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Resources / Communications

Publications

  1. Burström, Å. , Acuna Mora, M. , Öjmyr‐Joelsson, M. , Sparud‐Lundin, C. , Rydberg, A. , Hanseus, K. , Frenckner, B. , Nisell, M. , Moons, P. and Bratt, E. (2018), Parental Uncertainty About Transferring Their Adolescent with Congenital Heart Disease to Adult Care. J Adv Nurs. Accepted Author Manuscript.  doi:10.1111/jan.13852
  2. Acuña Mora M, Luyckx K, Sparud-Lundin C, Peeters M, van Staa A, et al. (2018) Patient empowerment in young persons with chronic conditions: Psychometric properties of the Gothenburg Young Persons Empowerment Scale (GYPES). PLOS ONE 13(7): e0201007. https://doi.org/10.1371/journal.pone.0201007
  3. Bratt EL, Burström Å, Hanseus K, Rydberg A, Berghammer MDon´t forget the parents- Parents concerns during transition prior to transfer to adult care for adolescents with congenital heart disease.  Child Care.
  4. Burström Å. Bratt EL. Nisell M, Rydberg A, Hanseus K, Öjmyr-Joelsson M. Responsibility, knowledge and trust – Important aspects in the preparation to the transfer to adult care. Accepted for publication. April (2017). Eur J of Pediatr.
  5. Sparud-Lundin C, Berghammer M, Moons P, Bratt EL. Health Care Providers Attitudes Towards Transfer and Transition in Young Persons With Long Term Illness and Special Health Care Needs. BMC Health Services Research (2017) 17:260 DOI 10.1186/s12913-017-2192-5.
  6. Acuña Mora M, Sparud-Lundin S, Bratt EL, Moons P. A person-centered transition program to empower adolescents with congenital heart disease in the transition to adulthood: study protocol for a hybrid randomized controlled trial (STEPSTONES project). Accepted in BMJ Open. January 2017. doi. 10.1136/bmjopen-2016-014593
  7. Acuña Mora M, Moons P, Sparud-Lundin C, Bratt EL and Goossens E. Assessing the level of evidence on transfer and transition in young people with chronic conditions: protocol of a scoping review. Systematic Reviews. Sept (2016), 5:66. DOI: 10.1186/s13643-016-0344-z
  8. Burström Å, Öjmyr-Joelsson M, Bratt EL, Lundell B, Nisell M. Adolescents with Congenital Heart Disease and their parents – Needs before transfer to adult care. J Cardiovasc Nurs. 2016 Sep-Oct;31(5):399-404.
  9. Asp A, Bratt EL, Bramhagen AC. Transfer to adult care – Experiences of young adults with Congenital Heart Disease. J Pediatr Nurs. 2015 Sep-Oct;30(5):e3-e10. doi: 10.1016/j.pedn.2015.05.025.

 

