is intended to facilitate shared decision making about participation in screening. Furthermore, the iDA is expected to increase knowledge and raise awareness about cancer and cancer screening.
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- Jervaeus, A, et al.
(författare)
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Survivors of childhood cancer report high levels of independence five years after diagnosis
- 2014
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Ingår i: Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses. - : SAGE Publications. - 1532-8457. ; 31:5, s. 245-251
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Tidskriftsartikel (refereegranskat)abstract
- The aim was to compare self-rated independence in childhood cancer survivors 5 years after diagnosis with corresponding ratings during initial cancer treatment and those in a comparison group. A further aim was to determine whether and how certain clinical and demographic variables affected self-rated independence. Self-rated independence, a dimension included in the health-related quality of life (HRQoL) measure DISABKIDS Chronic Generic Measure (DCGM-37), was assessed in a Swedish cohort of survivors (n = 63, aged 12-22 years) and compared with ratings during initial cancer treatment and those in an age-matched comparison group (n = 257). Potential predictors of self-rated independence were estimated using multiple regression analysis. Survivors rated their independence significantly higher 5 years after diagnosis than during initial cancer treatment and higher than the comparison group. Neither demographic nor clinical variables (age, sex, diagnosis, initial cancer treatment) predicted self-rated independence 5 years post diagnosis. Five years after diagnosis, survivors of childhood cancer appear to have reached a satisfactory level of independence. However, survivors are likely to experience complications over the longer term, and therefore continued follow-up is warranted to follow possible changes in self-reported independence.
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- Nilsson, J., et al.
(författare)
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'Will I be able to have a baby?' Results from online focus group discussions with childhood cancer survivors in Sweden
- 2014
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Ingår i: Human Reproduction. - : Oxford University Press. - 0268-1161 .- 1460-2350. ; 29:12, s. 2704-2711
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Tidskriftsartikel (refereegranskat)abstract
- STUDY QUESTION: What do adolescent and young adult survivors of childhood cancer think about the risk of being infertile?SUMMARY ANSWER: The potential infertility, as well as the experience of having had cancer, affects well-being, intimate relationships and the desire to have children in the future.WHAT IS KNOWN ALREADY: Many childhood cancer survivors want to have children and worry about possible infertility.STUDY DESIGN, SIZE, DURATION: For this qualitative study with a cross-sectional design, data were collected through 39 online focus group discussions during 2013.PARTICIPANTS/MATERIALS, SETTING, METHODS: Cancer survivors previously treated for selected diagnoses were identified from The Swedish Childhood Cancer Register (16-24 years old at inclusion, ≥5 years after diagnosis) and approached regarding study participation. Online focus group discussions of mixed sex (n = 133) were performed on a chat platform in real time. Texts from the group discussions were analysed using qualitative content analysis.MAIN RESULTS AND THE ROLE OF CHANCE: The analysis resulted in the main category Is it possible to have a baby? including five generic categories: Risk of infertility affects well-being, Dealing with possible infertility, Disclosure of possible infertility is a challenge, Issues related to heredity and Parenthood may be affected. The risk of infertility was described as having a negative impact on well-being and intimate relationships. Furthermore, the participants described hesitation about becoming a parent due to perceived or anticipated physical and psychological consequences of having had cancer.LIMITATIONS, REASONS FOR CAUTION: Given the sensitive topic of the study, the response rate (36%) is considered acceptable. The sample included participants who varied with regard to received fertility-related information, current fertility status and concerns related to the risk of being infertile.WIDER IMPLICATIONS OF THE FINDINGS: The results may be transferred to similar contexts with other groups of patients of childbearing age and a risk of impaired fertility due to disease. The findings imply that achieving parenthood, whether or not with biological children, is an area that needs to be addressed by health care services.STUDY FUNDING/COMPETING INTERESTS: The study was financially supported by The Cancer Research Foundations of Radiumhemmet, The Swedish Childhood Cancer Foundation and the Doctoral School in Health Care Science, Karolinska Institutet. The authors report no conflicts of interest.
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