| 1. |
- Breugem, Corstiaan, et al.
(författare)
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Prioritizing Cleft/Craniofacial Surgical Care after the COVID-19 Pandemic
- 2020
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Ingår i: PLASTIC AND RECONSTRUCTIVE SURGERY-GLOBAL OPEN. - 2169-7574. ; 8:9
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Tidskriftsartikel (refereegranskat)abstract
- Background: It is anticipated that in due course the burden of emergency care due to COVID-19 infected patients will reduce sufficiently to permit elective surgical procedures to recommence. Prioritizing cleft/craniofacial surgery in the already overloaded medical system will then become an issue. The European Cleft Palate Craniofacial Association, together with the European Cleft and Craniofacial Initiative for Equality in Care, performed a brief survey to capture a current snapshot during a rapidly evolving pandemic. Methods: A questionnaire was sent to the 2242 participants who attended 1 of 3 recent international cleft/craniofacial meetings. Results: The respondents indicated that children with Robin sequence who were not responding to nonsurgical options should be treated as emergency cases. Over 70% of the respondents indicated that palate repair should be performed before the age of 15 months, an additional 22% stating the same be performed by 18 months. Placement of middle ear tubes, primary cleft lipsurgery, alveolar bone grafting, and velopharyngeal insufficiency surgery also need prioritization. Children with craniofacial conditions such as craniosynostosis and increased intracranial pressure need immediate care, whilst children with craniosynostosis and associated obstructive sleep apnea syndrome or proptosis need surgical care within 3 months of the typical timing. Craniosynostosis without signs of increased intracranial pressure needs correction before the age of 18 months. Conclusions: This survey indicates several areas of cleft and craniofacial conditions that need prioritization, but also certain areas where intervention is less urgent. We acknowledge that there will be differences in the post COVID-19 response according to circumstances and policies in individual countries.
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| 2. |
- Korostenski, Jaromir, et al.
(författare)
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Environmental management system at higher education accentuates education for sustainable development
- 2015
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: Under Swedish law, the universities are required to implement environmental management systems (EMS) in their operations. The introductory EMS review emphasizes education for sustainable development (ESD) as the most significant environmental aspect. Contemporary education spends time on training in sustainability with established knowledge, hazards, risks and approaches for improvement of known issues through 'declarative knowledge', which is always a step behind developments, because it works with historical facts. Objectives:Consequently, a target has been set of equipping students with the knowledge, values, attitudes and competences that will help them deal with problems that arise in society in the future through the introduction of ESD into all of the university’s programs. The aspect of how we can assess whether graduate students possess these skills remains to be resolved before the annual EMS audit. Methods:The available methods for evaluation are surveys addressed to students, alumni and teachers in a prolonged time study. ESD extends and adapts contemporary 'declarative knowledge' to a teachers' toolkit of 'functioning knowledge' as an intrinsic part regardless of the field or the teaching topic. Results:We will develop ESD in the form of tools which can be easily recognized at higher education. The challenge is to broaden students' knowledge and comprehension of a core academic discipline to a level that has not been considered or introduced into education at our university or used in practice. Conclusion:Toolkits which can conveniently be used in ESD are discussed in the conclusions of this paper. The result in annual surveys reports the level of continuous improvement concerning EMS objectives and for teachers it confirms the achievement in planned progression and development of ESD in courses.
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| 3. |
- Mossey, Peter A, et al.
(författare)
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Core outcomes for orofacial clefts : reconciling traditional and ICHOM minimum datasets
- 2023
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Ingår i: European Journal of Orthodontics. - : Oxford University Press. - 0141-5387 .- 1460-2210. ; 45:6, s. 671-679
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE/DESIGN/SETTING: This retrospective study sought voluntary participation from leading cleft centres from Europe and Brazil regarding core outcome measures. The results of this study would inform the debate on core outcome consensus pertaining to the European Reference Network for rare diseases (ERN CRANIO) and achieve a core outcome set for cleft care providers worldwide. INTERVENTION/METHOD: Five orofacial cleft (OFC) disciplines were identified, within which all of the International Consortium of Health Outcomes Measurement (ICHOM) outcomes fall. One questionnaire was designed for each discipline and comprised 1. the relevant ICHOM's outcomes within that discipline, and 2. a series of questions targeted to clinicians. What core outcomes are currently measured and when, did these align with the ICHOM minimum, if not how did they differ, and would they recommend modified or additional outcomes?. RESULTS: For some disciplines participants agreed with the ICHOM minimums but urged for earlier and morefrequent intervention. Some clinicians felt that some of the ICHOM standards were compatible but that different ages were preferred and for others the ICHOM standards were acceptable but developmental stages should be preferred to absolute time points. CONCLUSION/IMPLICATIONS: Core outcomes for OFC were supported in principle but there are differences between the ICHOM recommendations and the 2002 WHO global consensus. The latter are established in many centres with historical archives of OFC outcome data, and it was concluded that with some modifications ICHOM could be moulded into useful core outcomes data for inter-centre comparisons worldwide.
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| 4. |
- Paganini, Anna, 1979, et al.