Accepted abstracts

  1. Acuña Mora M, Sparud-Lundin C, Moons P, Bratt EL. Betydelsen av empowerment hos unga med långvariga sjukdomstillstånd vid övergången till vuxenliv och överföring till vuxenvård-ett doktorandprojekt-. Sjuksköterskedagarna. 20-21 November 2018. Stockholm, Sweden (Poster)
  2. Acuña Mora, M. Sparud-Lundin, C. Burström, Å. Hanseus, K. Rydberg, A. Moons, P. Bratt, EL. Adolescents with congenital heart disease own beliefs about their illness: illness perception and potential correlates. European Society of Cardiology Congress. 25-29 Aug 2018. Munich, Germany. (Oral)
  3. Acuña Mora MMarkus Saarijärvi, Sparud-Lundin, C, Bratt, EL, Moons, P, Goossens, E. Mapping the field: scoping reviews as a method to identify gaps in nursing research. Nordic Conference in Nursing Research. 15-17 June 2018. Oslo, Norway (Oral)
  4. Saarijärvi M, Acuña Mora M, Sparud-Lundin, C, Bratt, EL, Moons, P, Goossens, E. Scoping the field of transfer and transition in young persons with cardiovascular conditions. EuroHeartCare 6-9 June 2018. Dublin, Ireland (Poster).
  5. Skogby S. Moons P, Johansson B, Dellborg M, Christersson C, Nagy E, Winberg P, Thilen U, Hanseus K, Krzynska A, Fadl S, Fernlund E, Kamazia P, Rydberg A, Sunnegårdh J, Goossens E, Bratt EL. 52 Annual Meeting of the Association for European Paediatric and Congenital Cardiology (AEPC) 9-11 Maj 2018, Athens, Greece. (Poster)
  6. Burström Å, Acuña Mora M, Öjmyr-Joelsson M, Sparud-Lundin C, Rydberg A, Hanseus K, Frenckner B, Nisell M, Moons P, Bratt EL. Ready for the transfer to the adult care – factors associated with transition readiness in adolescents with congenital heart disease. 52 Annual Meeting of the Association for European Paediatric and Congenital Cardiology (AEPC) 9-11 Maj 2018, Athens, Greece. (Oral)
  7. Acuña Mora, M. Sparud-Lundin, C. Burström, Å. Hanseus, K. Rydberg, A. Moons, P. Bratt, EL. Level of empowerment and its correlates in young persons with congenital heart disease. European Society of Cardiology Congress. 26-30 Aug 2017. Barcelona, Spain. (Poster)
  8. Burström, Å. Acuña Mora, M. Sparud-Lundin, C. Hanseus, K. Rydberg, A. Öjmyr-Joelsson, M. Nisell, M. Frenckner, B. Moons, P. Bratt, EL. Readiness for transfer in adolescents with congenital heart disease. 7th World congress of Pediatric Cardiology and Cardiac Surgery. 16-21 juli 2017. Barcelona, Spain (Poster)
  9. Bratt EL, Sparud-Lundin C, Acuña Mora M, Moons P. The STEPSTONES project – Effectiveness of a transition program to empower adolescents with congenital heart disease in the transition to adulthood. ISTAR conference (Individual Self-esteem and Transition to Adolescence with Respect). Enablers and barriers for successful transition from childhood to adulthood. 19-21 June, Borås, Sweden (Poster)
  10. Sparud-Lundin C, Berghammer M, Moons P, Bratt EL. Health care providers’attitudes towards transfer and transition in young persons with long term illness. ISTAR conference (Individual Self-esteem and Transition to Adolescence with Respect). Enablers and barriers for successful transition from childhood to adulthood. 19-21 June, Borås, Sweden (Oral)
  11. Sparud-Lundin C, Berghammer M, Moons P, Bratt EL. Sjuksköterskors och läkares uppfattningar om överföring från barn- till vuxensjukvård av unga med långvariga sjukdomar. Barnveckan. 24-27 april. Göteborg. (Poster)
  12. Acuña Mora M, Sparud-Lundin C, Luyckx K, Bratt EL, Moons P. Empowerment in congenital heart disease: psychometric properties of the Gothenburg Young Persons Empowerment Scale (GYPES). EuroHeart Care. May 2017. Jönköping, Sweden (Oral)
  13. Acuña Mora M. Sparud-Lundin C. Moons P. Bratt E-L. Using intervention mapping in developing complex nursing interventions- the STEPSTONES transition program for adolescents with chronic conditions. “The Future Direction of European Nursing and Nursing Research.” European Academy of Nursing Science conference. 4th-5th July 2017. Malmö , Sweden (Poster)
  14. Bratt EL, Burström Å, Hanseus K, Rydberg A, Berghammer M Adolescents with congenital heart disease – Parent’s perceptions and expectations about transition and transfer to adult care. Nordic meeting in Pediatric Cardiology and Cardiac surgery. 21-23 September 2016. Båstad, Sweden (Oral)
  15. Acuña Mora M. Bratt E.L Sparud-Lundin C. Moons P. Hybrid experimental design: A suitable design to tackle contamination of control groups. Nordic Conference in Nursing Research. 15-17 June 2016. Stockholm, Sweden (Poster)
  16. Burström Å. Bratt EL. Nisell M, Rydberg A, Hanseus K, Öjmyr-Joelsson M. Responsibility, knowledge and trust – Important aspects in the preparation to the transfer to adult care. 50th Annual Meeting of the Association for European Paediatric and Congenital Cardiology (AEPC) 2-4 June 2016. Rome, Italy. (Poster)
  17. Moons P. Sparud-Lundin C. Acuña Mora M. Bratt E.L. Effectiveness of a transition program to empower adolescents with congenital heart disease in the transition to adulthood: Rationale and methods of the STEPSTONES-ConHD project. 50th Annual Meeting of the Association for European Paediatric and Congenital Cardiology (AEPC) 2-4 juni 2016. Rome, Italy. (Poster)
  18. Burström Å. Öjmyr-Joelsson. Bratt EL. Lundell B. Nisell M. Young people with congenital heart disease need to be prepared for the shift in responsibility – Safety and Trust during Transfer to adult care. 49th Annual Meeting of the Association for European Paediatric and Congenital Cardiology (AEPC) 20-23 Maj 2015. Prague, Czech Republic. (Poster)
  19. Burström Å, Bratt EL, Nisell M, Hanseus K, Frenckner B, Öjmyr-Joelsson M. Young people with Congenital Heart Disease. How to prepare for adult care – their own perspective? 49th Annual Meeting of the Association for European Paediatric and Congenital Cardiology (AEPC) 20-23 Maj 2015. Prague, Czech Republic (Poster)
  20. Asp A, Bratt EL, Bramhagen AC. Upplevelser kring överföring till vuxensjukvård. Unga vuxna med medfödda hjärtfel. Barnveckan 20-23 April 2015. Stockholm, Sweden. (Poster)

