Optimising the psychosocial care for individuals with birth defects in Europe by implementing an innovative training method for staff in health care and NGO settings.

IHEM Training Events 

In the final phase of this project the IHEM collaborating partners delivered training to a variety of healthcare professionals. The training utilised the project materials with the intention of increasing medical professional’s awareness of the psychosocial and educational challenges faced by children with a Cleft lip and/or palate.

As part of this activity, the Bulgarian Association of Facial Anomalies (ALA) organised events attended by at least 30 medical specialists including doctors (plastic and maxillofacial surgeons and orthodontists), nurses and speech therapists. The attendees found the materials very useful and believed that it had increased their understanding of the risks faced by children with a Cleft. They also expressed the wish that the material should be included in standard training programs for medical professionals who may interact with this population and other professional’s that provide support to those affected.

In Serbia, the Dental Clinic of Nis, Faculty of Medicine, University of Nis organised an event that was attended by 81 healthcare professionals (including a number of Dentists, Nurses, Orthodontists and students). The clinicians valued the training and understood it to have increased their ability to create conditions to ensure the best possible quality of life for patients with a Cleft. They also asked to be informed of future progress and developments in this field. The Serbian collaborators would like to continue and organise further dissemination events and materials to create more training opportunities and view the event as the first step in an ongoing and meaningful training programme.

Our Turkish partners, Marmara University Pendik Research and Training Hospital, arranged an event that attracted 49 participants from 21 different hospitals and clinics around Istanbul. This included a number of nurses, psychologists, a speech therapist, dentists and doctors with a variety of specialists. The training session was a lively, interactive affair which stimulated debate and discussion regarding what may be done to improve the quality of life for children with a Cleft. The materials were well received, participants demonstrated great enthusiasm for the content and felt it addressed an area that is traditionally neglected but is of crucial importance to patients and their families. They also believed that this training could be utilised to encourage and help implement patient centred holistic care.

In May of this year, Riga StradinsUniveristy in Latvia delivered the IHEM National Multiplier event. This was attended by sixty-five Healthcare Professionals from 12 different disciplines. The participants were impressed by and greatly valued the materials that have been generated in the project (leaflets and booklets). They understood these to be of a large practical value and thought it was important that they be easy to implement within and as part of standard care. They also expressed the opinion that this training would be of great benefit to those involved in the education system and for all those with responsibility for education and social welfare of young persons with a Cleft.

In Sweden, Universitetssjukhuset Malmö has a training event planned for October. This will be held in conjunction with the national Swedish Cleft Meeting. This annual meeting usually attracts clinicians from the six different Cleft Centres in Sweden including representatives of all different professions involved in the care of children (surgeons, nurses, orthodontists, maxillofacial surgeons, psychologists, social therapists, assistant nurses and speech and language therapists). Our Swedish partners look forward to this wonderful opportunity for education, dissemination and for receiving feedback on the material from those health care professionals’ whose practice it has been designed to assist.

Last but by no means least, Gareth Davies of the European Cleft Organisation attended the kick off meeting of the new European Reference Network for Craniofacial Anomalies in Rotterdam in June. This was attended by clinicians from all over Europe, all involved in Cleft and Craniofacial care. Gareth was proud to provide details of the IHEM project and received a number of expressions of interest regarding future training and dissemination opportunities. This is an exciting and strategically important opportunity to disseminate the project outcomes to a European Commission sponsored network and to extend the reach and impact of the IHEM project.


Pilot test in Serbia 

Have a closer look at one of the conducted IHEM pilot tests, click on the image.  



Meeting in Kristianstad, Sweden

The fourth meeting of IHEM took place in Kristianstad, Sweden, 4/4 2017. At the meeting, the results of the pilot testing of the educational material were presented and discussed.

The partners presented mostly positive results from the pilot, but the cultural aspect was a challenge in some cases. Clarification and cultural adaptation are sometimes needed for the material to be suitable for self-directed training. In the written material some wording and terms were difficult for the parents to understand. The oral presentation of the material, however, was easy to understand for the health care personnel.

