| 1. |
- Appelqvist, Emma, et al.
(författare)
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Exploring nurses' experiences of a tailored intervention to increase MMR vaccine acceptance in a Somali community in Stockholm, Sweden : a qualitative interview study
- 2023
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Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 13:2, s. 067169-067169
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: To explore nurses' experiences of a tailored intervention that supported them with knowledge and tools to use during encounters and dialogue with parents with low vaccine acceptance. DESIGN: A qualitative study with in-depth interviews conducted in 2017. Data were analysed using thematic analysis. SETTING: This study was part of a multicomponent intervention targeting Somali parents and the nurses at child health centres in the Rinkeby and Tensta neighbourhoods of Stockholm. An area with documented low measles, mumps and rubella (MMR) vaccination coverage. Previous research has revealed that Somali parents in the community delayed MMR vaccination due to fear of autism despite lack of scientific evidence. The interventions were implemented in 2015-2017. PARTICIPANTS: Eleven nurses employed at the child health centres involved in the intervention participated in interviews. The tailored intervention targeting nurses included a series of seminars, a narrative film and an information card with key messages for distribution to parents. RESULTS: The qualitative analysis revealed an overarching theme: perception of improved communication with parents. Two underlying themes were identified: (1) feeling more confident to address parents' MMR vaccine concerns and (2) diverse tools as useful support to dispel myth and reduce language barriers. CONCLUSION: From the nurses' perspective, the tailored intervention was useful to improve communication with parents having vaccine concerns. Nurses have a crucial role in vaccine uptake and acceptance. Interventions aiming to strengthen their communication with parents are therefore essential, especially in areas with lower vaccine acceptance.
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| 2. |
- Appelqvist, Emma, et al.
(författare)
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Parental views and the key role of nurses for high vaccine acceptance in Sweden – a focus group study
- 2023
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Ingår i: BMC Public Health. - 1471-2458. ; 23:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: In Sweden, vaccine uptake is exceptionally high due to an efficient child immunization program. More than 97% of Swedish children were vaccinated at child health care centers (CHCs) according to the schedule at 2 years of age in 2021. From the age of 6 years, vaccinations are given within the school health care. Maintaining high vaccination coverage over time is one of the central motives to explore and understand drivers for vaccine acceptance. The current study aimed to assess parental vaccine acceptance concerning the national immunization program and explore factors contributing to the high vaccine acceptance in Sweden. Methods: Parents of children aged 1–2 years and 8–12 years were recruited through purposive sampling and asked to participate in focus groups held in three cities in Sweden, in February and March 2019. In total, 47 parents participated in two focus groups per city, one session for parents of younger (1–2 years) and older (8–12 years) children respectively. The focus group discussions were analyzed using qualitative content analysis. Results: Parents of children aged 1–2 years expressed the themes; strong compliance to and protection of the value of vaccinations; parents feel safe with an attentive relationship with their nurse; the spectrum of communication needs is essential to meet. For parents to children aged 8–12 years, the themes expressed were; vaccinate to do good for the individual and society; a foundation of trust is built at CHCs for decisions later on; decisions for vaccination become more complex as children get older; communication changes as children get older and need to be explicit and tailored to the situation. Conclusion: Both individual and societal perspectives were shown to influence the vaccination decision for childhood immunizations, as manifested in parental reflections and experiences. As nurses have a key role, it is important to provide them with continued support and tools to facilitate their support for parents in making informed decisions. Continuous work for supporting driving factors for vaccination over time is needed to maintain high vaccine acceptance in Sweden.
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| 3. |
- Batkovskyte, D., et al.
(författare)
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Al-Gazali Skeletal Dysplasia Constitutes the Lethal End of ADAMTSL2-Related Disorders
- 2023
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Ingår i: Journal of Bone and Mineral Research. - : Wiley. - 0884-0431 .- 1523-4681. ; 38:5, s. 692-706
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Tidskriftsartikel (refereegranskat)abstract
- Lethal short-limb skeletal dysplasia Al-Gazali type (OMIM %601356), also called dysplastic cortical hyperostosis, Al-Gazali type, is an ultra-rare disorder previously reported in only three unrelated individuals. The genetic etiology for Al-Gazali skeletal dysplasia has up until now been unknown. Through international collaborative efforts involving seven clinical centers worldwide, a cohort of nine patients with clinical and radiographic features consistent with short-limb skeletal dysplasia Al-Gazali type was collected. The affected individuals presented with moderate intrauterine growth restriction, relative macrocephaly, hypertrichosis, large anterior fontanelle, short neck, short and stiff limbs with small hands and feet, severe brachydactyly, and generalized bone sclerosis with mild platyspondyly. Biallelic disease-causing variants in ADAMTSL2 were detected using massively parallel sequencing (MPS) and Sanger sequencing techniques. Six individuals were compound heterozygous and one individual was homozygous for pathogenic variants in ADAMTSL2. In one of the families, pathogenic variants were detected in parental samples only. Overall, this study sheds light on the genetic cause of Al-Gazali skeletal dysplasia and identifies it as a semi-lethal part of the spectrum of ADAMTSL2-related disorders. Furthermore, we highlight the importance of meticulous analysis of the pseudogene region of ADAMTSL2 where disease-causing variants might be located.
