| 1. |
- Swartling, Ulrica, et al.
(författare)
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Children's Views on Long-Term Screening for Type 1 Diabetes.
- 2014
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Ingår i: Journal of Empirical Research on Human Research Ethics. - : SAGE Publications. - 1556-2654 .- 1556-2646. ; 9:4, s. 1-9
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Tidskriftsartikel (refereegranskat)abstract
- There are an increasing number of medical research studies involving children, including many long-term birth cohort studies. Involving children raises many issues, and little is known about children's own views. This study explored children's views (N = 5,851) on participation in a long-term screening study for type 1 diabetes. The results show that children 10 to 13 years of age have in general a positive attitude to pediatric research and emphasized trust in researchers. The children stressed the importance to receive information and to be involved in decisions. The children also reported feeling concerned about blood sampling and disease risk. Researchers involved in long-term pediatric research need to address these issues to promote involvement and decrease worry.
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| 2. |
- Swartling, Ulrica, 1965-, et al.
(författare)
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"My parents decide if I can. I decide if I want to." Children’s views on participation in medical research
- 2011
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Ingår i: Journal of Empirical Research on Human Research Ethics. - : University of California Press. - 1556-2646 .- 1556-2654. ; 6:4, s. 68-74
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Tidskriftsartikel (refereegranskat)abstract
- The participation of children in medical research raises many ethical issues, in particular regarding assent. However, little is known about children's own views on participation. This study presents results from interviews with children 10–12 years old with and without experience in a large-scale longitudinal screening study. We identified five themes: (1) knowledge about research, (2) a sense of altruism, (3) shared decision-making and right to dissent, (4) notions of integrity, privacy, and access, and (5) understanding of disease risk and personal responsibilities. We conclude that the children feel positive towards medical research, and want to take an active part in decisions and have their integrity respected. However, the study also indicates that children who had participated in longitudinal screening had a limited understanding, suggesting the vital importance of providing information appropriate to their age and maturity. This information should be provided out of respect for the children as persons, but also to promote their willingness to continue participating in longitudinal studies.
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| 3. |
- Tercyak, Kenneth P, et al.
(författare)
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Behavioral Science Research Informs Bioethical Issues in the Conduct of Large-Scale Studies of Children's Disease Risk.
- 2013
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Ingår i: AJOB Primary Research. - : Taylor & Francis. - 2150-7716 .- 2150-7724. ; 4:3, s. 4-14
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Birth cohort studies of the natural history of pediatric common disease risk raise many bioethical issues, including re-consenting participants over time as children mature and cohort retention. Understanding participants' study-specific knowledge, attitudes, beliefs, and behavior may offer insights into these issues from a psychological perspective.METHODS: We conducted an analysis of factors associated with parent-child communication about minor children's participation in a population-based birth cohort; children's knowledge about their own participation; and parental willingness to be re-contacted for future study among Swedish parents (N = 3,605) of children originally enrolled at birth in a prospective study of type 1 diabetes risk.RESULTS: More open parent-child communication about disease risk screening research and greater knowledge among children about their own research participation facilitated greater parent willingness to participate in further study. Parents' decisions about further study participation were most strongly favorable among those who communicated openly with their child and with high study-specific knowledge.CONCLUSIONS: Epidemiologists, bioethicists, and others involved in the design and conduct of large-scale, prospective birth cohorts may consider embedding periodic assessments of participants' study-specific attitudes and behavior to address long-term retention and willingness to engage in future research.
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| 4. |
- Tercyak, Kenneth P, et al.
(författare)
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Psychometric properties of the Pediatric Testing Attitudes Scale-Diabetes (P-TAS-D) for parents of children undergoing predictive risk screening
- 2013
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Ingår i: Pediatric Diabetes. - : Wiley-Blackwell. - 1399-543X .- 1399-5448. ; 14:8, s. 602-610
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Tidskriftsartikel (refereegranskat)abstract
- ObjectiveExamine the factor structure, reliability, and validity of the Pediatric Testing Attitudes Scale-Diabetes (P-TAS-D), a measure of parental attitudes about predictive risk screening for type 1 diabetes in children. less thanbrgreater than less thanbrgreater thanMethodsSurveys were completed by 3720 Swedish parents of children participating in the adolescent follow-up of a birth cohort study of type 1 diabetes onset. Parents averaged 43.5years, 42.3% were college-educated, and 10.6% of children had a family history of type 1 diabetes. The parent sample was randomly divided, an exploratory factor analysis (EFA; n =1860) was conducted, followed by confirmatory factor analysis (CFA; n =1860) and testing. less thanbrgreater than less thanbrgreater thanResultsEFA/CFA revealed the P-TAS-D has three factors/scales: Attitudes and Beliefs toward type 1 diabetes predictive risk screening (=0.92), Communication about risk screening results (=0.71), and Decision Making (r = 0.19, pandlt;0.001). This solution fit the data well ((2) [42]=536.0, RMSEA = 0.08, CFI = 0.95) and internal consistency for the full scale was high (=0.86, M = 36.2, SD = 8.2). After adjusting for covariates, more favorable attitudes toward childrens risk screening were associated with greater worry about type 1 diabetes (B = 1.1, p andlt;0.001), less worry about health overall (B = -0.10, p = 0.001), and more positive attitudes toward (B = 0.28, p andlt;0.001) and less worry about (B = 0.41, p andlt;0.001) diabetes research. less thanbrgreater than less thanbrgreater thanConclusionsThe P-TAS-D is a stable, reliable, and valid measure for assessing parents type 1 diabetes risk screening attitudes. Scale data can help target parent education efforts in risk screening trials.
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