 

Presentations

  1. Burström, A, Moons, P. Transition medicine: from childhood to adulthood. Swedish Society of Medicine. 23 October 2018. Stockholm, Sweden. Invited speaker.
  2. Bratt, EL. Övergång från barn till vuxensjukvård – medfödda hjärtfel. Stepstones-projektet. Barnveckan. 23-27 april, 2018. Västerås, Sverige. Invited speaker.
  3. Moons, P. Transfer and transition of young persons with chronic disease: From eminence-based to evidence-based practice. Barnveckan. 23-27 april, 2018. Västerås, Sverige. Invited speaker.
  4. Moons P. Ensuring high quality life-long care: Holding providers responsible. 27th International Symposium on Adult Congenital Heart Disease. 15 september 2017. Cincinnati (OH), USA. Invited speaker.
  5. Bratt EL. Health care needs of adolescents with congenital heart disease: transition into adulthood. European Society of Cardiology Congress. 26-30 August 2017. Barcelona, Spain. Invited speaker.
  6. Moons P. Landmark lecture: A life-cycle perspective on congenital heart disease: What happens beyond your clinic? 7th World Congress on Pediatric Cardiology and Cardiac Surgery. 21 juli 2017. Barcelona, Spain. Invited speaker.
  7. Moons P. Location matters: pediatric versus adult hospitals. 7th World Congress on Pediatric Cardiology and Cardiac Surgery. 19 juli 2017. Barcelona, Spain. Invited speaker
  8. Bratt EL. Challenges in Parenting a Child with Heart Disease. 7th World Congress of Pediatric Cardiology and Cardiac Surgery. 16-21 july 2017. Barcelona, Spain. Invited speaker.
  9. Moons P. Research on transitional care: State of an art in transition. 29th European Academy of Childhood Disability preconference. 17 may 2017. Amsterdam, The Netherlands. Invited speaker.
  10. Sparud-Lundin, C. Stepstones- Nationell undersökning av uppfattningar kring överföring av unga med kroniska sjukdomar), Forskningsdagen Sahlgrenska Akademin och Sahlgrenska Universitetssjukhuset. 2 march, 2017.Gothenburg, Sweden.
  11. Acuna Mora, M. STEPSTONES forskningsprojekt. Forskningsdagen Sahlgrenska Akademin och Sahlgrenska Universitetssjukhuset.  2 march, 2017.Gothenburg, Sweden.
  12. Bratt, EL. Adole7C forskningsprojekt. Forskningsdagen Sahlgrenska Akademin och Sahlgrenska Universitetssjukhuset.  2 march, 2017.Gothenburg, Sweden.
  13. Moons P. Transfer and transition of young persons with chronic disease: What is it, and what’s the problem? Forskningsdagen Sahlgrenska Akademin och Sahlgrenska Universitetssjukhuset.  2 march, 2017.Gothenburg, Sweden.
  14. Sparud-Lundin, C. Stepstones – en komplex intervention med syfte att stödja ungdomar med medfödda hjärtfel i övergången från barn- till vuxensjukvård. Design, upplägg och utmaningar .Nationell nätverksträff för disputerade sjuksköterskor inom barn hälso- och sjukvård. Forskningscentrum vid Örebros universitet, 6 april 2017.
  15. Bratt EL, Sparud-Lundin. STEPSTONES-ConHD. Nationellt nätverksmöte för disputerade barnsjuksköterskor. 10-11 november 2016. Uppsala.
  16. Bratt EL. STEPSTONES – the Swedish transition project. Nordic meeting in Pediatric Cardiology and Cardiac surgery. 21-23 september 2016. Båstad
  17. Bratt EL. Parenting during transition. 50th Annual Meeting of the Association for European Paediatric and Congenital Cardiology (AEPC) 2-4 juni 2016, Rom, Italien.
  18. Bratt EL. Stepstones-ConHD. Pediatrikens dag. Institutionen för kliniska vetenskaper vid Göteborgs universitet och Drottning Silvias Barn och ungdomssjukhus i Göteborg. 10 juni 2017.
  19. Bratt EL. Stepstones-ConHD. Nationella regiondagar i barnhjärtsjukvård 12-13 maj 2016. Göteborg.