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| 4. |
- Byström, Emma, et al.
(författare)
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Confidence in the National Immunization Program among parents in Sweden 2016 – A cross-sectional survey
- 2020
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Ingår i: Vaccine. - : Elsevier BV. - 0264-410X. ; 38:22, s. 3909-3917
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Tidskriftsartikel (refereegranskat)abstract
- Background: Vaccination coverage for infant vaccinations in the Swedish National Immunization Program (NIP) has been high for more than a decade, with approximately 97% of 2-year-old children fully immunized. Vaccination coverage against Human Papilloma Virus (HPV) has been around 80% since introduction for girls in 2012. This indicates high parental confidence in the NIP, but as seen in other European countries rapid shifts in confidence may occur. This study examined vaccine confidence and attitudes towards vaccinations among parents in the Swedish population. Methods: A web-based survey was sent to 1046 parents with children aged 0–15 years, in a panel administrated by The Public Health Agency of Sweden. The survey included questions on vaccination awareness, safety and information channels. The response rate was 87%. Data were weighted to adjust for non-responders and for representativeness of the Swedish population. Results: Parents were categorized as acceptors (79%), questioning acceptors (19%) or selective refusers (2%). When excluding responses for HPV vaccination, the proportion of acceptors increased to 91%. The main reasons for questioning or refusing a vaccine were worry over adverse events, negative or lack of information. Along a spectrum of beliefs, acceptors and questioning acceptors were more similar compared to selective refusers. Nurses at child health clinics constituted the most used vaccination information source for acceptors, whereas selective refusers to a greater extent searched information online and in social media. Conclusions: The study demonstrates that parents in Sweden have confidence in and are positive towards vaccinations given within the NIP. One in five parents question vaccines, particularly regarding the HPV vaccine, but still concur to the NIP. Information on vaccines online and at vaccination appointments, including vaccine safety, is important for maintaining confidence in vaccination. Conducting recurring studies is valuable for monitoring vaccine confidence and changes in attitudes towards vaccination.
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| 5. |
- Chrapkowska, Cecilia, et al.
(författare)
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Validation of the new Swedish vaccination register – Accuracy and completeness of register data
- 2020
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Ingår i: Vaccine. - : Elsevier BV. - 0264-410X .- 1873-2518. ; 38:25, s. 4104-4110
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Tidskriftsartikel (refereegranskat)abstract
- Objective: The aims of this study are to validate infant vaccination data in the Swedish Vaccination Register (SVR) to the Swedish administrative coverage reports, and to assess differences in register-based vaccination coverage estimates between providers using different data reporting methods. Methods: The study population included all infants born in Sweden with a Swedish Personal Identity Number during 2014 and 2015 (n = 230,220). Data on all National Immunisation Programme vaccinations administered before 24 months of age were collected from the SVR and from administrative coverage reports. Information regarding data registration methods in the SVR were collected from national and regional authorities. Coverage from health care providers using single registration methods, where vaccination data were transferred automatically from the electronic health care record to the SVR, was compared to that from providers using double registration methods where data had to be added into the SVR in a separate process. Results: For 98,4% of the study population at least one vaccination was recorded in the SVR. The coverage of 3-dose DTP-containing (87,1%) and 1 dose MMR (91,1%) in the register did not reach administrative data coverage (97,4% for 3-dose DTP-containing and 97,0% for MMR). Single registration procedures yielded significantly higher coverage than double registration procedures (92,24% vs 87,10%, p < 0,0001). A regional switch from double to single registration increased coverage from 80,0 to 95,2%. Conclusions: The SVR is a valuable data source for vaccination coverage monitoring. For research purposes, the SVR provides valuable data, since every health care provider is obliged to register all vaccine doses given within the national immunisation program. The SVR shows a high completeness validated by comparison to a very well-functioning administrative data system. Single-registration procedures give more complete data and should be supported by health systems while creating health care registers.