Specific results from the different countries:

Turkey - Pilot testing in Turkey was performed with 16 health care professionals (dentists, physicians, speech therapist, physiotherapists) who were working with craniofacial anomalies and oral cleft patients. Trial and feedbacks showed a lack of information in this field and was therefore met with enthusiasm.

Serbia - Parents participating in the training had detected problems regarding low self-esteem caused by their different physical appearance and speech impediments. Teachers are poorly informed about the problems cleft-affected children face, most importantly those that can affect their academic achievements.

Bulgaria - Initially the HCP were pessimistic but their interest grew up when taking part of the material and modules. One of the identified problems is the work with the Roma population. It is challenging due to illiteracy of the Roma society, most of them do not speak Bulgarian.

Sweden – Pilot testing is planned to take place with personnel from the local cleft team but has not yet been performed.

Latvia – Pilot testing was performed with the local cleft team. The parents reported satisfaction with and usefulness of the developed written material – the booklet and the information letters. They also preferred to be informed in groups rather than individually.



The Winter School on Pediatric Rehabilitation of Turkish Society of Physical Medicine and Rehabilitation, Ankara-Turkey

Paediatric Rehabilitation Working Group was established in 2004 under the umbrella of Turkish Society of Physical Medicine and Rehabilitation.  The Group's objectives are to follow rehabilitation areas of medicine, and studies in the technical and social areas on these topics, as well as following innovations and publications. Another important goal is to contribute to the training, education, and studies of medical doctors, healthcare professions, technical and social workers. For this purpose, The Winter School on Paediatric Rehabilitation took place between 4- 6 December 2015 in Ankara, Turkey.  Dr.Evrim Karadag Saygı was invited as the keynote speaker for the Winter School on Paediatric Rehabilitation presented IHEM Project and its aims to over 100 doctors that attended the keynote. The feedback was very positive and generated a strong interest in the project.


IHEM Lecture in Istanbul, Turkey

Professor Dr. Evrim Karadağ Saygı- Marmara University Pendik Research and Training Hospital, Istanbul Turkey- gave a lecture in the programme called as an introduction to clinical practice about the psychological and social aspect of disfigurement based on congenital anomalies to the 2nd and 3rd undergraduate students of Marmara University Medical Faculty. Dr. Saygı’s presentation was titled “How to deal with disfigurement issues related to congenital anomalies? The way for holistic care approach” that was based on going EU Project “IHEM” and previous Project “FACE VALUE”.

Dr. Saygi also shared her experience of working in EU Project with different cultures. Over 100 medical faculty students attended the lecture and their feedback was very positive and generated a strong interest for both two EU Projects and their innovative approaches.


Intensive Care Nursing Certificated Training Programme

An education and training programme for nurses from different hospitals took place during 31st October and 9th December 2016 in Marmara University Pendik Research and Training Hospital. The nurses work in different hospitals around Turkey and they applied for this programme in order to get a certificate for intensive care nursing. The participants came from different cities such as Yalova, Uşak and Istanbul. On the last day of the theoretical training programme the supervisor of the training programme Nurse Elif Yokarıbaş, who works as a training nurse in Marmara University Pendik Research and Training Hospital presented the Project IHEM to the participants. The participants were acquainted with the objectives of the project activities and its stage of development and the feedback was very positive and generated a strong interest for the innovative approach and the developed training material.



The 3rd International Congress of the Turkish Cleft Lip and Palate Society

The 3rd International Congress of the Turkish Cleft Lip and Palate Society was held in Turkey, in the town of Konya, from December 1- December 4, 2016. Julija Radojicic was invited to give a lecture on the subject of the Implementation of European projects related to the care of persons with lip and palate clefts in Serbia. Aside from the completed project Face value, a special emphasis was placed on the IHEM project. The lecture received a strong positive reaction from the attendants at the congress, and the biggest interest was to learn about the outcome of the project. Besides that, the attendants expressed a desire to implement similar projects across Turkey. 




Meeting in Niš, Serbia

The third meeting for IHEM took place at Niš Medical Faculty, Niš, Serbia the 27th – 28th of September 2016.  The main focus of the meeting was to present the training modules and related material developed by Högskolan Kristianstad, the University of the West of England, Rogaland School- and business Development Foundation and European Cleft Organisation. The partners provided feedback and suggested modifications to the 1st version of the developed material.  Overall, the feedback was positive and everybody agrees this can be a very good training material.