(författare)
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A gender perspective on appearance-related concerns and its manifestations among persons born with unilateral cleft lip and palate
- 2021
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Ingår i: Psychology Health & Medicine. - : Informa UK Limited. - 1354-8506 .- 1465-3966. ; 26:6, s. 771-778
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Tidskriftsartikel (refereegranskat)abstract
- Cleft lip and palate (CLP) affects a person's facial appearance and can cause appearance-related distress. Appearance-related distress and its manifestations are not fully understood. Women with CLP tend to experience a higher degree of distress as well as undergo more aesthetic revisions than men. The aim of this study was to investigate if self-reported appearance-related gender differences occur among adults born with unilateral CLP using the Derriford Appearance Scale 24 (DAS24). One hundred sixty two consecutive patients, 107 men and 55 women, with unilateral CLP and no associated syndromes treated at the same hospital were asked to answer the DAS24. A mixed methods approach was used to analyse the questionnaires both quantitively and qualitatively. Fifty men and 30 women participated, the results showed that the aspects of appearance considered most disturbing was cleft-related among both genders, most common in regards to the nose. Three themes were found: acceptance, cleft features, and general appearance issues. The quantitative part showed that women reported higher appearance-related social anxiety and avoidance than men. This study demonstrated that appearance-related distress is present in both genders; however, women expressed more distress than men. Moreover, non-cleft as well as cleft features are of importance for self-reported dissatisfaction.
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| 5. |
- Paganini, Anna, 1979, et al.
(författare)
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Being Normal yet Different : A Qualitative Study on the Dualistic Experience of Living With Unilateral Cleft Lip and Palate
- 2022
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Ingår i: The Cleft Palate-Craniofacial Journal. - : SAGE Publications. - 1055-6656 .- 1545-1569. ; , s. 1-9
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Tidskriftsartikel (refereegranskat)abstract
- Objective The aim of the present study was to describe the experiences of young adults living with cleft lip and palate (CLP) and to explore potential gender differences. Design A descriptive qualitative study was designed involving semi-structured interviews. The interviews were analyzed using qualitative content analysis, as described by Graneheim and Lundman. Participants A total of 9 women and 8 men, aged 22 to 26 years with UCLP. Results The main theme identified was: the duality of living with a cleft—being normal yet different, and 2 subcategories: “My cleft and me” and “My cleft and the World.” The participants described themselves as normal yet different, both in relation to themselves and in relation to others. They also stated that gender norms regarding appearance affected their lives and how they saw the cleft. Conclusion This study adds to the growing body of qualitative research on CLP. It highlights the dualistic experiences of feeling normal and different at the sametime. The interviews indicated that this dualism was based on context and gender, showing the psychological complexity of an individual. The clinical implications of this study emphasizes the need of a person-centered care approach in the cleft care setting where the clinicians are aware of the potential dualistic experience that also may differ over time that individuals with cleft can experience. This can also help clinicians better understand and help patients reduce distress and strengthen positive coping mechanisms.
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| 6. |
- Paganini, Anna, 1979, et al.
(författare)
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Influence of Gender, Dispositional Optimism, and Coping Strategies on Appearance-Related Distress Among Swedish Adults With Cleft Lip and Palate
- 2022
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Ingår i: Cleft Palate-Craniofacial Journal. - : SAGE Publications. - 1055-6656 .- 1545-1569. ; 59:6, s. 715-723
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Tidskriftsartikel (refereegranskat)abstract
- Objective: To investigate the influence of gender, dispositional optimism, and coping strategies on appearance-related distress among individuals with unilateral cleft lip and palate (UCLP). Design: Cross-sectional design with self-report questionnaires analyzed primarily with Spearman correlations (r (s)) and multivariate regression analyses. Setting: A tertiary cleft center in Sweden. Participants: Eighty individuals with UCLP born 1966 to 1986. The mean age for men (n = 50) and women (n = 30) was 38.8 and 37.4 years, respectively. Main Outcome Measures: The Derriford Appearance Scale 24 measured appearance-related distress, the Life Orientation Test-Revised, short version measured dispositional optimism and pessimism, and the Coping Orientation to Problems Experienced, short version included 14 coping strategies. Results: Women had higher appearance-related distress than men, which was significantly (P < .05) related to self-blame (r (s) = 0.59), pessimism (r (s) = 0.59), and low optimism (r (s) = -0.56). Men's appearance-related distress was significantly associated with low active coping (r (s) = 0.35), low use of emotional support (r (s) = 0.29), denial (r (s) = 0.39), behavioral disengagement (r (s) = 0.41), and pessimism (r (s) = 0.28). The only significant gender interaction reflected greater impact of optimism in reducing appearance-related distress for women (beta = -0.06). Conclusions: This study showed that high levels of dispositional optimism decrease appearance-related distress, particularly for women. The coping strategies used differed between men and women, and the results suggest that both gender and psychosocial facto r (s) need to be considered in regard to appearance-related distress among individuals with UCLP in both clinical and research settings. A possible way to decrease distress is to strengthen positive coping strategies and dispositional optimism.
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