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| 6. |
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| 7. |
- Jama, Asha, et al.
(författare)
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Design and implementation of tailored intervention to increase vaccine acceptance in a Somali community in Stockholm, Sweden - based on the Tailoring Immunization Programmes approach
- 2022
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Ingår i: Public Health in Practice. - : Elsevier BV. - 2666-5352. ; 4
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: Sweden has had a high and stable vaccination coverage for measles-mumps-rubella (MMR) vaccine (>96%) through the national immunization program (NIP), but coverage rates highlight local pockets of lower vaccination coverage. This project addressed low MMR vaccine acceptance among parents in a Somali community, in Stockholm. The objective of the intervention was to increase vaccine confidence and MMR-vaccine uptake and also to inform practices addressing vaccine acceptance. Study design: This paper describes the design and implementation of a multi-component intervention based on the Tailoring Immunization Programmes (TIP) approach, developed by the WHO European Regional Office. Methods: The theoretical underpinning of TIP is the Capability, Opportunity, and Motivation Model (COM-B model) and Behaviour Change Wheel framework (BCW), adapted for vaccination. The COM-model was used to identify barriers and drivers to vaccination and intervention types. The TIP-phases described in this paper are: pre-TIP (planning), three succeeding TIP phases (situational analysis, formative research, intervention design) and the post-TIP phase (implementation). Results: The situation analysis and formative research revealed that parents feared the MMR vaccine due to autism or that their child would stop talking following vaccination, despite lack of scientific evidence for an association between autism and MMR vaccines. Barriers were linked to their associated COM-B factors and mapped to appropriate intervention types for two target groups: Somali parents and nurses at the Child Health Centres (CHC). Selected intervention types targeting parents were education, persuasion and modelling whereas education and training were selected for CHC nurses. The intervention activities included community engagement for parents, while the activities for nurses focused on improving encounters and dialogue with parents having low vaccine acceptance. Following the intervention design the activities were developed, pilot tested and implemented. Conclusion: This study confirm that the TIP approach is valuable for guiding a stepwise working process for a thorough understanding of barriers and drivers for MMR vaccination among parents in this Somali community. It facilitated the design of a theory and evidence-informed intervention targeting parents and nurses.
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| 8. |
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| 9. |
- Lindstrand, Anna, et al.
(författare)
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Genome sequencing is a sensitive first-line test to diagnose individuals with intellectual disability
- 2022
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Ingår i: Genetics in Medicine. - : ELSEVIER SCIENCE INC. - 1098-3600 .- 1530-0366. ; 24:11, s. 2296-2307
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: Individuals with intellectual disability (ID) and/or neurodevelopment disorders (NDDs) are currently investigated with several different approaches in clinical genetic diagnostics. Methods: We compared the results from 3 diagnostic pipelines in patients with ID/NDD: genome sequencing (GS) first (N = 100), GS as a secondary test (N = 129), or chromosomal microarray (CMA) with or without FMR1 analysis (N = 421). Results: The diagnostic yield was 35% (GS -first), 26% (GS as a secondary test), and 11% (CMA/FMR1). Notably, the age of diagnosis was delayed by 1 year when GS was performed as a secondary test and the cost per diagnosed individual was 36% lower with GS first than with CMA/FMR1. Furthermore, 91% of those with a negative result after CMA/FMR1 analysis (338 individuals) have not yet been referred for additional genetic testing and remain undiagnosed. Conclusion: Our findings strongly suggest that genome analysis outperforms other testing strategies and should replace traditional CMA and FMR1 analysis as a first-line genetic test in individuals with ID/NDD. GS is a sensitive, time-and cost-effective method that results in a confirmed molecular diagnosis in 35% of all referred patients. (c) 2022 The Authors. Published by Elsevier Inc. on behalf of American College of Medical Genetics and Genomics. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).
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| 10. |
- Nordgren, Ann, 1964, et al.
(författare)
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Precision medicine and rare diseases in pediatric urology
- 2023
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Ingår i: Journal of Pediatric Urology. - : Elsevier BV. - 1477-5131 .- 1873-4898. ; 19:3, s. 335-338
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Tidskriftsartikel (refereegranskat)abstract
- Precision Medicine holds promise for helping us manage specific phenotypes of common diseases. For rare diseases such as hypospadias, DSD, and pediatric solid tumors, it can also reveal underlying risk factors and pathogenesis. Professors Ann Nordgren and Anna Lindstrand share their experi-ences in the development and ongoing initiatives of the Swedish national project on Precision Medicine and how it could change the care of pediatric urol-ogy patients.
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