 

Populärvetenskapliga publikationer

  1. Acuna Mora, M, Saarijärvi, M, Bratt, EL. STEPSTONES-pågående studie för att förbättra övergången till vuxenlivet för ungdomar med medfödda hjärtfel. Hjärtebarnet. 2018.
  2. Bratt EL, Sparud-Lundin C. Ungdomar med kroniska sjukdomar och deras överföring från barn till vuxensjukvård- STEPSTONES – (Swedish Transition Effect Project Supporting Teenagers with Chronic Medical Conditions). Barnbladet. Aug 2016
  3. Bratt EL. Från barn till vuxen – pågående forskningsprojekt om unga personer med långvariga sjukdomstillstånd. STEPSTONES-ConHD. Hjärtebarnet. Jan Volym 2016 Nummer 1.
  4. Bratt EL. Från barn till vuxen – pågående forskningsprojekt om unga personer med långvariga sjukdomstillstånd. Barnbladet. Dec 2015.

 


Presentations

Read more about STEPSTONES-ConHD in the presentation here:

http://www.stepstones-project.org/wp-content/uploads/2016/06/STEPSTONES-Presentation.pdf

 

Presentation by Ewa-Lena Bratt for the Pediatrics Academic Day 2016 (presentation in Swedish):

https://play.gu.se/media/t/0_ev43h9tf

 

 

Recommended literature

  • Sable, C., et al., Best practices in managing transition to adulthood for adolescents with congenital heart disease: the transition process and medical and psychosocial issues: a scientific statement from the American Heart Association. Circulation, 2011. 123(13): p. 1454-85.
  • Knauth, A., et al., Transition and transfer from pediatric to adult care of the young adult with complex congenital heart disease. Cardiol Clin, 2006. 24(4): p. 619-29, vi.
  • Baumgartner, H., et al., Recommendations for organization of care for adults with congenital heart disease and for training in the subspecialty of ‘Grown-up Congenital Heart Disease’ in Europe: a position paper of the Working Group on Grown-up Congenital Heart Disease of the European Society of Cardiology. Eur Heart J, 2014. 35(11): p. 686-90.
  • Moons, P., D. Hilderson, and K. Van Deyk, Implementation of Transition Programs can Prevent Another Lost Generation of Patients with Congenital Heart Disease. European Journal of Cardiovascular Nursing, 2008. 7(4): p. 259-263.
  • Hilderson, D., et al., The clinical impact of a brief transition programme for young people with juvenile idiopathic arthritis: results of the DON’T RETARD project. Rheumatology, 2015.
  • NICE Guidelines Transition from children’s to adult’s services for young people using health or social care services. (NG43). England: National Institute for Health and Care Excellence; 2016
  • Campbell F, Biggs K, Aldiss SK, O’Neill PM, Clowes M, McDonagh J, While A, Gibson F. Transition of care for adolescents from paediatric services to adult health services. Cochrane Database of Systematic Reviews 2016, Issue 4. Art. No.: CD009794. DOI: 10.1002/14651858.CD009794.pub2