2nd project meeting – Plovdiv, Bulgaria

The second meeting for IHEM took place at ALA, Plovdiv, Bulgaria on the 20th – 21st of April, 2016.

The partners presented their reports:

  • The following partners presented their Analysis and preparation - National reports, which address the medical complications and treatment in relation to educational achievement for individuals with congenital anomalies. The report will include informationhealth care workers or member of NGOs currently deal or identify these issues and how do these issues manifest themselves for migrants or other people changing cultural contexts.
    • Associatcia licevi anomalii
    • Faculty of Medicine University of Nis
    • Marmara University Pendik Hospital
    • Riga Stradins University, Institute of Stomatology
    • Lunds Universitet
  • European Cleft Organisation presented their based upon interviews with health care professionals about the impact of poor educational achievements in relation to orofacial clefting as an example how the impact can vary within Europe due to different policies, cultural and social norms from a perspective of a European NGO.
  • University West of England and HKR presented their Analysis and preparation - Psychosocial and Public Health Report based upon the medical and treatment aspects that can influences educational achievement negatively for individuals that are born with congenital anomalies and their families, especially focusing on oralfacial clefting. One section will address the potential consequences of unintentionally marginalised in educational, which substantially increases the risk of social exclusion throughout their lifetime.
  • Rogland skole og bedriftsutviklingsforening presented their Analysis and Preparation - a Pedagogical report based upon their extensive pedagogical experience in developing training curricula (learning outcomes) in relation to the European Qualification Framework in combination with ECVET and EQAVET recommendations.

In accordance with the project application, UWE, HKR and ROG will develop the first draft version of the training modules that will be ready for the meeting in Nis, Serbia 26/09/16 – 29/09/16.

Via a fruitful discussion between the partners is was agreed upon that the training modules will include the following:

  • Training modules based upon the psychosocial and public health report.
    • Especially focusing on the medical and treatment aspects that can influences educational achievement negatively for individuals that are born with congenital anomalies and their families, especially focusing on orofacial clefting.
  • Module on how to train health care professionals to train/educate parents.
    • Since the project is also focusing on that health professionals will train the parents in how to recognise symptoms that might affect their child’s educational outcomes. A section will be produced about the pedagogical knowledge that health professionals will need in order to train the parents.    
  • Booklet
    • A booklet will be produced that will contain information for parents about variables that can influence their child’s educational attainment. The information will be produced in a way that it facilitates empowerment as well how to recognise indicators – behavioural, cognitive and emotional – that could result in adverse educational outcomes.
    • Furthermore, a section on how parents can assist their child will be developed.
  • Introductory material to the teachers
    • This will be worded in such a way that it will not generate stigma for the child, instead one of the outcomes would be to prevent stigma.






The American Cleft Palate-Craniofacial Association

Martin Persson, the University of the West of England, was invited as the keynote speaker for the 73rd Annual Meeting of the American Cleft Palate-Craniofacial Association, Atlanta, USA - http://www.acpa-cpf.org/meetings/annual/2016/keynote.html

Martin’s keynote was titled “How to Incorporate Psychosocial Care Provision: The Way Forward!” that was based upon 3 on-going European projects, including Face Value (2014-1-UK01-KA202-001615) and IHEM (2015-1-SE01-KA202-012291).

Over 800 health care professionals from over 50 countries attended the keynote and the feedback was very positive and generated a strong interest for the innovative approach and the developed training material.



Kickoff meeting

The IHEM kickoff meeting was held in Malmö, Sweden at the Plastic and Reconstructive Surgery Clinic on the 4th of December, 2015. The partners introduced themselves and gave a brief background about themselves and their organization. Åsa Bringsén, HKR and Martin Persson, UWE presented an overall project overview with the specific objectives together with key deliverables. In a collaborative way, the partners agreed upon the specific objectives that need to be achieved until the next meeting. Then an overview of the management and quality assurance aspects, which included the following:  a) Cooperation agreement b) Time reporting c) Financial rules. The meeting ended with a general discussion about the project and deciding the dates and venues for the next two meetings.